Tuesday, October 18, 2011

{all i want for christmas}

One year ago, we were picking up Avram's fancy new helment. Many people have asked me how long he ended up wearing it and if it helped since I did a poor job of reporting on it. He ended up wearing it for a little over three months, and then his seizures started. We just didn't feel comfortable putting it back on him after that. The doctors were confident that the helmet didn't start the seizures, but it made us feel better leaving it off nevertheless. Although, looking back over pictures from October through January of last year, I can tell what a huge difference it made. His head was looking pretty funky, and it's so beautifully round now.

But like I was saying. It was October last year that we were picking up Ave's helmet. We may need to rename this month Orthotics October or something like that, because I just finished scheduling a fitting for the buddy to get some ankle supporting-booties.

Since he started cruising a couple months ago, we noticed that his ankles turned in pretty significantly, which is actually not that uncommon in little tikes standing independently for the first time (especially kids with low muscle tone, like the buddy). But, unfortunately, Ave's ankles have not corrected themselves. We head in on Halloween morning for a fitting for a fancy pair of these.

(Think they'll mind if we come in costume?)

Good news is that he only has to wear them when he is awake (three cheers for not having to sleep in uncomfortable plastic junk, like that stupid helmet--hooray!). We actually get to pick out a cool pattern for his new shoes, too, which I'm pretty excited about since we didn't get to do that with his helmet. It's not a forever thing, just a strength building thing. And, probably the best news of all, is that these cool new shoes will help his balance and coordination so much.

Bad news is...well, actually, I don't think there is any bad news. I think I've come to terms with the fact that Avram is just going to need some things that other kids won't need, and I'm just done being upset about it. I've fought God on so many things he has needed: his surgery, therapy, his helmet, and it has all done nothing but helped him. So, I surrender.

At least for now.

So, back to his balance and coordination.

A couple weeks ago, Ave had a bad case of Extreme Vomiting. I don't know what else to call it, because he didn't have a fever or loss of appetite. Not even an ear infection.

Just...vomit. Lots of it.

(aren't you glad you read my blog today?)

Fearing it was something to do with his shunt, our pediatrician sent us over to Parkview for a CT Scan (which, by the way, holy cats, that place is GIGANTIC).

In many ways, Avram getting sick that week turned out to be a blessing in disguise. For one, it got us in the system at Parkview. So now, any time we need to go, they already have all the information on the buddy that they need. Secondly, it calmed my anxiety about moving hours away from Children's Memorial. I love Children's Memorial, but I had such a positive experience at Parkview North that week. They moved quickly, were super organized, went out of their way to make sure Ave was comfortable, and kept me posted on everything. Phew.

Lastly, and maybe most importantly, it let to a possible change of Avram's diagnosis.

This is going to sound a little strange.

After the CT, I was called back in to the Radiology Department to speak with a neurologist. He asked me what we had been told concerning Avram's diagnosis, and I gave him the whole story about all the ultrasounds and and MRIs and yada yada yada and how they finally said he had Hydrocephalus and Schizencephaly.

The doctor sat there for a minute, then told me that based on the scans it didn't appear that Avram had Schizencephaly, but Dandy Walker Variant.

This was pretty bizarre to me, of course, because that's what my doctor said at our 20 week ultrasound, but then was later told after the Fetal MRI that he didn't have. No one has ever mentioned Dandy Walker again.

As he began to tell me the symptoms of Dandy Walker Variant, it just seemed to fit Avram so much more than Schizencephaly. When I read about kids with Schiz, they don't sound like our buddy at all. They have breathing problems, many can't eat solid foods, never walk or crawl (and if you know our little guy, you know that eating is definitely not a problem for him).

There are three kinds of Dandy Walker: Dandy Walker, Dandy Walker Variant, and Mega Cisterna Magna. Avram appears to have Dandy Walker Variant, which is the mildest form of the three.The biggest problems kids with DWV have are balance and coordination (sound familiar?), especially with fine motor skills (totally our little buddy). They tend to have at least average intelligence and do really well overall. It just fits so much more.

It's like everything suddenly just made sense.

Before I didn't really think that a name or diagnosis mattered that much, because whatever challenges we had we were just going to face them. But putting a name on it has, oddly enough, brought some peace to this mama's heart.

All the grandparents have suddenly jumped into Christmas mode around here, asking for lists and ideas and most-wished-for toys. I have had a hard time coming up with a list for myself, of deciding what I want, because really the only thing in the world I could want or wish for is for Avram to walk. He is so close, and working so hard.

 I want him to fly, to take off, to experience his first rush of crazy independence.

I want to run him down in the grocery store and chase him around the house before bath time.

I want to be exhausted at the end of the day, to only be able to wear my gym shoes during the day just to keep up with him.

That's all I want for Christmas: so bring it on, little plastic shoes.

Bring. It. On.


Netta said...

You always make me cry! Your faith, humor, honesty and amazing outlook makes me wanna stand up on my old, ugly computer chair & CHEER for you and PRAISE JESUS!
I love you, CassiO

Tina M. said...

I hope the new "kicks" give Ave the boost that he needs to run you ragged :) ! And I hope that having the correct diagnosis will help his doctors to better guide his care. You continue to be in my thoughts and prayers.

Jodi Mundy said...

Thank you so much for sharing your story. I always hear updates about your little angel from my cousin (a.k.a. you're dad's wife)and am so moved by your words, your strength and your determination as a mom. Your little boy is beautiful! You are all in my prayers as you move onto the next step with his new shoes! May God bring you the exhaustion and the excitement of your little one running around! Get prepared for locks on all of those drawers! God bless!