As you probably know, my older girls have always been very small. When I realized they hadn't gained anything in over six months, I made an appointment with Dr. C. He wanted to run some tests, and we've been waiting for the results. I finally got the call from Dr. C's office. (I've called six times in the last two weeks, and what they failed to tell me was that he was spending all this time researching and consulting with colleagues and specialists.) I should be getting a copy of the reports tomorrow, so I'll hopefully better understand the specifics then. This is what we can share as best as I know now.
The first round of bloodwork from July 19 came back with some really unusual readings on the Complete Blood Count (CBC). There are I think a dozen or so readings taken in a CBC, and for both girls, more than half came back abnormal. Some were very high and some were low; I don't really understand the specifics yet beyond that. Apparently, these results were pretty unusual, which is what lead Dr. C to repeat the test on July 27.
Smartie's second test came back a little better--still abnormal but closer to normal than it had been. Sweetie's came back the same or worse. It now appears likely that Sweetie, and probably Smartie as well, have some type of rare blood disorder. Dr. C is sending all of Sweetie's files to a pediatric hematologist (blood specialist) for review. In preparation for this, we have to do a third CBC and another new test we haven't run before. This new test (I don't know the name of it) is pretty rare. There are no labs in the Midwest that run it, so the blood needs to be shipped to California for analysis. Even though he hasn't sent Smartie's files to the hematologist, he wants her to have the new test run as well. They also are getting chest X-rays and abdominal ultrasounds because their liver enzymes were really high and he wants to see if their livers are enlarged.
I thought the last two weeks of waiting were hard, but this is going to be even worse. We know something is wrong, but we don't know what it is, how bad it is, what the prognosis is, or what the treatment plan will be. It'll take at least a week before we hear from California, and then we'll likely have to meet with the hematologist for one or both girls.
Please pray that their condition will be manageable and that we can find the best way to treat them.
8 comments:
Jen, we will be praying for you all! We will praying that you are able to remain peaceful during this process and feel the Lords love around you. Please keep us updated as you know more. If there is anything that can help (maybe a playdate or whatever) just let me know.
Jen - I've been wondering and thinking of you guys with this alot. So while I"m "glad" for an update, I can easily understand why this period of unknown feels harder. We'll be praying for all you guys - that you can feel a sense of peace in the waiting, that God's hand can be on your girls and that He can go before you - with every test, doctor or step that awaits.
Thanks for the update.
We also will be praying for you!
my heart just aches for you to have to go through this Jen. As a mom, nothing is more troubling than knowing something is wrong with your little babies and not knowing how to make it better. I will be praying for you that you will have wisdom, peace and strength from the Lord in the days ahead. love ya.
I am so sorry Jen. There is nothing more scary than when something is wrong with a child. I will be praying for you and that the diagnosis is something that can easily be dealt with. I know it is one of those time when as a mom, we would rather go through all of this instead of watching our kids do it. God will also give them the grace to endure.
Jen, we are praying for you!!
Let me know if your doctor thinks cord blood will be useful.
Jen, my prayers are coming your way. there is nothing harder than waiting on test results. hugs hugs to you!
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