Tuesday, December 11, 2012

The Joys of Kids...


"Mom! This is the MOST important paper in my Tuesday folder and you HAVE to sign it so I can get it back to school tomorrow!"

Zach came running to me waving a paper and telling me I just had to sign it so he could watch the Polar Express, have hot cocoa, popcorn, and a candy cane at school while wearing his pj's and slippers.

With his excitement I read through the paper and right away I see the "IF YOU DO NOT" part of the flyer. In the flyer it clearly states to NOT sign or return unless the child needs a different snack or can't participate at all.

Well, I tried to explain this to Zach that this is one paper he did not want me to sign and have him return. "Oh but mom, you just have to! Every paper from school has to be signed and returned!" Once again I tried to explain to him that this time was a do not sign the paper. This was not working.

I went line by line with him and still in his excitement to one of his favorite movies in his pj's and have snacks with his friends he was not understanding the concept of the "DO NOT" sign and return.

New approach...

Zach read this part

My child is not allowed to participate in the viewing of the Polar Express or the snacks with the 3rd grade classes.

My child is allowed to watch but may not have the provided snack and the following ____ snack will be sent in.

So we talked about if he took his own snacks it would be apple juice and apple sauce as that is the snacks we have to send to school. (At this Ellie was freaking at the thought of Zach taking her only allowed foods to school). I let him know if he took his own there would be NO hot cocoa, NO popcorn, NO candy cane.

If we checked the other box that meant NO pj's, slippers, movies, or snack. He would be in another room doing school work instead. At this he was nearly in tears and said "But mom I want to see the movie that we all earned as a grade. I want the snacks. I want the pj and slipper day."

So I let him know again that the paper can't be signed if he wants to do those special things and tore then tossed the paper.

LOL so one again he is excited that Dec 20th he gets to watch the Polar Express in his Pj's at school and have the special snacks with the rest of the 3rd graders.

Wednesday, December 5, 2012


"How are we doing? Our Goal is Outstanding Service. At Apria Healthcare, we're focused on ensuring that every patient experiences the highest level of service possible... We want to be your first choice...Was your order accurate and on time?"

From a pamphlet inside the PARTIAL order we received with Ellie's order today. Let's break those questions down...

How are we doing? Not well at all... Yes we knew we would not get decent customer service, the orders would be wrong, and her scripts would be sent back and forth making us and her doctors frustrated. Knowing this in advance why did we go back to Apria? Well because we had no choice. No body else (in our insurance network) was willing to take our daughter and her complex medical needs on. If I had the choice I would NEVER have left Pharmaquip. They were doing a wonderful job, but they are out of network. With upcoming changes I cannot afford to have the 25% out of pocket copay.

What is it about Apria that I upset and frustrated over? For nearly a month now we have been fighting with Apria to get her prescription order corrected and the needed supplies sent out to us. I have spoken with Apria 4 times now to get her address corrected in their system because we have moved. How hard is it to plug in the new address and get the address to stick?

When we were changing back to Apria, I emailed our DME list with the reference numbers for EACH item, the amount of each item we have been receiving to the GI doctor so the prescription could be sent in. Last month the GI office sent in the script for the GI needs and her local peds doctor sent in the respiratory script. Apria sent everything (even the respiratory) back to the GI clinic claiming the scripts were all incomplete and needed more information.

Well the scripts were sent back with more complete information. Again the scripts were sent back to the doctors claiming they needed to be separated out and individually signed. Again the clinic (annoyed) but followed through. By this point I got our Tricare case manager involved and had her communicating with our GI clinic as all involved were becoming very frustrated.

Needless to say the past couple days have been even more frustrating as Apria has been demanding more ridiculous things. As of today they are telling me there will be an additional 5 day waiting period (at least) as they wait for the insurance approval for her formula. (UGH!!!) they have preapproval already!!!

Oh and this time they said the formula and pedialute scripts were not good enough because the cans and liters were not broken down into specific kcal and ounce amounts per day. Because there was not an exact kcal and ounce amount per day they could not honor the scripts??? What she is SEVEN YEARS OLD???? Come on what child who is 7 needs to know the exact kcal, fluid ounce amount, and pump run time per day?

Today alone I have spoken with the GI Clinic, the case manager, and Apria several times. At one point I thought I was going to lose it, and had to work very hard to keep my self together.

The delivery from Apria we got today did not help matters any.

She got:
25- 500cc feeding pump bags (needs 60)
30 Ferral Venting bags (Yay this is right)
5 g-tube extensions!!
5 j-tube extensions!!
10 tagadern (?? normally get 30-90)
20 3x3 duoderm (normally get larger sizes)
6- 60cc syringes
10cc syringes (no 5cc or 20cc normally a variety)

What we are missing:
35- 500cc feeding pump bags
2 feeding pumps one for formula and one for pedialyte
formula and pedialyte (so glad the GI office has some set aside for her. I just have to call tomorrow and drive in to get it.)
gauze
gloves (home and school)
masks (home and school)
nebulizer kits, masks, filters (for home and school)
feeding tube kit (GI wants us to receive the extra kit at home and bring in when needed)

I guess now she is only supposed to eat 25 days out of the month or we are supposed to be reusing the bags and hoping they keep working. Also HOPE that Pharmaquip will let us keep using the pumps for a while (and not bill us).

Hmm does this sound like the highest level of service, on time, accurate, and leading to first choice for a DME? For me Apria was literally our LAST choice as a DME provider. We only came back to them because we had NO ONE else we could go to. I hate the fact that I have to realize my daughter is a very medically complex child. We work very hard to treat her like we do the other kids and like we would a normal and "healthy" child. I fully understand there are accommodations we have had to make for her, but I see her as close to normal as any of our other kids.

Monday, December 3, 2012

Genetic Testing Has Begun


Today we added Genetics to our team of doctors for our little princess. I like the team we met today. Not only do they seem good, but they seemed to want to help figure out what is going on with her. What stumped them the most today is the fact that not only does she have the laryngeal cleft/GI motility issues (along with the high palate) but also she has symptoms of interstitial lung disease.

The most perplexing issue for them without my having brought her records (something I totally forgot to do this time) is what in the world caused her rapid respiratory decline in the NICU. What is it that caused her lungs to keep having pneumothoracic eruptions? Why did she require four chest tubes within less than 24 hours of birth and almost require ECMO? She started out with good APGAR scores then suddenly declined. This is not normal for a 33 weeker, especially one that was 5lbs even.

We talked about some of the syndromes that she had either been tested for or we had discussed but she did not hit enough symptoms to do genetic workups for. She was tested for CF several times, those came back negative. PCD Primary Ciliary Dyskinesia, (a pulmonary disorder) came back negative. At one point when Ellie was an infant we discussed VCFS as a possibility. Once again she did not hit the two biggest issues, one specific heart condition, and cognitive delays were not enough.

The genetic doctors were not happy she was never evaluated for the seizures she had as an infant and toddler. They also were not thrilled about the fact that genetic wise she was not worked up because due to the cluster of diagnosis list, she was not supposed to live very long any way. To this point Ellie has surpassed every life expectancy we have been given for her. Because of this we have learned to live each day as a blessing and tried to treat her as we would any of our other children. We have worked to give all our kids as normal a life as possible because each one is a true blessing for us. This team is thrilled that she is doing as well as she is in school and we have a dance teacher that not only will let her be in her classes, but also is accepting of her special/medical needs and tolerates her absences as needed. I was also told to tell her dance teacher thank you for them for letting her dance with her. Apparently, this is rarely found in dance teachers and even more rare in good dance teachers.

Today proved to be a perfect day for this appointment too because she was having a very sleepy day. One of those days where we just could not wake her up no matter what we did. She sat while sleeping on the chair scale this morning. I picked her up and carried her to the exam room where she continued to sleep. Ellie slept while I went through with the resident genetic doctor about everything. He did a basic exam, then left.

The main doctor came in, we spoke more, and then she examined her again. Ellie slept through almost all the exam. What surprised me was she slept through her reflexes being taken, the sharp tools rubbed on the bottom of her feet and up her legs. Finally, as they were sitting her up for the final part she was waking up. Groggy and sleepy eyed, Ellie sat and finished the exam.

The genetic testing today started with blood and urine work. While much of this will not come back for up to three months, it hopefully will give us a start where to look.

They are starting with a specific genetic disorder in mind that causes severe GI dysfunction and laryngeal clefts. There are other issues to rule out as well. Tests for mito and metabolic disorders were also started. We will see what road these tests lead us down.

Monday, November 19, 2012

Follow Up


We saw the GI again today and Ellie is now at 45 1/2 lbs!! So happy for good weight gain. Not as fast as the dr wanted to see with moving to the GJ, but she is thrilled with steady gain. We talked about the Neocate issues and she is concerned about Ellie having constipation issues once again now that we are on the new label Neocate and wants us to try Elecare. We are to try the transition slowly to make sure she is not reacting to it.

She is thrilled though that she is getting more color in her face and her skin coloring is closer to normal. That was the first thing she noticed. She can't wait until her coloring is better and the dark rings under her eyes are decreased even more.

We also talked about our upcoming appointment with the Genetics dr, she is glad this is coming. This is to rule out several things to include possible mito and Elhers Danlos Syndrome. Just “maybe” for the first time she may be actually classified instead of remaining on the idiopathic realm. However, whatever the Lord has in store for the amazing princess is what we will handle in stride and continue to work with her dr’s with.

All in all things finally seem to be moving in a positive direction for Ellie for the first time a very long time. 

Sunday, November 18, 2012

Neocate Formula Users PLEASE Read and pass on!!


This has some very IMPORTANT information that needs to have many sets of eyes and ears out for. I am taking this from other posts and some of this has my words and some of this the words of others. PLEASE take this information seriously, take note, and pass this on.

This is very important that ALL of you keep your eyes and ears open. If you see people posting about their GI kid suddenly getting worse, ask about them being on Neocate. I know this this may sound crazy and more crazy to assume that their child/ren are on Neocate. At this point, I believe the efforts of all informed will SAVE lives. There are already children that are sick and even if the mom knows there was something wrong with the formula, the docs won't believe it until they see enough. By then, too many children have suffered.

This is IMPORTANT for those parents experiencing issues with the new Neocate label switch, please call 
1-800-365-7354 press option 2 then press option 2 again and that will get you though to the Nutrition center.

Ask for Christine ONLY. It appears these new cans have prebiotics in them by mistake and that is why our children are having RED and RAW butts along with itching, etc.

She will ask for:
  • the Lot Number, EXP date, MFD date and the time stamp.
  • want to know the time frame in which the issues first occurred.
    • In some cases the reactions are within the first 24 hrs, others are delayed.
    • It is of utmost importance to remain calm and be supportive of how much Neocate UNFLAVORED W/O PREBIOTICS has helped your child.
  • PLEASE CALL AS SOON AS POSSIBLE
    • Again: Ask for Christine ONLY and keep record of everything you discussed.
Thanks so much. Let us HOPE that Neocate has made a mistake (far better) then for our children to suffer with no other alternatives.
  • For most children on Neocate, Neocate is our last hope.

Further dates update and information:
Parents have spoken with their local complaint department for the FDA. The refreshing side is that with a formula (infant or child) they quote "immediately respond to complaints because in training they are told that their most important job is to protect the babies from (situations like this)."

Follow the link you to a page that you may use to call ONLY if you have already exhausted Neocate and given them your information FIRST. 

The FACT that this is a medical formula means that cross-contamination and possible "trace" amounts in their can HAVE to be labeled. Christine has stated (to other parents) that they (Neocate) DO NOT treat the rice/inulin/fos as for example the way you would treat peanut allergies in a plant made is upsetting other parents. Neocate HAS to know as parents of children with SEVERE food allergies, Eosinophilic reactions, severe GI issues, or their specific medical reason for Neocate that this is NOT ACCEPTABLE!

When you contact Neocate or the FDA, PLEASE have this information on hand:
  • all of your contact information
  • the cans in question with the label
  • be ready to talk about your child's medical condition
  • be ready to talk about the timeline in detail up to the hour if you can as to how you came to this conclusion
  • be ready to talk in detail about how Neocate has responded. (so far they have been nothing but positive and respectful with everyone!)
Please for those of us with children who could be hospitalized from this mess do NOT share your lot numbers or dates/timestamp with others at this point. Eventually if there is a recall...they WILL announce it!

http://www.fda.gov/Safety/ReportaProblem/ConsumerComplaintCoordinators/default.htm

Saturday, November 17, 2012

Young Friends Arguments and using “I Feel” Statements when Talking

Tonight while the kids had friends over our youngest started to have arguments with one of her best friends. Well the first time I spoke with her friend and let her know what was going on. The second time I spoke with Ellie. We talked about words and how words make each of us feel including her friends. The third time her friend came complaining, this time I had both girls come in.

Reflecting back to a poster that was in the elementary school room for one of the teachers in CO I spoke with both girls about how their words may mean one thing to them and something else to another person.  The next thing we did was to use “I Feel” sentences with both kids.

First off, I had Ellie use her friends name and tell her how she felt when the two girls were acting like they were. Next, her friend used Ellie’s name first and let her know that she felt upset by Ellie using her name over and over. The argument was over Ellie trying to get her attention for something and her friend telling her sister something.

After both girls told each other what they disliked about what happened, I next had them both tell each other why liked being friends with each other. Within seconds instead of arguing they suddenly ran off giggling in search of whatever toy was so important to play with outside. After having both girls talk to each other using the “I Feel” statements they continued to play for another hour and a half without any further issues.

So why do these statements work so well to stop and prevent further arguments especially in children? Both children have the opportunity to discuss how they feel about what has happened. They talk about what and why they do not like the action. Using “I Feel” statements helps the children to focus on what happened not what their friend or sibling did or did not do. These work because each child involved takes turns talking and listening to each other. Because those involved are actively talking and listening the conflict is more likely to be resolved in a calm and peaceful manner.

Other communication skills that children can practice learning involve the difference between using a soft voice and style, loud voice and style, or thinking and sharing.

For example if children are arguing over crayons or markers while making and coloring pictures, the soft mannered child would not say a word. He or she would either get up and walk away leaving the project alone. The loud mannered child may throw a fit about the arguing and fighting, grab all the project supplies and either shove them aside or put everything away finished or not. The thinking and sharing child would try talking to the other kids or get an adult for help so they can finish the project.

While none of these basic conflict resolution styles is wrong or correct, each approach will produce different results and possibly different consequences. As children are learning they can be asked with different attempts to fix and resolve problems, they can be asked question to help them reflect and share.

What happened?
Do you know what style you used? Soft, Loud, or Thinking and Sharing
After you tried the ___style, what happened?
Were you able to fix or help fix the problem?

As these styles are practiced, children will better recognize what style they are using, and what style will be best in different situations. In addition, they may soon see that one style is not always the right choice to fix every conflict they will encounter.

In the situation of the girls, the soft style of simply walking away was not enough. The loud style was escalating the arguments, and the girls needed help to think and share using “I Feel” statements. One they thought, shared, listened, and found out what was really going on the “conflict” they felt was getting so bad, suddenly was defused and they were once again best friends and laughing, giggling, sharing, and playing.

Wednesday, November 14, 2012

Things we say that would leave others stumped…

This is in response to another feeding tube blog I follow and the their post about comments that we as feeding tube parents say that we either hope others do not hear, or know if they are heard wonder what they are thinking. On the Feeding Raya blog (http://agirlandhertube.blogspot.com )  she lists some of these comments. Her list made me giggle. Ok well some of the comments I laughed more than just giggled over because yes we have been there too.

Some of our comments are:
“Chantelle why are you unplugged again?”
“Chantelle, get over here NOW so we can get your pump running!”
“Mom, just dump it in my bag, that milk is icky!”
“Oh yay!! Now I am so full, stuffed like a turkey” (she says as her feeding pump bag is full and the pump is running again)

Big sister: “Ellie, turn off the alarm on your pump!”
Ellie: “No! it says I am hungry and need milk”
Big sister: “Well, just turn it off until you get milk in there please’
Ellie: “I can’t my hands are busy and my j-tube is screaming for more milk’
Big sister: “UGH, just make it shut up already”
Ellie: “Then give me more milk, I am drawing.”
(A recent argument between Ellie and her big sister as I was in the kitchen making milk trying not to laugh at them)

“Mom! Ellie is leaking again”
“Ellie’s tubes are puking all over again!”
“Mom she’s puking in her bag again”
“Mom! She exploded again!”

“Ellie do you have your IV pole tied to you again?” (She does this she can walk around without pulling it)
 “Ellie that is an IV pole NOT a skateboard”
“hey mom look my IV pole scooter is making me oh so faster than my brothers now!”

“Ellie’s Mom, her pump threw up all over the bus again and got me so gross” (her best friend said when her extension port popped open  on the bus ride home)

“Just breath and blow on my face so we can push this button into your tummy. 1-2-3, blow, all done!! Yay!! Awesome job you did it!

“oh please do not puke!”
“Will one of you bigger kids vent her tummy now so she does not puke again?”

Monday, November 12, 2012

Food Challenges...

For an interesting thought process and how our children with severe food allergies respond to "passing" or "failing" the food challenges please read this post http://theallergistmom.com/2012/09/25/the-food-challenge-challenge/ and how this mother and her child have experienced going through food challenges.

Food challenges for a child truly are not pass or fail, but whether or not child's body can handle the foods yet or not. This mind set makes a huge difference in the kids attitudes

Ellie had a weight check yesterday and she is now up to 45lbs. This is the MOST weight gain she has had in a LONG time (longer than I can remember) in a short period of time and not induced by being on prednisone.

We are very thankful not only for this but also for her increasing energy levels. On Saturday she had 2 hours of dance, came home got a birthday present ready for a friend, attended the Scout Spaghetti Dinner activity, then right after that we went to a birthday party at Chuck E Cheese for one her friends here.

Granted she was EXHAUSTED! We did not even make it out of the parking lot to the light before she was out. She was so soundly asleep that when she was taken out of the truck, put in bed and gotten ready for bed she did not wake up at all.

Sunday morning she woke up long enough for her meds, grab some breakfast, and let us know that she was not feeling well at all. (We expected this) then went back to sleep. She did not wake up until nearly 1pm.

Today she had enough energy and was so excited to go school. This is not only a new thing for her but exciting to see her be able to do. We will see how tired she is when she gets home from school tonight.

Wednesday, November 7, 2012

What has your day been like?


Today has been a crazy, exhausting, long, yet very productive day.

My day started at 5:45 when my day started. Unfortunately I was unable to get Celidah to seminary in time. However, I was able to make sure everyone else was awake, showered, fed and off to school in time.

Once the older kids were off to school I loaded the younger 3 into the truck, took them to school. Showed the school nurse how to work with the MacGyver'ed feeding tube set up for Ellie (until we have the extensions we need).

With the school nurse as comfortable as she was going to get with the setup, shown how to flush the the j-tube, give meds in the g-tube, arrange the time to drop off the forgotten meds, I headed out. I was then off to Pennsylvania to get the needed money order to finish the application process Mini Buddy needs for our Nonprofit status. After getting lost, finding a gas station, putting the address in again I was getting ready to get back on my way.

Well as I was about to get back on my way our insurance case manager called to let me know the status with our DME and helping us find a new one. (She found a new one YAY!!!)

***We have to switch DME companies because the one the insurance "approved" is actually out of network, and if they realize this we may be responsible for out of pocket expenses, copays, back copays, and other back expenses.*** Yeah... So we are switching before our insurance company realizes this...

So with a new DME found she was letting me know about that. Well at the same time I was letting her know about the frustration we were having with getting the correct extensions for the new G-J et button that Ellie has and how 3 (or 4) times now we have given the item part numbers and 3 times now we have been delivered the WRONG extensions!!!! Not to mention the fact that we still did not have what she needed. Part of the issue is the warehouse is located in New Jersey and they are backed up with orders and deliveries due to the hurricane. But still getting the wrong items several times in a row is frustrating.

Finally, I got the money order, talked to our case manager 3 more times while traveling back home. Got home with enough time to finish some needed paperwork for the bank and email it in. Gather the needed meds for the school nurse. (Find my training doll the kids put in a bag in my office *yet had NO idea where it was (sigh)**). With this gathered I got what I needed for the PTA meeting today, and headed back to the school to give the meds to the school nurse and get the PTA meeting.

On my out the door I discovered we had a delivery at the door, grabbed that and placed it in the truck. Then while heading to the school I called our cookie dough fundraising person to get some questions answered. Then as I was arriving to the PTA meeting I peeked in the box to discover I had NO idea what the extension in the box were for... the J-tube or the G-tube??? So I called and left a message for our insurance case manager and asked for help.

Well during the PTA meeting I spoke with our case manager two more times (sigh), got the number for AMT, our local rep (He is amazing) and the 1-800 number. I was given the home health nurses number to get help with the extension issue and we were given authorization for more visits to make sure we get the right supplies. (I felt bad taking up part of the PTA meeting dealing with this issue but it needing clearing up).

Left the meeting (a lot was accomplished there too), we have an AWESOME PTA board! Once I got home I started dinner, called AMT found out what extensions I got (yes something was actually right!!!), found out what else I needed. Called Pharmaquip to get the rest of what I needed. )

Talked to our new DME, (they called while I was on the phone with the other DME,  found out we needed to let Pharmaquip let the new company know they can talk to each other (sigh)...hung up with them) Talked to Pharmaquip again... Told Pharmaquip why we "have" to change... h and our case manager called again...

By the time I finally got this posted and dinner done I had spent over an hour trying to post about my crazy day. As soon as the kids are done eating we are off to the church for scouts and church activities....

So what has your day been like?

Sunday, November 4, 2012

We made it through Hurricane Sandy (the Frankenstorm) without any issues. The only thing we dealt with was a short time without power (while we all slept). We made sure to have Ellie's feeding pumps all fully charged, even her backup Joey pump before heading to bed. Then once they were charged she was not allowed to have them unplugged at all until the next morning.

So far with her GJ feeding tube, things are going great. She has already gained a full pound. This is the most weight gain she has had in over a year without prednisone. The home health nurse is coming again tomorrow to help make sure everything is still working as it is supposed to be. Last week when they came (one was being trained) they were able to help get the second pump set to the correct settings.

As far as school for the kids they missed almost a full week due to the hurricane, returned for Thursday, then they were all out on Friday and will be out Monday and Tuesday.  Ellie missed school on Thursday due to not having the needed paperwork from the doctors to allow the school nurse to do anything with her new feeding tube.

This new feeding tube has both a  j-tube or jejunal feeding tube and a g-tube or gastrostomy tube. The j-tube skips her stomach and enters that jejunum or the middle section of her small intestine between the duodenum and the ileum. This portion of the intestine is responsible for digesting nutrition. Normally the stomach begins the process of digestion, then moves the food to the intestines for complete the process and allow the nutrients to progress through the intestines into the bloodstream.

However, with Ellie, something is not happening normally. For her little body, the stomach digestion process has to be bypassed and started in the jejunum instead. this new j-tube is 45cm long and is placed into her intestines via endoscopic placement while the individual is sedated and is placed by a interventional radiologist. Another wards this is considered a surgical placement in an IR/OR (procedure room). Depending on the patient the J-tube placement times varies based on the intestinal placement.

With her J-tube she has her elemental formula (Neocate Jr) running into her body. She is now slowly gaining more energy. She also has her g-tube where we have been giving her medications and running Pedialyte when she has not been drinking as much.

She still amazes us with everything she has been through and the fact that she is always so happy and cheerful regardless. The other children too have been amazing. Not only with their sisters and brothers but everything we have been through as a family.

Monday, October 29, 2012

Home and Prepped for the Hurricane


Well we are home now. We had a short time frame this morning to get all the needed paperwork done, scripts, DME orders, and everything done so we could be discharged and head home. The hospital social worker made sure we had access to medical transport in case it is needed. They made sure we are on the shelter list in case we lose power.

With everything lined up (DME delivery lined up for Thursday if ALL goes well) we were discharged and daddy came to take us home. We loaded everything up, loaded the car up and came home. On the trip home we passed by a huge convoy of trucks and vans with FEMA, Homeland Security, Search and Rescue, and Red Cross. No clue how many were in the group but there were a LOT and they all had their emergency lights flashing.

As soon as we got home, quickly and carefully Ellie was scooped up from the truck and carried in the house as the winds are so string already. (We are having gusts just over 30mph) We also emptied everything we could from the truck and got in out of the wind and rain.

The first thing Ellie did when getting home of course was to run and hug each of her brothers and sisters, tell them about some of her "adventures" then start carving pumpkins with everyone.

Saturday, October 27, 2012

Game Plan for day Three


Goal for today: Increase the pedialyte rate by 10ml's every 2 hours (as long as she tolerates the rate increases)

if she tolerates the full rate increases to the target goal by tonight or tomorrow slowly decrease pedialyte and increase Neocate Jr formula this weekend. Then start trialing Elecare formula early next week...

Also a major J-tube disaster was averted by a simple question to the nurses. The orders for meds to not be placed in her J-tube and only in her G-tube had not been specified, and so I had been asking if we were supposed to be placing meds in her J-tube yet due to volume issues. Well because of this they had been placing the meds in the g-tube portion.

Then this morning her compounded prevacid I asked "are you sure the prevacid goes in her J-tube? Doesn't it need to be put through the G-tube to help with stomach acid? In J-tube how can it help with stomach acid?" With a puzzled look the nurse went to ask someone else and she came back letting me know I was right that it does need to be in the stomach, not the intestines.

Then when the GI dr's came this morning they made sure the nursing staff knew how to handle the G and J tubes, what can be pushed a larger and faster rate and not, what rates go where, and when and how to increase. Oh and they made sure to change the orders to NO meds in the J-tubes ONLY G-tubes!

Starting Day Three, Still Admitted


Ellie has pedialyte running at a rate of 10ml's now in her J tube and they started that over night. All her meds went into her g-tube last night.

Also this the 2nd blood draw she has had and this one went much better. She is still fighting them but but I am barely having to hold her down now. I am now able to calm her down with a gentle touch and quiet voice.

The toy she has chosen from the playroom to bring back with her is a crib toy that puts a lighted picture on the ceiling with giraffes and quietly plays some of her favorite nursery rhymes. When she found that one she was all excited and told the Child Life person she loved the songs and how they sound. Then when she was told she could bring it back to her room that made her so happy.

One of the highlights here for Ellie is she has made a friend here. A little girl just a year older than herself. Both girls love to play with each other in the playroom and create Halloween decorations together. We are hoping the Great Room (or big playroom) is open soon so the kids can play in there together.

Ellie has done amazing this admission. So many things are happening to her that before she would not have allowed or tolerated, and her sensory issues are not taking over; causing her to freak out, have panic attacks, kick scream, or try to fight the staff here for the testing.

Ellie Admitted 10/25/12

...been a while since my last update... 

Our battle of helping Ellie gain weight has continued to linger on.

John Hopkins finally got the new AMT brand G-Jet (JG feeding tube) that Ellie has been needing. We are HOPING, this will help her finally gain weight and grow better. Earlier this month she had gained 2 pounds. However that was WHILE she was on prednisone. That gain was also short lived, and she has lost all that and some again (sigh)...

We are still no closer to getting her little body to accepting more foods. She can still only tolerate apples, pears, and quinoa, but they have to be blended. If she eats apples that are not blended, those have to be spaced out so they are no more than every three or four days apart. If we try for closer together her bowels start to shut down on her. She does the same with the quinoa if it is not blended. So to get her body to accept food we blend it up into a nice apple, pear, or apple/pear/quinoa sauce for her.

Well this takes up to this week when I have been on the phone and have emailed with the staff from John Hopkins enough I have lost track. Between playing phone tag to get appointments scheduled to follow up with her pulmonologist, schedule an appointment with the new genetic doctor that is being added to her team, working with her ENT specialist that deals with laryngeal clefts and other laryngeal issues, her GI team, and several other doctors to get her scheduled in interventional radiology for her GJ placement. I literally have lost track.

Yesterday I was going about my business of getting ready to leave the house to head over to the school and help with our PTA sponsored (I am one of the Vice Presidents) Book Fair... and got a call that they wanted to see her in the clinic to start some of the testing yesterday not today. Knowing the admission was suddenly getting bumped up I rapidly started packing and doing laundry so I had the clothing I needed.

This was happening at the same the military decided our street needed to finally be paved properly. Thank goodness John Hopkins was not expecting Ellie in the clinic ASAP as I was still trapped in my drive by the street paving crew. This lasted just long enough for me to gather together a hygiene, get her stuff gathered, my stuff washing, and talk with various medical team members from John Hopkins 4 more times concerning her admission, procedures, tests, and everything. Next was to call the school and let them know that Ellie needed to be pulled out of school as she had a sudden appointment with her team, then admission directly from the clinic.
So now we sit here in John Hopkins Children's Center as she not only lost all the weight she had gained while on prednisone when she had bronchitis a few weeks ago. She is currently getting the pH-probe done, currently NPO again as we wait for her GJ placement this afternoon.

Also with this admission while she fought, they were able to place the pH-probe without to much trouble. She had her first EVER IV placed while she was awake. Again she cried, but did not fight to hard and they placed it on the first try. She has done amazing.

Sunday, September 23, 2012

Orioles -vs- Oreo’s


What happens when the Baltimore Orioles, elementary students, and family of children that do not watch a lot of sports mix? Well the kids come home all excited about wearing orange for the Orioles photo day. Then when asked about why they need to wear orange (when mom who is on the PTA board knows it is not school picture day is confused about the picture) the following conversation happens.


So why are you needing to wear orange? “Because it is Orioles day at school tomorrow.” Jade asks the boys if they even know the Orioles even are, can you even name any of the teammates.

Do you even know what sport the Orioles play for? Between the boys they start listing all the different sports… “um maybe football, no baseball, no lacrosse, wait it’s soccer (one of the boys says), or is it hockey?” As they argued back and forth.

Suddenly Ellie all excited shouted, “I know who the Orioles are! They are cookies!  You know the cookies Oreo’s!”

At this point, I was already laughing and laughed even harder. I simply said, “Clearly none of you know who the Baltimore Orioles are. None of you have to wear orange to school tomorrow. If you do you may, but you will NOT wear a basketball shirt Zach.”

Needless to say none of the kids remembered to wear orange to school the next morning.

Tuesday, September 11, 2012

Saturday, September 8, 2012

TRICARE Prime Fees Changing


TRICARE Prime Fees Changing

For most retirees enrolled in TRICARE Prime, the annual enrollment fee is rising.

BY BRIAN P. SMITH

Rising TRICARE FeesIt’s that time of year again. TRICARE Prime billing statements have gone out in the West Region. This year, enrollees will be seeing some new numbers in their statements. The individual and family annual enrollment fee rates are increasing.

 

 

Are my fees changing?

Yes, the fees are changing for most retiree TRICARE Prime enrollees. Fee-paying enrollees* were paying either (depending on the date of enrollment):
  • $230 or $260 for individual coverage or
  • $460 or $520 for a family coverage.
These enrollees will see their 2013 fiscal year enrollment rate change to $269.28 for individual or $538.56 for family beginning Oct. 1, 2012.
Going forward, a majority of the Prime enrollees could see fee increases at the beginning of each fiscal year. Two categories of retirees will have their rates “frozen.” Survivors of active duty deceased sponsors (following the 3-year Transitional Survivor period) and medically-retired service members will pay the same annual fee rate that was in effect the year they enrolled as fee-payers and were categorized as survivors or medically-retired. The freeze remains if Prime enrollment is not interrupted. Beneficiary status and category are recorded in the DEERS (Defense Enrollment Eligibility Reporting System) record.
The fees could change each fiscal year. TRICARE is reminding enrollees that you may have another enrollment fee increase later if new fees are included when Congress passes the final FY 2013 budget. If you don’t choose an automatic monthly payment option, it’s suggested you make quarterly payments. TRICARE.mil/Costs has more information.

*Do I pay fees? How much do I owe this year?

If you paid TRICARE Prime enrollment fees last year, and you’re still enrolled, you still owe fees. If you are recently enrolled in Prime as a retiree, you owe fees. You can always check your fees owed by logging into your secure account at TriWest.com.

What changes will I have to make?

As long as you make your payments by the due date on the statement, your TRICARE Prime enrollment continues. If you have signed up for automatic electronic payments through TriWest, you don’t have to change anything. Your payments will be automatically adjusted to the appropriate new amounts:
  • monthly allotment from retired pay
  • monthly electronic funds transfer from your checking or savings account
  • monthly credit/debit card payment.

What if I disenroll?

You can choose to disenroll and use your TRICARE Standard coverage. You will have an annual deductible and out-of-pocket cost shares. As a retiree, you may voluntarily disenroll at the end of the enrollment year (September 30). If you enroll again, your coverage will not be continuous and will start either the month after you enroll or the month after that (based on the 20th of the month rule).
Prime enrollment fees are changing this year. Stay on top of your enrollment and help avoid any missed payments by signing up for automatic electronic payments through TriWest.

face painting adventures

Today Ellie decided she wanted to be a black cat complete with her face painted, so she asked Jade to help her with that. Ellie also used black and pink construction paper to make herself some ears. With that I pulled her hair back so I could use a bobby pin and pin her ears down.

She excitedly went outside to play with her friends. Within a few minutes she came back in the house with one of her friends who got permission to get her face painted.

Happily Ellie and her friend went outside to play. Suddenly they came running back in the house all excited with more friends who also wanted faces painted. To this point Jade has now painted 5 little girl faces this morning, who are all bouncing off the wall with excitement.

Sadly our balloon pump has broken since the last time it was used :( so no balloon twisting today. We need to get that replaced before halloween...

Tuesday, September 4, 2012

Enter to win a Visa Gift Card


A friend of mine has a new organization called Wellness Authority. If you W.A.N.T. or need more, then the Wellness Authority Network for Today is your place to make connections.

Wellness Authority is a national network that connects holistic and financial professionals with moms.

Enter Wellness Authority Visa Gift Card Giveaway Today !
Enter to win a Visa Gift Card. Share our giveaway with your friends (just click on one of the links below)



So what the Wellness Authority does? The Wellness Authority fulfills their mission by empowering women, one resource at a time. They offer a direct, easy way to access Wellness and Financial information suited to your lifestyle.

Members connect with various companies within these industries to help them make educated purchase decisions.  Do you need help learning to eat right or help buying a home- Wellness Authority is there for you- making life easier, one resource at a time?

Wellness Authority is a national network connecting holistic and financial businesses with consumers locally and virtually.

Monday, September 3, 2012

You Know...

You know you are a parent of a special/medical needs child when...

A few days ago on a group I participate with someone started this post to get the parents talking in a more fun way about our kids. While most of these are the thoughts of other parents I have tried to reword some but also tried to keep their general thought in the main post. I am posting the main ones as there were a lot of very good ones that were posted.


  • Your friends and their children are out at a restaurant at 9pm, and your child has been sleeping for 45 minutes, has had his or her meds, nebulizer treatments, is hooked up to the feeding pump, sleep apnea machine, and/or other needed machines, and your house is quiet except the gentle humming/beeping of the medical equipment running in the background. You sit there hoping tonight there will be no alarms.
  • You can argue with your child’s doctor over the phone and have co-workers (or friends) ask if the doctor needs you to translate their own “doctor-speak” for them at the next appointment. Then you find you need to explain your child’s condition or diagnosis and to a new medical student what the “doctor-speak” language really means.
  • You realize your freak-out mode is set to high, when your friends go ballistic over a broken arm, yet your thought process is: an arm is just an arm and I can handle a cast or no arm if needed. Besides broken bones heal really fast. However, dropping O2 sats, respiratory rates to high or too low, heart rates to high or too low, seizures, intensity or duration… these can all be true emergencies.
  • Your luggage lets lost on your way home (along with others) and you calmly notice the ONE bag that came in is the medical supply bag (huge sigh of relief). Everyone else is frantic; you however know that eventually the rest will catch up with you.
  • When your normal is complex in the doctors eyes, or when the pediatrician comments that your reality of parent –vs- doctor skills are blurred and you are far too comfortable at home. When you as the parent are too comfortable caring for your child, when others would have freaked and taken their child to the ER or had them admitted days ago.
  • When your purse/bag contains a mini first aid kit to include: extra g-tube supplies, tape, KY-jelly, a thermometer, saline bullets, extra Zofran, extra tape, duoderm, tagaderm, syringes, extensions, etc... and the questions and looks  that follow… and your car first aid kit rivals that of any EMT first aid kit.
  • Your child understands eating as feeds or boluses, AFOs as shoes, and feeding pumps and other medical devices are given human names and qualities, and feeding tube back packs and g-tubes all have nick-names. Your child has multiple medical device back packs to match his or her favorite outfits, holiday seasons, or sports teams.
  • The ER and clinic staff recognizes you and comment about giving you your own parking space or  when you know the clinic or hospital staff well enough to know what they do in their free time outside of work.
  • Your children know normal glucose levels. How to change feeding tube buttons, mix formula and set the feeding pump, or help trouble shoot error messages on a pump, and hook up and secure extensions.
  • You know and can run NICU/PICU/ICU equipment in your child’s room and the NICU/PICU/ICU staff is comfortable letting you run the equipment. You are in the ER with your child and can recognize and know how to use or work nearly everything in the trauma room or you hear equipment alarming in another room and the urge to check because the medical staff is not checking fast enough.
  • You have been encouraged to go to medical school, because you clearly know as much if not more than most of the residents under your child’s supervising doctor’s care. The notebook you carry is more comprehensive than most medical books any medical student, resident, or doctor could turn to for answers on your child’s condition or diagnosis. You can rattle off your child’s medical diagnosis, medication, strength, and dose list without looking.
  • You have closets or cupboards filled with medications, formulas, supplies, machines, spare parts, not coats, linens, sports equipment, or cleaning supplies.
  • Your child knows the hospital layout and can direct others to where they need to go, or you find yourself giving directions better than the hospital staff because you know the shortcuts.
  • Your “normal” child thinks something is wrong with all of her baby dolls because they are missing feeding tubes, nasal cannulas, other medical devices, and insists the dolls be fixed and helps to “doctor” and make them right.
  • Your family uses syringes as water guns, for splatter painting, to tie die shirts, and other craft projects. Your family uses q-tips, gloves, gauze, and other extra supplies for a variety of craft projects.

Tuesday, August 28, 2012

Spouse Buzz Article- What Not to Say to a Wounded Warrier


I came across an article on the Spouse Buzz which made me think about a very dear friend, her husband, their family, and all they have gone through in past few years. The article “What Not to Say to a Wounded Warrior” has some comments I am sure most have heard other comments many would rather hear.

For example, “At least he/she got to come home early” can be shocking. Instead something like “I am glad you get to see him/her. I am sorry he/she was hurt.” Family members would rather have the soldier stay gone until the deployment was over instead of make sudden last minute plans to fly and see their loved one laying in a hospital bed. Soldiers never want to leave other soldiers behind even if they are the one being transported out. Instead, the unit would rather stand together at the homecoming ceremony.

He/she looks okay now.” What one looks like on the outside may not reflect what is really going on. Instead, let the family members know “I hope he/she is doing better now.” Some may be “lucky” enough to have kept the limbs after trauma or major injury, yet they suffer from the lingering pain, effects of multiple surgeries, and other losses involved. Some may never run, while had they lost the limb and received an artificial limb, additional freedoms maybe felt.

Life for these families is full of ups and downs as they learn to adjust to a new way of life. However, in the process new friends are made, bonds between old friends are made tighter, and these families learn about hope, perseverance, and what love can do.

Thursday, August 16, 2012

Mitochondrial disorders


After looking up more information on Mitochondrial disorders, I think I have a slightly better understanding what they are and why this is suspected with our youngest. The information is pulled from the United Mitochondrial Disease Foundation page designed for teachers.

Mitochondrial disorders are notorious for not following a set pattern. It is not uncommon for patients to be misdiagnosed with another disorder. Symptoms can begin at any age. Depending on which cells are affected, symptoms may include: loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays, autism, and susceptibility to infection.

When looking at the main issues we have dealt with Ellie over nearly 7-yrs now she has had the following symptoms: right-sided muscle weakness, gastro-intestinal disorders and swallowing difficulties, poor growth, respiratory complications, and susceptibility to infection.

Knowing they are suspecting a mito and possibly metabolic issue with her does make sense when looking at her long list of combined medical diagnoses. Her known and confirmed major medical diagnoses are: bronchial malacia, laryngeal cleft, GERD, FTT, severe protein allergies  causing autonomic shutdown, sensory integration dysfunction, chronic lung disease, asthma, aspiration issues, 100% g-tube fed (placed at 5 months), GI and bowel motility issues and bowel ileus.

When looking at these issues with the Mito symptoms, which go with which?

Gastro-Intestinal Disorders and Swallowing Difficulties: bronchial malacia, laryngeal cleft, Gastroesophageal Reflux Disease or GERD, severe protein allergies  causing autonomic shutdown, chronic aspiration, 100% g-tube fed (placed at 5 months), GI and bowel motility issues and bowel ileus

Muscle Weakness: well her low tone in her upper and lower right side of her body

Poor Growth: Failure to Thrive or FTT,

Respiratory Complications: chronic lung disease, asthma,

Susceptibility to Infection: She is susceptible to nearly bug, cough, cold she is exposed to

Clearly if the Mitochondrial disorder comes back positive, this would explain most of her symptoms since birth, especially all the feeding and growing issues we have had with her. Breaking down her symptom list like this, clearly her primary affected areas are the gastro-intestinal and swallowing disorders. She has struggled since birth with these issues.

Wednesday, August 15, 2012

Long Exhausting Appointment Marathon Day


Today has been a very long, exhausting, painful, but overall good day. To start with, I had a feeling I needed to show up to my neurology appointment early. Well my appointment was scheduled at 9:15 and we arrive at 8:30. This turned out 6o be a good thing for me because the 1st appointment was a no show. This allowed me to be seen earlier. The dr is glad that the added meds for my migraines are helping, and upped the dose one more time to see if it helps more with my migraines and some of my other pain issues.

As soon as the appointment was over I checked out and prepared to leave, and suddenly the entire hospital lost power. So glad we arrived early, because the power outage happened as I would have been checking in for my appointment if I had been on time.

Next, we left that hospital to head to the next hospital for my joint injections in my hips. This time in my main hip joints not the SI joints. On our way to this appointment we dropped by the post office to drop a Mini Buddy Bunny in the mail. Dropped by a nursing home to visit the mother of the couple driving Ellie and to our appointments today, this brought a huge smile to her. Then we went to the injection appointment. This injection was very painful. I am so hoping this series helps…

As soon as this was finished we loaded up once more and were on our way to John Hopkins for Ellie’s follow up appointment after her surgery. We talked with Dr S about the lacking weight gain since surgery, she was 40.9 lbs today... Talked about Ellie and how she is struggling to tolerate food varieties, is tolerating pudding thick purred apples and pears and some foods off and on. Today she was venting undigested and curdled formula again.

We discussed her starting to introduce more textures to her and slowly working her down from honey thick to nectar thick purees and introducing honey thick liquids, then working down to nectar tick over the next month. We also talked about mito and metabolic testing with a genetic specialist. While this is never a series of tests or a diagnosis a parent ever wants a child to have, this sometimes a necessary one. If this comes back positive, this will move her from idiopathic to a known route of treatment. Yes this will add more specialists to her comprehensive team, but this team will help us understand better why her body does what it does and what to do for specific treatments she needs or will need in the future.

John Hopkins Children’s Center is also excited to have our Mini Buddy toys in their facility. They are also excited that we are now working with our local AMT rep to help expand our program.

Monday, August 13, 2012

Message from Tricare!!!

On August 17, 2012 TOL will simplify access and authentication. As part of this upgrade, the unique TOL username and 15 digit password logon will be retired. If you use the 15 digit password issued by the MHS identity authentication service (iAS) to access TOL, please register for a DS Logon account today!

Oh this is the BEST message ever for me. I HATED that 15 digit military required password! that was a nightmare for me not only to figure out a password that would work, but one I could remember, one I had not used within the last so many times, and one that fit all the requirements of the CAT card holders.

I can finally go back to my normal "secure" everywhere else passwords!!! YAY!!!

Saturday, August 11, 2012

Back To School

Once again, it is about time for the kids to be heading back to school. Heather Sweeney in her post on http://spousebuzz.com/blog/2012/08/back-to-school-tips-for-military-families.html?ESRC=family.nl has some wonderful tips for preparing for the kids heading back to school. Some of the most important things to keep in mind as our military kids head back to school.

Keep Important Documents In One Place:
As military we move or transfer schools often. If we have one central location for all orders, power of attorney (if needed) birth certificates, social security cards, current copy of each individuals immunizations, physical report, most recent report card, and or school/college transcript. Make sure to keep these documents separated so these are not packed if PCS’ing.

Emergency Contacts:
Schools and the base CDC or Youth Programs all require emergency contacts for your children. If you are new, make sure to find someone to fill in the emergency contact. This can be a new neighbor or someone from church. Simply knock on your neighbors door, ask if you can exchange contact information for your children for emergency contact info for the school, CDC, and/or Youth Program. (This can be changed later if needed)

Start New Routines:
Once settled in, and at least a couple weeks before school starts, begin the new, or return to the normal bedtime routine. For children in a new time zone, their bodies need to adjust. If you move during the summer, visit the school and take a tour before school starts. Attend the Back to School/Open House Night before school begins. Finally, if your child rides the bus, let him or her ride the bus starting on day one. If your child walks to school and you walk with your child to his or her classroom, say good-bye and the door and leave. Do not linger. The teachers are prepared for all moods of kids on their first day back. Not lingering inside the classroom, sets an atmosphere of trust between you and your child.

Special Circumstances:
Does your child have special circumstances the school needs to know about? Letting the school in advance is important. If you are moving after the school year has already started this may delay your child from starting school however, behavioral or medical needs are very important for the school to know about and address.

Other important circumstances the school needs to know about is if a parent is deployed, when homecomings are scheduled, recent or upcoming divorces, (longer area families) upcoming PCS moves, behavioral  changes in the child due to normal military life stressors. Keep a proactive approach with the school/s and open communication.

For families in the area, with medical needs, behavioral, or disabled children, the summer time is the perfect time to prepare with the school nurse, or nurse of the next school. This is the perfect time to make sure adaptive PE forms are filled out if needed, additional medication forms, medical device usage forms. Does the school nurse need to be trained on any medical devices, equipment, implanted medical devices your child uses? Does individualized training for your child’s equipment and/or devices need to be updated or reviewed? Has anything changed for the current school nurse concerning your child?

As parents of medical needs, behavioral, or disabled children we are our children’s best advocates, especially when we take a proactive approach instead of a reactive approach.

Military Life
Unless we let others know what military life is like, our kids attend a school with strong military presence, most teachers, or school staff members will not understand the customs and traditions within the military families. For most looking inside the military family and trying to understand, it is like trying to understand what a child with cancer is experiencing. Until information about the specific kind of cancer, treatment, and prognosis is given, everything is unknown.

Through books, articles, blog posts, and videos, others can use these resources to gain insight into the military life. Two great resources include:

Military Kids Connect

Friday, August 3, 2012

To long since last update...


It has been a very long time since I have updated the carepages or the blog. I have mostly been updating in Facebook lately since I have been working with the Mini Buddy project.

Well in the last couple months Ellie had her Laryngeal Cleft fixed and has not gained any weight so we have had to have regular weight checks with our local peds office to follow her weight and growth. Her vomiting and digestion issues have not resolved despite the increased and changing meds. So here we go again with a new game plan for her. The newest game plan is the following:

Yesterday was a very long day. I met with the local peds team this morning to get the weight data for Ellie to take with me to the GI apt this afternoon. Then on the way to Baltimore I discovered I had forgotten the file with all her weights since April. Thanks to Celidah I was able to write down the dates, weights, and heights to give to the GI dr.

We compared her heights, weights, and the dates locally as compared with the John Hopkins weights. Both weights were consistent and showed she has grown normally yet has shown no weight increase at all since April. This shows no weight gain at all in 4 months and for the last 6 months a decrease.

The plan:

John Hopkins normally does not carry AMT G-Jets, yet they are special ordering her an AMT g-jet because we have far fewer staff, strep, and MRSA infections around her stoma site. She has grown taller yet skinnier so they are ordering her both a 1.7 and 1.5 G-Jet because the 1.7 is now to big for her.

Once the G-Jet has arrived she will be admitted. Her day will start in clinic with pH probe to see just how bad her reflux is. She will also have labs drawn and done at this point so she only needs to be stuck once (labs and iv placed at the same time) Then once a room is ready for her we will "officially" be admitted. After the pH probe is removed they will place the g-jet and then start with Pedialyte.

Once we know that Pedialyte is being tolerated through the new feeding tube we will be trialing a new elemental formula. Her GI dr wants to trial the new formula in the hospital due to her severe allergies in case she has a severe reaction where they can counter any reaction.

Finally, once we know she is tolerating the new formula they will slowly increase the rate until she is up the new and needed rate for the needed rate of flow and calories per hour to maintain growth and put on weight.

How long will she be admitted for at this point is unknown because it depends on how she reacts to the new feeding tube, the new formula, the results of the labs, the pH probe, and any additional tests deemed necessary while admitted.

So what is this new feeding tube she is getting and what does it do or look like?
http://www.amtinnovation.com/pdf/AMT_G-JET.pdf this gives really good information about the new feeding tube.

Monday, June 25, 2012

Who's Job is More Important?

So tonight at our Post Theater Club rehearsal I had the opportunity to talk about our Mini Buddy project we have going on. This discussion came about for a couple reasons. 1) a couple of us were talking about our jobs, 2) I was working on Mini Buddy's on Saturday during our rehearsal at the theater.

When I mentioned I am a stay at home with a home-based business with my cousin and a couple friends in ID and WI. Well this got them really curious. They were most curious HOW we can work as a team on a home-based business and live in different states. So I told them about Mini Buddy. One person especially Mina, (stage name) as we are all calling her right now wanted to know as much as I could tell her and wanted to know how and why we do this.

Well she totally LOVES this and said she would check out our FB page and afterwards walked away to take her rehearsal spot saying "dang and I only in the HG headquarters office." At this I laughed because I know without her job on base so many things would NOT run smoothly on base either. Funny how she saw our organization and jobs as way more important than her job is.

While our job may be more fun and seem more fulfilling, it made me realize how important even the smallest job can be in this organization. Hopefully our volunteers do not see their jobs as less important just because something they do, or a role they play seems or feels smaller than another persons role.

Every role, every volunteer position we have is important, because these jobs, tasks, do keep Mini Buddy moving smoothly, allowing the needs of each individual family to be met. So while we have thanked our volunteers, as leaders we can never truly thank you all for your efforts enough. Again THANK YOU for all you do!

Friday, June 8, 2012

Summer Travel Made Easier

When traveling or moving to a new duty station while in the military, no matter where you go TRICARE continues to be your medical insurance whether you are in the North, South, or West region. Brian Smith gives us five small yet very important steps to follow while traveling to avoid unexpected issues while traveling or moving.

BY BRIAN P. SMITH


When you’re leaving on vacation or changing duty stations, TRICARE is your medical coverage. These five small steps can help you avoid unexpected issues during your travels—even if you change TRICARE regions.

1) Keep DEERS Updated
No matter which TRICARE program you use, your Defense Enrollment Eligibility Reporting System (DEERS) record is the key to your military health care eligibility. If your address changes for more than 60 days, you can log into milConnect to update DEERS.

When moving to a new location, don’t disenroll from TRICARE Prime before you move. You can transfer your enrollment if TRICARE Prime is available at your new location. You will have to choose a new primary care manager (PCM). No matter if you’re moving across town or across the county, you can find instructions for transferring your enrollment at TRICARE.mil/moving.

2) Get Routine Care at Home
Before you hit the road, take care of your family’s routine health care, like annual exams or required immunizations. Getting routine care at your new location before your enrollment is transferred can lead to claims issues and out-of-pocket expenses.

3) Know Your Urgent and Emergency Care Options
But what about those unexpected issues?
  • Emergency care is covered for conditions that could result in a loss of life, limb or sight.
  • Urgent care covers those issues that require medical attention in 24 hours, such as a rising fever or something like a sprain.
  • Remember to follow the TRICARE Prime rules for urgent and emergency care. You can read more atTriWest.com/UrgentCare.
4) TRICARE Pharmacy Delivers
For medications you need on the road, remember to order your refills before you leave. If you move, TRICARE Home Delivery moves with you, too (and can even deliver to a temporary address). You can manage your TRICARE Home Delivery account at Express Scripts.

5) Access Your Important Information on the Move
If you’re going to travel within the TRICARE West Region, make sure you stay connected to your health care while you’re on the go. Visit TriWest.com/Mobile to learn how you can:
  • Find a TRICARE network provider or urgent care center near you from your phone
  • Download the TriWest mobile app and have TRICARE info at your fingertips
  • Log into your secure account
  • New to the West Region? Register for an account today!
Long trips and short ones, roundtrip or one-way, TRICARE has you covered during your travels. For questions before, during or after a vacation or a move, find your answers at TriWest.com.