I thought I would give a quick update since I haven't lately. Last week, we took Nate in for a follow up MRI. As most of you know he had a shunt revision (okay, two)over the summer. He was showing no signs of shunt malfunction, but during a routine MRI his neuro sergeon found a syrinx, or build-up of fluid in his spine. We were hoping that with a revised shunt that this MRI would show that the syrinx had decreased in size. Unfortunately, it was unchanged. I was so worried that they were going to recommend surgery again to try and fix it, but thankfully they didn't. His doctor believes that going in and trying to get rid of the fluid would cause more harm than good. As long as he is progressing, isn't symptomatic and the syrinx doesn't grow in size, then we are just going to leave it alone. Ryan and I are both happy with this outcome.
As far as therapy goes, Nate is a trooper. He has therapy 4x a week and he seems to be benefiting greatly from it. Soon we are going to be adding speech therapy (at 17 months he isn't talking at all). We are still using the stander twice a day. Our PT was out for the past couple weeks, so Ryan and I were anxious to see what Nate would do when she tried to get him to push up to stand. We were all surprised to see that on his first try, HE USED HIS LEG MUSCLES TO TRY AND PUSH TO STAND!!! It was nothing like full-on standing without support but was a HUGE step in the right direction! We are so proud and excited for what is to come! If you feel led, please pray that Nathan continues to build muscle strength in his legs and learn to support himself. We know only time will tell, but through God all things are possible! Nathan is proof of that!
And just a brief vent about the downs. Really, it's just me. I am so proud of my baby and all that he has accomplished. Believe me, I wouldn't change a thing. But certain things just get me emotional. Like seeing him "upright" when he works with Toni, which gets me thinking about how tall he is, which leads to thinking of what it would be like to see him toddling around the house. A fellow mommy-blogger put it best. Usually when I am having a bad day, it has something to do with work or the house being out of order. These are things I can control. I shake off whatever is bothering me at work, straighten up the house and tomorrow is a new day. But I can't do that with Nathan's SB. It's out of my control (and in God's hands) and sometimes that is so hard. Most days I can tuck those feelings away, but sometimes I can't help but wear them on my sleeve. It's gotten a little harder now that Nate is at the "toddler" age where everyone (innocently) asks if he is walking yet. Sigh. Enough of my pity party. All he has to do is look at me with those big, blue eyes and his adorable smile and I forget that I was feeling down anyway. That makes all the bad days worth it!
Stephanie, I think you are well within your rights to vent a little, as every parent is. Believe me, if I "vented" publicly every time I was crabby, I would have absolutely NO ONE who wanted to be in contact with me anymore. You are a good writer and very positive, and furthermore, you have a great way of presenting the information regarding Nathan's health. I feel like I have learned a lot already. Vent away-sometimes you have to.
ReplyDeleteMegan didn't talk at all at 18 mos. I was really concerned, and we had her evaluated by Easter Seals. She had a delay, and qualified for speech therapy, which we (hangs head) never got for her. She is now three, and can actually speak more clearly than Sean, who is almost 5, but can't say certain consonant blends. Kids will surprise you, as I'm sure you are learning!