The Life and Adventures of Six Little Monkies

Feeding Tube Awareness at OneTrueMedia.com

2012-02-11T09:36:00.002-07:00

How have you been raising awareness this week? What else could we do to raise awareness?

This week for Feeding Tube Awareness Week we have kept in contact with the school about our daughters changing eating needs, made some Tubie Friends, one to send out, and some to share with John Hopkins when we see them again on Friday.

We have also spoken with everyone we see about feeding tubes especially when they ask up about our kids stuffed animals with feeding tubes. They have been told about the benefits of feeding tubes, how they have saved the lives of our two kids, save the lives of many people every year, and will continue to do so. Here is our video on how feeding tubes have impacted our lives.

Make a video - it's fun, easy and free!
www.onetruemedia.com

Another video with 222 other families who all tube feed as well I believe made by the Feeding Tube Awareness group

Make a video - it's fun, easy and free!
www.onetruemedia.com

Finally Mailing the Duck

2012-02-11T09:14:00.000-07:00

As if waiting a whole day beyond when we found out we could mail the duck off to the toddler was a long time to wait (ok to a 6 yr old it is) we finally got to mail the duck off this morning to the toddler waiting for a Duck Tubie Friend.

Here is Ellie walking down the hall at the post office with both the duck and Mumble in her hands

Stuffing the duck in the envelope

Look who is in the back ground

All inside

Sealed up and ready to go. At this point someone from behind the counter asked what we were and if we knew the child the toy was being sent off to. She was really surprised that we do not know this child especially with how excited that Ellie was to send off the special toy. As we told them the story behind Tubie Friends and showed them Mumble and talked about the purpose of these they got really excited and told us they can't wait to see what other toys we bring in too send off.

Leaving with an excited child and only Mumble in hand. The duck has been sent "flying" to its new forever family!

100 Day List for Ellie

2012-02-10T15:09:00.000-07:00

Chantelle's 100 day list homework

I could carry 100 "papers."
I could not carry 100 "couches."

I could eat 100 "fruit snacks."
I could not eat 100 "ice cream scoops."

I could put 100 "skittles" in my cubby.
I could not put 100 "shoes" in my cubby.

I wish I had 100 "water melons."
I am glad I do not have have 100 "wolf spiders."

Medical Records being Copied NOW!!!

2012-02-10T08:36:00.002-07:00

I just got back from the military records office where I asked for a copy of all the records I had for her and all the records they have for her. The main records person who has been working with our family let me know the records are not in date order but she could get me a copy today. I informed her a copy today even out of date is awesome as we can take these records and place them in order ourselves so we have them ready to drop off on Monday.

The rush on getting a copy of her medical records is her pulmonary appointment that was supposed to be the end of next month is now next Friday. Yes that is Friday the 17th!!!! And this appointment is with the comprehensive team at John Hopkins. My afternoon will be spent placing 4"-5" of medical records in dated order. I am just glad the copies I have are already in date order (whew!).

Awareness Topic: Coping with Tubie Friends

2012-02-10T08:24:00.000-07:00

Some how I got my days and posts switched up so I am posting what I going to post from a prior day here. This is easily done with multiple apts in a week, having your life constantly turned upside side down with back tracking steps, and trying to fit everything that needs to be done plus fun into your life so the kids continue to love life. This fits here perfectly after last night and the pictures of Zach and Ellie helping make our first batch of Tubie Friends.

Topic: How is coping with a feeding tube made easier with a Tubie Friend?

Kids with Food Allergies states coping with a g-tube can be difficult for children. The site talks about several mothers who have performed “surgery” on stuffed monkeys with the goal to help make coping easier for their children. Once the surgery was completed the children learned about their feeding tubes, tube care, getting medication, and other treatments through medical play. These mothers have their children gained better coping skills because of their Tubey Monkeys.

Another such program Gabe’s Chemo Ducks started for the same reason. Back in 2002 Gabe was diagnosed with cancer, and his mother trying to help him understand what was going took a stuffed duck, added a chemo port, and through play he began to not only understand but found comfort in his medical toy. Eventually, this blossomed into a non-profit organization reaching out to hospitals across the nation.

Just like the mothers within Kids with Food Allergies and Gabe’s Chemo Ducks, as a mother I too have that creating Tubie Friends have helped my children learn to cope with their medical issues. For nearly eight years our home has been blessed to have Tubie Friends in our home. Our children have lovingly fed their babies and stuffed animals. We have made many Tubie Friends over the years. Our children have learned about tube and site care, feeding, button changes, giving meds, nebulizer treatments, other medical treatments. Our Tubie Friends have had sleep studies, IV’s, nebulizer treatments, blood pressures taken, hearts “listened to,” blood taken, and surgery.

When going into surgery the child sees their Tubie Friend being put under too then they wake up with their beloved Friend at their side. Their beloved Friend has “awakened” with them with an oxygen mask on just like they have. This helps to reduce fear both going into the OR and waking up in the recovery room. I have found the lengths that the Children’s Hospital staff goes through with these children amazing to not only make the children feel more comfortable but also confident with all the procedures and oftentimes invasive procedures they must face.

Tubie Friends have been found in the school classrooms, school nurse offices, with new caregivers, sometimes new doctors and nurses, home health nurses, and are wonderful teaching aids. They teach about the care of the child. Tubie Friends are often found with specific tubes, wires, ports, IV lines, feeding tubes, oxygen tubing, sleep apnea probes, pulse-ox monitors, anything and everything relating to the child.

When a child seeing their Tubie Friend with just as many tubes and wires as he or she has, they do not feel as different and gain confidence. This confidence is further gained as self-care skills improve concerning the tubes and wires all over the child. Nurses and care givers can have the child clean or “feed” their special Friend reducing anxiety levels. Doctors and nurses can use the child’s friend to explain in advance what procedure will take place. As the child gets older he or she can use their friend to explain to their friends what is going on and why they have so many procedures, tubes, and wires.

Because Tubie Friends have been such an asset to our family we have teamed up with http://www.facebook.com/tubiefriends to help other families get Tubie Friends as well. What is Tubie Friends?

Tubie Friends was started by a group of moms whose children have been or are currently using a feeding tube as a primary source of nutrition. We're currently working with several Children's Hospitals across the country to provide stuffed animals with feeding tubes to as many children as possible, preferably before they go in for surgery. We've seen what a difference something like this has made for our own kids and want to help make the transition from eating by mouth to eating through a tube as easy as possible. In addition to bringing comfort to the child, these "Tubie Friends" can also be used as a teaching tool for family, friends and caregivers.

This year I have three children that want to have Stuff a Toy birthday Parties so we can get stuffed animals with feeding tubes then donate some to John Hopkins Children’s Hospital and others to children for Tubie Friends through the Tubie Friends group. Our first party will be near the end of May, one will be on Halloween night, and one around Christmas. We are hoping to toss in a couple more parties throughout the year as well.

The kits we will be using will be from https://www.bdaybears.com/teddy-bear-and-animal-kits.html and will come complete with an animal, t-shirt, birth certificate, heart, and stuffing. While there are 24 animals to choose from we will likely give party guests only 1-2 animals to choose from making the purchasing easier for us.

Learning Self Feeding Skills Again

2012-02-10T07:06:00.000-07:00

This morning Ellie wanted to do her breakfast feed by herself so I helped her learn how to dump the formula into a syringe and watch it slowly go down. She had a blast doing this while she did her nebulizer treatment as you can see from the following pictures

Just love her eyes in this picture

Making Tubie Friends

2012-02-09T19:30:00.000-07:00

Making Tubie Friends

Today was a fun and exciting day for both Ellie and Zach. I had received 2 packages while the kids were at school. Of course Ellie was dying to know what was inside both. The bigger box was full of flat (dead) stuffed animals. Upon seeing them she asked all excited, Are those the Tubie Friends we have to fluff and stuff and make alive?" I let her know they were. Her curiosity got the best of her and she was bouncing off the walls to know what was in the smaller box. Also she just HAD to know if we were going to "fluff and stuff" the animals tonight. Originally the plan was not to stuff them tonight. But she was so bummed about not being able to eat dinner, yet so excited about the Tubie Friend Project and finally getting to "fluff and stuff and bring to life" some animals, that I could not tell her no.

The first thing she did was to take the 5 AMT buttons we had received and lined them up, then picked 3 unstuffed animals for tubes. She picked out 4 shirts, (we got 5 buttons, 5 extensions, and 5 shirts from AMT to use with this project). 1 button was going to replace the button that Ava chewed the middle out of from her penguin.

Thank you Ava we now know that the buttons are very solidly placed... A 2nd button was needed for our Dr Monkey, our display and explanation toy for the project. This toy will be used as we tell about the project and that the toys are coming with buttons, some are coming with extensions, and others are coming with buttons, extensions, t-shirts, and syringes. Every toy given out through Tubie Friends will have a MIC-key or AMT button, and either a g-tube, j-tube, jg-tube, in special circumstances we can add other items such as trach's or other medical devices that can be attached. We have one mother that has found a way to attach a port that is removable using velcro for her TPN/g-tube child. The possibilities are endless with these wonderful medical/teaching/comfort toys.

The other buttons went to a duck, lion, and unicorn. The duck is off to a toddler very soon where the toy will be greatly loved, the unicorn is off to John Hopkins Children's Hospital GI clinic, and the lion well he was claimed by our 7 yr old who had a feeding tube for 4 years.

Well I told Ellie where the big bag of stuffing was in the craft room and sent her off to find it. Within a few minutes I had a giggling bouncing 6 yr old come bounding into the dining room where I was already preforming "surgery" and adding buttons. With total excitement exploding from her entire body she took the first toy (the unicorn) and lovingly and carefully started stuffing this toy. Soon she was excitedly helping to stuff the unicorn. Zach was in and out as the lion was next ready. Later he came back to discover his sister had taken over the stuffing of the lion and was not happy about that. However, his unhappiness was short lived as he and Ellie finished up the lion together.

Once the duck was stuffed I stitched the backs of all three toys so they will not come unstuffed, then both Zach and Ellie playing in front of the camera with their Tubie Friends and the 2 they helped with as well.

Showing off in order Mumble the Penguin, the Duck off to its forever friend very soon, Dr Monkey, Pink Unicorn, and Brown Lion (still waiting to be named)

Unicorn is off to John Hopkins, and the Duck off to a toddler with a g-tube

standing with the duck

showing off the unicorn's button (not happy to learn she can't keep it)

Me: No Ellie you have Lilly doll with a button and Mumble with a button

Ellie: But MOM! I do NOT have a unicooorn! Pleeeease caaaan I keeeeeep it? I just really need a unicorn with button tooooo!

Ellie: No Ellie this needs to go to another child who needs a Tubie Friend, you have 2 already

Ellie: But mom! I seriously do not have a unicorn yet, please can I keep it? It is pink and so cute and so soft!

....and the tears flowed yet again tonight (sigh)

trying to hide her tears and heart break for the camera

just to cute

holding all the toys at once, her arms could barely hold them all

Both Zach and Ellie with all 5 toys

and the silliness and fight for the camera begins

and the camera focused on Ellie and Mumble here...

had to fix the shirts and extensions to "stop the leaks"

just hanging out for the camera

peek a boo ducky

peek a boo Ellie

see that button hiding there

look at those eyes

Dr Monkey reading a felt x-ray

felt x-ray and button shot

Finally getting the much needed supplies

2012-02-09T13:07:00.000-07:00

Just spoke with the John Hopkins peds GI clinic again today (I think this makes three times today alone) and they have been able to help sort out the supply mess with Apria!!! We finally have supplies AND formula coming for Chantelle. They are supposed to be here tomorrow! For right now she is staying on the Bright Beginnings Formula, however she may get switched back to the Neocate, we will see how this works for her being only on this. I really wish we could do the blendarized formula diet for her, however, right now we do not have a Vitamix, the only blender that will mix the formula in small enough particles that it will be able to go through her feeding tube.

Also we are in the process of switching her button from a mic-key to an AMT to trial her on that brand and see how her body reacts and responds to it. We are hoping for less infections, granulomas, and other issues. This shipment should come with 2 buttons, then each month after that (unless we have to use our spare button) we will get one button.

Day 5: Awareness in the Medical Community

2012-02-09T06:39:00.001-07:00

Friday, February 10^th

Topic: Why is there a need for greater awareness in the medical community? Explain a situation where a clinician did not understand the impact of tube feeding. (The goal here is to point out that awareness is needed among all audiences. Certainly there are clinicians who are well versed and expert in this area however; there is a need for basic knowledge among a wider range of medical professionals.)

Feeding tube awareness among the medical community is important because sometimes physicians do not see the big picture when it comes to learning to eat. While this process is natural for most children to learn. Others find learning to eat nearly impossible. Why? Because 31 facial muscles and 6 cranial nerves are required to produce each swallow.

Are feeding problems physical, psychological, family, functional, or disability related disorders? Feeding problems impact the whole child, at the cognitive, physical, and emotional levels. Additionally, the family is also affected because the parents have to deal with and siblings are marred by the gagging, retching, choking, and battles with every meal.

Very few within the medical community understand the pain and strain families face when a child has a functional feeding disorder. Few understand complex and frustrating process required in getting unwilling children to eat, or the complex interdisciplinary team required. When a child truly is terrified to eat parents must employ the pediatrician, nutritionist, occupational therapists, psychologists, speech and feeding therapists who are also trained to handle and work with oral-motor/sensory/behavioral/and medical issues, additionally the team may require social workers to coordinate the team, and a nurse practitioner.

Why such a complex team to hopefully teach a child to eat? Eating is an essential skill that is required survival and proper development. If the child does not learn to eat and gain proper nutrition development delays will increase, decreasing the chances of living a normal life. Additionally, parents become more worried and the child becomes more uncomfortable.

The cost of a child with a feeding tube is expensive, and there are very limited resources for families of children with feeding issues.

The approximate cost of the average child with a feeding tube and specialty formula can run upwards of $40,000 or more if there are complex medical needs. The most common reasons to have a feeding tube placed include congenital birth defects of the mouth, stomach, trachea, or esophagus, swallowing disorders, breathing/swallowing coordination problems, aspiration issues, or lack of adequate nutritional intake. These may cause short-term or permanent feeding tube placement. The goal is to increase the nutritional intake to a healthy level to improve the overall quality of life. Finally, the determination of the length of time will be determined by level of medical needs.

One situation we ran into with an ER team and the lack understanding regarding our son and g-tube issues. He had g-tube accidently pulled out. We had been informed by the GI team (just over a 90 minute drive) that if his tube had ever come out there was a short window of time to get the feeding tube replaced. As soon as we realized his feeding tube was missing we found his button, called the peds office. Unable to fit us in, we were instructed to take him to the ER for quicker replacement.

Upon registration we let the ER staff know what was going on, including that our son had a latex allergy. Finally, two hours later (well past the 30 minute window) we were being called back to a room. By this point his stoma was almost closed. We informed the ER nurse that our son was 100% feeding tube fed and we were now 90 minutes past the 30 minute window to get the button back in his stoma and that we had never replaced a button before as the button was still fairly new as he was under a year old.

Again we sat in the treatment room, this time for another 90 minutes or longer. But this point my frustration turned to anger as I had informed every nurse who stopped in that our sons stoma was closing tighter and tighter and we needed to get a button. Finally, the doctor came in took a look at his stoma, then left and took his time coming back. At this point I was beside myself as they returned with latex gloves, q-tips, and a foley catheter. I did not argue against the gloves as I was not willing to wait for them to track down latex free gloves.

However, furious and in tears as they pried open the stoma using the q-tips, lidocaine gel, eventually the foley catheter was able to fit into his stoma. We still had to take him to the GI team the following day where they had to open the stoma more due to our ordeal in the ER. However, the GI had better medication so our son was not screaming the whole time. We were also sent home with a larger foley incase his button popped out again to prevent the stoma from closing. We were also sent home with latex free gloves to keep on hand ensuring he was not handled with latex leaving rashes again.

Changing Eating Habits...

2012-02-08T20:45:00.000-07:00

Well we made it through our first day with new eating habits for Ellie today. During the appointment today I am not sure she really understood what the doctor was saying when she said "primary nutrition via feeding tube, NPO for liquids, all meds via feeding feeding tube, and limited fun foods orally, but 100% tube fed until further notice."

I let her eat her lunch that we took with us as the drink was thickened knowing this would be her last actual meal for some time now. By dinner time she was starting to realize what NPO meant and that meant through her feeding tube. Well her "dinner" was thickened with some baby cereal to help make it more filling. However, one nice thing was that we were able to give meds and do her breathing treatment at the same time as her feeding. Poor girl was so tired though and was falling asleep by the end of the breathing treatment. So I let her go to bed and we finished her nebulizer treatment while she slept.

This new eating style will take some getting used to for her (and us) as we are going to have to make sure she does not sneak especially drinks to try and get her lungs to heal up...

Thursday Topic: Attitude and Perceptions

2012-02-08T14:39:00.001-07:00

Thursday, February 9^th

Topic: How has your families and friends attitude and perspective changed towards tube feeding. What has awareness of the positive benefits done to change perceptions?

When I first learned our youngest son would be getting a feeding tube I was scared more about the tube sticking out of his little body than the first surgery. I was frightened due to the “what if’s.” What if I accidently pulled out his feeding tube, what if I could not change his button, what if I… and the list went on and on.

There were other concerns I had too. Babies were supposed to be fed with a bottle or from mom not through a tube. Babies were supposed to be burped not vented through a bag or a syringe. Would my baby ever be able to burp once they wrapped the stomach around sphincter? What would happen if he got sick and needed to vomit? What would his body do? Just to many questions left my head spinning that first night he was in the hospital and I had been told he needed not only a g-tube but also the nissen.

Not only did I start educating myself about the procedures, cares, and what to do when I brought him home afterwards. However, what I was not prepared for was the on the spot training after his surgery, being sent home and left alone to deal with my child’s new way of feeding.

While the new feeding methods did not take long to develop a routine, the sudden surprises would keep up on our toes. The tummy venting that exploded like a volcano out and over the syringe. Getting him out of bed in the morning or after naps only to discover the feed went to the bed not his stomach. Discovering the extension was closed when trying to push formula or medicine and have everything explode all over the couch, wall, floor, and ceiling, leaving kids looking shocked the giggling hysterically.

Then came the blendarized diet with many of the same experiences. First the blendarized diet formula was to thick causing explosions everywhere. Sometimes something would get stuck in the button or extension and the pressure backup would cause an explosion causing kids to explode. Other times we would find the other kids in a food or water fight using the feeding tube syringes, explaining “but mom they shoot so far and well.”

With two kids with feeding pumps and our youngest with other medical devices we discovered quickly we were killing strollers to quickly so we purchased a radio flyer wagon with rubber air filled tires. With our wagon very similar to the wagons found at the Children’s Hospital of Colorado especially after we added an IV pole (ours was detachable, theirs permanent) we decided to paint our wagon so it would not be confused any longer. We also made one side detachable giving a portable seat if needed.

The benefit to the wagon was that we could lay the large oxygen tank down sideways still giving both kids plenty of room to sit in the wagon. We also rigged a place to put the pulse-ox, apnea monitor, hang both feeding pump back packs, while making both kids comfortable. We also had rigged a large golf umbrella to the IV pole giving shade during summer months when in Utah, California, or Colorado as we have traveled regardless of the kids medical issues.

Having kids with medical issues have changed our families perspective to be more accepting of anyone regardless of their situation. Having had to live in the Ronald McDonald House as a large family has made us grateful for our house and able to accept any living condition. When having to live as a large family in the Ronald McDonald House as a large family you have only one room. It is much like camping but you are living in a hotel sized room as a family of 8.

Having children in and out of the hospital you discover you can have a picnic anywhere. A picnic on the hospital lawn in a good weather a treat, in bad weather a picnic in the lobby, in the exam room, or even on a hospital bed can become an adventure. You learn to make every day an adventure.

Children of families with a medical child/ren learn not to make comments that rude or deeming towards other families but supporting instead. Your children learn to accept everyone. They not only accept, but they offer to play with, help, read to, and become friends with children with medical issues because they have learned to look beyond this.

I have seen this with my children personally. They look out for those typically considered the underdog. They help them at school with their homework. They help them with getting to and from classes if needed. They are friends to them. They stand up for them and do not let others make fun of them because of their looks.

Having lived at the Ronald McDonald House and having been at Children’s so much our children have been exposed to so many different children. Being a military family they have been exposed to all races. This combination I feel has made prepared them to be more caring. Then add in our religion and that we are teaching the children from a very early age about charity and the importance of service and serving others. I pray the children the children not only grow to develop a strong testimony of Christ, but become strong Members of the Church of Jesus Christ of Latter Day Saints with a desire to keep serving their entire lives.

New Team for Ellie

2012-02-08T14:35:00.000-07:00

We met with our new ENT at John Hopkins Children's Hospital today and I really like this team. For the first time we have a comprehensive team for children like her. We talked about Chantelle and her issues, symptoms and, the temporary relief she experienced after her laryngeal cleft was filled in Colorado. The relief lasted for a while but with the last few months she has been choking and gagging more with foods and liquids. According the the ENT this is consistent and normal with laryngeal children like her.

However, here at John Hopkins they use a shorter lasting repair. This puts the children in surgery every 3 months because if they wait 4 months the children are in trouble and having severe aspiration issues. The team here uses a comprehensive team approach and uses speech, feeding, GI, pulmonary, ENT, and other specialists to ensure all the needs of the child are met.

At this point Chantelle has been moved back to all tube feeds until further notice to allow for her lungs to heal. She has been on prednisone to many times and had bronchitis and to many lung issues from aspiration as well. Going back onto all tube feeds should allow for her lungs to heal, this in turn hopefully will also allow her to grow and gain weight better. Additionally they are going to run a full genetic testing panel to try and determine what exactly is causing her complex medical issues.

Also getting in with this team will get her pulmonary appointment moved up. Although better is this pulmonary specialist is one that deals specifically with children with laryngeal cleft and aspiration issues like her. While the other one is great with children, they feel this doctor will suite her needs better. Finally, with this team in place these doctors all meet regularly and know the kids and their needs.

Academic Achievement Awards Ceremony, Elementary School

2012-02-07T06:51:00.000-07:00

Hey there Corbyn

Found Jairon in the group of kids

We see you too Ellie!!

Zach with his class just waiting for things to start

Ellie's teacher and the principal

Hey there friend!!

Ellie's class with their awards

Zach's teacher

Peek a boo!

Jairon's teacher

I did it!!!!

Jairon's class their awards

Corbyn's teacher

Look what I did!

Corbyn's class

Daily Life with a Feeding Tube

2012-02-06T22:22:00.002-07:00

Tuesday, February 7^th

Topic: Understanding life with a feeding tube, explain a day in the life and daily routines of tube feeding and all that is required.

What is a day like for our family? Back 4 years ago we had two children on feeding pumps and special formula. I would end the day mixing the formula for the next day needed for both children and place it in the refrigerator. The formula would be mixed the night before because it had to be mixed in hot water to have the formula dissolved enough to not plug the feeding pump bags or the extensions. Mixing the concentrated Neocate in hot water then leaving in the refrigerator overnight would prevent clumps in the formula. With two children on the same formula and same concentration was nice because I was able to mix what was needed for both children.

Using a plunger pitcher I could easily remix the formula before dumping into the feeding pump bags, prime for each feeding, load either IV pole set up or the backpack and hook the child up for the feeding.

Both children would get hooked up to their extensions typically at that point using latex free band aids as this would allow for the extension to be woven through easily and removed as needed. Later we were given a prescription for duoderm and tagaderm allowing for the extensions to be taped to the skin without tearing their skin apart.

Both children also had meds that had to be crushed. I would crush Zach’s meds, mix with half water half applesauce then give his meds, then repeat the process with Ellie. Zach only had a few meds and took his meds a couple times a day. Ellie on the other hand at one point was taking meds either crushed pills or liquid every few hours. She had many meds so using a chart, and the calendar function in my cell phone in the medicine cabinet we were able to keep track of the meds and doses.

Now with only Ellie having a feeding tube her typical day starts with her hopping in the shower, then she gets a sinus rinse, her nebulizer breathing treatment (during her nebulizer treatment her hair is done for school), followed by her acapella vibrating treatment. Once this is finished she get her Flovent via her spacer then her nasal sprays. The next step is to either check her feeding tube extension and tagaderm or replace the extension and tagaderm if needed.

Next we do her morning meds. If she is in the mood for oral meds we take then via her nectar thick liquids otherwise we crush the meds and push them through her feeding tube. Finally, she is able to eat breakfast, then brush her teeth, while her lunch for school is made, and her feeding pump is prepped and primed for school. With this finished up she gets her socks and shoes on, puts her lunch in her backpack. Finally ready for school her feeding tube backpack is placed on under (or over) her coat (depending her mood for the day), hooked up to her extension, set, started, and finally she puts her regular backpack on. (Yes she wears her regular backpack over the feeding tube backpack because she wants to). At this point, she runs out the door with her brothers to catch the school bus.

After lunch she sees the school nurse for a mask so she can play outside when cold or windy to help protect her lungs. After recess she returns to the school nurses office for another breathing treatment and to have her lungs listened to before returning to kindergarten.

Immediately upon returning home from school she has another nebulizer treatment followed by another acapella vibration treatment while doing her homework, playing a game, or watching a movie with her friend after school. Once this is done she is free to play (still wearing her feeding pump backpack, filled up with more fluids if needed).

Her back pack is removed just before dinner and plugged in to charge for the next school day. With dinner ready she will eat her fill of dinner. Once night time chores are finished it is now time to get ready for bed. Part of the bed time routine is to do the final sinus rinse, nebulizer treatment, acapella lung vibration treatment, flovent, night time meds, brushing teeth, get her pajamas on and head to bed. Once again, if she is in the mood she will take her night time meds orally with thickened liquids wither water or gatorade, if not then we crush, mix with thickened liquid and push through her tube.

Saturday and Sunday we follow the same routine except instead of heading off to school she gets to watch movies, play outside, play games, play computer games, and take naps in between her treatments and helping with chores.

Why Did or Do Our Children Have Feeding Tubes?

2012-02-06T06:31:00.000-07:00

Monday, February 6^th

Topic: Why did Zach have a tube, what medical conditions have resolved?

Post a highlight of the medical conditions that required feedings.

Zach had an ng-tube in the NICU. Then when Zach was 6 weeks he had surgery for his feeding tube. He got his feeding tube for several reasons, he had a very high metabolism and we were looking at potential open heart surgery to correct a VSD in his heart. What is a VSD? VSD stands for ventricular septal defect or means a hole in the heart. Due to the severity of his VSD we were looking at a four step open heart surgery to correct this defect. So they placed the g-tube to help him get the needed high calorie formula to help with healing.

In a healthy heart the blood low in oxygen returns to the right atrium (side of the heart) travels to the lungs then get the needed oxygen, then return to the left atrium (side of the heart) then is pumped through the aorta out to the body into the smaller vessels of the body. Children with a VSD have a hold in the in the right and left sided pumping chambers or the ventricular septum. This hole allows the blood with and without oxygen to get mixed up causing extra noise. This extra noise is heard in this sound is what doctors call a heart murmur.

Due to this his body required extra calories. When the doctors did surgery for his nissen wrap and g-tube placement they discovered he had a hernia that needed immediate repair as well. Within six weeks of his nissen and g-tube surgery he was back in surgery once again to have his hernia repaired. Due to being a preemie this hernia repair I guess is quite common.

Luckily for him at three months of age the next round of heart scans and tests showed the heart murmur was shrinking so we held off on heart surgery for three more months to see of his heart would heal itself. We did not want three major surgeries in less than three months if this was not needed. By six months he was back in the OR this time for tubes in this ears due to severe reoccurring ear infections, and his heart continued to improve so that surgery was held off…

By the time Zach was four he had eight surgeries and none on his heart. The final one was for a granuloma that had attached itself to the main artery just over his heart and he was getting his feeding tube removed around this time as well.

He had been diagnosed with a VSD, GERD, granuloma, FTT, and today is completely an oral feeder. He has minimal issues in school. He struggles with reading and writing yet does the best he and is determined to read at the same level of everyone else in his class.

Why does Ellie have the tube now?

Post a highlight of the medical conditions that required feedings.

Ellie had an NG-tube while in the NICU then again at a couple months old for a short while. Her NG-tube was short lived as she refused to keep the NG-tube in and went to a g-tube really quickly.

She spent most of her two years in the hospital as the doctors struggled to pinpoint what exactly what was going on with her. When she was just a few weeks old her first re-admission to the hospital we dealt with her coding due to severe apnea and reflux episodes. That first stay she remained back in the hospital for an additional three weeks. She came back home for a couple weeks then returned back to the hospital. This pattern repeated for the next 2 ½ years. By the time she was 2 ½ she had spent at least 16-18 months in the hospital.

Diagnosis list:

Laryngeal malcia, severe GERD, FTT, protein allergies requiring special formula, developmental delays requiring OT/PT/ST, feeding therapy, sensory integration disorder severe, idiopathic chronic lung disease, fully oxygen dependent

She has had a nissen fundoplication to correct her GERD and g-tube for feeding

Daily use of pulse oximeter to monitor heart rate and oxygen levels, apnea monitor, 24/7 use of oxygen, g-tube, no oral feeds,

At 1 year of age this is what we had to do for her:

Track all feeds, O2 levels, all apnea/bradycardia spells, all meds, all alarms, awake/sleeping periods, skin colors, cyanotic episodes, striders/rhonchi episodes

At nearly 2 yrs of age her diagnosis list was:

laryngealmalacia, (possibly still bronchialmalacia and trachealmalacia) Severe GERD, FTT, protein allergies requiring a special formula, developmental delays requiring ST/Ft, oral aversion, sensory integration dysfunction, chronic ear and sinus infections, chronic lung disease, small stomach, subglottic stenosis, aspiration issues, small ear canals, small ear drums, small optic nerves, cranial stenosis, mild microcephly and seizures

spontaneous desaturation episodes without apeanic episodes, and is still 75% feeding tube fed and oxygen dependent

Daily use of pulse oximeter to monitor heart rate and oxygen levels, apnea monitor, 24/7 use of oxygen, g-tube, no oral feeds,

Track all feeds, O2 levels, all apnea/bradycardia spells, all meds, all alarms, awake/sleeping periods, skin colors, cyanotic episodes, striders/rhonchi episodes

Surgeries and procedures added include: Tonsil and Adenoid removal, Bilateral PE tubes, broken wrist, several bronchoscopies

At 4 years of age her diagnosis list was:

laryngealmalacia, laryngeal cleft, Severe GERD, FTT, severe protein allergies causing autonomic shutdown, oral aversion, sensory integration dysfunction, chronic ear and sinus infections, chronic lung disease, asthma, small stomach, subglottic stenosis, aspiration issues, small ear canals, small ear drums, small optic nerves, mild microcephly

Bronchoscopies, both hard and soft, lung and sinus biopsies,

By age 5:

temporary laryngeal cleft repair, daily use of green acopala lung vibrator

Near daily use of feeding tube and pump

At 6 years of age her diagnosis list is:

laryngealmalacia, laryngeal cleft, GERD, FTT, severe protein allergies causing autonomic shutdown, sensory integration dysfunction, chronic ear and sinus infections, chronic lung disease, asthma, small stomach, aspiration issues, small ear canals, small ear drums, small optic nerves, mild microcephly

Currently she has had 10 surgeries, to many hard and soft bronchoscopies to count, 2 or 3 lung biopsies, 1 sinus biopsy, monthly button changes, 1 temporary laryngeal cleft repair, is back to daily feeding pump usage, most liquids via feeding pump, minimal oral liquids if thickened to nectar thickness.

Feeding Tube Awareness at OneTrueMedia.com

2012-02-05T12:19:00.001-07:00

Feeding Tube Awareness Week www.feedingtubeawareness.org is this week, and I have updated the montage. I will continue posting each day on specific topics on our journey over the past eight years with two kids with feeding tubes.

While Zach had his tube removed when he was about four Ellie still has her feeding tube and is being used daily right now. Our life has been forever changed due to these vital medical devices. Our children's lives have been greatly improved, and our families perspective has been forever changed.

Throughout the next week more of our story will be told once again, in addition to some of the little things we are doing to try and help make the lives of others around us better who are just entering this journey.

Make a video - it's fun, easy and free!
www.onetruemedia.com

What would be different for my child if tube feeding was better understood?

2012-02-05T00:02:00.003-07:00

To better understand this question let’s first explore what exactly tube feeding is and how one is tube fed. When tube fed the individual receives all his or her nutrition through a feeding tube. This is also known as enteral nutrition. Enteral nutrition simply is a way to provide nutrition to the body using a tube either through the nose called a nasogastric or ng tube or through the skin into stomach. Feeding tubes through the stomach are either gastrostomy or jejunostomy.

Gastrostomy or g-tubes are placed through and endoscopic procedure after the doctor makes a small incision through the stomach and stomach wall lining. The feeding tube will be placed to help secure the stoma site and promote healing. Surgery for the feeding tube placement is approximately 30-45 minutes. Once completed if a PEG tube is placed the PEG tube will be secured to the abdomen with tape, and gauze placed around the stoma to help collect drainage. While in the hospital the nurse will help change the gauze then the dietician will help teach you how to change and clean the area. Daily cleaning with soap and water is necessary. The Dietician will also teach you how to eat through the new feeding tube using the new prescribed formula. Finally, the care needed for the new tube will vary based on medical conditions.

Once healed up the PEG tube may be removed and replaced with a short tube such as a MIC-KEY or AMT button allowing for an extension to be attached as needed for feedings. If continual feedings are needed one may receive a jejunostomy or gj-tube. This tube starts outside the stomach and has a long tube that runs directly into the midsection of the small intestine. This tube delivers continual drip of food and medicine and typically last longer than the typical g-tube. Gastric feeding tubes can be both short style or PEG style for enteral feeds.

When receiving tube feeding there are three feeding methods.

· Gravity Feeds- Gravity feeds can be done using a gravity bag or syringe. With the gravity bag the formula is premeasured and the bag hangs allowing the formula to drip or flow through the tubing into the stomach. When using a syringe, again the formula is premeasure and slowly poured through the syringe and the extension or PEG tubing allowing the formula to flow into the stomach.

· Syringe Feeds- Using a syringe the formula is premeasured, pulled into the syringe, pushed through the extension or PEG tubing into the stomach.

· Feeding Pump- When using an electronic pump, the formula is moved through the tubing at a preset and controlled rate. Common enteral feeding pumps include Kangaroo, Zevix, and Infinity Feeding Pumps. Additional enteral pump brands include Patrol, Flocare, and Seepex Extranet.

Feeding rates also vary based off individual need.

· Bolus feedings are similar to eating a regular meal. Larger portions are given over shorter period, and given several times a day.

· Continuous/drip feeds are given at a slower rate and over a longer period. This is reserved for individuals unable to tolerate larger volumes.

· Combination feeds are given for some. For example some may not be able to handle liquids yet can eat solids so liquids are given via the feeding tube. Or others are given bolus feeds during the day and continuous feeds at night to help with weight gain.

Before the usage and medical intervention of feeding tubes, the inability to eat or drink was a serious and life threatening issue. Now this technology impact has improved the lives many people each year. People of all ages, infants, children, adults, and the elderly get feeding tubes and for many different reasons, but all are related to an inability to eat or drink. The feeding tube whether nasal or permanent will stay in place until the individual can eat normally.

How has this knowledge have made life different for our family as we embarked on our journey when the first feeding tube was placed early July 2004 then again in 2005?

When I first learned my son was facing surgery for a feeding tube this knowledge would have been very helpful. However, for our son he was not only facing the PEG placement surgery but also the Nissen fundoplication surgery as well due to severe reflux. This procedure is done because the valve between the stomach and the esophagus is too weak to keep the stomach acids inside the stomach.

At the age of six weeks our son hand the laparoscopic nissen fundoplication or nissen wrap done to reduce his reflux symptoms, then he had PEG placement surgery for enteral feeds. This surgery combination took several hours.

The process for the nissen was to detach the upper portion of the stomach from the spleen, repair the hernia, make an incision around the valve, and wrap the upper portion of the stomach around the valve then stitch in place. The goal is to wrap just tight to secure the valve and prevent the valve from moving both directions and only allowing foods and liquids to only flow into the stomach not back out.

Once the stoma site had healed up the PEG tube was removed and MIC-KEY button was placed in the stoma. Within a few years our son had learned to eat orally and was able to have his g-tube removed and the stoma closed.

October 2004 our youngest was born and also had an NICU stay. After a six week stay we to the Ronal McDonald House for ten days, finally we were allowed to take her home. A few weeks later she was back in the hospital again with severe breathing issues. At this point we discovered she too was having severe reflux issues. She was scheduled for an emergency nissen wrap. At that point while I pushed for the g-tube placement she only had the nissen wrap and was sent home. When we left the hospital this time we left thickening her formula using rice cereal in the haberman bottle.

Shortly after moving to Colorado our daughter had completely stopped eating and developed a phobia towards oral feeds. By this point the only time I had been able to convince her to eat was when she was sleeping and did not realize she has been eating. This time after a swallow study it was proven she was aspirating and all liquids had to be thickened at honey thickness using Simply Thick. We continued to use haberman bottles and started trying to use other bottles as well. During the first hospital stay in Colorado they place an ng-tube which she learned very quickly how to pull out.

At first the staff thought I was removing the ng-tube due to how tiny she was and how many extreme treatments she had in the NICU. At this point it was still expected that she would have severe cognitive delays. The nurse came in replaced the ng-tube, moved the tape from her bed and was preparing to set up the feeding pump. With a huge smile on her face, and a squeal, looking directly at the nurse she grabbed the ng-tube with her pinky finger and purposefully removed her ng-tube while kicking her feet. This process happened 4 times within the next hour. The nursing staff decided that continuous feeds would not be best for her and that she would have an ng-tube placed for each feed and she would have to be placed on a papoose board for each feed. The first time they tried only tying only her hands, but this resulted in her using her toes to remove the ng-tube. Something the nursing staff had never seen before. They left laughing and made arrangements for her to have her g-tube surgery ASAP as it was clear this child would not tolerate the ng-tube period.

Additionally, during this visit when they brought the formula in for the feeds to fill the bag they had to bring the formula in a cup not a bottle as they normally did as she had such a bottle phobia if she would have such severe panic attacks she would actually have tachycardia spells to the point they thought she was starting to code. Her blood pressure and heart rate would rise so high and fast that her O2 levels would plummet and they would have to crank her oxygen levels for a bit. At first the doctor did not believe this was happening until the nurses had the team in the room with a very happy baby and simply walked in with a bottle. All chaos broke out as she nearly coded simply from the doctor trying to get her to drink from a bottle. Later in the day while she was sleeping she had a great feed until she woke up to discover she was drinking from a bottle with the bottle in the doctor’s hand. As the doctor tried to coax her to drink more her reaction grew stronger to the point that the child life specialist had to step in and make the doctor stop before she did code on the team. After that it was approved through the insurance for the Simply Thick, g-tube placement, and home based speech/feeding therapy. With no medical reason to keep her in the hospital until her surgery her dad and I were refreshed how to place and remove the ng-tube and she was released.

For the next couple days we placed the ng-tube for each feed, then sterilized the ng-tube after wards for the next feed as we were only given two ng-tubes to last for three days and all her feeds

After her surgery she first got the PEG-tube and was finally able to get the much needed continuous feeds she desperately needed. We also were able to stop thickening liquids for a short bit. The best part with getting a feeding tube is that our daughter could finally be fed without having panic attacks.

For our kids the feeding tubes have brought a freedom in their lives and allowed them the ability to eat and grow as needed. They have both been able to gain the needed health to endure both procedures and surgeries they both required. The feeding tubes have also increased their overall mental health and self-confidence while teaching both children they can gain control over what they can put in their bodies..

Why Awareness is important to my family.

2012-02-04T09:25:00.001-07:00

Feeding Tube Awareness Week

Topic: Why Awareness is important to my family.

Awareness is an increased ability to understand a situation or set of events. Being aware of a situation allows one to observe and react in the appropriate manner. While many things in life cannot be changed, simply being aware of the surroundings can allow an individual to better if there is problem and successfully develop a solution. This process happens because individual experiences retrain internal neural pathways, repaving new belief, behavior, and perception passageways for the brain. These new passageways later lead to new expectations, emotions, thoughts and assumptions as the process of increasing awareness recreates both the past and the future.

One huge advantage to gaining awareness is the ability to learn how others feelings, emotions, actions, and choices affect their lives. The awareness grows as one becomes a watcher and observer to the life of those they have chosen to follow. However, sometimes the act of following another is not a consciousness choice, but one of necessity. The witness is unaware of the journey they are about to embark on and are feeling stunned, numb, shocked, and unaware of road they must follow.

Being unaware of this path has effects on the individual or family as well. One may continue as if on auto pilot unconsciously following blindly down the path not knowing what emotions, thoughts, or even believes they currently have. If this path is blindly followed as if on autopilot, then life will simply happen without regard to individual or family thoughts, emotions, feelings, or actions.

However, the beauty of awareness is learning and growth. Awareness leads to new internal presses, thoughts, assumptions, and beliefs. New awareness and thought processes are best learned through practice and taking an active role to better understand the situation or set of events facing an individual or family.

How does gaining an increased awareness for feeding tubes, feeding tube benefits, care and use of feeding tubes, and the typical routines involved with feeding tubes benefit the individual and family? Gaining an increased awareness benefits the individual and family in many ways because a support system is developed, one becomes more aware of his or her body, as a group, individually and family wise all will learn more about the processes involved, and finally, the ability to choose to accept this lifestyle becomes easier.

The process of Feeding Tube Awareness has been essential for my family because nearly eight years ago I was beginning this journey. I was treading the well-worn path of others however; I was embarking on this journey feeling stunned, numb, shocked, and very unaware of the journey ahead of me. I was unaware of the future for my son. I lacked a support system, was very uncomfortable with the emotions and nerves of the situation. I was scared more about the aspect of tubes sticking out of my child’s body than I was of him going into surgery. I lacked confidence in myself and my abilities to care for a child with a feeding tube. How would I be able to handle this task?

This thought was utterly frightening for me. How could I manage this task as normal babies drank from a bottle not a tube or a feeding pump? Normal babies were burped by being held and patted on the back, not having a tube a syringe attached to the stomach. Babies are supposed to be burped not vented. During this point so many things seemed wrong and out of place.

In May of 2004 our youngest son was born and started his life in the NICU. He came home without his nasal feeding tube for a few weeks. However, unable to gain weight and facing surgery he had his g-tube placed at a few weeks. Then October 2005, we would start this process again with our youngest child, however, in a much more complex process.

As we started the process once again I thought I was prepared, but discovered quite the opposite. The medical issues we faced with our son and our daughter were vastly different. In addition, our goal was to have the medical supplies out of the house before having another child. This was NOT in the Lord’s plan. His plan was to bless us with our littlest princess long before his medical issues would be resolved. We were to be blessed with two children with feeding tubes at one point, and two children facing multiple surgeries. This time in our lives would test our resolve, inner strength, and teach us that we did indeed have the strength, energy, and would someday become an advocate for another new parent just entering the path we were now following.

Feeding Tube Awareness at OneTrueMedia.com

2012-02-03T21:18:00.001-07:00

Feeding Tube Awareness Week is coming up and over the next week I will be posting little posts each day about our journey over nearly the past eight years with two kids with feeding tubes.

While Zach had his tube removed when he was about four Ellie still has her feeding tube and is being used daily right now. Our life has been forever changed due to these vital medical devices. Our children's lives have been greatly improved, and our families perspective has been forever changed.

Throughout the next week more of our story will be told once again in addition to some of the little things we are doing to try and help make the lives of others around us better who are just entering this journey.

Make a video - it's fun, easy and free!
www.onetruemedia.com

Coughing and Rashes...

2012-02-03T09:53:00.001-07:00

Well kids are still coughing...Zach was sent home again yesterday from the cough and vomiting. Dr M thinks his cough is causing him to throw up. Good news is Both Celidah and Zach are finally on the med with their coughs.

However, with Ellie she developed a granuloma under her new mic-key button. We started treating the granuloma right away and that has already receded however she now has another rash that is spreading around her buton site. I took her in to see Dr M today and he is thinking she may have a MRSA infection around her stoma site.

The rash she has looks like a bunch of mini-granulomas around her stoma. The first couple days of treating the granuloma we did not notice much of anything then suddenly the rash appeared and has been spreading.

Over the next couple days we have watch to make sure the skin does not become inflamed between the layers, or the bumps become filled with pussy liquid. If either of these happen then we have to take her straight to the ER and let them know we suspect a MRSA infection.

Also Ellie is still mostly using the feeding pump for all her liquids until further notice. We are waiting to see what ENT says about her laryngeal cleft, and pulmonary says about her reoccurring lung infections. Once we have had those appointments we will have a better idea about what is going one and will be able to get a good game plan in place for her.

Update on Ellie

2012-01-31T07:56:00.000-07:00

We have once again reached a point with Ellie where her cough is just not getting and her poor nose is so goopy that her nose is driving her crazy. The good news is at this point she is not running a fever so she is able to attend school still. However, some of the steps are having to take with her now include wearing her mask outside to try and protect her lungs a bit better from the cold. She is back on all thickened (nectar thick) liquids, and the primary fluid intake is via her feeding pump for now. Ellie is also requiring regular breathing treatments at school so we are looking into whether or not she needs an acapala breathing device for school use as well. Currently she only uses it at home after each xopenex breathing treatment. The question though is whether or not she should also be doing this after her neb treatments at school.

So far academically she doing well in school, however as the winter progresses I am hoping that she does not miss more school. We built into her 504 plan to allow for the additional absences she would require both due to her lungs and for the additional appointments she requires. To help her teachers sends something home for her everyday she misses allowing her to get at least the most important parts of her kindergarten day completed at ho,e to help prevent her from falling behind.

Cub Scout Pack Meeting

2012-01-25T22:03:00.000-07:00

Yes Cub Scout pack Meeting and New Beginnings were scheduled on the same night. Poor Jairon and Zach (soon to be a Cub Scout) all confused came to get me to join them in Cub Scouts and were so upset that I was staying with the girls and that Ellie was staying with me as well.

Frank got pictures from the Pack Meeting. I will try to get either him or the boys to fill the gaps and describe was happening in the pictures soon...

New Beginnings

2012-01-25T21:44:00.001-07:00

Arise and Let Your Light Shine

The Mutual theme for this year is Let Your Light Shine. Tonight the Young Women had the annual New Beginnings program for the girls. One of the things I really liked that they did was to have each parent pick out a flower that represented our daughter/s and then write up a brief paragraph describing why we felt that flower best described our daughter/s.

Jade waiting for the program to begin

Celidah sitting with her friend

Ellie with her new Tubie Friend who had to have a sweater so she would not be cold...

For Celidah's flower I found a drawing offline I liked to use. The flower I chose for Celidah is the Pansy.

The Poppy was picked for Celidah because of her imagination. Dr. Seuss once said, "I like nonsense it wakes up the brains cells. Fantasy is a necessary ingredient in living, it's a way of looking at life through the wrong end of the telescope. Which is what I do, and that enables you to laugh at life's realities." Celidah has an amazing imagination which will take her to amazing places one day.

This is a Rosebud I drew a while ago using watercolor and is also the same flower I picked for Jade.

The Rose Bud was chosen for Jade due to the simplicity and beauty. While the rose bud has yet to fully bloom, this flower is very pure and lovely. This flower represents Jade because she puts her soul into whatever skill she is working on learning. Jade does all she can to bring out the beauty, grace, and purity found within. Through her determination, hard work, and perseverance, this drive will allow Jade the opportunity to become whatever she desires in life.

Tubie Friend

2012-01-25T21:09:00.000-07:00

My cousin has a group that is making and donating Tubie Friends to children with feeding tubes. Well Chantelle has had her Ellie doll since she was tiny. In fact this doll started out bigger than she was and when she got her doll they were about the same size. This doll has been through the ringer with Ellie. The doll has always had a feeding tube. While Ellie was oxygen the doll had its own nasal canula as well. At one point the doll the had the feeding tube, nasal canula, pulse-ox, sleep apnia probes, then after her sleep study the doll came home with cardiac stickers everywhere as Children's "hooked" her doll up her a sleep study too. She would NOT let those stickers be pulled off so eventually months afterwards we finally had snuck the last cardiac sticker off the doll with her realizing it.

Today she was SO excited to help make a new Tubie Friend for herself to take with us tomorrow to show to her new GI team at John Hopkins Children's Hospital to see if we can help get some of these friends spread around this area too. Here are some pictures from making her new Tubie Friend today.

pushing the button made unusable through the toys belly and "blood" as she calls it

Ellie helping find the feeding tube stem and drop a washer on the button stem

picking the perfect tie down

bending the stem and securing the button, washer and tie down in place (this combo makes the button useless, and washer keeps the bent stem of the button in the new friend)

last step take a few stitches under the button on the top and bottom to make sure the fabric is secured

pull the strings in the back (Build a Bear left this step undone for us and told me how to secure and finish the toys) and tie in a good knott

All done!!!

(see the monkey playing peek a boo? that will be the next toy we add a button to) All done! see the new Tubie Friend? Oh and one little princess getting so big who is so proud of her work and helping with her new friend.

Yes holding both Friends with a tube and one waiting for a tube...

Not sure the exact name on this new Tubie Friend yet as it has already gone through 5 names since yesterday.... Laying beside Lilly doll... Lilly is decked out with an extension because I used her to teach the school nurse out to attach an extension to the button and how we tape Ellie's extension down for school due to PE. Even with her Belly Bands I may have to still use this method as I am not happy her extension was not secured when she came home from school...

Ellie in love with both her Tubie Freinds...

Busy Day Today...

2012-01-25T20:47:00.000-07:00

Today has been a very busy and LONG day. I started the day by working with a pattern for a belly band for Ellie for school to make activities easier. We also did a button change for her at the school with the school nurse today.. Ellie's "job" was to "teach" the nurse how to change a button. With the use of the book I made for her she helped feel more comfortable with the process and relaxed for her button change.

Normally for a button change Ellie would be so tense and nervous for the change that by this point she would already be starting to freak and cry. However, today she put on her bravest face possible. She talked the nurse through the whole process and only giggled. The steps she normally tenses the most about I was able to distract her and not let her realize what was happening until those steps were done. Pulling the old button out and putting the new button in have been the hardest for her.

However, today she decided that the old button being pulled out tickled in a silly way. Then going in also tickles in a silly way. Funniest was when I had put in the new button and I asked her what step was next, she responded with "duh mom, you put the water in now..." Once I reminded her that we were teaching the nurse she giggled and told me, "oh yeah." After that the nurse asked her "how much water do you put in your button?" At this Ellie held up two fingers and told her "two, you take the water out, you put the water back in, two times the water." We both giggled at her response knowing NOT to reuse the old dirty water and also the button needs 5cc's or 5mL's of water. I love the perspective of a 6 yr old.

The best part was once we had her button changed, the feeding pump primed, and ready to go and her extension set, she was ready to go to class and all full of smiles. She also left the nurses office so excited because she had been so very brave, her bravest ever as she put it, (not mention giggling that she got to go to class with a hunch under her coat, the feeding pump back pack).

Coming home from school she was even more delighted because not only was she brave at school but she also got to have TWO candy canes! She got one for being so good in the nurses office, and a second one for being so brave (for her) and not screaming, crying, kicking, but instead doing a wonderful job and giggling.

Bone Marrow Biopsies for Corbyn today...

2012-01-24T17:50:00.000-07:00

Well today was a very long day for us. We had to leave the house by 8am this morning in order to get Celidah to a friend's house for a birthday party. Then I had to get Corbyn to John Hopkins Hospital (JHH) for his bone marrow biopsy.

We arrive and I start checking him in and am informed we have a co-pay that must be paid before he can be registered and admitted for the procedure. Knowing this was NOT right I asked if they were sure about that, of there were new TriCare rules that had just changed. Well unrelenting on the copay I called our TriCare case manager to find out from her if we had a copay or not. With a solid I asked if I could put her on speaker phone to let the registration desk know about that. With the case manager also saying no copay, they decided it was a matter that needed to verified before he could be fully registered and checked in. So we were sent to wait until a verification on the copay had returned.

Finally about 15 minutes later they let me know I was correct and there was indeed no copay. With this we finished the registration and admission process for the biopsy.

At about 11 they called us into the waiting area for Corbyn to get dressed in a gown and all the final stuff done before his biopsy. Thank goodness the delayed registration process did not delay the procedure. They took him back, placed his IV, and put him to sleep.

He ended up with a bilateral punch biopsy today because one hip would not allow for the aspiration of any bone marrow. The second punch gave all that was needed. He is excused from school all week. We also had to stay just a tad bit longer due to them needing to make sure he was handling the pain from the biopsy and able to eat and drink. Finally, he was happy to be allowed to leave and go home.

So far Corbyn seems to be doing ok as long as he does not walk or move to much. Getting home was an adventure though. I had to stop by and get Celidah from a birthday party, then as we were pulling to the final stop sign that would get us home two MP's sped past with only lights no sirens. They split up and went right into our neighborhood.

As soon as I got close to home I could tell the largest cluster of MP's and MP vehicles was on my street. Others we walking with dogs and spotlights. They were clearly searching for something or someone. I as I arrived to the MP vehicle blocking our street I had to wait a few minutes to allow him time to come talk to me to verify I lived on the street and had valid reason to be there.

Just returning for John Hopkins Hospital with Corbyn (I still have the bracelet all parents have to wear) from his biopsy, I simply explained I needed to get him home. With his questions as to where we had been in the past couple hours I simply let him know I was just returning home from a day At JHH with my son who had a bone marrow biopsy and needed to get him and rest. He took note of our address, moved his car and let me proceed home. As I was driving by I heard the name of one of neighborhood kids being called and realized that we had a missing child.

Of course my first question to Frank upon getting home was "Are all the younger kids in the house and accounted for?" Puzzled he said yes so I told him about what we had seen. As soon as I mentioned the name I had heard to told me to go back and talk with them because she had just been at our house to play with the kids about an hour before. However they were finishing chores and getting dinner so she could not stay and play.

When the officer found out she has been at our house several times to play, he asked for my younger kid to come and talk with them so they could discover more playmate houses. My boys were able list off a bunch of names of kids they knew she played with, with that information the officers then taking some of the older kids with them to show them each the kids houses. It was due to the kids being paired with the officers that they found the little girl as quickly as did.

I am SO glad this little girl (Zach's age) was found safe in a house here on base and this was not a kidnapping situation. However, what made this so strange is this little was found on a street different than her bike. We are thinking she may have seen a dog, dropped her bike, and took off running as this child is terrified of dogs.

2012-01-21T17:12:00.000-07:00

Pictures from what we woke up to this morning... Oh and for this area this is all it takes for EVERYTHING too be canceled!!! So not what we are used to coming from Colorado (the land of snow)...

Rabbit Step???

2012-01-21T13:32:00.000-07:00

Yesterday the 3 younger kids had to see Dr M for the cough their asthma has flared up and is not going away. After talking with him about the duration of the cough with all 3 kids and how often they are needing their breathing treatments he noticed that all 3 kids had swollen nodes in their throats, and had ordered a rapid strep test to make sure we were not also dealing with strep throat. We discussed how this was unlikely as none of the kids had been dealing with fevers or really complaining of soar throats (except for Jade).

As it came time for the kids to be tested we decided to have Zach tested first, then Ellie, the student would do Jairon last. As we were discussing the order all of a sudden all confused Ellie asked why a rabbit was needed. Puzzled, Dr M told Ellie, nothing is rabid, they are doing a rapid strep test. Rabbit? Why Rabbit? Not rabid, rapid, Dr M replied.

At this suddenly Ellie jumped off the table got a fit of giggles and and started jumping around the room. At this Dr M looked at me really puzzled, then started really laughing as Ellie looked at him said "But why a rabbit step? I already have the bunny hop down? Do I have to have my throat tickled again when I seriously can do the bunny hop like this?"

Suddenly her questions and his questions were NOT making sense to each other. We explained again that they were testing for bugs in her throat for strep throat, or a very bad sore throat, and had nothing to rabbit steps, or bunny hops, and the only way to test was to tickle the back of her throat.

More pictures of Ava...

2012-01-15T17:38:00.001-07:00

More puppy pictures

Look at that bone she is trying to chew on...one day she will be way bigger than that bone. Bug for now it is way bigger than she is... Oh and this crate too, yes she will barely fit in it...

Just look at that cute face

learning to go down without falling or rolling down the stairs

those tiny paws barely hang over the edge right now...

Soon she will stand well above Zach's knees, not halfway to his knees...

First Full Day Home

2012-01-11T21:20:00.000-07:00

Today was the first full home with the puppy and she did much better. Once all the kids left she was not quite sure how to handle the house being so quiet. This was a great time for me to spend time with her. We played, walked, I brushed her. I discovered which she likes and which one scares her. She loves the wooden brush with soft bristles yet hates the one with the short metal bristles.

Eve (her nick name) did so much better eating today and had very few accidents in the house. She has conquered running up with minimal falling up (or down) the stairs now. However, she is still terrified of going down the stairs. Once the kids started coming home from school she was really happy because got to play even more.

Part of my day once again was spent rearranging and cleaning more to make sure she did not get cords, or other things we do not want chewed up. For now I have rolled up the carpet that Frank bought while in Afghanistan as she has decided that rug especially is perfect for chewing on.

She has discovered that some of the bigger dog toys from before she still likes and will try to play with or chew on. We have this HUGE cow bone that was not used before and I was holding onto to either give to someone else with a dog or in case we got another dog. Well now that we have a puppy she has decided this bone is not to big for her. The funny thing is, this bone is way bigger than she is and will not move when she tries to tug and pull on it. LOL this I know will not last as there will come a time when she will be able to pick a bone this size up and carry it where ever she wants.

She has also started chasing balls. If we gently toss the ball and call her as soon as the ball is in her mouth she will bring it back. If we call her before the ball is in her mouth she will grab the ball and plop down and try to chew on the ball, or pick it up and try running away further.

Watching her run is funny as her coordination is still lacking. Also Spirit is not leery of the dog and is now more curious of this new creature. When she is sleeping he will actually walk by not realizing he is walking by. Then if he suddenly sees her there he will jump off to the side. He has come up to her several times today to smell and investigate her. Also a couple times when Eve went into the kitchen he would walk down the hall and lay on the floor in front of the door where he could watch what she was doing or going to do.

Overall a very good day and all are starting to settle into the new routines.

Our Newest Family Member

2012-01-10T18:14:00.000-07:00

Meet Evelyn Margaret our newest family member. She is a pure bred German Shepherd puppy and is about 8 weeks old and AKC registered. She is such a sweet heart and already LOVES the kids. The funniest part about her right now is every time she eats or drinks she looks around and whines with every bite looking for her brothers and sisters as she is not yet used to being able to eat alone. She is used to having to fight for every bite of food.

By the way look how tiny she is for now...

For right now she can fit under the bed and under the futon. However, Spirit (the cat) is not sure what to think of her. Earlier today he stood his ground and swiped while hissing (yet did not touch her) yet she let out the loudest yelping and crying. One would have thought he had tried killing the poor puppy. She had no idea how to react to the cat.

She has now learned that when this cat arches his back, puffs out his fur to get back and back away. She still yelps and whines and cries. Funniest is this cat is big, but when arched and fur fluffed he is like a porcupine and looks SO much bigger than he really is.

Well after playing and working on figuring out how to climb the staring the new puppy dog Evelyn Margaret is soundly sleeping in her crate that for the moment is so very big for her. However, this crate will soon be barely big enough for her. We are already working on the crate training with her so she learns that is her sleeping spot.

MD Raven's Play What Now???

2012-01-09T19:35:00.000-07:00

ok it is very clear tonight that we have not exposed the kids to much in the way of sports. Zachariah was sent home with a homework assignment to draw a picture of the MD Ravens doing something football related. What he has created is them winning a football/baseball/soccer cross miss match kinda game.

Sigh... I guess to complete the miss match all he needed was lacrosse and golf in there too...

Christmas Day Presents Part 2

2012-01-02T11:23:00.000-07:00

With 6 kids the presents and pictures add up fast, here are but a few of the pictures from Christmas Day...

Enjoy...

oh look new shoes and just in time mine are already getting ripped out!

oh look I now have my own kitty!

oh an Uglies book!! Now I just need books 1-3!

oh look a game!

Sweet a Nerf gun! one more for our collection!

Oh look Zach I have a kitty too!!

I am a knight now..watch out I have the Nerf Sword, mwuahhhaaa!!!

I got ya!!!

hey look a perfect fit!

cool Legos!!!

Celidah! I got my own horses!!!

What is this?

Mom!! I have my own art set!!!

a transformer!

Sweet Zelda for the Wii!!!

Corbyn I got legos too!!!

What is this?

Open it Celidah! open it hehehehe!!!

Celidah: "A tiger striped rock?"
Jade: "yes from the WA-DC field trip"
Celidah: "You got it for me?"
Jade:"I thought about you when I found it"
(dialog between Celidah and Jade)

Both girls loved the thoughts and gift Jade hand made the wrapping paper and Celidah loved the thought and rock from her sister (I love spontaneous moments like this at Christmas)

and Jairon got a puppy for Christmas

oh the dreaded noise making ball shooting fire truck every little boy wants for Christmas

and another bigger puppy for Christmas

something else to create with

a tiny kitten

long shirt perfect to wear with her jazz pants at school

Yes another book set American Girl book set with a game

Another animal for Ellie

BIG game set for Zach

another outfit for Jade

Fuzzy Tinkerbell Socks!!!

Dress shoes

another dress

a dress with pockets

another shirt

more art stuff

oops a bit excited, tore the cover...

look another plaid shirt..perfect to go with his current plaid shirt collection LOL

AWESOME MOM!!! I got candy making stuff!!!

SWEET more candy making stuff!!!

an old angel ornament from my aunt

clothes pin doll from Nana that has become a tree ornament

also from my aunt

another ornament from my aunt

Christmas Day Pictures Part 1 Stockings

2012-01-02T10:47:00.000-07:00

Here are the stocking pictures from Christmas Day

Ellie is really annoyed that she has to sit and wait for Zach to get out of the shower before her stocking can be emptied. How dare we make her sit and wait...

Yes "Santa" was good to the kids once again in the stocking departmant this year.

Celidah patiently sitting and waiting...

Jade in awe and wondering what all is bursting from her stocking...

Jairon is so ready to open and empty is stocking....

I just love this picture of Celidah

Ellie in instant love with her newest bear for her collection...

Jade in love with her newest pair of toe socks...

Already playing with their new Beyblades... Gotta play before eating LOL...

The other side of the table opening and getting ready to play with their new BeyBlades too!

Happy New Year!!

2012-01-01T21:24:00.002-07:00

Happy New Year!!!

Last night is the first time as a family everyone stayed up to see the clock click over to midnight. We spent the day watching movies and playing games on the Wii. Last night we played Aggravation, In a Pickle, and Pass the Pigs all new games for the kids.

Aggravation is a game a friend recommended that we get so I did for Frank’s birthday. On his birthday Jade had a blast making a cake for daddy, wrapping the present, and the 5 younger kids spent a good portion of the day creating the small felt toys they so carefully and loving made for their daddy.

Pass the Pigs came just after Christmas from Nana and Poppy. Poppy picked this game out for us and the kids loved this game too. What makes this game special for us is Frank and I had this game when we first got married. While I was in labor with our oldest we taught the OB staff how to play the game and they all played the game off and off with us until labor really progressed. We also played this many times after that until it eventually got lost in one of our military moves.

In a Pickle is a game the Celidah picked out for Corbyn for Christmas. This game is similar to Apples to Apples, with the exception that the cards are placed in a line (or a pickle) and the words on each card must go from smallest word to longest word. The person who places the longest word at the end of line wins that row of cards.

The kids also LOVED a surprise (to them) Skype call from Nana and Poppy. This was a real treat for them as they commenting on how much they were missing their Nana and Poppy this year and had not spent enough time with them. Now through Skype the kids will have the opportunity to see them much more often now thanks to the technology of the internet. In December they got to see both sets of grandparents.

Last night shortly before midnight Jairon had to ask us what happens when it becomes midnight…Well, we told the kids it would be bedtime for all. At this Jairon was stunned and replied “what we have to go to bed after it turns midnight and becomes 2012? But I thought that is when the partying started?” We informed him that no, it would be bedtime and asked what we had been doing all day long. “Well, just playing games, watching movies, eating lots of fun foods, and getting ready for the party to start…” At this with a chuckle we reminded him the day had been filled with the fun foods, games, movies, and activities as it was a day of partying and celebrating the New Year coming in. Not to mention the fact that we had to go to church the next morning.

What is crazy this year is the fact that Celidah will be old enough to get her learners permit for driving, Corbyn will graduate from primary and move into the Young Men’s program, Zach will be baptized. The kids are growing up on us so fast. Ellie is the only left in jr primary now.

Celidah and Jade will once again be Youth Team Captains for Relay for Life. We are praying this year proves to be kinder on the family than 2011 was. While we were greatly blessed, we also had some great challenges to overcome to get those blessings.

So as we move into this New Year, into 2012 my hope and goals for the year are to keep improving as a family. Help the children continue to develop more love and charity towards each other and for others. To remember the joy found through service and expand on what they have done before to stretch their horizons and find new ways to serve others and give back to their new local community. As it is through service for others that we find ourselves especially amid trials and struggles.

I hope to help instill a stronger love of Christ and the Gospel in each child and help their individual testimonies grow. The goal is for each to have a strong testimony and know for him or herself, without a doubt that the Gospel is true, and will guide and direct them in their lives. Additionally, to watch their love for the Savior grow.

Is Being Mormon Becoming Cool?

2011-12-30T07:00:00.001-07:00

Is Being Mormon Becoming Cool?

There was a time in my youth and even shortly after being married when being Mormon was not cool to be. As a member you lived your life in a way that you would not stand out to much even though you already stood out. However, today we are lucky to live in a day in the United States where our children can be glad they too are Mormons.

We live in a time of technology where Mormonism is found all over the place on the internet. One can log into YouTube and view pages and pages of Mormon messages, the church has the Strength of Youth Media messages, First Presidency Messages, Youth, Relief Society and General Conference Sessions are available to listen to, watch, down load, read, CES Devotionals, Christmas, Easter, and Seminary programs are all available to watch online as well. This does not even cover the magazines and additional tools the church has made available to those seeking them.

The First Presidency Message for this month is the Choice to Be Grateful. We are commanded to be grateful in all things. I know for our family this past year has been filled with many trials. The hardest trials have persisted since August. As President Eyring states,

it is not easy to be consistently grateful in all things in the trials of life. Sickness, disappointment, and loss of people we love come at times in our lives. Our sorrows can make it hard to see our blessings and to appreciate the blessings God has in store for us in the future (Eyring, 2011).

The Challenge for us is to remember and count our blessing while we have them. When one loses a major (or minor) blessing in life, suddenly the realization of the lack of gratitude becomes apparent.

There is so much in this world to be grateful about and one of the greatest things is the fact that being Mormon is becoming cool today. I came across another blog post where P.Diddy has quoted Tom Perry by posing “One of the greatest weaknesses in most of us is our lack of faith in ourselves.”

I was then directed to Howard Chua-Eoan’s story posted in the Time Specials called Top 10 Religion Stories 1. Religion of the Year: Mormonism. This is one of the last things I expected to see especially in Time Magazine. While a short paragraph on the church, this short story talks about Mormonism, yes, the Church of Jesus Christ of Latter Day Saints is becoming an “innately American religion [and] has become even more a part of the mainstream American fabric.” Also discussed is how our church “has always been the religion of the future — demographically, organizationally, fervently. Well, the future is now, (Chua-Eoan, 2011).

Then we turn to the Gallup Polls.

These results are based on a Dec. 15-18 USA Today/Gallup poll. In 1946, Gallup first asked Americans to name, without prompting, the person they most admire living in any part of the world. Since 1948, Gallup has asked Americans to name separately the Most Admired Man and Most Admired Woman, and has done so each year except in 1967 (when only Most Admired Man was asked) and 1976 (Gallup, 2011).

So what makes this significant? If you look at the list notice who is number 10 in the list….Yes our prophet, President Thomas S Monson. Again something I never thought I would see in my lifetime. My kids really do live in a blessed time where it is cool to have a living prophet on the earth. Not only is it cool for the kids to have a living prophet, but one that is considered to be one of the most admired men in the world.

For our family a simple or minor blessing has been the simple act of eating. For years we have struggled with our youngest and her inability to consistently eat or drink. While frustrating, this has never been a major concern for us. She has been blessed with a permanently placed feeding tube.

However, in August my body decided to go rouge when it came to absorbing, digesting, and accepting food and nutrients. At first we figured this in a time would pass. Here we are now almost into January, and my body is still rogue with its food tolerance choices. The doctors are becoming as frustrated as I am. The kids have gone through several phases by this point. At first they just ignored the fact that mom was not eating, next they decided to try and force me to eat, now they have come to the acceptance that I just can’t on most days even if they do not like it.

The youngest on the other hand has her own method for handling what she sees as a situation gone bad. She keeps insisting that I drink milk as that has always been the rule for her. If she does not eat she has to drink her special milk. So therefore, mom too must drink her milk if not eating and will try and force me to drink milk.

Throughout this time period I too have experienced a range of emotions. At first I was not worried as I knew this would simply pass and I would be fine shortly. However, as time passed and the ability to eat did not return, I realized I did indeed miss the simple blessing of simply feeling hungry and being able to eat when one desired to. During Halloween not eating did not bother me as I had just returned from a week-long stay in the hospital and was still very sick. By Thanksgiving I was annoyed I was not allowed to cook, yet relieved as I was still feeling very week. Then came Christmas and there was some anger and great disappointment due to not really being able to eat.

The blessing in each of these holidays is the fact that I was home with my family. The frustration is that every time I have eaten I got sick afterwards. For Christmas I was blessed with the strength to cook the Christmas dinner everyone else enjoyed and I even enjoyed a few bites here and there.

Although what have we learned through this experience to date? One dropping clothing sizes is really nice in many ways. Eating really is a social event. Holidays are based not only around friends and family, but also around the joys of cooking and eating of food with each other. When one is unable to eat, one needs to strive to find other blessings present. Games and conversation are a brilliant distractor.

Chua-Eoan, H. (2011). Time Specials called Top 10 Religion Stories 1. Religion of the Year: Mormonism. Retrieved December 30, 2011 from http://www.time.com/time/specials/packages/article/0,28804,2101344_2101371_2101382,00.html

Eyring, H.B. (2011). The Choice to Be Grateful, Retrieved December 30, 2011 from http://lds.org/liahona/2011/12/the-choice-to-be-grateful?lang=eng

Gallup. (2011). Barack Obama, Hillary Clinton Again Top Most Admired List, Retrieved December 30, 2011 from http://www.gallup.com/poll/151790/Barack-Obama-Hillary-Clinton-Again-Top-Admired-List.aspx

http://beinglds.blogspot.com/2011/12/when-being-mormon-wasnt-cool.html

Kids making Tiny Toys for Dad for his Birthday

2011-12-29T15:02:00.002-07:00

Happy Birthday Dad!!!

The kids have had a BLAST today making tiny toys out of felt for daddy!!! They have had fun learning how to sew and be creative at the same time. Here are they tiny felt toys they have been sewing by hand for their daddy today...

Chantelle making a doggy for daddy

I love her choice of green beads for the eyes and an orange bead for the nose...

Jade's sailor pup

Corbyn's ram

Jairon's alien

Zach making a polar bear for daddy

Chantelle had so much fun with her puppy for daddy that she had to make a polar bear as well. Here is her polar bear she made.

Playing with new "Tiny Toy" patterns

2011-12-27T14:32:00.002-07:00

I have a couple new pattern books for toys. These two toys are for felt toys. The bear is about 4" tall and the Babushka doll is is about 3" tall. Both took only a couple hours each and are completely hand sewn and made from felt and both have beads for accent. The joints are the bear are attached with buttons and are movable.

When Chantelle first saw and got the frog her first question was, "where's the lilly pad?" LOL now she is waiting for me to make a lilly pad to finish off the frog as frogs "must have a lilly pad to be home and happy." The silly little princess...

Christmas Morning Gifts

2011-12-25T10:21:00.000-07:00

This morning started today bright and early with the kids opening their stockings. They LOVED the breakfast setup. The stocking s this year were to heavy to leave hanging so they found them laying on the table in their normal seating areas.

The table was set with dishes completely ready for dinner also ready for breakfast. The main difference this year was due to the stockings being left on the table we placed their cups in the bowls and the silverware in the cups due to the limited space. The kids loved the Christmas Tablecloth cover.

The fruit tray was left on the counter top this year instead on the table. They loved the cantaloupe, honeydew, oranges, apples, bananas, watermelon, pomegranates, pretzels, single serve dippable Nutella treats, (teddy grams for Ellie) single serve cereal boxes, single serve milk boxes, Capri Sun Juice packets, raisins, all over the table for breakfast and snacking through lunch for the kids. We also have crustless mini muffin pumpkin pie bites for the kids to munch on as well.

This setup has become a Christmas tradition for our family allowing for a later Christmas dinner without the kids feeling like they are starving to death.

The kids were SO excited opening their gifts this morning. The gifts they most loved were the books of course. Once the kids saw The Inheritance Cycle by Paolini, ALL four of the older kids started jumping up and down and screaming. They were also very excited about the Hunger Games Trilogy by Susanne Collins, The Circle Cycle Ted Decker. Additionally, Jade got The American Girl Series for Kaya to include a built in board game, and the first three books in the Warriors Series, and the 4th book in the book in the Uglies series. Now we have a list of other books the kids are asking for. The are asking for more Warriors and Uglies books.

The funniest part about the books is the kids were smelling the books and then Celidah declared that someone needs to create a new book perfume, because new books are the best smelling things ever. At this Jade, Corbyn, and Jairon all agreed that new books are the best smelling and best feeling things ever in this world.

It did not take long at all for The Inheritance Cycle to be opened up and the 4th book removed from the collectors case. These books are hardback and I got the kids the collectors edition because I know not only will they read them, but take care of them. Celidah had looked away for quick minute to see what her brother was doing and her father had snagged the book and ran into the kitchen with her newly prized book.

Within seconds she realized the book was missing. With a wild giggle she ran in pursuit of her father to retrieve the book she wanted to start reading. Soon they were giggling and laughing as they were tackling each other in the hall over the book. Suddenly the chase started up the stairs and into the rooms. Within minutes Celidah had retrieved her book and loudly and proudly proclaimed "HAH!!! The book is now MINE!!" as she then bounced down the stairs with a huge grin and a giggling father bouncing behind her...

She won this battle for now and is happily reading her newest book in our massive collection book collection. I am so happy to have a house full of book worms that love reading. I do not mind the fact that I had to clear shelves and place books I knew the kids had not been reading in a short while to make room for more incoming books for Christmas to fill those empty spaces after today. I do love that each of my children have gotten the same love of reading their Nanna and Daddy have.

Just a quick run down of the kids other most favorite gifts from today...

Jade was so funny as Celidah was opening her gift from her field trip to Washington DC. She was just as excited as Chantelle was last night. The silly child was bouncing out of her skin and so very excited. The best part was watching the two girls with both reations. Celidah's excitement building based off Jade's expanding excitement as Celidah got closer to the carefully and skillfully wrapped gift inside. Finally, once inside, Celidah discovered all the excitement was over a simple shiny rock with light tiger like striping. How I love the excitement of children bubbling over their siblings reactions to what is hiding inside...

Jade is so excited with her drawing and art supplies and candy making supplies, Celidah is most excited about her Wii games for Okami and Legend of Zelda, Corbyn is most excited about getting the Skylander Spyro Dragon game and his lego toys. Jairon is most excited about his Nerf toys. Zachariah is most excited about his Smokey the Fire Truck Starwars toys. Chantelle is super excited about her animals.

Now that the kids have opened their gifts and are happily playing and snacking again our Christmas dinner is cooking and will be ready here in a few hours. The nice thing is with most of the prep work done in advance, very little actual work has to be done today. Left to do is having the girls make the fresh bread for today, I will finish the stuffing, toss the roasted veggies in the oven, the slow roasted leg of lamb is already cooking, the gravy will be one of the last things to make once the lamb is finished.

Here in a few hours we will be sitting down at the table enjoying our family dinner talking about our favorite memories over the past year.

Christmas Eve Traditions Unchanged

2011-12-25T08:20:00.000-07:00

Christmas Eve traditions in the house held strong even though the kids were given the option to allow for change this year.

Yesterday was a busy day as I prepped the Christmas Day meal so little cooking prep would be needed as today is also Sunday. This prep drove the kids crazy as the smells floating throughout the house made them very hungry for the roast lamb yesterday. Yesterday I made the pumpkin and apple pies, cut half the bread into small squares, seasoned the squared and slowly browned and dried the bread crumbs and cubed squares in the oven for stuffing today. The homemade stuffing is to allow for me to eat even a small portion of stuffing.

The leg of lamb has been sitting in the fridge marinating over night again with a gluten flour mix of spices over night ready to be slowly roasted today. The potatoes and vegetable mix again also pre-cut, mixed together, tossed with oil and spices, covered with foil and sitting in the fridge and waiting to be tossed in the oven once we get home from church today.

Then last night we watched Christmas Story a Finish based story of St Nickolas, an orphaned child who becomes the towns child, then eventually finds a permanent home and how these change each others lives and in the process St Nicholas decides to leave surprise gifts to those who have helped him at on point in this life.

After the movie the kids acted out the story of Christ's birth and the circumstances leading up to his birth as they read from Luke Chapter 2 them Mark Chapter 2. This was my highlight of the evening.

Then after this and talking about this the kids knowing we have been blessed with a secret Santa as a family we gave them the option of opening their Secret Santa gifts to each other or rest of the gifts sitting on the floor. They all shouted "our secret Santa gifts!" They just had to know the reaction of their brother or sister over what was in the gifts on the floor.

The funniest was when Frank got to Ellie's gifts to him. By this point she just could not hold back her excitement any longer. To see how she would react he tossed one of his gifts to Corbyn to open. Right away she snagged that gift and ran it Daddy telling Corbyn "that is NOT yours, that is Daddy look at the tag!" and gave it to her Daddy, "get it right and read the tags!" The next time he did that she was more than excited to help open the gift, "Look Daddy, see it is a lion, it is so cool and will be fun to paint!" LOL this was before it was even unwrapped. By his third gift he did not even pass it on as her reaction was so extreme as she was about to explode. She was laughing, giggling, jumping, screaming, shouting, "Look Daddy...it says I got your back, I got your back, I got your back!" By this point Celidah said "there she finally exploded. I was wondering how long she could hold that inside."

Getting the kids to bed last night was a challenge as they knew more was to come in the morning. They have come used to the Christmas breakfast table and the stockings. This is their favorite part of Christmas morning. The stockings have a few small gifts, snacks, and breakfast items. The table it filled with fruits then set for easy eating allowing for no cooking for breakfast.

With the house set up and the kids sleeping we are off to bed and ready for Christmas to begin.

Motivation to learn to Read…

2011-12-22T09:49:00.000-07:00

Well Zach has found a real reason to learn to read. LOL not just read, but really read and become a good reader at that. He has decided that his younger sister just can’t be reading better and faster than he can. Talk about the inhumanity of her being able to sound out words faster than he can. So not fair that he is trying to sound out a word and she comes up behind him, looks at the word, thinks, and then blurts it out before he has a chance.

Oh goodness, want to hear two children argue? Have Chantelle come into the middle of Zachariah’s reading time and blurt out his words before he can.

“Ellie!! That was MY WORD!! Let me find my words for myself!” He shouts to her.

All dignified she simply states to him, “well you were not finding your word fast enough.”

“But, it is my homework and MY reading. I have to find and read my words.”

“Well then find them and read them faster.” She retorts back, stomping away because he has just slammed the book shut in her face.

A few minutes later I have either Zach or Ellie snuggled up to me reading a book alone away from their brother or sister, happily reading to me. Throughout the process I gently remind both kids to stop, slow down, sound out words, and think about what they are reading. Once the book is finished we talk about what they just read. Within just a few minutes the other child has joined me and the process begins again without arguing and me alone with one child.

However, I do not see reading being much of a struggle for Zach to much longer this school year as he has a real desire to catch up with his brothers and sisters and begin to read the “real books” as he calls them. He wants to read the Harry Potter, Warriors, and other books we have on the shelves or are getting from the library.

ATEC Christmas Party

2011-12-20T20:51:00.000-07:00

Today was the Christmas party for Frank’s new unit here in MD, and what an experience it was. First off due to an appointment that ran late I had time to change my shirt to a more Christmas-y color, and then due to the weight I have lost I no longer have any slacks that fit anymore.

Several things I learned today, do NOT wear jeans around here. The skirts I wear to church are to causal, I do have to break down and get slacks again, I will want to get or make myself a black dress for the more formal events. Depending on the dress it can be less formal, or more depending on the accessories with the dress.

The other thing I discovered is we are low ranking here. Talk about weird, going from a higher ranking NCO level to suddenly being one of the lower ranking soldier levels. I never thought I would be in a room with a General, let alone two Generals. They were mingling with everyone. I have never seen so many high ranking offers in one room and all were very friendly as well.

I had the opportunity to meet many of the people Frank is working with or will be working with. This duty assignment has the potential to provide him with some really good opportunities.

Pulled out the microscopes we were given...

2011-12-14T11:00:00.000-07:00

Ok so I LOVE science and have helped my kids to love science too. These microscopes used to belong to Frank's aunt a genetic scientist with UC Davis. I am SO excited to have these as part of my science collection now and can't wait till we have a chance to actually use them.

Playing with my new camera

2011-12-14T10:53:00.000-07:00

Here are some cute pictures taken while Frank and I were playing with the new camera

Choir and band concerts

2011-12-13T19:20:00.001-07:00

So far the younger kids have had their choir and band concerts. The first one was with the elementary school. Corbyn was the only one performing this time. He participated in the choir and seemed to have a lot of fun doing so. The kids did a great job singing. The 4^th graders for band and orchestra were definitely beginners but moving along. The 5^th graders had moved on to some challenging music for them.

The following week we attended the band concerts with the middle school where Jade participates and plays the flute. She is progressing nicely and getting more confident with her flute playing. In the 6^th grade band there were 75 students, in the concert band (7^th and 8^th graders) they had 110 students playing. The middle school really pushes and challenges the kids with the music they are learning to play.

Our next concert coming up will be Celidah’s orchestra concert. We are looking forward to seeing the differences between the elementary, middle, and high schools music programs here.

In our house music practice gets quite interesting at times with all the kids learning to play something. Zach and Ellie are working on the piano until they get a bit bigger and Ellie is also working with the xylophone. Jairon will start with the clarinet as soon as we get a pad for the one missing pad, until then he is working with the piano for now. Corbyn has been learning to play his dad’s bassoon. Then we have Jade with the flute, and Celidah’s main focus this year is her violin.

However, our newest instrument collection piece is the cello we now have. Frank has been practicing on his bassoon as well as learning to play the cello and Jade is so excited we have a cello in the house. This has been her favorite instrument since she was in the 2^nd grade. Well she is working on teaching herself how to play the cello using YouTube videos. This child really wants to learn the cello as well.

The kids are getting better with focusing on their instrument sound when all kids are working on something. However, with each child at a different level we get some rather interesting sounds right now in the house. Yet, this is fun to watch the kids learning to play and so excited about progressing.

My follow GI apt..

2011-12-13T19:19:00.000-07:00

Well today I saw the GI for my issues and the dr had several concerns. The biggest ones are the continued abdominal pain I am having, the nausea issues even with the 8mgs of Zofran, low food intake tolerance, and the unexplained weight loss. While in some ways I am so glad to be losing weight, this really is not the best way to go about.

The biggest concern though was the severity of the ketosis acidosis and the fact that the cause was never determined. Apparently my ketosis issues were more severe than I was originally led to believe. Yes, I knew when I was placed in the hospital in AZ in Oct it was bad and I was not doing well. However, what I did not know is just how close I really was to complete organ failure. According to the dr today had I not been admitted when I was I would have gone into organ failure for sure…

In order to help figure out what is going on I have an abdominal and pelvic ct-scan on Thursday. Then early in Jan I will be having both the endoscopy and colonoscopy redone. When they were done in AZ there were no biopsies done, just a look. I am also being tested for Celiac disease and other things. I forget the whole list. Once these tests are done if the dr is not liking the results or answers then I will have to have motility testing done. (Oh joy…) She also listed off anther list of tests that can be done to help discover the cause of my issues.

However, ultimately the main thing that may have to be done is I may have to go back on gluten for at least a month to help determine what exactly is going on. This is what I am most dreading at this point as gluten puts me in so much pain. Honestly eating solids period are not something I look forward to.

For now though I am to limit the solid food intake and focus mostly on clear liquids. However due to the ketosis issue I am to keep drinking protein shakes at least once a day, (prefer at least 16 ounces) to make sure my body is getting sufficient protein to try and prevent this from happening again. I am also to stop taking the naproxen for now and limit other pain meds. This is going to be frustrating for me as I take the naproxen to reduce joint inflammation.

Thursday I see the endocrine specialist and hopefully will have a better idea of what blood sugar levels are the “safest” for me. Hopefully this dr too will give me ideas on how to prevent a future ketosis attack. This is essential as due to the severity of my attack in Oct, I have been told the next time will not be a nice short week stay in the hospital, but will come with major complications and consequences.

Tried painting a humming bird

2011-12-09T18:05:00.002-07:00

The first time I have tried to draw or paint a humming bird. Painted in acrylic paints

Mom's MRI...

2011-12-09T03:05:00.000-07:00

Thursday MRI adventure....

Well with so many trips into Baltimore I can honestly say I am learning my way around the town. Well at least so far to Perrins Violins, John Hopkins Hospital, and University of Maryland Medical Center so far. Soon I will know how to get to and from Bethesda Naval Hospital for me...

Today I had the abdominal MRI with and without contrast for my ovaries. The MRI was scheduled for 25 minutes however took 40 minutes total. So either they were very carefully checking things out or they found something...not sure yet. The results will be sent to my dr by tomorrow. Hopefully I will have the results soon.

On one hand I am hoping they find something easy to fix, on the other had hoping nothing is found. While on one hand hoping something is found kinda hoping not because this MRI was specifically to look for cancer, in fact ovarian or other cancers in that specific area. So if they do find something this will come with mixed issues in itself. If they do find something the next question is what is it, can it be easily fixed, what treatments are needed, and how long will they last?

If they do not find anything that leaves up continuing down the idiopathic path longer...the unknown realm of what in the world is going on and why. What is the next test to do. But the good news would be that this is NOT ovarian cancer related...

To top the day off with the longer than expected MRI I lost my wedding ring today. The ring that Frank has hand made in AZ for our 5th anniversary. Thank goodness it was not the new moonstone one he got while in Afghanistan...

However today I did not get lost once!!!!

Corbyn's New Heme Dr

2011-12-09T02:45:00.000-07:00

We met with the new heme dr Wednesday concerning Corbyn and his platelet disorder. The weirdest part of the appointment was when the dr's asked about family cancer history. Of course I had to talk about both my mother and mother in law are both taking chemo for different kinds of cancer. Both are doing different forms of chemo for their cancers. My lovely child just had to point out my missing ear chunk due to my prior cancer. So yes I had to find the name, write it out on a paper towel (Apocrine Adenocarcinoma variant: Ademoid Cystic Carcinoma with Malignancy to the margins.) This was necessary because once they found out it was a sweat gland tumor that attacked my ear and fingers running down behind the ear, inside the ear drum about the penetrate the ear drum, and about half the ear had to be removed they were curios and wanted the name.

With this information the next question was, "is there any other history of cancer," to this my lovely child once again stated, "the dr's think my mom has cancer again." Looking shocked at this comment they looked at me and asked, "what are they looking at this time?"

UGH!!!! With my children there really are NO secrets!!! So now I was questioned again and had to tell them that the dr's are looking at my right ovary at an ugly looking cyst. I have a lump in my right breast that the mammo has required a follow up ultra sound with possible biopsy. And they are trying to figure out what has messed up my liver in the past year.

(sigh) The heme/onc dr team was very fascinated that everything being looked at is on the right side. To make matters more interesting they asked me about any bleeding issues i have had in the past. Hemorrhagic issues after deliveries, did I require any transfusions, and why did I have a hysterectomy... UGH this was HIT apt NOT mine...

FINALLY!!!! the attention was back on him and his platelet disorder. In the end we got back around to him and he had a ton of blood work as he has been off prednisone and IVIg long enough to get good baseline counts. He will also be getting a bone marrow biopsy to ensure there are no signs of fibrosis within his bone marrow.

Turns out to be a blessing in disguise that he was NOT allowed to continue past the 5 or 6 doses of nPlate Apparently in younger children this medication is known to cause fibrosis within the bone marrow. He had Rituximab and failed that as well. There was another IVIg therapy he has also failed.

The new dr wants to hold off on removing his spleen as long as possible wait until that has to be done.

We return in Jan sometime they will call one the bone marrow is scheduled to let us know the 2 dates we need to be at the John Hopkins Hospital, one for the additional testing, and one for the follow up.

Reflections...

2011-12-05T10:21:00.000-07:00

So I made a trip into NYC on a day I was not feeling very well in hopes of meeting up with a friend. Unfortunately even the best planned plans do not always work out as expected. On such a trip little things like extra toll booths, construction, accidents, missed exits, were not taken into account. Nor was the dr's appointment that was running late setting the whole day behind.

However, the long drive let to realization of many new adventures taken since Frank's deployment to Afghanistan. As it is before he deployed I would NEVER have considered driving more than 2 hours anywhere to meet up with anyone. I would NEVER consider driving in a town like Baltimore with the crazy traffic there. I had survived there so how bad could NYC be.

The drive was not to bad as long as I stayed on an inside lane on the big bridges, yes I do NOT like heights. Those bridges make me nervous, ok very nervous. I was very glad to learn there were NO tunnels going to NYC. The traffic flowed most of the way until I got into the city.

I found my way to the airport about the time the plane was scheduled to be leaving. Bummed out, I sat for a bit, but satisfied I found my way into town, I left to try and find a Target for something I found my way onto Atlantic something.

Soon my nerves were raw. I discovered NYC is a traffic safety hazard, more accurate a crash test dummy site. Oh my goodness. I know fully understand why car rental places require a insane rental down payment. What is up with double parking in a driving lane, turning right from the LEFT turning lane, using the left lane to go straight from? Not to mention if you are NOT through the light as soon as it turns green all the cars behind you are honking at you.

The funniest though I felt like I was in a scene from Harry Potter. There was this really old man who took 3 seconds per step. When my light was green he was in front of the drivers side head light step 1...2..3..step..1..2..3 step and on it went as he used his cane to ever so slowly walk past my car. here I was getting honked at, and honked at, and honked at....(yeah you get the picture) until finally he pasted by. heheh... well I was driving a HUGE GMC extended Yukon so the little cars behind could NOT see this little old hunched over man ever so slowly walking in front of my truck. Of course I was NOT going to honk at him and give him, (may have given him a heart attack) as he finished passing by he gave me the biggest smile while waving though.

The one part of Atlantic I really hated was driving as the tram or what ever it is called, driving under that loud thing was not cool. LOL kinda freaky actually. The other freaky thing I had happen while driving was simply zoning out, no music on, no cell phone, nothing.. just me in my head and eyes on the road... Suddenly I felt this weird vibration. Again that vibration... Then a third time and I looked around and saw in my rear view mirror were lights on my tail so I pulled over as soon as I had space... Puzzled I saw it was a sherrif's car. However, it was not until it whizzed past me that I heard the sirens. I have no clue how long he had been there. But I am sure by the look on my face they saw I was very confused. I do not understand why I did not hear the siren at all. I noticed in NYC that I could not tell the direction the siren was coming from at all either and have worse trouble with that here in MD as well. But, startling was the vibrating horn thing they used to get my attention. What was that. Kinda cool really...but never knew anything like that existed...any why can't I hear the sirens out here...

Well one thing I have learned from my trip into NYC... I will GLADLY drive any day in Baltimore, but never again in NYC if I can help it. I will leave the crash up derby insanity to Frank. I do believe I can handle the driving to Bethesda...that can't be worse than Baltimore and once I get on base as least that will be sane again hehe...

I do love driving on military bases. That I do know!

Rules coming back at me...

2011-12-05T09:32:00.000-07:00

Ok so for years now it has been the rule that the either Ellie eats her food or she gets her formula or as he calls it her "Ellie Milk." So last night she had not eaten very well again and gladly she was allowed an extra can of her Bright Beginnings Soy Milk. At the same time she asked me if I too would like a drink, so I told her I would like some water.

Well a few minutes later she came to the kitchen entry with the jug of Egg Nog asking me how much I would like. I told her "no thank you, water please. Then she comes back the kitchen entry with the jug of regular milk, again asking me how much milk I wanted. (sigh) Again telling her "no thank you, water please," she looked annoyed at me put the milk back and brought me water.

However, this time with my water she told me, "Mom, if you are not going to eat you need milk, you know the rule!" and walked away...

Trying hard not to laugh or look annoyed at my daughter, I was not sure just how to respond to her comment as yes she really was right on so many levels as yes I do need to eat more than I have been. However, she just has no clue how my body is reacting to foods right. UGH how annoying when my rule for food for her comes back to bite me too. LOL...

Been a while since the last update

2011-11-29T09:32:00.000-07:00

Well it has been a while since the last update...

Since then all the kids have seen the new peds dr for their school physicals. Ellie has been seen several times for her lungs due to being sick. We are waiting on her referrals for the pulmonary, GI, and feeding tube clinics, and we are waiting to get Corbyn into the hemo clinics at John Hopkins Children's Hospital.

We are also still trying to figure out some of my issues. I have started seeing the specialty dr's. The GI I saw turned out to be the wrong one and was not specialized enough with the issues I am dealing with and he has referred me back to my dr with a referral out to Bethesda Naval Hospital after all. The onc clinic is still waiting on some test results from CO to help figure out what is going on and I am scheduled for an MRI next month to (crossing fingers) "hopefully" rule out ovarian cancer.

So far the kids are LOVING school with their new teachers and Jade is on the honor role so far. Celidah has very good grades, and just waiting on the other kids grades to all catch up with them from AZ to here so we know how they are all doing.

I Really Really Like the New Dr

2011-11-15T12:22:00.000-07:00

Today we saw the dr for the second time. This time with Corbyn for his school physical. Before we got started he asked if it was alright to take sometime of Corbyn's appointment to discuss Miss Ellie and some information that was unable to be covered yesterday.

He let us know that he had arrived at 4am to cover the 300+ pages that had arrived from Children's in CO with the most important information for him. He still had some questions so he had called Dr. D her pulmonary specialist back in CO to get some more information on her. Dr. D knew enough about Ellie without looking at her records and was able to give enough background history on her and fill him in on the laryngeal cleft issue and the procedure used to help fix the issues even if temporary.

With more information about our littlest princess he was able to develop a better game plan and get the needed information to ensure the referrals are and she is able to see the specialists quickly here.

Moving onto Corbyn he has already spoken with a hematologist that he wants Corbyn to be seen by. Turns out this is also one that Dr H back in CO has been working with on a consultation basis to ensure he was getting the best care he needed. He already knew what blood work to order. He has also ordered a scoliosis xray exam due to some odd bending in his back. He has the referral to the new dr already requested and knew what blood tests needed to be requested. He ordered a full panel screening for lots of including full metabolic counts, and how the bone marrow is working. Because dad just returned from Afghanistan he also ordered a TB test. The kid had 5 vials of blood work drawn..

The apt today took half the school day however, I feel this dr is not only going be really good but careful and complete with each of the kids. He worked through his lunch hour to make sure everything was covered on both kids.

We are highly impressed with him and he has only seen 2 of the kids so far.

Peds apt update on Ellie

2011-11-14T23:33:00.002-07:00

We had Chantelle's peds follow up and her lungs are sounding better, even though she is still needing her breathing treatments before and after school and before bedtime.

She was so good for her new doctor and made him laugh at her witty charming manner several times. Her lymph nodes in her throat are no longer swollen. The longest part of the appointment was filling out the paperwork to allow her to have her meds at school. We ended leaving before the paperwork was filled out. Because of the nebulizer, spacer, feeding tube, feeding pump, epi-pen, and simply thick, soy milk, and other needs at school we had to fill out 10 med sheets for the school to allow for her needs.

He is writing up referrals for her to be seen at John Hopkins Children's Hospital for pulmonary, GI, and ENT. We will have to get used to traveling again as we got spoiled in Colorado living only minutes from the hospital.

Recipe for a Military Wife

2011-11-14T23:15:00.002-07:00

RECIPE FOR A MILITARY WIFE

1-1/2 Cups Patience

2 Tbs. Elbow Grease

1 Lb. Courage

1 Cup of Tolerance

Dash of Adventure

Marinate frequently with salty tears and pour off excess fat. Sprinkle ever so lightly with money, kneading dough well until payday. Season with international spices. Bake for twenty years or until done.

Serve with pride!

Upcoming Appointments Going To be a CRAZY Month here...

2011-11-12T19:03:00.000-07:00

This is also for record and for me to help remember but we have a crazy appointment schedule coming up over the next several weeks. What I hate most of all about moving is getting set up with new dr's and facilities. Not only that but learning my way around a new town, set of towns, wait lists, and such.

Nov 14th 7:45am Ellie sees her Dr for her school physical, med forms to be filled out, DME requests for Apria, Referral requests for her to be seen by specialists at John Hopkins for her lungs, laryngeal cleft issues, aspiration issues, feeding tube needs, and other issues.

Nov 14th 2pm med refills until I can see my pain management clinic

Nov 15th 10:45 Corbyn, school physical, med forms to be filled out, Referral requests to be seen by specialists at John Hopkins for hemo, ITP issues

Nov 17th Mammo/Ultrasound Right breast lump Upper Chesapeake Dr

Nov 18th 12;45 GYN Harve De Grace
Nov 18th 2pm GYN ONC University of Maryland Baltimore

Nov 21st 12:45 Jade school physical, med forms to be filled out, Referral requests to be seen by specialists at John Hopkins for asthma, autism

Nov 21st 1:30 Zach, school physical, med forms to be filled out, Referral requests to be seen by specialists at John Hopkins for asthma

Nov 22nd 12:45 Jairon school physical, med forms to be filled out, Referral requests to be seen by specialists at John Hopkins for asthma

Nov 22nd 1:30 Celidah school physical, med form to be filled out,

Nov 28 1:00 GI Upper Chesapeake Dr

Jan 11th 12:45 Endocrinology (Diabetic specialist for Hypoglycemia) Upper Chesapeake Dr

I Just CAN"Tt Become A Stupid Teen!!!

2011-11-12T18:05:00.000-07:00

The other day Jade was having an unusually emotional day and freaking out about turning 13 and hitting the magical number of stupidity. Carefully and cautiously her father and I was doing our best NOT to let her know that we were struggling NOT to laugh at her dilemma.

Her genuine tears did help us with NOT laughing at her until after our conversation with her and sending her out to play.

Her issue: Through her tears she let us know that she worried as soon as she turns 13 she will become a stupid teenager. As she told us "Teens are stupid, do not listen, yell, scream, are selfish, arrogant, rude, and just gossip about everything. I just can't become one of those stupid teens! I am turning 13 and will get the stupid gene on my 13th birthday! What can I do to stop and prevent this? How can I make sure I am a good and smart teen and not a stupid one?"

The poor child was so desperate for answers on how to prevent herself from becoming a stupid, selfish, arrogant, screaming, teenager, that all she could focus on are the negatives of growing. We discussed with her the positives of the fact that she has her own brain, she can make her own choices and can learn to decide for herself if she is going to be like the teens she knows or choose to be who she wants to be.

Finally, after talking with her for a while we got her calmed down and were able to get her to go out and play. Once she did go and play Frank and FINALLY had our laugh over her freak out reaction over turning 13... Gotta love kids and the things they realize and freak out over.

YAY Returning to school tomorrow!

2011-11-09T15:40:00.001-07:00

YAY!!! Chantelle Finally got the green light (even with her cough) to return to school after 3 days out of school. I am thinking I may have to have a letter written to the school telling them they have to let her stay in school while coughing due to her chronic cough. We had such a letter that we had to carry with us at all times while in CO due to Corbyn's hemo treatments. This letter allowed her access to places that most children with a cough were NOT allowed access to.

Due to her lungs and the state they are in and the fact that we can't control how much or how often she is going to be coughing this may be a required medical document. We may also have to make them make an exception due to her intermittent fever issues as well. How is this child going to be able to attend school when her body just randomly runs fevers for no reason? Also what about the 2 hour fevers she gets? She has been known to the run fevers for a very short period of time and it stops as suddenly as it starts.

Then on the other hand she has a double ear infection, upper respiratory infection, UTI, and other infections WITHOUT running even a slight fever. This child has been known to stump the National Jewish Doctors... LOL So what is the school nurse to do with her...

Another day home for Ellie

2011-11-08T19:36:00.001-07:00

well our little princess is staying home another day. She is still running a fever tonight and has been needing her breathing treatments every few hours. She is going to be disappointed not to go to school again. But she sees the dr tomorrow afternoon. SO hopefully we will have a better idea what is going on with her and her intermittent fevers again. Hopefully also this dr can sign the school forms allowing her to have the needed meds in school and get us a referral to the peds pulm dr's at the University of MD. I hear they are really good there...

Thoughts and tidbits from our Stake Conference at church.

2011-11-07T18:12:00.000-07:00

Church here is very different than what we are used to. There is one stake out here that covers the whole MD state and part of PA as well. Gone are the days (for now) where there are members all around and mulit-stakes in one city or at least one ward per city. Our current stake has 4 maybe 5 wards total and covers a very large area.

Yesterday was Stake Conference and the talks were really good. The main thing I pulled from conference is the importance of endurance regardless how discouraged we are. Through small steps, and sections of each task great things can be accomplished. However, these accomplishments and success only will happen if we endure, have faith, trust, and believe we are all Children of God.

Cultivating Our Fields

The first talk was about “Cultivating Our Fields.” The talk reminded us about the importance of the fundamentals of the Gospel and how they enrich our lives. One can also cultivate a productive field through service, kindness, and steadfastness in Christ. Additionally, this speaker talked about the importance of breaking tasks into smaller sections then we will be able to accomplish great things. As was stated in the talk cultivating our field takes endurance, service, faith, and constantly moving forward one-step at a time, great accomplishments will follow these small steps. Finally, this speaker spoke of the importance of becoming strong from the inside out. The Lord will bless everyone who endures and keeps moving forward. The Lord will bless with increases where each person needs.

Service

The next talk talked more about service. “When ye are in the service of others, ye are only in the service of God.” Through service we gain satisfaction no other act can offer. This speaker pointed that everyone is in need of service in one way or another, through finding different ways to serve we can help more people. Also this speaker discussed the importance of gratitude. Through being thankful for all things including our struggles and trials, we will find ways to make these our strengths and find additional blessings.

Preach My Gospel

A returned missionary spoke of a couple of his experiences while on his mission. The most important parts I pulled from his talk is that the Savior takes care of big and small mistakes. No matter what we do if we follow the repentance process nothing is to big to ask for his help to get over with. He also spoke about how families are forever and the blessings found within this knowledge that families truly are forever. His final thought covered the Book of Mormon. He spoke about how through this book, all can be touched and taught, who truly take the time and effort to read and study from this book.

I AM a Child of God!

This talk started with some of the lyrics from this beloved Children’s Song.

The lyrics are as follows:

I am a child of God, And he has sent me here,
Has given me an earthly home With parents kind and dear.

Chorus
Lead me, guide me, walk beside me, Help me find the way.
Teach me all that I must do To live with him someday

I am a child of God, And so my needs are great;
Help me to understand his words Before it grows too late.

Chorus

I am a child of God. Rich blessings are in store;
If I but learn to do his will I'll live with him once more.

Chorus

How often do we sing this song with our children, and during family prayers ask for something. Now do we take the time to say to Heavenly “lead me, guide me, walk beside me. Help me find the way (to finish this statement with) the accomplish what we need help with? Our Savior truly does lead and guide when we ask and wait for the answer. These answers may not be what we expect, or in our time frame, but the answers will come. Next, this speaker spoke of the importance of being responsible for our choices and each reaction caused by these choices. The Lord understands that discouragement happens. Our job is to pray for the extra strength needed to make it through trying and disappointing times in our lives.

The Lord does know each and every one of us and he knows what our needs are, what struggles we are facing, and he will protect us when we are doing our best to do what is right. Additionally, if we break each task into smaller sections, and keep pressing forward each right choice we make will lead us toward progression.

Trials, Faith, and Trust

The current belief on faith is “a belief in something without proof.” However, real faith “is not believing that God can, it’s knowing He will.” What will this faith will prove depends on us individually. Mosses 5:6 tells us “And after many days an angel of the Lord appeared unto Adam, saying: Why dost thou offer sacrifices unto the Lord? And Adam said unto him: I know not, save the Lord commanded me.” With this said Adam knew the Lord would bless him for following the commandments he given. Adam had total faith and trust in the Lord.

How can we increase our faith and trust in the Lord? This will happen as one engages purposefully in edifying activities. The Doctrine and Covenants tells us:

23 And that which doth not edify is not of God, and is darkness.

24 That which is of God is light; and he that receiveth light, and continueth in God, receiveth more light; and that light groweth brighter and brighter until the perfect day.

25 And again, verily I say unto you, and I say it that you may know the truth, that you may chase darkness from among you;

As we follow this section’s advice , the less talking about doing something and more we do walk in the light of the Lord the easier our faith and trust will grow. This is also true with our trials. Even through trials as we engage purposefully in edifying activities, our burdens will seem lighter.

Are You Coming, or Are You Going?

Oh My Father is one of my favorite hymns and this speaker referred to this hymn:

Oh My Father

O my Father, thou that dwellest In the high and glorious place,
When shall I regain thy presence And again behold thy face?
In thy holy habitation, Did my spirit once reside?
In my first primeval childhood Was I nurtured near thy side?

For a wise and glorious purpose Thou hast placed me here on earth
And withheld the recollection Of my former friends and birth;
Yet ofttimes a secret something Whispered, "You're a stranger here,"
And I felt that I had wandered From a more exalted sphere.

I had learned to call thee Father, Thru thy Spirit from on high,
But, until the key of knowledge Was restored, I knew not why.
In the heav'ns are parents single? No, the thought makes reason stare!
Truth is reason; truth eternal Tells me I've a mother there.

When I leave this frail existence, When I lay this mortal by,
Father, Mother, may I meet you In your royal courts on high?
Then, at length, when I've completed All you sent me forth to do,
With your mutual approbation Let me come and dwell with you.

Text: Eliza R. Snow

Our Father’s main goal for us is happiness. This happiness can be achieved through following the commandments. The fact that we are mortals or human we are given the agency to choose for ourselves. However, with that said or moral agency leads to mistakes, and through repentance these mistakes are wiped clean.

Obedience to the commandments leads to blessings. Also it is through the atonement of Christ that our souls will be set free. The Gospel is truly built on the foundation of Christ, through his example we can learn how to become like him.

Taking Notes and Keeping Track

The final speaker was Elder Kohkler (I think that was his name) from the 1^st Quarm of the Seventies. He summed up several prior talks then talked about when taking notes only write the most important parts. The parts we each felt were important to us as if we are listening with the spirit then we will be guided and taught what message we needed to hear.

He spoke on the importance of prayer, raising our hands high and out towards God. Seeking the spirit and enjoying the music. Righteous music is a window into heaven. Through seeking the Lords spirit He will bless us with the blessings we are in needs of.

Patience is the most important virtue to learn. Patience is learned through service as is kindness, sweetness, and love. Service is the symbol of our hands stretched out to help another. This is also what Christ did, he reached out continually to help others.

Finally, through working on and practicing these skills we can truly put on the full armor of God. This is also the light of Christ. The light of Christ shines through us based on our daily patterns of living.

School updates

2011-11-07T13:37:00.001-07:00

Well all 6 kids are in school now. Well all but Ellie, who got sent home today and gets to stay home tomorrow due to her cough and starting to run a fever. UGH 3 days in school and she is already running fevers and coughing. We will keep up her neb treatments and move to her g-tube for all liquids to give her lungs a break. I am not sure how much of this is due to aspiration, or a combination of aspiration and introduction to new germs and bugs.

The tube feedings for all liquids will guarantee that she is not aspirating right now, and also help us to gauge what exactly is up with her lungs.

The 5 older kids are enjoying school so far and Jade is super excited about getting real flute music to play.

Funniest was the response the boys got when they were excited to see their had not missed the bus after all. Her response to them was "No I couldn't ride the bus because I was catching a fever. See, feel my forehead, the nurse kicked me out of class, because I was catching a fever."

Look a skinny and little pepper from the neighbors!!!

2011-11-05T09:56:00.002-06:00

ROFL my 10 yr old son was given a fresh from the garden jalapeno by our neighbors (meant to used in cooking)...

Well instead he decided to just eat the jalapeno straight instead of waiting for it to be used in any meals.

He NOW knows not to eat the cute skinny little peppers by themselves again....

I know I should not be laughing but sometimes kids do not think before they act and now well maybe he will...

Nationwide Emergency Alert System Test (only a test)

2011-11-04T19:35:00.003-06:00

Message below is provided for your information and situational awareness.
The nationwide Emergency Alert System (EAS) test will occur 091400 Nov 11 ET. Please refer to the FEMA web link below for additional information. There are some concerns that portions of the public may not understand that this is a test and not a real emergency.

/////////////////////////////////////////////////////////////
Nationwide Emergency Alert System Test

On Wednesday, November 9, 2011, FEMA, DHS and FCC will conduct the first national test of the Nationwide Emergency Alert System (EAS) test. This nationwide test will kick off at 2:00 p.m. (EST) and run concurrently across all time zones.

This system test is the first of its kind designed to broadcast a nationwide message to the American public. In the history of the country, nothing like it has been conducted on such a level. As you may be aware, there have been tests in the past, but not of this magnitude encompassing all regions of the Nation simultaneously. The three (3) minute test will run concurrently on all radio and TV band stations exceeding the previous messages broadcast which were anywhere from a 30 second to 1 minute message.

There is great concern in local police and emergency management circles about undue public anxiety over this test. The test message on TV might not indicate that it is just a test. Fear is that the lack of an explanation
regarding the message might create panic. Please share this information with your family and friends so they are aware of the test.

Below is FEMAs website that will provide more information regarding this test: http://www.fema.gov/emergency/ipaws/eas_info.shtm

Opportunities for the kids. Feel free to share!

2011-11-03T23:40:00.000-06:00

Opportunities for the kids. Feel free to share!
Military Children can help decorate the White House

Please share this message and exciting opportunity.

First Lady Michelle Obama is asking military children from around the globe for some personal contributions to the finishing touches on the White House decorations this holiday season. The request is for military children to submit 5x8" handmade holiday cards with words of appreciation for their military parents, as well as pictures and drawings. The White House will display as many of the cards as possible.

Participants are asked to send holiday cards to the following address along with information from where they are sending it by November 16, 2011:

Reservation 1
Attn: Social Office
PO Box 8070
Washington DC, 20032

Please spread the word to your units, Family Readiness Centers, Youth Programs and all other avenues to share this opportunity for military children to express love, admiration and appreciation for their military parents this holiday season.

Thank you for all of your support!

Newest Instrument

2011-11-01T19:54:00.000-06:00

We stopped off for dinner tonight and next door was a pawn shop. So afterwards we decided to see what if or any instruments the shop had. Well there we were interested in. We atarted off looking at the saxaphones and found one we were considering, then I found french horn that is actually in good shape needing minimal care.

Upon further exploring I found a piccalo, not bad for a beginners lever instrument, Then I spotted the flutes... a bit disapointed because they were all beginners. NOT one even intermediate level...

Disapointed I started to turn back to Frank who was helping the pawn shop owner trouble shoot why one of the trumpet valves was not staying up. At that point I spotted a cello and asked to see the cello. Granted the cello too is a beginners cello and needs some slight work, I still wanted to see it. We have a couple children wanting to learn to play the cello.

However, with a price tag of $999 I know it was NOT worth that price so I started pointing out the issues I knew about. By this point Frank had not only helped the store owner figure out how how to fix the trumpet, but had give the french horn the most complete check up he had ever seen. He had cheked all the valved, tuning slides, every inch of the horn. In the entire year the horn had been in the shop he had never seen anyone spend so much time checking it over so carfully.

Next we moved onto the cello in the same fashion. The bridge was not in the correct place, he pointed out several other issues. I pulled cello bridge placement on the cell phone to find where the bridge was supposed to be. Frank opened up this tuner on the cell phone to make sure the strings would tune.

About this point the store owner was wanting to close shop and get us out so he offered the cello for $250 with the bow and case. Gladly taking the offer we paid. He told us the offer for the french horn for $300 still was available. We let him know that would have to wait until the next pay day if it was still available. I figure it still available then it too is meant to join our slowly growing collection.

However, the goal to keep the cello a a secret until Christmas lasted ONLY until Celidah pulled her violin from the truck and shouted with delight "A CELLO!!" This was heard by Zach who too screamed, "What we got a cello?" within seconds the other 4 kids came RUNNING out of the house right behind Jade screaming in excitement about the cello.

Now they are all upset that we will NOT tell them WHO the cello is for until Christmas. LOL Jade knows it is not for her. SHe wants to learn the cello so bad yes, but already has a flute and is in band to learn the flute better. Celidah has her own violin, so that leaves 4 left to get that one...

Need help with a special project

2011-10-31T07:01:00.000-06:00

Hey guys I have been presented with a wonderful opportunity. My dream has been to be an author. However, I never dreamed my start through the creation of books for families dealing with medical issues.

The opportunity I have is I have a Navy Doctor friend who keeps begging me to get the books I have created for my kids ready to be presented for publishing. He knows a program in the military that can help me get these books published for the EFMP or Exceptional Member Family Program, then from there the books can be presented to other medical organizations.

I have been told that there is a huge need for support materials for parents with children like ours. There is even a higher need for the children and their siblings to learn and understand some of the procedures they are going to be or have gone through.

The books I have so far are:

Preschool-kindergarten level: child’s guide to button a button change Mostly picture book with simple sentenced

Parents: Instruction guide book about g-tube changes, complete with glossary of basic terms new parents may not know yet

4^th-5^th grade level book on blood, covering red blood cells, white blood cells, platelets, bone marrow how platelets are made, what ITP and other basic stuff

Preschool book on Autism

Several social story based books to teach young children with autism life skills such as how to play games, clean a room, cross a street, respond when called and such

However the one I am struggling with the most is the instruction guide for parents about helping them help their understand their new button.

What I need are suggestions from you guys as parents as things you have done to help your cope during difficult times with their feeding tubes and what you have done to help them feel more comfortable and “normal” as possible. I also need your permission to use this in the book. As my friend has said there are no parent guides available for parents like us. We have learned all we know from personal experience. He said something like this would also be a very valuable tool for the doctors, as they have no idea how to help frightened parents being told “your child needs a feeding tube.” Other than from the parents who have talked with them.

A Sample Letter for Release of Information

2011-10-30T13:44:00.000-06:00

This is the actual release of information letter that got us senate and congressional attention and we are now working with Colorado’s Senator Mark Udall's office. Harry Reid and several others want to help us out as well. However, we have discovered when it comes to senate and congressional leaders stepping in to help a family, some help to help, other want the media attention. Senate and congressional offices become very selfish in who will claim because some help only for the media and publicity rights of helping someone.

Identifying personal information has been removed on purpose to protect our family. Remember this is a SAMPLE letter. The letter is guideline and information is free to use as outline. Each family situation is unique, therefore the letter needs to reflect your struggles and why you need the help. Please take letter and make it your own.

Other points of Contact:

If you have a VA loan contact the VA for an advocate and liaison throughout the process

https://iris.custhelp.com/app/answers/detail/a_id/1703

Send the EXACT same letter into the HUD office, if the bank is fighting you send the same letter to their FRAUD department. There is an online place where the letter can be attached. HUD is running 60 days behind. DO NOT call HUD for information concerning your case. They will call you when your case comes up. http://www.hud.gov/directory/800/800num7.cfm

If you are on Social Security or Disability, http://www.ssa.gov/pgm/services.htmcontact your point of contact person, they will have resources as well. Most do not know how many resources are available. Again you have to be willing to fight.

Contact your Small Business Association for further referrals and assistance. http://www.sba.gov/about-sba-services/contact-sba

Help is available but only to those willing to fight and not give up. This is exactly what the banks want you to do, get frustrated and walk away. They do not like those of us willing to fight up and go head to head with them.

(VERY IMPORTANT: this letter will give them EVERYTHING they need to start the investigation right away)

(Senate or Congressional Stamp Available Online)

Office of United States Senator/Congress Man/Woman

(list senatorcongress man/woman name here)

RELEASE OF INFORMATION

Before an inquiry can be made on your behalf and subject to the provisions of the Privacy Act of 1974 (Title 5, Sec. 552A of the U.S. Code), the Office of United States Senator Michael Bennet must first receive, in writing, your permission to obtain information on your behalf. Please provide the information below (please print) and mail, email, or fax this form and other necessary documents to the office location nearest your home.

Head of Household Country Citizenship Birthdate Social Security Number Home phone Cell Phone Email Address	Spouse/ co-signer Country Citizenship Birthdate Social Security Number Home phone Cell Phone Email Address
Home of Record Address is if applies to the situation	House to sell address
Prior Address	New Maryland Address

(multiple addresses are common for military families especially during PCS’s moves with TDY in route)

Have you contacted another congressional office? If so, whom?

(very IMPORTANT to list all leaders letters are sent out to so they can communicate with and decide who will actually take the case)

Brief description of the problem: (this is where the actual letter of the issue and complaints needs to be placed right under the loan under)

Loan Number: (necessary for help)

(Please take this letter and use as an example, to write your letter to local senators. )

Personal experience shows that contacting all senators and congress men/women in your local area, location where the house is listed, and if military home of record will get the attention of someone. However, only senate or congressional office will handle the case. If you need help and need help fast the more you contact, the quicker contact will be returned.

My husband and I own a home in Colorado, yet have our home of record in WA as he is enlisted in the US Army. Currently we are on PCS (permanent change of station) orders leaving CO and moving to MD with TDY (temporary duty assignment) orders in AZ. When we first arrived to Buckley AFB, CO, base housing was not available. We were limited on housing options, due to availability, price range, and size of family. Renting was not an option, so we bought a house using our VA loan in July 2005. November 2009 my husband was placed on orders to Afghanistan, out of Ft Hood TX. It was our decision to remain in CO during his deployment. In preparation for redeployment my husband was placed on PCS orders to MD. In our attempts to prepare for the PCS move, we have tried to sell the CO house.

The current housing market will not allow for the house to sell at mortgage value. Current market value places the house nearly $50,000 under the current mortgage value requiring a short-sale. We started the process to sell the house and work with Wells Fargo and hired a relator back in February 2011, while Frank was still deployed in Afghanistan. Wells Fargo at that time stated they would send in the mail a packet stating everything needed to provide for the short sale. The packet was never received. I called the bank after a few weeks and discovered the process had been placed as inactive. This was explained to me as our fault for not providing the required documentation to Wells Fargo. Wells Fargo restarted the process and again did not provide the list of required documentation to begin the process. It was not until after June 2011 upon redeployment of my husband that the complete list was finally provided and a mortgage representative was assigned; one Mrs. Katherine Wright. However, Mrs. Wright has never contacted us via phone, email, or mail, and all voice mails have been left unreturned.

During this process of attempting to work with the bank, the house was shown to more than 30 prospective buyers. Multiple offers have been made on the house. Only one offer has been made at the market value. This is the offer we are attempting to accept and sell. We have attempted to provide Wells Fargo with the needed documentation to sell the house for these buyers via fax, and email, and secure email multiple times. We have followed the banks instructions and followed as closely as possible. Multiple time these requests for corrections were given with under 24 hour notice and a warning the process would be terminated if not complied with. These requests did not take into consideration time zones, distance, or time required to notify all parties involved with the sale. Wells Fargo only provided these notices to the relator and not to us as the sellers. In order to facilitate the process we decided to work through the relator to communicate with Wells Fargo for they would NOT communicate with us.

It has now been two weeks since Wells Fargo has contacted us or our relator and they have not contacted the buyers bank or relator as well. We called them today to and could not communicate with Mrs. Wright and were informed our file was placed as inactive again as the financial worksheet has yet to be received even though it has been sent via email 5 times, fax 3 times by myself and by our relator several more times, and faxed once more today.

At this point, we are extremely frustrated with Wells Fargo because they do not communicate with us in a timely manner, and repeatedly inactivate our selling process without notification. They have placed us in a pre-foreclosure state while we are current on our mortgage payments and have never been more than 30 days late on our mortgage payment. Our financial situation is very strained with the prolonged process that Wells Fargo is placing upon us. Please let us know if there is anything that can be done to assist us with this matter.

Thank you for your consideration in this situation.

Frank and Rebecca Holt

Signature: ___________________________________ (original letter date)

(this letter required several signatures due to updates due to lack of communication after the initial letter, this is often necessary)

Update:

Since the original writing of this letter after request of financial statement on Sept 13, we faxed the financial statement to Wells Fargo. This document was not acknowledged in the system, September 23, 2011; our file was closed and removed from the selling process, without being informed of reason or cause.

This was discovered Oct 21, upon calling again after having no communication with Wells Fargo concerning the faxed document. During this conversation we were assigned our third point of contact to make this process happen. Originally Wells Fargo was offering 48 hours to update the financial worksheet (yet again), re-sign and re-date the 2010 tax return, and once again re-sign and re-date the hardship ship letter. After informing Wells Fargo, we are currently PCS'ing from Arizona to Maryland and currently have all our printed documents packed for the final stage of the move, Wells Fargo extended our deadline to 5 days to allow for travel time, find, re-sign, and re-date the needed documents.

Signature: ___________________________________ (current date)

Finish letter with email, fax, or physical address for senator/congressional office, which the letter is being sent to (this information is easily found online).

The final document you will want to add with this letter is the 3^rd party authorization form from your relator/lawyer allowing the senate/congressional office to contact an with the relator as well. If you are struggling and frustrated then so is the relator/lawyer and TRUST me, he/she wants to see your house sell/situation as bad as you do.

A Sample Letter to Senator/Congressional Leaders

2011-10-30T08:28:00.000-06:00

This is the actual release of information letter that got us senate and congressional attention and we are now work with Mark Udall's office. Harry Reid and several others want to help us out as well. However, we have discovered when it comes to senate and congressional leaders stepping in to help a family they become very selfish in who will claim because some help only for the media and publicity rights of helping someone.

Personal information has been removed on purpose to protect ourselves. Remember this is a SAMPLE letter. The letter is guideline and information is free to use as outline. Each family situation is unique, therefore the letter needs to reflect your struggles and why you need the help. Please take letter and make it your own.

Office of United States Senator

(list senator name here)

RELEASE OF INFORMATION

Head of Household Country Citizenship Birthdate Social Security Number Home phone Cell Phone Email Address	Spouse/ co-signer Country Citizenship Birthdate Social Security Number Home phone Cell Phone Email Address
Home of Record Address is if applies to the situation	House to sell address
Prior Address	New Maryland Address

(multiple addresses are common for military families especially during PCS’s moves with TDY in route)

Have you contacted another congressional office? If so, whom?

Brief description of the problem: (add your actual letter requesting help and outlining the situation)

Loan Number: (necessary for help)

(Please take this letter and use as an example, to write your letter to local senators. )

Thank you for your consideration in this situation.

Frank and Rebecca Holt

Signature: ___________________________________ Date: (original date of letter writing)

(this letter required several signatures due to updates due to lack of communication after the initial letter, this is often necessary)

Update:

This was discovered Oct 21, upon calling again after having no communication with Wells Fargo concerning the faxed document. During this conversation we were assigned our third point of contact to make this process happen. Originally Wells Fargo was offering 48 hours to update the financial worksheet (yet again), re-sign and re-date the 2010 tax return, and once again re-sign and re-date the hardship ship letter. After informing Wells Fargo we are currently PCS'ing from Arizona to Maryland and currently have all our printed documents packed for the final stage of the move, Wells Fargo extended our deadline to 5 days to allow for travel time, find, re-sign, and re-date the needed documents.

Signature: ___________________________________ Date: (current date)

Finish letter with email, fax, or physical address for senator/s, which the letter is being sent to

The final document you will want to add with this letter is the 3^rd party authorization form from your relator allowing the senate office to contact an with the relator as well. If you are struggling and frustrated then so is the relator and TRUST me, he/she wants to see your house sell as bad as you do.

Conversation with Mom got me thinking... Meaning of Relief Society and Biblical and Current Day Plants

2011-10-30T07:56:00.001-06:00

Due to an interesting conversation with mom, about “What does Relief Society mean to you? In the sense of what value does it have to you?” She has me thinking even more about Mustard Seeds, Acorns, and Oak Trees. As posted in prior posted the acorn is a symbol of strength, the oak tree is a symbol of strength and endurance, and the mustard seed is a symbol of faith, with faith one can accomplish great things.

According to D. Kelly Ogden and the article A Sample of Biblical Plants, I desired to gain a better understanding of some plants that were around in Christ’s lifetime as well as our current time period. I also looked up the Parable of the Mustard Seed to review the parable, and see what the scriptures said about the Oak. This has led to some very fascinating reading while unable to sleep.

This reading is truly important because increased understanding of biblical plants and current plants actually increased individual understanding of the scriptures. In addition, this increased knowledge brings a new perspective to current knowledge and thought processes. So based off the conversation with mom I am going to talk about the importance of the Relief Society program and how the understanding of current and biblical plants plays into how one can increase an understanding of faith and increased testimony through study and acceptance of trials.

Biblical and Current Day Plants

Briers, Thorns, and Thistles

Matthew 7:16 tells us, 16 “Ye shall know them by their fruits. Do men gather grapes of thorns, or figs of thistles? Just like in the time of Christ our land is filled with briers, thorns, and thistles.” This is major source of annoyance for some, affliction for others, and symbolize nothing good or positive. However, the choices we are given on earth allow each person to determine what to do with the worldly cares, pleasures, and deceitfulness entwined with these briers, thorns, and thistles. Also, remember it was flexible thorny branches woven into a crown, and then used to mock Christ as part of his crucifixion.

Grass

Isaiah 40:6-8 teaches about the next biblical and current day plant, grass. “The grass withereth, the flower fadeth: but the word of our God shall stand for ever.” As a mortal being we are on earth for a short time period, this period is unknown to each individual. We only know our days are numbered like each flower or blade of grass. With this in mind, daily goals need to be set on developing a strong solid testimony build on faith and the foundations of Christ. Testimonies built this way may sway in the storms of trials and adversity however, the testimonies roots will be firmly and deeply planted preventing the testimony to fail, fail over, or completely crumble under the current stresses.

Sycomore Fruit

“Then answered Amos, … I was an herdman, and a gatherer of sycomore fruit.” (Amos 7:14.) Looking up the sycomore fruit is, I discovered this a fig tree and an edible fruit. Not only did he care for his flocks, but gathered at the same time. Looking at the symbol for the sycomore fruit and the tree, this awesome to discover as this has three meanings, strengthen your faith, strengthen your walk, and stimulate your mind. Before becoming a prophet of God Amos was sheep herder and sycomore fruit/fig farmer. In order to ripen the sycomore fruit each fruit had to pierced to force it ripen. However, the sycomore wood was a prized wood due to the strength and resistance rot. Furthermore, when a tree was chopped down, the trunk would grow back.

Hyssop

Hyssop another plant around today symbolizes humility, purity, and modesty. This plant is a smaller tree often thought of as a shrub and hold amazing cleansing power. During the night of the great plague in Egypt (see Exodus 12:22-23) the families instructed to mark their doors with blood used a hyssop branch. “David, aching to be cleansed, pleaded, “Purge me with hyssop, and I shall be clean.” (Ps. 51:7.)

Mustard Seed

“The kingdom of heaven is like to a grain of mustard seed.” Matthew 13:31-32

Christ referred to the mustard see as “less than all the seeds that be in the earth.”

Mark 4:31-32;
          “31 It is like a grain of mustard seed, which, when it is sown in the earth, is less
           than all the seeds that be in the earth:
          32 But when it is sown, it groweth up, and becometh greater than all herbs,
          and shooteth out great branches; so that the fowls of the air may lodge under
          the shadow of it.”

However, through working on gaining a testimony, taking the needed steps to grow and develop each individuals faith we are told in Luke 13:19 “If ye have faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonder place; and it shall remove; and nothing shall be impossible unto you.”

This level of faith is available to all who desire strong faith and a testimony. From one tiny mustard seed, the mustard plan can grow up to 15 feet. The mustard plant is a very fascinating plant as nearly the entire plant is usable. This plant needs little care and grows very easily as long as it has the required amount of sunlight and water. If these plants are planted to closely they will not grow strong and healthy.

Oak Trees

The oak tree also a fruit bearing tree, providing the acorn. This piece of fruit matures in approximately 18 months, and the tree can live 800-1000 years, and the trunk can reach up to 33 feet around shows not only the strength and endurance of this amazing tree. The oak wood is used for making instruments, barrels, building, and architectural projects due to the quality and strength of the wood. Isaiah talked about the importance of this tree in Isaiah 6:13 when he stated “But yet in it shall be a tenth, and it shall return, and shall be eaten: as a teil tree, and as an oak, whose substance is in them, when they cast their leaves: so the holy seed shall be the substance thereof”

What Does Relief Society Mean

With a basic description of biblical plants, going back to the original question, “What does Relief Society mean to you? In the sense of what value does it have to you?”

The original answer to mom was: to me it is an organization or the gathering of the women to strengthen everyone in friendships, help each other build a resource of talents and skills to share with each other, be source of testimony and faith builders or supporters during struggling times.

Recently I have come to view faith and testimonies in a different light. Yes, the church teaches using the parable of the mustard seed to teach about faith and testimonies. However, with the trials I have been through lately, I have looked at the differences between mustard seeds and plants, acorns and oak trees, and have gained a different perspective.

Currently perspective on the mustard seed parable states that while yes the seed is very tiny and if fed and nourished it will grow quickly. However, for some this quick growth is not enough for the faith and testimony roots to take hold. Without a solid foundation due to the quick growth, if neglected for any time at all that plant or testimony and faith will falter and may wither and die just as quickly.

Depending on the climate (level of access to religious and moral support) and location (availability to make friends with strong testimonies and lots of faith) of the mustard plant, great care is required to maintain the plant properly. When talking about members, some members do not have the physical strength, spiritual strength, endurance, or faith to weather the trials and storms as they arise to keep their mustard plant of faith and testimony strong and thriving.

However, when looking at the acorn, once it drops to the ground, those that are not gathered by animal, people, crushed by mowers, or destroyed by other means endured the first trials. The next step in their journey is to slowly sink in the soft mossy beds, or get buried by leaves and over the rest of the fall and through winter slowly soak up the dew, rain and snow.

With time, the acorn slowly sends a root shoot into the earth deeper and deeper. Soon the acorn will begin to send a shoot up towards the sunshine soaking up the sunrays. Give this acorn a few years and the roots will spread out and branches will begin to spread and leaved form.

A testimony of faith slowly build over time with solid understanding will create strong roots like this new oak tree. Once matured in a few more years that individuals faith will be solid and that testimony unshakable.

This is where the Relief Society as an organization becomes important for each sister in each ward. As sisters we are responsible to help ensure everyone has the opportunity to gain, keep, and maintain her Faith in Christ. This is accomplished through the gathering of the women to strengthen everyone through friendships as each sister helps one another build a resource of talents and skills to share with each other, become a source of testimony and faith builders and supporters during struggling times.

A Sample Letter to Request Senate or Congressional Help is Available

2011-10-29T08:15:00.003-06:00

By now it is know that our family has gotten the attention of the Colorado State Senate office and I also know that this is not always an easy task to accomplish. With this in mind I also know there are others out there fighting with the banks, over houses. If anyone needs or wants the same attention and help fighting a bank issue please send me a private message with your email and I will GLADLY email you a sample letter with everything you need to get their attention.

Just know you will have a copy our letter so you will need to change it match your situation. However, within 2 weeks of sending out our letters we had a senators office call us letting us know they are willing and WANT to help us fight Well Fargo.

You just have to state the situation clearly, what you have done to recitify the situation, how you have worked with your bank, how well they have or have not communicated back with you, and how long your selling process has been in process.

If you are in the process of fighting with the bank you have other options as well while you wait for additional help to come. Take the same letter you wrote to the senate/congressional offices and sent that into the HUD complaints office under the fraud section.

If military contact your VA loan represenitive. Let them know what the bank is doing. There are options for help to assist you fight the bank.

If a sample letter is needed my email is listed. Please email me and I will send out a copy of this letter.

Also post a copy of your letter on Facebook, your blog, anywhere to make it public. This does not settle well with the banks and action happens faster.

Some boxes unpack MANY to go

2011-10-28T21:37:00.000-06:00

Well we have some boxes unpacked and STILL have TON to go. But the best part is the fact that we ALL have our own beds and real beds at that!!!

The first rooms we made sure to set up were the bed rooms. Most of the clothing is in drawers, beds put together and made. I am SO oh so happy for a real bed and my own bedding. I am finally in a confrotable bed with plenty of blankets and NOT freezing YAY!!!.

Tomorrow we get unpack more boxes, set up the gorilla shelves in the storage shed and in the laundry room, set up our dining room and kitchen. FINALLY! I get to try eating something something that is gluten free and see if my body tolerates that without horrid cramps and spasms. If this is the case then one of the griddles will be set aside ONLY for me and my foods. I will make some oter foods in small portions, then on payday get some baking pans that I will lable for GF cooking only.

If I have to return to a GF diet I will. I may have to return to CF diet as well too. However if this allows me to eat, control my BGL's (blood glucose levels) due to my hypoglycemia and other GI issues. I can't wait to play with my kitchen aid again as I miss making bread.

The big question right now is can I make gluten based breads for the kids and frank, or will that adversly affect me, or will I be ok as long as I do not injest it. Can I make the breads and goodies if I wear gloves.

I have to findout just how bad my body is reacting right now. What I do know is that everytime I eat ANYTHING not GF then within 15-20 minutes I am having such bad cramps I can barely stand and have to take my strongest pain killer meds just to tolerate even laying down.

Met my new doctor today...

2011-10-28T21:24:00.002-06:00

Had a good dr's apt today. I really like this dr. Not only did she listen, but she ACTUALLY read through my files today to see what was going on before the apt. She came in with a game plan in place. Even though the apt was short I left with the 2 meds I needed refilled, 6 referals to the University of Maryland instead of John Hopkins.

She prefers I be seen there because everyone wants to be see...n at John Hopkins so they have a much higher patient count. Apt wait times are higher there. With the level of medical care in this area being what it is all major facilities are competing against each other are all top rated.

I will be seeing GI specialists for a complete GI work up, GYN specialists to have the ovaries removed and biopsied ASAP. (forget who will biopsy the liver)... ONC for a full cancer screen and work up, Diabetes specialits due to my hypoglycemia so I can learn how to better control my BGL (blood glucose levels) through diet and what to do when my BGL's drop or fluctuate to much for my body. Pain Management Clinic for the degenerative joint and bone disease and arthritis issues.

In addition, to all that I have to have another mammo then an ultra sound of the lump that was found. This is due to not being given a disc with the mammo results so this has to be redone. Not only is this benificial according to the dr, but they will be able to monitor the recorded size and make sure rapid changes are not happening due to past and family history.

I will also be following up with her every month to ensure the specialty dr's are doing what needs to be done, and if not that will allow her to keep in contact with the teams and on top of all treatments.

Between the dr's apointment, the senator office call, and the household goods delivery, I am happy with today.

Interesting call while the movers were unloading the truck...

2011-10-28T21:23:00.000-06:00

During the unloading process I got a phone call from Senator Mark Udall's office this morning concerning the serious isses we are facing with Wells Fargo. Things got really interesting with the movers as they realized the call was not just an ordinary phone call but yes I was truly talking with someone from a state senators office.

Everytime they brough boxes over instead of going right towards the kitchen they altered their path towards me to listen in. One would hang back, then report back to the others. I heard things like "wow she really is on the phone with the senators office!" "What did they do to get a call from them?" "What state is Mark Udall from?" (by the way Denver Colorado) "WOW! Are they really getting help from them, and how did that happen?"

During this process I was "pretending" to ignore the fact that I knew they were listening in and making those (and other) comments. I actually thought their reaction kinda funny. Then suddenly when I had to head upstairs to get information off my laptop suddenly boxes that had been left downstairs were being taken upstairs and into my room, one packer at a time.

It seems the letter that we wrote not only hit a nerve, but explained the issues well enough to move them into action. I have another friend who... has also sent out a TON of letters in our behalf trying to get help as well. I was asked to pass on his email so they could find out just what has been done on his end and ask those senators to stop what they are doing, but help in research if they are willing.

According to his main secratary once the process begins it can take up to a week before the senate office contacts the bank. Once the bank is contacted there is a 10 day window for the file to be processed open to close. If the process is not completed then the bank then has to deal with a congressional proceeding. Apparently this is something the banks NEVER want to deal with.

We have a case and situation that warents the senators office stepping in to help us out. FINALLY, a break for us with the house... YAY!!!

Please keep in your prayers that this process will go through quickly and Mark Udall will be able to force Wells Fargo to cooperate and finally allow the sell of this house before we lose the sellers who want this house.