Wednesday, December 10, 2008

So much for daily updates!

So I had figured that I would be able to do this daily...but life and xmas shopping has gotten in the way. Oh such is life!

The kids are fantastic...who am I kidding. Jonathan is having huge issues listening, to the point where I am daily looking to see if there is something in his ears. I know it is purposeful, but come on kid, enough is enough. Speaking of Jonathan...I have yet to introduce him to this here goes. baby. I know I have 2 other children, whom I love with all my heart and soul, but Jonathan will always be my baby. He is six, but he still loves to climb in my lap and cuddle, he is so full of love. Sometimes so full of love I have to tell him to keep his hands and lips to himself. But I should be grateful. Most of you know, but some strangers (ooh I hate that word) don't know that Jonathan is a stroke survivor. The doctors guess that sometime within 72 hours of his birth that he had a stroke. Yes, the same kind of stroke that we associate the elderly with having. It can strike at any age, any time. We first noticed something was wrong when he started to have seizures. Nothing major, but at 8 hours old one of the nursing assistants in the hospital noticed his hand rhythmically twitching. I didn't notice anything, and when they came to look at him he stopped. I kept trying to breastfeed, but he wasn't interested. (He did eventually breastfeed...for the next two years...and probably still would be if I let him!) Then I felt it. His arm started twitching. I knew immediately something was wrong. I called the nurse and told her to call the neonatologist, that I wanted them to look at Jonathan. Sure enough, by the time the neonatologist looked at him, his entire left side was 'twitching'. My baby, not even 12 hours old was seizing. And it was continuous. For the next 36 hours...non-stop.

Jonathan was then brought to the NICU, and whomever decided that babies don't have tears when they are first born...yeah right. 2 hours...that is how long it took to get an IV in him. I am not sure how many times he was poked, but I do know that it was MULTIPLE times, and it took 2 HOURS! He had big tears, and a lot of them! So we spent a week in the NICU, not knowing what happened to the little man until day 7...he had an MRI and that is when we found out about his stroke. It was devastating. Tony and I were both hysterical. We were told that our little boy wasn't going to walk or talk, that he had irreversible brain damage. We were supposed to just take him home and love him. That's it???

So we took him and ran from the hospital. We worked with him daily...he would sometimes cry, but we still kept at it. Tony would take him in the tub and stretch him out. He didn't seem to have much control over the left side of his body, and it seemed to frustrate him. He had his early intervention screening, and the woman asked me what my goals for Jonathan were. My response: I just wanted him to grow and develop like any normal kid, sit up at 6 months, crawl at 9, walk at 12...the 'normal' schedule. Her response: You need to set your goals lower, because he isn't going to develop and grow like a normal kid. He won't sit up at 6 months.

Well lady, you were right, he didn't sit up at 6 months. He sat with little assistance at 5 months. Fooey on you! There was no way ANYONE was going to tell me that my kid wasn't going to do something. We worked hard...very hard. Tony was deployed to Iraq when Jonathan was 5 months old, so my attention was 100% devoted to Jonathan and his development. He sat himself up from a lying position, commando crawled, crawled on all fours and pulled himself to a stand all in one weekend. Mothers Day weekend. He was 9 months old. He took his first solo steps right before his first birthday. He said his first word just before his first birthday..."Molly". He did it, we did it. We proved them all wrong.

Jonathan still defies the odds. He is a typical wickedly annoying 6 year old that tests your limits. He runs, jumps, climbs trees, goes across the monkey bars, tells little (and sometimes really big) white lies. He is sneaky. He is mischievous. He is also the strongest person I know. He can do and will do anything he puts his mind to. Take that again early intervention lady!

Jonathan does have his little issues that we are overcoming. We are 99% sure that he was born a lefty...but his stroke effected his left side, and using the right is a bit awkward. But he is figuring it all out. Kindergarten is helping. His peers are helping. He is doing it.


Anonymous said...

Hi Sarah,
I have just found your blog (through Ellen's blogroll).
How fabulous that your little man is doing so well and defying all the odds! What a champ!

kathy said...

sarah, can i email with you privately? my email address is my newborn son also suffered a stoke and i wanted to talk to another mom about it. i have so many questions.