More answers.... more questions....

Nothing about Nate's situation seems to be easy. We finally met with the GI clinic yesterday and while we got some questions answered, we left with even more questions. He is in the 1% for his weight/height and age. Gee, really? This is no shock to me. He is finally the size that Garrett was when he was born! (To be fair, Garrett was HUGE when he was born, but that is for a newborn, not a 3 month old.) But we met with the nutritionist who was able to help us get the right amount of food for him and she taught me how to re-evaluate after each weight check to make sure he is getting enough. It is so frustrating. I have asked and asked and only once did his doctor up the amount. So, while he is only in the 1%, I am going to make sure he keeps growing and gets to where he needs to be! We also will have to watch his medicine amounts since those have to be adjusted as he grows! I felt like we at least made progress there. The thing that bothers me is when I was talking about his FEES test they asked what that was!!! WHAT???!!! This is an absolute necessary test to determine when/if he can have the tube removed and they don't know! She said that they get a little narrow sighted in specialized fields. That seems a little too narrow sighted if you ask me. Shouldn't you work with ALL areas in order to best care for a child? What do I know, I'm just a mom! It's hard to find doctors that seem to actually care about the individual. Our family practice doctors in Utah always cared about EVERYTHING but they are overworked and probably feel underpaid (though Dr S joked that he got to add an extra wing onto his house just from our family's business!!!).

Now... on to the questions. Nate was given a test to determine if he had CF. It came back negative. However they also sent a blood sample in for DNA testing. The results came back that he is likely a carrier. But nobody has been able to tell us if that has anything to do with his problems or if it just so happened that since they tested for everything it showed up that he is a carrier but the problem still comes from his reflux/dysphasia. We now get to go for genetic testing. The doctor first made the comment about how his future siblings would likely have problems. HUH???? ;-o We said he has 14 siblings and none of them have problems!!! After she went through the whole shock and awe thing she said there wa no way this could be genetic if NONE of the others had the problem. She gave us copies of the reports which we will follow up on since if he does happen to have it he will need to treat it also but SHEESH! This is really a pain. Why can't we just get in and get the answers we need without being told it's all a waiting game??? The doctor's report said:

"Laboratory results sent to me as a CF Medical Director. Patient is at the very least a carrier for CF. Patient could be affected. Mother should have testing done at AMBRY to evaluate for presence of the two known mutations as well as the novel variation. If all three are not detected in the mother, the child may be an affected individual. If the mother carries all three, this does not preclude the possibility that the family could have other affected children if the father is a carrier. Genetic counselling is recommended for the family and children. This information was shared with the attending of record... Dr was also told to contact our office if family felt they needed further evaluation and treatment."

Since nobody seems to know what any of that means, and since none of the other kids have any signs of problems, they are basically dumbfounded and want to test everyone (at great cost I might add!). Funny, my dad is being seen by a tourette's specialist who said she would give anything to be able to study my family since I have several kids that have different tendancies towards tourette's though not a severe case of it at all. So, I think if they are all so blasted desperate to do a case study on my family... then they can get some kind of funding and do it themselves!!! ;)

So basically we have answers to the very basic questions of what should we do in order to help him gain and thrive. But we have more questions than answers when it comes to what is really causing this, is there more problems than we can see and what should we do about it all!!! ARGH! How did we dodge the bullet 14 other times and then get one that tests us in more ways that I dare count. Yet... I would do it all over in a heartbeat! He is the most incredibly beautiful baby with the sweetest spirit. He is a gift to our family in too many ways to count. His name means Gift from God and he shows us in everyway possible that he is truly a gift and we wouldn't trade a moment of it! For whatever reason he was sent to us, it was to teach us and help us grow and stretch beyond what we thought we could. I realize that in the beginning I thought I could never do some of the things that I am now doing without even thinking about it. I know that each life that touches ours is for a reason and I am grateful that he gets to be part of our lives! He is so loved, so cherished and so protected. He has brought more to this family than I ever believed possible. So while he has brought us challeges, he brought us growth and the ability to love and serve beyond ourselves. What an amazing and special little man!!!