Special Needs? No… just special.
At the party, there were twin boys there, also preemies, that are now starting to walk (they were a year in OCT) and the little birthday girl is also walking. And there is Spencer, Army crawling around everywhere because he can’t crawl on all fours yet. Someone at the party asked how old Spencer was, and I smiled and said he’d be 15 months old this month. They smiled and said boys like to take their time doing things like crawling and walking.
I think my skin is starting to get a little thicker, and it’s easier the more things that Spencer is starting to do on his own. He didn’t roll until he was about 7 months, and that was just from back to belly, he finally completed the circle around 10 months. I was also concerned that he wasn’t sitting up on his own, and all our other preemie friends were sitting, but if it’s one thing you learn, preemies do things in their own time. Then there was always the fact that his body has been around the 10% mark, while his head is consistently in the high 80′s% to low 90%, so yeah, might be a little harder to get that big noggin up on his own.
At first we’re all concerned because many of our little preemies aren’t keeping up with the “termies” that are surrounding us, and those that don’t understand are asking us “why not?” Since most of our magic balls have mysteriously disappeared, it can get frustrating, or you just finally step back, take a deep breath, not let it get to you and tell them, “preemies do things on their own timeline…that’s why he/she/they didn’t wait until their due date.”
In utero, they diagnosed Spencer with Ventriculomegaly and Hydrocephalus and told us he’d need a brain shunt when he was born and that his cerebellum was smaller than normal, but they would keep an eye on its growth. Not much you can do about all of that except hope that things are not as bad as what you found when you researched it online and completely freaked yourself out. Sometimes the Internet is NOT our friend.
So yes, we knew there would be some issues, but that would be fine, other than that, he was doing great. Well, that was until week 28 when I was admitted to the hospital, then the day I turned 29 weeks and he decided to make his appearance. They immediately started monitoring his ventricles which were twice the size of normal to make sure things didn’t go south quickly. And to all of our amazement, during our 64 day stay in the NICU, Spencer’s ventricles shrunk back down to where he was NOT going to need a brain shunt!! OH HAPPY DAY!
We went home on 29 Jan 2010 knowing we were to keep an eye on his head size for any wild growth spurts, but again, his head was much bigger than his body, so how much bigger did it have to become? They sent us in for a cat scan, all seemed well but they confirmed an absent Septum Pellucidum, which we knew about, and the ventricles were still bigger than normal, but still no need for a brain shunt. Now…I just needed to be concerned about keeping him away from germs and sick people.
Fast forward to SEP 2010, time for a follow up MRI which we expected to receive the “all is well” from our neurodevelopmental specialist Dr. Dan Doherty at Seattle Children’s. I was terrified as they had to put Spencer under for the MRI, I don’t think as a parent you ever get used to that, no matter how many times it happens. He woke up groggy yet his normal cheerful self and smiled at us, so we knew all was well. Then we had lunch and off to the consult with Dr. Doherty (who yes, I referred to as Brain God in another post).
Dr. Doherty came in, set down and I was very happy that he didn’t beat around the bush, but let us know that on the MRI, it showed that Spencer has a rare brain malformation called Rhombencephalosysnapsis (RS), and there are only 40-50 cases worldwide and that was why his cerebellum was showing smaller than normal in utero. He is missing the part of his cerebellum that controls trunk stability and balance, which now explains why he can’t crawl or sit up on his own. Not much you can do about it, but wait and see what happens. There are probably WAY more cases out there, but many don’t know what to look for, and until the MRI came into use, there was no way to diagnose RS.
With such few documented cases, they really can’t tell you what to expect. They can’t guarantee he’ll walk for sure, but the odds are very likely, and well, he is my child and I’m stubborn and competitive, so do I think he’ll be a wall flower? More than likely not, and it’s already obvious he wants to keep up with his friends!
Dr. Doherty’s clinic was kind enough to put me in touch with another family that lives within 40 mins of us that has a 7yr old daughter with RS. What a God Send to talk to someone that has already walked that path and have someone to vent to, ask questions, etc. I was the first parent she had talked to that had this as well…7 years of going through this alone, I cannot even fathom that. So yes, I’m the lucky one to have met a beautiful, scary smart (IQ of 134 if I remember correctly) young girl who calmed all of my fears be explaining to me the significance of a butterfly to Rhombencephalosynapsis.
It went something like this…”Do you know the significance of a butterfly with RS? Your cerebellum is like a butterfly, the two hemispheres are the wings, and the body separates the wings. Spencer and I are missing the body of our “butterfly” which controls the stability and balance for the butterfly.” It hasn’t been easy for her, she’s had several eye surgeries, walked with a walker until she was almost 5 and still goes to therapy, but she also attends a talented and gifted school and her memory is far better than mine.
Out of the mouths of babes…she summed it up and made me realize that this is nothing. When I think of all the parents that have lost a child, and have gone through so much worse, this is nothing. This is but a speed bump in our journey of raising our son.
Spencer will be 15 months this month…as I mentioned he still Army crawls everywhere, and with amazing speed. He still cannot get into the sitting position on his own, but if we put him there, he will sit for a long time. He recently started pulling himself up on everything that he can, which is great, except that even he forgets he has no balance so lets go and face plants or lands on the back of his head. We never freak out, so he rarely cries about it, but believe me, we’re there before he blinks if we weren’t already there waiting to catch him. He wants to do things on his own, and it’s hard as a first time parent to stand there and not help him grab things just out of his reach, or make it easier for him…I want him to figure out how to get things, I want him to know that if he tries, anything is possible.
To me, he is not special needs, he is like all of our children, he is just special.