A THANKFUL HEART- Stif Person and Sensory Disorders-another post all over the place-are you suprised?

Earlier tonight I was reading a sweet blog about a family that has lost their 8 month old baby boy, a very healthy little boy, and now they are looking for answers and my heart breaks for that family. Many of you know that I went on bed rest while I was pregnant with Brayden, started contracting early, was having alot of complications and due to my high blood pressure I was put to bed, with early bleeding at 17 weeks, the doctor felt certain that I would miscarry I remember that Sunday night waiting for Monday morning to come, for me and Darin to go to the doctor to confirm that I was probably miscarrying, as we laid in bed praying and shaking with fear, although I had not met that baby that was growing inside of me, I was soo in love with the fact that I was pregnant with another child, Ethan was going to have a sibling and we knew my husband was leaving for Iraq very soon, and with this new baby, I would have a piece of Darin to hold in my arms, I knew that if I was loosing my baby it wasn't that far along and we could always have more babies, but me being selfish I wanted this baby... So we went to the ultrasound clinic, poor Darin was in and out of the bathroom he was so sick, we had gotten so nervous we had made our self sick, we waiting in there that morning in the waiting room for over an hour, I remember praying every few seconds, I didn't know how I was going to handle looking at that screen, and confirming that we had miscarried, after waiting, we went back and the moment they touched my belly, we saw a heartbeat! I don't think the two of us have ever cried so much.. The Radiologist, said that the baby was perfect and couldn't believe we were having problems, and said although it was a little earlier then normal for the "ultrasound" they could tell the sex, and wanted to know if we wanted to know--- yeah!!! although at that moment I really didn't care either way-- our baby was alive... It was a boy... As weeks went on I had more and more contractions going to the hospital every Monday, Thursday, and Friday other then that I was at home in bed, trying to take care of a 2 yr old, and my husband was working 90 miles away but was driving home every night...What a long story this has turned into.. I remember at 28 weeks we went into labor again and they were able to stop it this time, I was glad remembering he was so tiny, from the ultrasound and things would not be good if I delivered so I continued on with all my bed rest, we delayed our baby shower pretty scared of what was going to happen, Finally after i got to a safer 32 week time I decided we could go on and do the nursery, and at 34 weeks we did have a wonderful baby shower on that Sunday and I finally had him on that next Saturday and being put in the hospital on that Friday and being observed, we knew that at that point he had a better survival rate in the outside world better then inside I was at stroke levels and starting to have problems, and for both of our safety he had to come on. We had a very difficult delivery his heart stopped several times , they had to do CPR once he was delivered, he was an angel. He came home with little problems the normal preemie stuff, his biggest problem he could not suck. We had lots of problems with that and him loosing weight. He was born in Oct. and Darin left for Iraq in Nov. he was allowed to stay home from deployment due to the fact I was such High Risk. And in Dec. is when we started noticing Brayden was not acting right he had seizers, and then his body was sooo tight, he was always drawn up into a ball, he never opened his hands, never looked around never stretched his legs and to change a diaper we had to pull his legs so hard to get them out far enough to change him.

After talking with our PCP they really thought with the trauma at birth that he had cerebral palsy. But after meeting with the neurologist at Vanderbilt Children's. He came right in and diagnosed Brayden with Stiff Person Syndrome and had him to several meds at 3 months Brayden was taking pills that melted, he took them 3 times a day just to relax a little. The doctors don't really know the entire prognosis, its not a common disease, when I went to to the doctor they had set him up with Ester Seals and an at home Therapy service he was falling behind, not that we cared, we don't really compare him to "charts" each child is diff rent.... But we wanted him comfortable, and out of the fetal position. I didn't want my baby to hurt. and to know that he lives ever day in pain... breaks my heart. That my son doesn't even know he is in pain, for he has lived with it everyday! And all that I can say about Brayden is he is soo determined, he is to determined to be like his brother, and he tries so hard. The doctors and therapist told us he would not walk, and although he did wear leg braces my baby walks, runs, climbs, he does it all, Now not to say that he really dont get tired, he cant walk like an every day 3 year old could, and if its cold weather, well, he hurts alot more.. You know, I'M going to elaborate more in another post on "What is Stiff Person?" but tonight this post has been in my draft section for almost a month, and i really want it posted so you know how THANKFUL i am, and how proud I am of Brayden.

Not only does he have stiff person syndrome, and developmentally delayed, he has sensory integration disorder, he will be going for more in depth study for autism, they feel he is on the spectrum, and people I am fine with that, I love autistic children, and we love special needs children, as a matter of fact after we have one more bio child we plan to adopt another special needs child, so we love them so no one get offended when I say this,,, we wanted to wait and have Brayden tested for autism after the age of 3, when I talked to the teachers of his class, the Behavioral clinic at Vandy and others, they say its better after they are 3, we had a few doctors that wanted to go on and Label Brayden as autistic, and I feel that people are so quick now to "Label" kids and when they are labled often times they are looked at differently, If a child don't pay attention in school--- he must have ADD - put him on meds, instead of perhaps the child is HYPER. Medicine is great, and please know that we would not be where we are today if we didn't have the excellent medical attention that we have, and we have been in therapy since he was 3 months old, so we have been treating him, not like we have neglected him or anything.. we want him to have the best life, and Ill do anything to make that happen. Moving on...
The above picture is a sensory blanket, to help Brayden know where he is in space, he feels very comfortable when in this blanket, he went for a few months without making a sound and one day his Occupational Therapist put him in this , and he started"Talking" so I think he feels very safe.

Another milestone he is working on is getting off the ground, he has had large fears of this but now, with alot of work, he is doing better.

Yes he actually climbed the wall and jumped ( or forcefully dragged) down but he loved it once it was over... LOL

Texture - is another thing he has to over come so they will get him like this in a diaper and make him play in shaving cream, this was a challenge but he is getting better

And climbing in between these, he is still leery, he is really unsure where he is.
I know this is a long post and trust me I'm going to do more post( I Know you cant wait) on Stiff Person, and sensory integration, i want people to be aware of what our kids go thru, and how proud and thankful I am to be a mommy to a special little angel....