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.

"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.

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.

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. 

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

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.

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?”