Specialists

Shortly after Wil's diagnosis of Down syndrome we were handed a list of other medical problems to which his extra chromosome predisposed him.
The list included, but was not limited to, the following:
Heart defects (check - three of those, all repaired)
Thyroid problems (check - he was diagnosed with hypothryroidism at one year)
Eye problems (check - at two he received his first pair of glasses for farsightedness)
Hearing problems (so far so good)
Intestinal abnormalities (nothing major though has regular GI "issues")
Siezure disorders (no problems here)
Leukemia (again, so far so good)
Obesity (he does have a buddha belly but I think we're alright for now :o)
Increase susceptibility to infection (yup)
Atlanto-axial instability (check)
A daunting list, no? It certainly was for us when Wil, still in NICU, was diagnosed with Ds, which in itself was enough to absorb. We couldn't wrap our mind around all of the other potential medical concerns. We just wanted to get him home. But before we would leave the hospital a month later we had our first specialist. A heart specialist, who would monitor Wil's three defects and eventually send us to a surgeon for open heart surgery. It wasn't much later that we would add an Endocrinologist, Opthamologist, Audiologist, Orthopedist, and Gastrointerologist.
If I had been told that day in NICU that Wil would indeed have a number of the medical problems on the list I think I would have been too overwhelmed to take the next step.
I certainly get overwhelmed - all the time, just ask James - but when I look over the last three years I can see just how gentle God has been with me, with us. We have been given one diagnosis at a time - only after we have developed some understanding and become accustomed to the routine or meds required for the last one.
Because of that list from the NICU we have known for some time now that when Wil turned three he would be x-rayed for Atlanto-axial instability. This is an instability in one of the joints in the neck (the atlanto-axial joint). It is the highest joint in the spinal column lying just at the base of the skull. Basically Wil has too much range (forward and back) of motion between C1 and C2 and this can cause pinching of his spinal cord. Not good.
So, we are adding a new specialist to our list. Neurosurgeon. Today we were told that at one time C1 and C2 were always fused when the range of motion was over 4 mm. That is not the case anymore. Some are not getting fused until they are at 10 mm. Wil is at 7mm. However, the determining factor will have more to do with the degree of spinal cord pinching than with his "number." This will be determined by a sedated MRI sometime in the next several weeks. And then we will be told one of two things: 1. keep following the AAI or 2. stabilize the joint by fusing C1 and C2 together.
Please pray with us that our little guy will not have to have neurosurgery. After we handed him over to the heart surgeon two years ago I said I could handle anything that came our way, it was that hard. And I know, with the Lord's grace and mercy that I can. However the thought of surgery around his spinal column leaves me a tad uneasy.

Wil enjoying his favorite activity. Being pulled in his wagon by Nonnie. And yes, I attempted to cut his bangs - we will be visiting a professional this weekend. :)

6 comments:

Mary said...

How scary. I'll be keeping Wil in my prayers.

Jen said...

Stacy - we were praying for you about this Sunday morning, so my heart slumped a little when I saw on Facebook that you had gotten a dissappointing diagnosis.
I've been meaning to tell you something by the way - there is a little boy in our homeschool group named Carl (I'm guessing he's 10 years old or so?) - he won an award in the bridge building contest (you had to build as light a bridge as possible out of popsicle sticks and glue that could hold the most amount of weight) - I think his bridge ended up weighing like 8lb's and holding 160lb - it was absolutely incredible - one of the few in the group who got an award.
Also - one day the leader asked for a volunteer to stand up and pray for a tutor who was going through chemotherapy. That precious boy stood up and volunteered to pray for his friend - and when he began to pray I thought heaven had touched the room -you could sense the presence of God and His delight in Carl and His desire to respond to Carl's faith. It was truly a holy moment - one in which I just sensed God's deep love and care for all His children but especially for Carl. What a wonderful testimony he was to so many of us that morning.
I got to be with Will in the nursery a few Sunday's ago - what a delight he is. We played peek-a-boo for a long time and he just laughed and laughed. You have a treasure - as I know you already know! :)
Blessings,
Jen

waldenhouse said...

Thanks Mary.

Carl sounds like a great guy, Jen. I assume he has Down syndrome? And thanks for giving your time to Wil in the nursery. Peek-a-boo is indeed a favorite around here!

Spitmonkey said...

Oh jeez, Stacy! Wil and you guys are in my prayers, too.

It's funny, I don't remember you mentioning anything about hypothyroidism for him. I have it and have been on medication for it for about 8 years now - do you have to give him medicine? Fortunately it's pretty easy to maintain (as adults are concerned anyway...) so hopefully his other issues will follow suit.

And at this age, the Buddha Belly is still cute. Syd has one, too. ;-)

waldenhouse said...

Thanks Lynn,
Yes, Wil receives a pill each day for his hypothryroidism. It really isn't a big deal to manage now that we have his dose regulated which took some time.
Thanks for your prayers. And I agree, the buddha belly is cute!

Jen said...

Hey - yes, I thought I wrote that, but I guess I didn't. Carl does have Down Syndrome.
Hope you have a good rest of the half of this week! :)

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