It's Saturday and we are having a lazy day today. Em is with her dad, and then going to a birthday party where I am picking her up at five. Jude woke up again about 4am and had a seizure like he does as a pattern. He had his Klonnopin, and ounce of formula, and then he snuggled next to me to go to sleep. Mike said he thinks Jude sleeps better in our bed so Mike went upstairs to his "man cave" and slept on the couch. I told him he didn't have to go, but he said he wanted Jude to get some good uninterrupted sleep. About 9 Mike came back down to wake us up so Jude could have his morning topamax and pheno. We then all three snuggled in to watch a show on football. It was great laying in the bed without any rush to get ready for work, or other activities.
So this morning my phone rang, and it was my new found friend online Jocalyn who has a daughter affected by a stroke. I was excited to finally talk to her on the phone, and to trade stories regarding our children, governmental help, and lack of help. It's unfortunate we met online because of our children's issues, but I am glad to know her. It's nice having someone who can relate to exactly what you are going through. The same exact comments come from her are ones I have heard myself of Mike say. We are going to arrange a dinner soon so our families can meet. I think this will be great for all of us including Emily because she has a son close to Em's age. She will be able to see that other children have siblings with conditions like Jude's. Speaking of the government we are trying to get the final paperwork complete for MDCP so they can get Jude's information processed. I think that program will help us some even though I am a little unsure of how it all works. Jocalyn tries to educate me a bit about it, but I feel I have a lot more to learn.
So I had someone this week ask me about Jude's condition and what happened. When I explained that they found a brain bleed in utero they seemed mortified that I went ahead with the pregnancy. I cannot imagine Jude not in my life, but her words brought back a flood of memories. I went ahead and told her the story, and when I was done she understood why we gave Jude a chance. I had had an amnio because I am 35 that said everything was fine, the sonograms had been fine in the doctors office, and the pregnancy had been humming along. Then it was the level 2 sonogram at 18 weeks that showed a slight elevation in Jude's brain ventricles. That slight increase turned into a nightmare of decisions, and questions. The MRI at 19 weeks revealed there could be severe problems with Jude's brain due to a brain bleed or in utero stroke. We then took the MRI to a neurosurgeon at Cooks children's who reviewed the films with the head of radiology at cooks, and Harris. They told us they could see the issues, but had seen a lot worse. That his brain was very very young still, and you never know what may lie ahead. Every doctor we talked to regarding Jude's situation said he could be normal, he could be dyslexic, or he could be profoundly disable....there was just no way to tell. We wrestled with our decision, but knew in our hearts that unless they could tell us Jude's situation would be hopeless, or life threatening we had to proceed through. In fact when the perinatilist told us that Baylor would not approve a termination if we decided that's what we wanted because we could not prove anything was wrong........we made up our mind. In fact they even told us we would have to go to a Dallas abortion clinic that specialized in late termination. So I looked at the doctor and said "So if the hospital won't approve a termination because we cannot prove anything will be wrong with him then why would you want us to terminate based on what MAY happen?". So the doctor was nice, and simply said that this was something we had to decide ourselves, and once we decided we would never look back and question "what if". I told him that the neurosurgeon, and others we talked to gave us some hope. They explained that the brain is the most complex organ in the body, and the only one that can compensate for parts that do not work. We did not want our son to be in any pain, but we also didn't want to terminate a healthy child. So I explained to the lady that asked me why I didn't terminate that there was no "what if" anymore. Plus I have a beautiful son that brings light into our lives. We know we didn't do this for selfish reasons, but to give a baby a chance that fought to live so that's the least we could do for him.
Have a good weekend everyone.