Search This Blog

Pookie Background

Tuesday, February 12, 2013


Trisomy 18 is a scary thing. Statistics sadly state that 90+% of the babies die before birth. That doesn't even include all of the babies that are aborted, which is probably already >90% of those that know about the trisomy 18 before birth.

There is a Hebrew word, Chai (חי). The numerological value to Hebrew letters, the letters Het (ח) and Yud (י) add up to the number 18. The Hebrew word and symbol Chai (חי) mean "life". So 18 = LIFE.

Trisomy 18...
TRI-SO-MY 18...


God bless all the parents who have given their trisomy 18 child's life meaning. It doesn't need to be counted in minutes, hours, days, or years. Each one is uniquely designed by God for a specific purpose.

Thank you to my new trisomy 18 friend, Tanya Meyer-Herrera, for sharing such a beautiful thought with me today. ♥ Please pray for her unborn trisomy 18 baby girl.

Please Vote For The Lift Assist Amazing Research Project!

Please go here ==> <== and VOTE repeatedly from now until March 1st! This vote is a popularity contest, but I guarantee if this were based on utility and possibilities, our team would win! We need lots of votes! Explanation below...
Our son is on a First Lego League (FLL) Robotics team for Langston Charter Middle School. This is LCMS's first year in the competition, and Elijah's team got 2nd place in our regional competition! They go on to state competition on 2/23. 
The FLL competition "Challenge" is based on three equally-weighed parts:
1) the Robot Game
2) the Project
3) the FLL Core Values 
This year's project is based on the 2012 theme "Senior Solutions" - the goal is to improve the quality of life for seniors by helping them continue to be independent, engaged, and connected in their communities.
Below is a description of the Gear Turner's project. 
The Gear Turners have listened to several members of the senior citizen community and decided that physical mobility becomes difficult as people age. To answer this issue, we have constructed the LiftAssist. The LiftAssist is a device that helps elderly people get in and out of chairs. One of the most important advantages in the LiftAssist is that it is portable and lightweight. Consisting of two durable air bladders, the device inflates to comfortably support the person and lower them into the chair by deflating. When the person wants to get out of the chair, they reflate the air bladders to a semi-standing position. Then the senior citizen can comfortably move from the chair to a standing position.

We can't show pictures or give more details because the competition isn't over. But the Lift Assist product that was designed for the year's theme of 'Senior Solutions', and it has applications that far exceed that population! It could be used for anyone who needs help getting out of a chair (after surgery, with a disability, weak muscles, etc). It is extremely portable and easy to use. I could also see it being used for disabled children like our trisomy 18 daughter, Rebekah. The team has submitted it for a temporary patent. If they go further in the competition, we'll probably try for the full patent (but it is lots of $$)! This project far exceeds many of those on the leaderboard and we are woefully behind. But we know this is an amazing product!

Go and VOTE:

Have You Hugged a Tubie Today?

It's feeding tube awareness week! Have you hugged a tubie today? I have!
There are many reasons why people have feeding tubes - accidents, illnesses, swallowing disorders, esophagus disorders, muscle tone issues, etc. But, just like a genetic disorder, having a feeding tube does not define who a person is.
Here is Rebekah's feeding tube story:
Rebekah is completely fed by feeding tube. This wasn't always the case. She actually came home from the hospital at 7 days old drinking from a bottle. Although it took a lot of energy and time to feed her those bottles, she gained weight and grew. 

At 6 weeks she got her trach and we got a g-tube at the same time because it was very likely that she would be unable to coordinate her suck/swallow with an open airway, as traches increase the risk for aspiration. She barely passed her swallow study, but we could keep feeding her orally! The only problem was that it took her twice as long to drink a bottle now because of the open airway (no pressure to help you swallow vs having the food/drink go down you windpipe) so feeding became a bigger challenge and was taking too many of her calories. So we supplemented with the g-tube since she had one.

Unfortunately, we went through a rough 3 months as Rebekah apparently had issues with her Mic-Key Balloon button g-tube. She kept popping the balloon due to great pressure in her abdomen and, because the g-tube stoma wasn't yet mature, we had to go to the hospital to get her g-tube changed in those 3 months. She must have popped at least 8 balloons and, the strange thing was, they looked blackened. In fact, someone at the hospital actually turned us into DSS for child abuse for "slicing and burning" her g-tube in "Munchausen by Proxy" fashion to get attention, I guess? Here we are with a child that wasn't supposed to survive, and we kept begging for answers to the g-tube dilemma, and we were being investigated for "child abuse". This happens OFTEN to families with disabled children. I am glad to say that the case was dropped fairly quickly as there was no founded evidence to support the claim and we had a list of doctors that wrote letters to attest to the great care Rebekah was receiving.

I kept pressing the doctors to change her g-tube and found some information saying that this happens in some patients, they cannot tolerate the balloon g-tubes. I also figured out that the dark look on the tubes was due to her Prevacid. Apparently her stomach acid reacts kind of funny with it and it turns really dark in her stomach and does not seem to digest.  But we were ignored. Luckily another pediatric surgeon listened to us and immediately changed us to an AMT non-balloon button g-tube. Although it is more traumatic getting it in and out, and we must do it at the surgeon's office, there was IMMEDIATE relief in Rebekah with the change. She used to keep her head turned to the right all the time and we thought it was 
torticollis. Turns out she was turning away from the pain she was experiencing which seems to be pretty typical in infants. The profile is lower than the Mic-Key and the material is more flexible. So this is better for being on the stomach too!  We also changed from Prevacid to Nexium and, guess what? No more black gunk in her stomach or on the feeding tube!

At 4 months of age, Rebekah was hospitalized for 2 weeks in the PICU with some major upper respiratory issues. We were not allowed to feed her by mouth and I didn't even think about giving her a passy to suck since she was pretty out of it. Well, 4 months is about when the infant suck REFLEX turns into a LEARNED BEHAVIOR. And guess what, we missed the boat. She forgot how to suck!! She started gagging on everything and would aspirate.

We tried many times since then to get her back to some oral feeds but our attempts were not successful. However, I am happy to say that Rebekah, at 45 months old, started sucking her thumb again all by herself! So there is still hope! But we will not push her because the feeding tube has allowed us to focus on other things and not worry about the hours of feeding time it would take per day. We are grateful for her feeding tube!

As a side note, a local friend's child was faced with failure to thrive/grow at one point and they considered getting her a feeding tube. One of their pediatricians actually compared the child to Terri Schiavo (the comatose patient whose family/husband battled over the decision to pull her feeding tube). I am sorry, but a person with a feeding tube is not the same as a person who is in a comatose state, unable to communicate with anyone. Not that I would want to make that decision either, but it is ignorance that leads to statements like that, and parents are then afraid to do something that will HELP their child. I am happy to say that my friend's child managed to thrive without the aid of a feeding tube, but we are very happy with our decision too and it doesn't make our daughter any less deserving of care or consideration. It doesn't make her less of a person!

Feeding Tube Supports: