Wednesday, January 30, 2008

Update

WARNING: This post could be pretty lengthy, but just wanted to give an update on the latest with Hannah's health/development. We had an appointment with a neurologist today, so thought we'd fill you all in on what took place. (And, I promise, I'll try to put happy, fun pictures on again very soon!)

Family and friends—
Just want to pass along an update from our appt with the neurologist today. The doctor we saw (again, at Children's Mercy in KC) was very nice and seemed to be very knowledgeable in his field. He’s from France, so he had quite the fun accent as well! He was very good with Hannah and she was actually pretty OK with him most of the time…until he tried to physically pick her up, then, of course, she wasn’t real hip on that. Otherwise, though, she seemed to like him…and didn’t start crying frantically the minute he walked in the door (which is what she does with most doctors lately)!

Anyways…I guess we write with some good news and praises, but also some news that is not necessarily bad yet, but looks to be a little worrisome and discouraging. Dr. Le Pichon (we’ll call him Dr. L) talked with us in great detail for quite a while, going over everything from Will and I’s family medical history, Hannah’s birth, my pregnancy, Hannah’s life/health up until now, etc, etc., and then did a thorough exam on Hannah as well. Basically, when it was all said and done, he had come to a couple of main conclusions, and several possible scenarios that he shared with us.

First off, right off the bat he shared good news that the EEG and MRI both came back normal! So, that eliminates any possible seizure activity, and he also eliminated the possibility of most muscular diseases/syndromes. At this point, after going over medical history and doing a physical exam with her, he does not think that the muscular system is the problem. So, that is all definitely good news and gives us a sigh of relief. Praise G-od for this!

However, he did share, that he, beyond a shadow of a doubt, feels that Hannah has something going on causing a severe developmental delay. What does this mean exactly? According to Dr. L, Hannah’s lack of mobility is not due to anything we did or didn’t do when she was younger (i.e. not enough tummy time, too much time just sitting, etc). He thinks that there is something going on neurologically that is preventing her from being able to crawl, walk, etc.

The most interesting tid-bit of the appt. occurred when he asked if this was my first pregnancy. I told that we had one miscarriage in ’04. He seemed intrigued by this and asked if we knew or ever found out what the cause was. I told him (as I remembered) that my OB-GYN told us after the D&C that it was either definitely or most likely a chromosomal abnormality. So…what does this have to do with Hannah? (That’s what I wondered at first, too!) He informed us, before I even shared about the miscarriage, that his first “hunch” or thought is that Hannah might have some kind of chromosomal abnormality that, in Hannah’s case, is manifesting itself as a developmental delay. Chromosomal abnormalities can vary greatly and can cause hundreds of different things (such as downs syndrome, other disabilities, etc). (which, as I’m sure most of you already assumed, he also added that we definitely know that Hannah does not have downs). Some things can be treatable, some can be more serious and not necessarily treatable. But…he emphasized that, as frustrating as all this is, it is all mere speculation and only “what if’s” until we do…yep!…more tests to find out what is really causing this delay.

So, the plan right now is to start by doing lots more blood work. He has ordered probably 8-10 more blood tests to be done, to start filtering things out and narrowing the field of what he thinks could be causing this problem. Again, he emphasized that the chromosomal thing isn’t a definite until proven through blood (and maybe urine?) tests, but it really intrigued him about the miscarriage and a possible connection. If that does, indeed, turn out to be the case, it would mean that there is something with either Will or I (in our sperm or egg?) that is causing this abnormality.

So…we will return to Children’s Mercy in KC either this weekend or early next week for a whole batch of new blood work. Unfortunately, many of these tests are pretty extensive and apparently pretty in-depth, so they take approx. 4 weeks to get back. We will then return to see Dr. L in 6 weeks (from now) to get results…and see how to proceed.

I know this all seems probably a bit confusing, as it was at first for us, too, and, well, we basically left there with some relief, but yet possibly even more questions and “what if’s” in our heads. I guess, as Will and I have talked, we would just come to you all humbly asking for pra-yer. Things seems really up in the air still and we are faced with lots of doubts and questions, but we do know a couple of things.

First, we know that G-od ordained and planned out every day, every minute, every little detail of Hannah’s life before she was even conceived. We know that He is supreme and all-powerful, and can do more than we can ask or imagine. As I said earlier, we now have 6 weeks until we get these new results back. We are just asking for everyone, in these next six weeks, to pr-ay for Hannah. The doctor encouraged us to continue doing physical therapy, even while we wait, because even if something is “wrong” he says PT cannot hurt…it can only help. Will and I know that whatever G-od allows to happen, we can get through it with His help and strength, and he has made no mistakes in creating Hannah. We also firmly believe in the power of pra-yer, and if it be His will, that Hannah could be healed of this “abnormality” or delay…even in the next 6 weeks and, if G-od would choose, we could see some crawling or walking!

G-od is good and we are humbled more and more all the time realizing how much we truly need him. We are so blessed in so many ways…especially with our little girl…and we know that he is holding her in his hands, keeping her close, and has a perfect plan for her life. We don’t know what that plan entails at this point…but we know He knows best, even when it’s hard.

We love you all so much, and again, thank you for all your pra-yers for Hannah Beth. Thank you, in advance, for standing with us in pra-yer in these next six weeks. We’ll keep in touch!

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