Nice Calm Day

Today has been a nice a quite day. The kids have enjoyed stay home and making new friends. Celidah got invited to watch a movie and Jade a new friend go grocery shopping.

I took it easy and rested. There was really not much to do in the small apartment. While I am starting to feel somewhat better I am still finding it hard to much food at all right now. We are looking forward to attending church tomorrow, and have been invited to an old friends house on Monday. We will likely set a time tomorrow for when we are heading out there. Friday we are looking at meeting up with some other friends after the kids get out of school and Frank is off work.

Not to much to report other than we had our first nice calm day.

Starting School Frustrations...

Wow I never knew that starting school would or could be so frustrating and challenging. Colorado has been in session in Aurora for 2 weeks, in Longmont for 1 week, in Arizona for 1 month and Maryland for 2 days for elementary, 3 days for high school and 1 day for preschool and kindergarten.

We meet with the elementary school principal, school nurse, and spec ed team on Tuesday to ensure proper placement for the kids here. It seems in Arizona a child with a medical disorder and limited physical abilitied qualifies the child for an IEP.

Jade had an IEP when she was in preschool due to her Autism and now with an Autism/gifted classification the school here wants to ensure that she has the right placement and an IEP if needed. Corbyn may need an IEP due to his platelet disorder for sure a 504 plan. Chantelle, well they are NOT sure what to do with this little princess and her complex medical issues and food allergies. Hopefully the younger 5 will start school on Wednesday.

Then we have Celidah who is entering high school but will not finish the 9th grade in Arizona, and may or may not graduate in Maryland. Her guidance counselor here in AZ is also her military liason and wants to coordinate her schedule to make sure all her classes will transfer to Maryland. The school here is willing to offer her an unusual and modified schedule if needed to ensure she has classes that line up with their program. This I think is outstanding.

However, Maryland is far east and by the time I was able to call the guidance counselors had already left for the day and no one is available for helping us out until Tuesday due to the holiday weekend. So She will not start school here for sure until Wednesday.

First Days in Arizona (Exhausting!!!)

Well we have arrived to Arizona and what a couple crazy busy days we have had. The past couple days have been totally jam packed with things that had to be done and most ASAP.

First off we had to figure out where Frank needed to report and get that process taken care of. In addition to getting him reported in we also had to relearn the base as there have been so many changes. Once he was reported in the next thing we had to do was to find a place to live. That was a challenge as the NCOA Academy has many soldiers reporting in and many others currently in classes so the TDY housing was unable to fill our family size needs until the middle of the month.

We finally found a place to live. Knowing we had little time we meet with the leasing office to get the apartment so we would not be sleeping in the truck one more night. We got the apartment and willing took the apartment with water but no electricity. We did this knowing that the apartment would be cooler than sleeping in the truck all night. We left the cat and the trailer at the apartment and headed back to base.

We headed off to the medical clinic to transfer our medical care over. Finally, we were then able to head back to the ACS (Army Community Services) building and grab a Welcome Packet for the base as it was to late to get registered into the medical clinic system.

 With that done were able to finish the final steps in getting Frank reported in. Reporting is a long and annoying process but must be done in a certain order. Finally totally exhausted the first day on Ft Huachuca was coming to an end. Knowing we had no electricity we headed to our new home and put as much stuff away as we could before it was dark and ate a cold dinner. By this point, everyone was exhausted and more than ready for bed.

 Day 2 in Arizona came way to early as Frank had to be on be on base by 5:20. Our bodies were shocked with a cold shower. After dropping Frank off I returned home woke the kids got them all in and out as quickly as possible, returned to base to give Frank his forgotten folders. Once he had all the papers he needed we headed back to the medical clinic to get the kids and I registered in system then we ran to Walmart to get new school supplies for the kids and backpacks. With new school supplies we sorted everything out while eating breakfast on a bench there in front of the store then left to find the schools the kids were assigned. Got the registration packets for me to fill out.

At this point I got a call from our relator letting me know the bank was telling him they had not received most of our stuff for our short sale on the house. We have buyers that are anxious to purchase the house. At this point I searched my way back to ACS to find out if they could help me scan and fax my documents. They were unable to help me so I was instructed to head over to the education center.

 Almost as soon as I started scanning the power started fluctuating, then it failed. The scanner died and the computers did as well. Eventually the power returned. However, what we thought was a power outage due to a lightning strike, turned out to be from an electrical fire on base.

 After fighting for over an hour and NOT succeeding, frustrated we met frustrated we met with Frank for lunch, vehicle inspection, to make sure all papers were in order and signed. After lunch the kids and I headed over to the UPS store where they too were experiencing severe technical difficulties. In the end, I made a copy of the needed documents, express sent them overnight to the relator so he could scan and fax and email the documents in for us.

With that finally finished we headed back to ACS again this time to the lending closet to borrow some much needed items. As we were starting to drive the lightning struck and thunder clapped so loud it scared everyone in the car. I jumped so hard.

By this point the kids patience and tolerance for running around, errands, delays, technical issues, and frustration were starting to push them over the edge. However, they did very well regardless and they were so GLAD when we started to head home and got most of the way home and Frank called letting me know he was done for the day laughing at his timing, we turned around, grabbed him, headed home. At that point he discovered the power was still off.

The kids and Frank continued putting stuff away as I rested and started on the 6 school registration packets. After a quick call we discovered the power was actually on but a switch was not flipped. YES!!!! we had power.

Finally, a nice hot dinner, and off to bed. Once again we crawled into bed totally exhausted!

Just ate breakfast

We just ate breakfast at the first restarea inside Arizona. What we had forgotten about was how bad the flies are. Oh my goodness they flies were SO BAD and annoying. The other issue was faced was the only good drinking fountain was infested with a bee hive. We had to get creative and work as a team to get creative to get water. We had to wait for the bees to to get inside the drain, hold the bottle just right, have another person hold the button for the water to come out and catch it before the water hit the drain. If the water hit the drain the bees would go wild. So once the bottle was full I had my helper step back quickly and I stepped back as quick as I could.

We are now back on the road and just a few hours away from Ft Huachuca. The kids and the cat have all been great, and the trip has been mostly been uneventful.

just passing through Peublo

We are just passing throughPeublo Colorado. We stopped at a rest area just outside Peublo where we were able to cook up hotdogs for the kids. Thanks to the griddle and one plug that worked we cooked up very delicious smelling hotdogs making the area smell just so good.

The maintence worker fell in love with the kids because they were being so good and gave them an extra treat allowing them to also have a popsickle as well. This made them very excited. So we left the rest area with happy kids with full bellies, exercised, ran played with their hulla hoops, played in the grass and now ready for sleep.

The cat loved being able to explore as far as the leash would allow however, was annoyed when a bird flew near by and he was unable to catch it.

As we were leaving I had to reshuffle things from the back of the truck into the front of the trailer. Due to this we forgot to shut the back of the trailer. Thanks to another driver with a trailer, they quickly pulled in front of us allerting us something was not right. We quickly as we could pulled off to the side of the road, fixed the trailer, and got moving again. Thanks to the quick alert nothing was lost.

We have left the state of Colorado later than expected due to saying our good-byes to firends, leaving keys at the house for the realitor, talking to the post office, and filling the gas tank. Right now we are about 90 miles away from the New Mexico boarder.

About to pull out

The time has come for us to leave Colorado and head to Maryland. We need prayers in behalf of our house though. The house has been on the market for a while now and we have an offer for what we are asking. YES!!!!!!!!

What we neeed prayers for is that the bank will allow the shortsale of the house. We have to shortsale due to the many foreclosures in the neighborhood, the current economy, and the fact that we have to relocate due to military orders.

We just got notification that the bank is sending an apraisal officer out to conduct the Interior Liquidation Appraisal of the Property. This will allow the bank to determine if the bank is properly valued at the current market value.

So far the only offer we have at the bank is the only one for the full price we are asking. All others are below or well below our listed price.

Please pray that the offer goes through and the house sells quick allowing us to move debt free.
By the way, Ellies lungs are still up and down, and Corbyn's platelets are up and down again and currently at 20k...

The Blogging Addiction has Begun HAHAHA

Well so now my oldest daughter has started her own, my sister in law now has a blog. Hmm who else can I get invloved in this???

The family blogging adventures begin and continue to spread hehehe...

Random Thoughts and Memories (Celidah)

Okay so mom told me to type about my favorite memories from this state. The first one that pops into mind would be my twelfth birthday party.


Mom and dad stayed up late into the night to get it ready. The next morning at about 6:00 am, I got up for some reason or another on a Saturday, and tripped over something on the floor. When I got up using the door handle, I noticed there was something on the handle. When I took a closer look I saw it was a camo trick or treat basket- pail- thing… Anyways! I was curious as to why there was a trick or treat basket on my bedroom door handle at 6 in the morning on Saturday, march 21st, 2009 (I think? I don’t remember the date very well. All I remember was that it was like a week or two past my ‘uncelebrated’ birthday.) Well I took the trick or treat candy collector off the door and in it saw BUTERSCOTCH AND STARLIGHT MINTS AND PEPPERMINT CANDYS!!! I was sooooooo excited to see all my favorite candies then I realized there was a string attached to the candy bucket. I opened the door and saw MORE butterscotch, flavored peppermint, and peppermint. But this was not just laying down on the ground, it was taped to string like it was on a spider web! I was the only one awake at this point and I was really curious about what else there was, so I followed the web down stairs. As I got further down, I saw gobbstopers and peppermint sticks and life savers and the big-ish puffy peppermints that just melt in your mouth. Ohhhh they are SOOO good! Back to my story! Well I got to the bottom of the stairs and then I was PRESENTS! I saw one pink crock, (at first I thought this was something for jade ‘cause pink was not and still isn’t my favorite color, but jade loved the color at the time.) a really cool Frisbee, a baby lamb Fur Real Friends ©, some shorts, a shirt that said daddy’s little girl, and one cool sock. I didn’t want to get in trouble so I headed back up stairs and was almost back to my room when dad caught me. At first I thought I was in trouble, but then he told me this was my birthday gift. After everyone else woke up, I got to untie my presents and ate waffles with whipped cream and fruit for both my cake and my breakfast.

Okay the next favorite memory would be my first blizzard. When I heard from the TV, there would be snow, I was so happy and excited. One thing the TV didn’t tell us though is that Colorado snow is much colder than Arizona snow… In Arizona, you just needed long clothes and socks on your hands and the snow only lasted thirty minutes to an hour. Here you need winter gear! I ran outside with socks, sandals, jeans, a sweatshirt, and another pair of socks on my hands. Bad idea. Very cold and bad idea! I didn’t even last five minutes out there! I had to come back in the house and get the clothes mom told me to get on. Gee, for some reason I was a LOT warmer. It may be a cold memory, but that was the first time I saw real snow.

Throwing Leaves in the House! (Ellie)

Zach and I got a big gargabe bag into the house and there was a hole. We got all of the leaves out. The leaves got all over the house. We dumped it. And we jumped in the leaves. And then we threw the leaves. The leaves got ALL over the house. All over the front room and dining room, and the couches, and the stairs, and kitchen.

Oh and then we slideded down the stairs. We were having so much fun in the leaves until Mommy came home. Mommy took pictures even though the house was a mess at the fall time.

Those leaves were dead at the fall time. They were crushed and orange, and yellow, and brown. Zach and I was 5 and 4.

Playing with Zander (Zach)

Playing Tanks on the Wii with Zander was so much fun. Well because it was my very first time playing that game with Zander. You get to help the other person. There are red and blue. Blue is the leader. Level 7 is the hardest. The game is harder is each level. The 1st level things don't move, but the 2nd level things do move. The 3rd level 2 tanks move and 1 stays in one place. The 4th level, 2 tanks don't move and 4 do move. The 5th level all tanks move but the tanks you are going against shoot missles but you can destroy them. But the last level is the very hardest, you have to go against the biggest tank. And it has 10 cannons instead of 1, but it is a robot and a tank.

Zander is my best friend. Well he is there for me when I have noboy to play with. He treats me really nice. Zander is my best best friend because is the very first best friend I got. And he is the same age as me. His birthday is May 14th. One day after mine. I like to play hide and go seek in his basement too. I like his big back yard and the slide and playhouse. I got to help to Zander do chores and play with him longer and we got to see and play the old xbox. To bad that died. Zander had lots of games for his xbox and his wii that we liked to play.

Random memories and thoughts by the kids

Over the next few days the kids will all be posting various and random thought and memories from our time here in Colorado. This is part of their school exercises as well as the family journaling experience.

My goal with this is to bring all the children more into the blog and truly make this a family experience. In addition, teach the children that blogging can be fun. This is also meant to help draw out the creative side in each child and help them find their writers voices.

Through this experience I know the kids will look back and see just how much their writing skills will improve. As they gain confidence more flair and vocal expression will begin to emerge.

This experience will not mean much to the children now, however I know when they become parents and grandparents and have this printed the ability to look back on their childhood adventures, perspectives, and experiences will be greatly appreciated. This will be appreciated not only by them, but by their children, their grandchildren, and future grandchildren to come.

Lost in Church (Memory by Jade)

I remember getting lost in a church, I had to go to the restroom and when I came out mom was gone, I spent the next seven minutes in the bathroom waiting for mom and I got bored. I started playing on the flour with dust on the flour and I got caught by the janitor. She made me jump a mile high. The janitor had me wash my hands with antibacterial soap. We headed out to look for mom and finish cleaning. After almost 30 minutes of cleaning and looking for mom she said “where did you see her last?”, “Well I think I saw her at the bathroom.”, ”Ok.”She said ”lets go,” and we did find her there. I and I asked “WHERE HAVE YOU BEEN?” Mom said “I have been here the hole time and where have you been?” “Well I have been looking for you, but I could not find you!?!?!?”

Colorado Memories (Jairon)

I am going to tell you about playing with my friend Brian Bach. He is awesome his games are awesome. One of his games name is fudoo adventures. My fudoo character’s name is Crookfox, his weapon is a set of bow and arrows and daggers.  Brian Bach’s fudoo character’s name is Whistler. Whistler is a gerevins. A gerevins is a monster.

About to Leave Colorado

Well we knew this day would come but this is still a sad day for our family. We loved Colorado almost the instant we pulled into the state. There are hills, mountains, lakes, and most of all trees everywhere. We have greatly enjoyed our 5 1/2 years here. I know it does not seem like we have been here that long but Chantelle (Ellie) was just appraoching 6 months of age when we arrived.

Our arrival to CO came with many unknows, the biggest was with our littlest Princess Ellie Rose as the hospitals in AZ called her. She was so tiny and so sick. Zach was getting much bigger and close to having his feeding tube pulled, he just needed the right peds dr to help him see he no longer needed it.

Chantelle has gone by several knick names as she has blossomed over the past 5 years. Princess, Princess Rose (the nurses loved a rosey cheeked baby) then when Nana called her Ellie they would call her Princess Ellie Rose. Later she would be called Ellie-Bug as she learned to scoot even with her tubes and wires.

We learned to sleep and adventure into the world with her oxygen, monitors, pumps, everything needed to help her sustain life at her most critical points while home. We developed as much a balance as possible those crazy times she bounced between home and hospital. We developed relationships with home health nurses.

Then our world was torn apart here in CO when I (mom) suffered mini strokes and lost my ability to write, my speech, walking, balance, basically everything was effected. Not severely, yet enough to make life challenging for all. As we slowly put our lives back together Chantelle continued to suprise the dr's and grow, and not only grow but seem to be slightly healthier each month.

Before we knew it she was turning 2. This was a birthday that was not supposed to happen. Unfortunately we had to cancel that huge party because she was so very sick and back in the hospital. But she was 2! The drs at National Jewish and her drs at Children's were stunned but thrilled. Then after a few more bumps, proceedures and surgeries, before we knew it we were meeting with her National Jewish team (for the last time) just before her 4th birthday. At this appointment they were stunned not only with the fact that she was indeed 4 but how vibrant and healthy our litlest Princess was looking.

This appointment was different than the rest. Instead of telling us not to plan her next party because children like her do not life (x amount of years) they simply told us "We do not know what we are doing (her whole team of National Jewish AND Children's dr's) or what you are doing, but what ever it is keep it up because whatever it is, it is working. We do not know how much time you have with your child so treat everyday as blessing. Count every day as another blessing. Enjoy each and every day you are given with her, because she has far out lived all her expectations to this date." After her full exam they let us know she was still very small for her age, but considering her list of medical issues one of the healthiest and most active they had seen especially for kids still on oxygen. We were sent away with their blessings knowing that she was in great hands with her family and current dr's.

We have since then done our best tried to make each simple park trip an adventure for the kids. Taught them how to use their imiginations to turn the things around them into whatever they want it to be. The simple rock climbing wall becomes the mountain to climb and conqure.

Then Nov 24, 2008 our world was rocked once again. Our oldest son was diagnosed with a very rare platelet disorder. At diagnosis his platelet count had dropped down to 1. His peds clinic while they treat only special needs kids had never seen a platelet count of 1 and were freaking out. (LOL later talks with Glenda I asked how she thought I felt, if she as freaking with a child with no platelets, she only laughed, then told me I was lucky enough still to no know the full scope yet.)

The normal platelet count is 400,000-500,000 but dr's do not worry unless under 150,000-200,000 because that is where is low platelets are dangerous. Our son was sitting at 1000. The machines only read in 1000's per unit of blood. After 8 hours in the clinic that day we were sent home told to be extremely careful on Thanksgiving and return on Monday for another blood draw. But ensured within 6 weeks his counts would be normal. The following Monday he was still at 1. The drs were concerned.

3 weeks later, still at 1, so he started prenisone and we returned 2 weeks later, finally a minute rise and off to the hemo we went. We were reassured nearlly ALL kids self recover with time and prednisone. She told us within 6 months he would be back to normal just like nearly all the other kids she had seen.

9 months later we were still doing IVIg and getting little responce. 2 yrs later we tried a chemo med that puts 80%+ patiends children and adults into remission so we did 8 doses not the normal 6 doses. No respose. By this point he was clearly chronic refractive idiopathic thrombocytopenic purpura (ITP).

In other words or should I say easier to understand terms (chronic) long lasting (refractive) not responding properly or at all to meds (idiopathic) a word a LOATHE and (yes worse than hate), means we do not the cause or where it comes from, unknown cause, (thrombocytopenic or thrombopenia) means to cause a drop in platelets, (Purpura (from Latin: purpura, meaning "purple") is the appearance of red or purple discolorations on the skin that do not blanch on applying pressure.

We are now nearly 3 years into this adventure of our lives.

Arizona adventures introduced autism and wonderful people to help us and our 12 yr old daughter with her unique outlook on life. Chantelle with her breathing, eating, and collection issues. We left AZ with 1 child with a feeding tube soon had 2 kids with feeding tubes in CO.

We now leave CO with only one child with a feeding tube but only her feeding tube, ITP, and return to AZ for 2 months of adventures, then head off to see what adventures await us in MD.

I short trip and perfect party in the eyes of a 5 yr old (almost forgotten about)

I had almost forgotten about this until I was recalling this to my sister in law. After telling her this story she told me I needed to make sure to blog this.

A few months ago I recieved a call from Nana letting me know that Ellie had called her telling her all about her big and exciting 6th birthday party plans that she was SO excited about. She was pretty sure that neither her father nor I knew anything about her party plans.

Ellie had called Nana on my cell phone herself and was beside herself with excitement because we were all going to Disneyland for her birthday and could not wait for her Princess Party with all the Disneyland princesses. However, the funny and cute part that told Nana that mom and dad knew nothing of this party was how everyone was getting to Disneyland and the travel time frames. When I asked Ellie about this she informed that this was indeed her plans and this is how it would work.

Knowing our family would already be in Arizona on her birthday due to a class her daddy had to take, Nana and Poppy would make a 2 hour drive in their truck with all 6 of their dogs from Northern California to Southern Arizona where we would then have breakfast with them and feed all the animals together. Because our turck (GMC Yukon) is so very big and can hold every with so much extra room, we would all load up with their 6 dogs and our dog (this was just before our dog was hit and killed by a car). Everyone would all have seat belts because the car is big like cars on Harry Potter.

We would leave Southern Arizona drive for 2 hours to Southern California eat lunch early so we would have lots of extra energy. Spent the rest of the day because there are now 12 hours left in the day and have her extra fun and speical Disneyland Princess Birthday party.

Now that the day was over and everyone had fun we all load back up in the truck and make the 2 hour drive back to Northern California and take Nana and Poppy back home so they and the dogs could eat dinner. We would then make another 2 hour drive back home so daddy could finish the last bit of his class as his teach only would let him have part of the day off.

When I asked her about Nana and Poppy's truck she told that is ok their truck will find it's way home. You know now Mr Weasly's car came back when it was really needed? Well when Poppy needs it bad again it will just come to him too. ( Tried really hard not to laugh at this 5 year old Harry Potter fan logic.)

The funniest part that a five year old could NOT comprehend is the drive from Northern CA to Southern AZ is 992 miles and just over 16 hours without any stops.

Heading from Southern AZ to Disneyland is another 545 miles and 9 hours, again no stops

For Nana and Poppy to head home (or even just meet us) is 459 miles or about 8 hours

Her entire trip round trip would have been nearly 3000 miles and taken 2 days with straight driving no stops for food, gas, potty, sightseeing, let alone anytime to explore Disneyland. Her trip would have been a weeks trip. So not a 6 hour trip.

However, I do LOVE the creativity of a child and the dream trips they come up with. What was not fun was that it took us nearly 2 months to convince her that we will NOT be going to Disneyland on her birthday and that her grandparents WILL NOT be driving down to meet us either in Disneyland nor in AZ. She finally understands that YES she is turning 6 in AZ, but will NOT be going to CA or Disneyland on her birthday.

What we do not yet know is what we are doing for her birthday other than visiting the NICU and the Ronald McDonald House near the hospital where she was born around her birthday.