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.

Wednesday, October 12, 2011

{requests of my memory}

Most days I am anxious for Avram to move on to the next milestone, to achieve new things. I am ready for him to be just a little bit older, to be able to do just a little bit more.

But then, there are days like today, moments like this morning, when I wish I could just freeze him in time. Moments I pray that my mind will serve me well and manage to wholly preserve.

These mornings are filled with images I pray my memory will keep close by: The moment I pick Ave up out of bed in the morning, and he wraps those little arms around my neck so tight. The serious-browed, puckered-lipped face he makes as he decides which piece of banana has the honor of being the first bite of breakfast. The tiny grunts and focused, busy hands as he tries to figure out a toy, the shriek of joy when he finds himself in the pantry (Where the Cheddar Bunnies are, of course. Who wouldn't shriek for joy?). The giddy smile on his face when he sees his dad's picture on the refrigerator, the happy "ba's" and "blllppss" I hear on the monitor when he wakes up from a nap, the loving reflex of running his chubby little fingers through the hair at the nape of my neck, his uncontrollable giggles when Dad does something funny.

My only request of my mind, my memory, is that in it's hustle to move past the pain and frustrations and anxiety, that it remembers the good, the cuddles, the after-bath smell, the big sloppy kisses. So, someday, when he is walking and talking and graduating and shaving, I can call back not only all the bad times and hard work that it took to get us there, but all of the good times and happy days, too.

Wednesday, October 5, 2011

{the speed of ten thousand horses}

We are, finally, back in the swing of things. After mountains of paperwork and lots of phone calls and weeks of waiting around, we are back in therapy. Avram qualified for Physical, Occupational, and Speech Therapy through First Steps here in Fort Wayne, so he is back in full Baby Boot Camp mode.

The first therapy appointment always feels like a sort of blind date; this stranger comes to your house, meets your family, hears your story, asks personal questions. It's a bit awkward, not knowing what their sense of humor is, or if they will be super personable or a total drill sergeant. It's pretty anxiety-ridden: Will they do a good job? Will they be tough enough? Will they be patient? Will they think we're weird? Will Avram like her?

Every time the door bell rang last week Avram & I sort of looked at each other like, "Well, how do we look? Do we look ok? Please tell me you brushed your teeth."

So far, so good. All three of our therapists seem like incredibly gifted and compassionate professionals. I am always amazed at the suggestions they make, at how changing one tiny thing makes such a huge difference in Avram. Just one small adjustment in how he holds his leg, and all the sudden he's pulling up to standing. Just changing the placement of food on his highchair tray, and he's got the pincer grasp down like an old pro. It's blows my mind. It's freaking magic.

The funny part of it all is how much Avram has changed since our last therapy sessions in Chicago. He was still pretty dependent and generally immobile back then. It's amazing how much our new house has encouraged him to explore (Especially the carpet. Oh, wonderful, soft, fall-buffering carpet! It makes me forgive how industrial-looking you are.) and become independent. I set him down on the floor to play, and bam. He's gone. He's in a cabinet somewhere, or sliding down the hallway on his belly, or sitting at the front door looking at the window, or chatting it up with himself in a mirror somewhere. Just like that, he's all big and independent. I go check on him every few minutes and he always looks at me with surprise, like, "Oh, are you still here?"

Which is wonderful.

Except for during therapy.

Where Avram used to sit and (usually) happily comply with Baby Boot Camp, now he knows he can simply turn the other way and take off. "You want me to do that? No, no thank you. I'll see you later. Thanks for stopping by though. Nice seeing you, really."

Approximately half of our therapy time so far has consisted of me chasing him down and dragging him back to the therapist.

I tell you one thing, you have to have some solid self esteem for that job. Avram is a sweet guy, but when they say "bye bye," he claps.

"You're leaving? Oh thank God! Here, let me applaud you while you exit. I'm so happy this moment has come."

He's just started cruising, he's still army crawling. He hasn't said any words, he can't stack things or smash things together yet. He sends sippy cups soaring across the kitchen. But he's babbling, he's figuring out how to pull back a car and make it go, he's opening up cabinets. He's drinking out of cups (take that, stupid sippy cups). In reality, he's more like a 9-12 month old then a 17 month old.

To others it may seem that we are progressing at a snail's pace, that we are behind. "Delayed," as they're so fond of saying in the medical world. I see the look in people's eyes when we go out, wondering why this big guy isn't walking or doing the other things he looks old enough to be doing.

But in our little world, we are flying at the speed of ten thousand horses, stampeding through fields and woods, jumping over hurdles and roadblocks, running farther than anyone ever thought, or said, we could go.

The wind is at our back again, and the little buddy shall be victorious.