You know, since all this happened with Nate, the only time he would ever make a sound was when he was having a seizure. Lately, he's been very vocal... but it doesn't look as though he's having a seizure. I don't know whether to get excited about it or not. Isn't that stupid? Everytime there's good news with Nate, I seem to be very cautious with my joy. It seems that when something is going well and we feel as though we are finally getting on track and progressing, something happens.
Another exciting moment, but again, I'm not sure what to think really. The only time Nate has smiled since May 10, 2008 has been during a seizure. So, it's not a "real" smile. It's not as if you can smile back and get a reaction. Well, yesterday, Nate had his baby class at the Britain Center and during swim time, his PT was holding him and I had a pinwheel that was shiny silver. I would spin it just to see if there was a visual reaction, a blink, a look of focus.... whatever. What happened next I wasn't quite prepared for. He smiled.
Not a giant happy smile, but more of a half open mouthed smile. His eyes looked a little heavy, but not like they do (or did) when he's having a seizure. Mo was very excited about it. I just kind of smiled and said, "Yeah, it sure does LOOK like he's smiling". Well, he did it about 1-2 more times, then we moved on to something else. About 5 minutes later we tried it again and sure enough, he smiled that smile again. My heart sang, but my head wondered if this was just a seizure. I used to be able to predict the entire sequence of his seizures. Now, they are different. He definitely doesn't have the myoclonic jerking were his arms would shoot above his head and his head would lurch forward and his knees would come up, but there are times you are positive he's not there. Like he's seeing a different world and you're not in it. Then there are times when these amazing things happen and I should be very excited, but I'm just not sure why these things are happening. Can't I just be happy? Am I turning into such a pesimist that I can't even accept these events that ALL babies should do?
Maybe something is triggering in his brain, but maybe not.
I wish I knew.
On the cochlear implant situation, Nate is scheduled to get it on January 15. I'm not really sure if it's outpatient or what. The gal at Midwest Ear Institute mentioned to me, one of the risks of a cochlear implant. She almost shuddered to tell me.
Meningitis.
MENINGITIS????
Apparently, with the wires being fed into the middle part of the ear, there is a risk for infection that could travel to his meninges (the fluid around the brain that when infected is meningitis). So, she mentioned that he should be all up to date on his vaccinations.
I raised my shoulders and shook my head.
"He's not."
"He hasn't been vaccinated since 3 days before he GOT menigitis!"
Our pediatrician has always been very compassionate and understanding about our fears. Here's a baby who just had a severe infection around his brain and heavy duty antibiotics. He's at risk for pneumonia do to possible micro aspiration. I KNOW I don't want him to get all the shots they give babies at their check ups. He hardly has an immune system at this point and he's NOT getting 14 different weakened viruses put inside his body. For all we know, that is the very reason he got sick in the first place! AND the meningitis vaccine is a SUPER vaccine that has 7 different strains of pnemococcal meningitis in it. Nate had one of those strains!
I'm not sure what to do. I need to pray on it. But sometime before now and Jan. 15 I need to figure it out!
Please pray for God to send me a sign.
On another note, Nate had a Christmas program for the Britain Center last night. As I've mentioned before, Wednesdays are crazy days. We ended up being late, they wanted us there at 6:15 and the program started at 6:30. I knew I wouldn't be there at 6:15, but I was hoping to get there before 6:30. Well, after parking and walking in with three kids all by myself, I heard jingling and them singing Nate's Christmas song. I immediately teared up, we had missed it. I sat down and just cried. Then of course, Emi started to cry and Charlie hugged me. We decided to leave, I felt ridiculous. I had Nate all cuted up and now we were going home. In many ways, I felt like I screwed everything up, like I was a failure. I know Nate had no idea and it wasn't bothering him to not be in the program, but I was just heartbroken.
It was just one of those days, I guess.
Well, I must log off now and get going to work.
Love to all!
Carolyn
I love you! I love the person you are, the mommy you are and the friend you are. I love all about you, because you are feeling with honesty and you aren't afraid to say so!
ReplyDeleteBy the way, ease up on yourself a bit, you are better than your fears my dear! Besides that I bet you haven't forgotten to pick your kids up from school yet!!!
Tracy
Oh honey,
ReplyDeletehearing you say you were scared to be happy about Nate smiling broke my heart and I immediately remembered your post about acceptance. So often we take for granted daily events, the sun will rise, birds will sing,you will go about life in your normal routine, the sun will set and tomorrow is a new day, leaving today nothing but an overlooked memory. But sometimes, events like this happen, and for that moment your heart will sing and your soul will dance. Then the memory of that day, May 10th enters your head. I pray for you daily, that you can live in today, not the past or the future, for today, for the moments that make your heart dance. You are not pesimistic, just human. A mother who loves her children. A mother who, like every one of us, has moments where we take on the burdens of life and take blame for things not going perfectly, and all we can think about is that we may have failed. Like you said, Nate did not realize he was not in his program, but he had a mother who loved him enough, to do her very best to get him there. I pray for your happines and strength to keep being you. To accept that life is not always as predictable as we'd like to think. Life happens. Instead of taking blame, to realize you have a full plate and are doing your best, and that in itself is an accomplishment, and nothing less. You are a beautiful woman, a caring woman, a wonderful mother, and for today, let your heart sing and dance in the moments that make you happy. Who knows what tomorrow will offer, but for today, NATE SMILED and that is a beautiful memory. XOXO TNDVPCAC
I understand your fears of vaccinations. I wish I could give you a solid answer of what to do. All I can say is follow your gut. Ty is finally caugt up on all of his and E has a long way to go before he is caught up with his. We believe vaccianations are part of the cause of Ty's Autism so we are super careful now with one at a time and spread apart.
ReplyDeleteYou are doing great and its totally normally not knowing what to celebrate and what not too. Carrie is right, take the smile each time you get one and be happy about it. Take each moment at a time. With us there moments that are good and bad throughout the day so on my good days where I am rational I know to take each moment and be happy when I can. I know easier said then done, I have plenty of days that I look too much at the bad and forget all the great things Ty does.
Take Care,
Amy Hayden