I have been told that I am negative towards my child. I have been told I am hindering HIM and what he can be. Although I disagree with those statements I truly feel that I have had a realistic outlook on his life as a preemie and the long term issues that we would be facing.
When we found out we were pregnant I was still determined to start at the U and finish my degree fro Child development and get my certificate for child life specialist. I had the same instructor for 3 of my classes and I was really looking forward to my classes.
The first week of school came and I was doing better at not puking during classes (of course after class and in between was a different story) but I let my teachers know that I was pregnant and that I was actually going to be able to have the baby the day of my last final. That was what we thought.
Fast forward a few weeks.. We are getting ready for our first test and we had to cover prenatal stuff. We were learning about the age of viability. We were taught that according to our text book it was 25 weeks. That was the *magical* age. We were taught of the outcomes and the hardships.
Then came *that day*. I was 25 weeks. In fact I was 25 weeks and 3 days. I was VERY sick and I was paranoid but there was something wrong and I felt it. The rest of it is history. Ty came and we started on our journey.
Some issues we faced were:
PDA
IVH
Hydrocephalus
ROP
Craniosynostosis
After the PDA was fixed it was fine. We have had no other issues with his heart. We still don't see a cardiologist.
The Brain bleed was severe. It is severe. He has a grade 3 and 4 bleed. We had no idea what our outcomes would be because of it. We were told many things. But we were told that no one could predict what he could do. That is what we held onto. We jokingly talked about pimping out his wheelchair if it came to that. AND then the relief when he was determined to crawl and now he is determined to walk.
We though the hydrocephalus was resolved but after the reservoir was taken out we had our complications. He had a emergency shunt placed and then revised. Nothing since.
The ROP was severe and was treated with laser surgery. We were warned of the chance of CVI and yet some how we escaped that diagnosis. Even with the bleeds.
His craniosynostosis was a direct result from his prematurity in which we fixed and feel like we have dealt with that the best we know how.
What long term issues?
Ty has a limited vocabulary. BUT we are working on it with speech therapy. They say his receptive language is actually above average. Meaning he will do whatever we say.. Which is true. He follows directions so well and is VERY well behaved. PLUS he says and mimics some of the absolutely cutest things. Makes your heart melt.
He has a few sensory issues. All of which are a dramatic change from who is was last year. He won't scream when we vacuum and he eats just about whatever you put in front of him ( especially chocolate) he even tries just about every thing. He has even enjoyed a few shrimp scampi!! He is getting use to noise but that one.
We will always deal with the shunt on a as needed basis. So for us it is not big deal and we deal with it when we need to.
His eyes. Well they tell us he is legally blind. But then as we go back and do his therapies his eyes improve and we can see a huge difference in him. So we will just plug along doing what we need to do.
The biggest is his mobility. Although he took his time hitting his milestones he has some spastic muscles. Although he falls in the normal range and no one can decide on what to *call it* The neurologist feels it will just all fall into place and the PT we are currently seeing is helping us a lot.
So those are the long term issues. Not such a bad list right. RIGHT!!! WE are so happy with his progress and the things he is doing. So, after all the list... I took Ty to PT today. He is doing so well with this new place. He LOVES the swing there and we were working on his walking today with his AFO's. After we got them on the PT wanted to "try" the pediatric walker. She said that it usually takes kids a while to get use to them and to use them. We raised it up to the highest setting and set Tyler in. You will never guess what happened!!!! HE CRUISED CLEAR ACROSS THE ROOM. He did amazing. His left side of his body is a little less strong so we will be working on that but we have decided that for Ty and his mobility he is getting a walker. The PT doesn't think we will use it long, but if we do we do. I was so proud to see him walk. He has now exceeded EVERY expectation of the HORRIFIC Nurse practitioner that we had and he is continuing to do more than we could ask for. We are so proud of him.
4 comments:
Tyler is one more miracle that our family has been so blessed to have. How many other families can say they have witnessed so many true and honest miracles? We are ALL blessed to have Tyler.
Tyler truly is a miracle. Like Crys said, how many families can say they have witness so many true and honest miracles? We have had many between the our families! Miss you guys lots!!! Give Ty Ty lots and lots of loves from Aunt Nicky
I can't believe someone would actually say you were negative towards Tyler. They all just need to shut up and mind their own business
I don't see how anyone canyou say you are negative towards him or that youare hindering him in anyway!!!! You are so wonderul, optmistic,patient, loving, and I only know you online!!! not only are you blessed to be his mother, he is also blessed to have you fo his mommy!! Way to go Ty!! Keep mommy on her toes & running after you!! :)
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