Monday, August 1, 2011

My Price

I thought I would back up here and tell a little about Price's journey thus far. I've explained a little in past posts, but I wouldn't blame you for not wanting to go back and read our entire blog. I find when I am reading a blog, I love to get some background information.

Okay, so Price was born August 29, 2008 after a healthy, 40-week pregnancy. He weighed a solid 7 lbs, 12 oz and we brought him home from the hospital a couple days later. He was (and still is) a good eater, a good sleeper, and just overall a content, happy little guy. He was doing all the things we thought a baby should be doing..smiling, cooing, etc. Nathan and I have tried to remember if he was doing what Ellery and Street were doing at such-and-such age, and the truth is that it is all very fuzzy. We weren't looking for something to be "wrong" with Price so we just assumed we had a laid back, healthy baby and counted our blessings.

Around 4 months, Price's head circumference shot up in percentiles big time. It went from like the 60th percentile to the 99th percentile. I mentioned it to the pediatrician and he wasn't too concerned (Ellery's head is larger than average and Nathan's family has some "big brains" in it). I also mentioned to our pediatrician the fact that his head seemed to "bob" more than it should. His head control just did not seem appropriate for his age. I was again reassured that boys are slower than girls and that Price was just fine. To reassure me, the pediatrician sent us to get a head ultrasound. According to the ultrasound, Price had something called "benign external hydrocephalus". Basically, it means his head is large and to fill the extra space there is some fluid around the outside parts of his brain. The doctors assured me that it is benign and that he might have some minor motor delays but that's it. It would resolve on its own. Phew, we were relieved.

Call it mother's intuition but I wanted to see a neurologist anyway. I also noticed around this time that Price's eyes didn't always seem to move smoothly. And sometimes his eyes seemed to roll upwards, almost like he didn't have control over them. We saw two pediatric neurologists around 5-6 months who took one look at Price, and told me that he was going to be fine. His head was big because his daddy's head was big and his eyes, well, he just didn't have full control over them yet. It would come. We were once again relieved and thankful, but only for a little while.

At 6 months, Price starting wearing a helmet because of his right-sided plagiocephaly. He always turned his head to the right side and this combined with sleeping on his back at night, had given him a funny-shaped noggin. Price wore his helmet like a champ and we saw some improvement in his head shape. I say that now it is evenly flat instead of just flat on one side.

All this time, I took him to the pediatrician A LOT! Is there something wrong with his eyes? Why does he still bob his head? Why can't he sit up at 7 months or even roll over? But again, I was reassured he was just slow. And reassured that the neurologist would not have sent us on our way if there had been an issue. I really felt like a paranoid mom. Our pediatrician told us we could start physical therapy if that would make me feel better.

We started physical therapy with Price at about 8 months, and our wonderful PT Irene diagnosed Price with torticollis. His head easily turned to the right, but had a hard time moving to the left. We saw her twice each week and were hopeful that Price would catch right up to where he needed to be. Around 10 months, I sought out speech therapy on my own as well. Sure, boys might be slower-to-talk than girls but Price didn't even put his lips together to make sounds. Something was just off to me and I figured the earlier we intervened, the better.

I also called our neurologist a few times, even after he said he wouldn't need to see Price ever again. I was just so worried about his eyes. One day at our pediatrician's office, we had to see a different doctor and she commented on them right off the bat. It was a horrible comment that to this day makes me upset, but she noticed and I felt like I was somewhat being validated. Our neurologist lined up an EEG to check for seizures, and they were ruled out.

I decided to take him to a neuro-opthamologist to put my fears to rest about his eyes. The doctor we saw diagnosed him with a downbeat nystagmus and said she thought he had a Chiari-malformation. She said we needed an MRI to rule this out. Just typing this makes my heart beat a little faster. I remember the sadness, the guilt, the reality that something was wrong.

His MRI was negative for a Chiari-malformation and the cause of his nystagmus was unknown. Price's eyes would bounce and then sometimes roll up, but not all the time. Sometimes his eyes would be perfectly steady and he would look us straight in the eyes. It sounds crazy, I know, and I am pretty sure a lot of the doctors thought I was making this up. His eyes were worse when it was really sunny outside or when he was eating. I remember not wanting to open his windows in the morning to let the light in. Oh, the sadness.

I googled and googled and googled. I found something called Paroxysmal Tonic Upgaze which described Price's funky eye movements. I learned as much as I could. I sought out doctors in Australia who were the first to describe this disorder. I found other mothers whose kids had been diagnosed with this. PTU was on an episode of Mystery Diagnosis and you may have happened to see it. Price does fit the definition of PTU but it still doesn't explain his developmental delay.

At Price's one-year check up, he was still not sitting on his own, had not uttered one word, and would not bear weight on his legs. Finally, the pediatrician agreed it was time to get more serious. He wanted us to see the neurologist again. We also saw a geneticist around 15 months who did several tests on Price, all negative.

Pretty much every test Price has undergone has come back negative. This last MRI we did on him showed a couple of findings (slight atrophy of the cerebellum) but so far no diagnosis has been confirmed. The only diagnosis at this point in time is hypotonia (low muscle tone) and developmental delay.

We have ruled out all types of genetic disorders, metabolic disorders, chromosome abnormalities, and ataxia disorders. We have also ruled out some degenerative disorders, which were by far our worst fear.

So, there you have it...a short version of our journey minus the tears, the prayers, the questions, the hurting...all the emotion. Price is now a month shy of 3 years old. He doesn't walk or talk. His eye movements are much better. They don't bounce like they used to and only occasionally roll upwards.

Price DOES sit up, army crawl, climb stairs, and pull up. He knows some sign language as well. He is able to communicate his needs and wants pretty well. He also smiles, laughs, and loves VERY well. Oh, and he has some of the clearest, prettiest blues eyes I have ever seen.

6 comments:

Momttorney said...

wow. It's almost unnerving how alike our journeys have been. I started with the same concerns (the bobbing head, the eyes, etc.) at the exact same points in time . . . and always got the same responses from doctors "she's fine," and it wasn't until our pediatrician was out and I took Sam to see another one in the office that we got our referral to a neuro-ophthamologist . . .

Katie said...

You are so brave. Hugs, to you and Price. And ellery and rager :)

Sarah and Justin said...

You are such a great mom Kristen! Stay strong...He has a plan! Keeping that precious boy in my daily prayers :)

Paige said...

Oh how I love you and this boy so very much. What a long , hard, exhausting journey, but you have never given up one second of hope or strength for that lil angel. You are incredible (and so is that handsome handsome lil boy). Love you.

Tiffany said...

I love you. I love Pricey. I am blessed that I have been on this journey with you, even when it's a shoulder to cry on or a long silent hug. I rejoice always when I pray for Price!

em said...

Hi,
Let me say, I am a random reader of your blog. Carolyn V. designed my blog, which is how I found you. :)

I can appreciate your struggles with Price, I work with kiddos who are equally challenged. Every time I think of him, I think of Phelan McDermid Syndrome. Have you heard of this before?

You have such a beautiful family!

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