Yes that is PAYING, not praying. Although we do pray for fat around here too (me to lose it, Kendall to find it, etc.)
I am SO SORRY I didn’t update on Friday as I intended to. Ben and I were literally SO giddy that we didn’t have to check in inpatient to the hospital with Kendall that I think we just spent the entire afternoon laughing at nothing and everything!
The update: Kendall was losing weight due to something that I can’t believe has an actual name: Dumping Syndrome. You can click on my handy link there for a more medical explanation, but essentially, her system couldn’t handle the extra calories we were trying to give her, so instead of processing a little of it, it decided to just forgo processing ANY of it, and was, essentially, dumping all of her food directly into her intestines without processing/digesting it. Neat. Cause, you know, this kid can totally be ok without processing food! I mean come on! Talk about insult to injury! Dr. Natalie took one look at the stool sample we brought, checked her weight again (it was down a few ounces), and immediately starting re-calculating her caloric intake/rate/flow. Ok seriously. When I repeated 8th grade math for the THIRD TIME in tenth grade I swore I would just get a job in which math was in no way involved when I grew up. And for the most part I have been able to hold true to that (if you don’t count the fact that I had to create multi-million dollar budgets using government funds for my previous life as a consultant…besides that) – and now this? I have to know kcal’s per ounce per hour? what the heck is a kcal even?
Anyways – we think we have it pinpointed. So we take her calories back down to regular formula mixing, and now we get to go BUY a BOTTLE of FAT at the pharmacy and add that to her formula. Honestly. I have to battle insurance to get them to pay for my daughter’s fat. Add that to my list of “things I never thought I’d have to do as a mom”. Of course we have to finish her little trial of regular formula first (and by regular I mean, its still her uber expensive stuff, just not doubled up in the amount I have to mix with water) – to make sure her system can “re-adjust” to processing food without stressing her out. It really makes you aware of just HOW AMAZING your body is, that God made all this stuff just WORK in your system, without you having to think about it. And yet we HAVE to think about it with Kendall. I have truly never cheered over a diaper like I did after her first poopy diaper on the new formula plan. It was almost NORMAL looking!!! I know that’s crazy – but it was just such a confirmation that it seemed to be WORKING – and so quickly too! And I firmly believe that is due to all the prayer this little girl has lifted up on her behalf every day.
So tomorrow we go in to the lab at o’dark thirty to have blood drawn to send to University of Chicago neurogenetics program where they will run a “microarray” test to see if there are any variants, defects, deletions or mutations on Kendall’s chromosomes that make up her DNA. To see if some miniscule mistake was made when her ATCG was being multiplied before I even had a clue she was growing that got repeated and duplicated on every single cell of her body. To see if these mutations are the cause of her weakness, her digestive issues, her unique challenges. This process will take 3-4 weeks and may or may not hold any answers for us. If nothing else, it will add Kendall’s info to a database where maybe someday, they WILL start to have answers, and help, for kids like her. Dr. Natalie feels pretty strongly about doing the test, so much so that she called the head dr. at this program specifically to present Kendall’s case to her last week. Again, I continue to be amazed at the tenacity with which Dr. Natalie is fighting for Kendall.
And lastly, we discussed on Friday the fact that this latest little setback just bumps up the need for Kendall to get the G-tube surgery, vs. remaining on the NG for some indeterminate amount of time. Dr. Natalie was going to call Dr. Aljadeff to discuss her concerns and get “his blessing” of sorts on going forward with the surgery if it should become a necessity while Dr. Aljadeff is going out of the country. We meet with Dr. Aljadeff tomorrow for a regularly scheduled appointment, so hopefully he has processed her info and has a game plan for us. I can tell the tube is really starting to bug her more as she is almost constantly sneezing now when she’s awake and just sounds more congested. I feel so torn in that I want her to be free of that tube, and yet I am not excited about another procedure for her, one which would more than likely involve an inpatient stay and another adjustment to eating… Ugh. some days I am just DONE with this whole little experiment and want to just go back to life like it was. But we can’t and you can’t cry over spilled milk so you just pick up and move on and keep plowing forward, taking each new challenge as it comes.
So that’s our update for now. She IS recovering from her “dumping syndrome”. She is sleeping ok at night. She is growing in her own miniscule way. She is learning new things little by little. – she’s just on her own timeline. So we’ll try to adjust our crazy lives to her timeline and enjoy each second for what it brings.
Thanks so much for your prayers. They continue to lift us up on the days and in the times when we need it the most.
I wish upon you all a large serving of sunshine and warmth today. it is OFFICIALLY spring now, right? so I hope you get to enjoy a little taste of it today, no matter where you are.