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....
Oh, Ethan my angel, my first born (this is the title he gave himself and he recites it about 10 times a day)too funny! Ethan born on 11/12 weighed 7 pounds 7 ounces and 19 3/4 inches long, he was 3 weeks early! And Tuesday HE LOST HIS FIRST TOOTH!! Tuesday WAS A GREAT DAY!!!
Khloe, Miss Khloe she i posing in a newborn bassinet at the hospital, she layed here almost a year ago herself, My she has grown.LOL She was born on 5/16/08 and she weighed 5 pounds 14 ounces and 20 inches long, and was 4 weeks early.... This week, she is saying HI and blowing kisses!!!!
Just had to show off alllllll the kids, and with Kinlee being born this week, it has made me happy that my husband and I still agree, we still want more kids! So as soon as he gets home from Iraq we will ( God willing) have another baby. I know Ill have to wait 2 more years, but I'm so happy with that choice, I hope by then Brayden will be in a good school routine, according to Ethan he will be driving a car,LOL and who knows what all will be going on. But I can tell you no matter what happens in this world, I LOVE being a mother, to all the babies.
