Rachel's Failure to Thrive

The most pressing issue that has been on my mind this morning is Rachel's "failure to thrive".  I can usually get 3+ bottles of goats milk with a packet of carnation instant breakfast--to help with her calorie intake(we switched to goats milk because we suspect that pasteurized cow's milk was causing her to be congested all of the time) and whatever little bits of food that we can convince her to eat.  Her lack of desire for food is very strange.

I have taken her to a local doctor and her pediatrician in Pocatello just to see if there is something I am missing as to why she refuses to eat--ear infection, blocked throat, infected throat????  We are all at a loss as to why this is happening.

The older she gets I am even more convinced we are seeing ataxia-telangiectasia (A-T) symptoms just like her brother and twin sister.  She is not growing right, she continues to be wobbly in her gait, and she tires very easily.  Her preliminary alphafeta-protein (afp) blood test (afp levels in A-T children are higher than normal) has come back high, which is not looking good in her favor, but it does not mean as much until she is over two.  She has not had the confirmatory A-T testing done yet.  At this point I would be very surprised if she doesn't have A-T, but boy would I be thrilled!!!

One thing that I would like to get more information about is exactly what a feeding tube is and how it works.  How much does it cost?  What does it entail?  Can the whole in their stomach close back up if it is no longer needed?  Can we put any liquid foods in it or does it have to be pre-packaged ones?  I would love to put healthy meals together in my Vita-Mix and get them into her body.  Would a feeding tube give me the opportunity to get vitamins and pills down her that she refuses to take?  I really need to be getting protandim down her consistently because I know that it will help alleviate her A-T symptoms.  I have watched what protandim has done for my A-T twins and I will do anything I have to do to get it down her because she needs the help.  Currently we are giving her half in a bottle in the morning and half in a bottle at night.  I am not sure that she is always getting it, however, because some of it ends up in the nipple or stuck in the bottom of the bottle and sometimes she just flat out refuses to drink her bottle.

I, like most people, have always been somewhat leary of the idea of a feeding tube, but if it is what will work I think it is worth looking into.  When Rebekah was born she was in the hospital for an extra 9 days because she refused to eat.  They had a tube going down into her stomach to get food down her and it worked.  Eventually we were able to get her to eat and she stayed healthy through the process.  The main difference that I see between the tube down her throat and the tube in her tummy is the surgery part of it, but they both accomplish the same purpose.  We are committed to doing whatever it takes to help our children be and stay healthy.

I think this is an issue that deserves a lot more thought, research, and prayer.  The one person that I need to visit with is my Aunt Tina because she had a son that came home from the hospital on a feeding tube.  She will be one that I will be able to gain some valuable insight from.