As I scanned my last entry, Peter peered over my shoulder, “Is that the most recent?”
“Oh. She’s a lot better than that.”
I’ve left you in the dark for too long!!
She IS a lot better – Praise the Lord!!!
It has been a very long, slow process, but I am happy to announce she is doing wonderful! I told Peter recently, “Her G-tube site (feeding tube site) looks great, good thing we didn’t know how bad it was!”
We have been gradually increasing the amount of milk she can have at one time since we came home from the hospital. Her first goal was to receive half of her caloric needs in bolus feeds (this just means milk is dropped into a syringe which empties into her tummy via gravity). This is more like a “real” meal. I am beyond ecstatic to announce she met this goal a few weeks ago, and is steadily progressing! Although she is still receiving her continuous feeds through the night (milk pushed slowly through her feeding tube via a pump), during the daytime she receives 5 different meals of almost 4 oz. at a time, comfortably!!!! No more lugging her feeding pole around with us all over the house, or carrying her feeding pump around in a backpack while we are out on the town! A great victory indeed :-)
More importantly, Haddie Joy just feels good. This is a great relief to the whole family. It is so wonderful to see her smiling throughout the day.
*Sighs* So, so grateful.
Now an update on her most recent doctors visits –
Yesterday she saw the hematologist (blood doc), nephrologist (kidney doc) and the geneticist.
The hematologist just took blood and is going to check her out for bleeding disorders because of the some of the unexplained bruising she’s had.
The kidney doctor has been monitoring her since her latest hospital stay. There are a few things going on so far. She still has slightly low albumin levels, protein in her urine and some swelling. Those things, we hoped, would just be gone by now…but, they seem to be sticking around. She also has bladder reflux (urine not emptying completely from the bladder and pushing back up into the kidney’s), and a small cyst on her right kidney. Neither the reflux nor the cyst are very serious, but lumping it all together with her lab work, it demands a bit more exploring. They are leaning towards something called Nephrotic Syndrome, which is basically (in this case) kidney disease in the womb and the first year of life. A biopsy has been talked about, and recommended by some of the team, but HJ’s doctor is being conservative, and not jumping into something that Haddie Joy might have trouble with. The big question is, will the information from the biopsy change HJ’s treatment? Probably not. Unfortunately, the known treatment for this type of kidney problem, isn’t really effective for children with genetic abnormalities, which they feel strongly is the cause of her issues. Even so, the treatments can be tried without putting her through a biopsy. So, we are sort of just waiting and monitoring her blood/labwork.
Genetics. Nothing here really either…yet. More blood tests ordered. Clinically, she has been diagnosed with Noonan’s Syndrome. This just means they think she has it, but can’t prove it. Not incredibly uncommon….except, with the recent kidney trend, looks like they may be backing off of the Noonan’s Syndrome and exploring some other rare gene mutations (four to be exact, I won’t bore you with naming them) associated with Nephrotic Syndrome.
The part in all of this, which is a bit scary is, over time, the protein loss causes damage to the kidney filters (I think I got that right). Right now, I’m not hearing that there is too much we can do about that, but we have time, so we can all take a deep breath and wait some more.
All in all, there are three different doctors who feel she may could benefit from information gained by some testing/procedure, but they would have to be willing to sedate her. None of them are stepping out to be the first. They all say, “The next time she is put to sleep, let me know and we will, fill in the blank.” The ophthalmologist also recommended eye surgery for her strabismis (crossed eyes) and eye sight, but last time we talked, he was in no hurry.
And neither are we!
Waiting. We have been waiting for a long time. As the specialists, one after another, look at us and apologize for not really having many answers, we just laugh and say, “Oh, we are used to that!” And honestly, as hard as I can be on these genius minds….I really don’t expect them to know.
After all, has Haddie Joy ever played by the rules? Do we really expect her to be easily “figured out”? No! Besides, I have an intimate relationship with the guy who does know, and yes, it does make me a little cocky.
I wish you could sit with us as the genetic counselor goes over the most recent test results, or as the hematologist explains his area of expertise. It is mind boggling. I have said over and over, if all of these great minds would just sit down in one room together for a long while, I’m sure they would come up with something! But the more I listen, I’m not so sure. The human body is, well…just wow. Stop for just a moment and contemplate this next statement, God knows exactly how it all connects. Amen.
He knows if these experts will be able to figure it out based on what’s humanly known (which is a whole bunch;), and when (if ever). From one aspect of Haddie Joy’s complicated health to the next, He actually knows it intricately and thoroughly. He knows. He’s smarter than these crazy smart experts! And let me tell you, they are impressively smart.
The best part in all of this waiting? We really don’t have anything to worry about. Truly, it’s a waste of time. What I have learned (kicking and screaming, mind you) – we can be praising Him instead.
I know Haddie Joy isn’t well all the way and things aren’t working quite right. But she sure does feel good now. She smiles. And she eats a little. She takes a pacifier. And it thrills my heart to see her doing it all. She loves mommy and daddy and sister. And her therapists, most days (teehee). She likes to look at life, and if she thinks you’re not looking, she’ll roll towards it or reach for it. She is so smart and funny, and yes, a bit onery (I don’t know where she got that from;) She is perfect. Fearfully and wonderfully made.
God’s got her still, and what a God He is! The God of kidney’s and genes and blood. Yes, He is worthy. I’m kind of getting used to this waiting thing ;0)
Great is the LORD and most worthy of praise; his greatness no one can fathom.