Thirty One by LeighAnne

Wednesday, May 27, 2009

The Story of Joshua Ace Gregory

So I will just start off from the beginning of Ace's story. After AliPaige was born Josh and I decided NOT to have anymore children. And since I had already stretched out my body, suffered through labor and had two children he would do his part for the family. WELL in July of 2006 Josh was going to " do his part" but instead he went fishing. Which brings me to August 2006. I had not noticed that I had missed something that month and then in September I began to think" HMMMM " So I got a test and it turned positive real quick. SO I took three more just in case but they all showed the same. I was a little devastated. You see my first two pregnancies were not exactly the best in the world and after having 2 babies pre-mature I was kinda scared. Then in October of 2006 I " lost " my job. Long story. And that really made matters worse. All I could think is how can I support this new baby I'm bringing into the world and we just lost a third of our income. But NEVER question God. He knew exactly what I needed. You see Ace's pregnancy was the best out of three. And I never could work now with what all I have to deal with. At 22 week I began going weekly to the doctor to get shots to PREVENT pre-term labor. BUT they stopped those at 34 weeks. See picture below of me at 32 weeks.
Well my body must not have like the fact that they stopped because I went into labor and delivered Mr. Joshua Ace Gregory 5 weeks early. We didn't know if he was a boy or a girl and after Dr. Allen got him out all I could think of is " Is my baby okay" He wasn't crying like a normal baby and when Dr. Allen showed him to me he looked so tiny. But Dr.Allen played calm and yelled " somebody tell her what she has" And poor Josh had to put down the camera to look. And " IT'S A BOY!!!" But when it was time to roll up out of the operating room I knew something wasn't right. The NICU team was working on Ace and they had to bag him because he was unable to breathe. It terrified me. Once I got in my room I was unable to see him because of my aneshtesia. Later that day when I was able to go see him I found out that he had Premature Lungs, Heart concerns and some normal preemie problems. He had tubes EVERYWHERE it seemed like. He looked so little. Not to mention his neighbor in the NICU was a whopping 10lbs. So 5lb 12 oz Ace looked even more smaller.

You can see his chest pulling in to breath. Poor little fella,

This was one of his actual feedings. You can see the nurse pushing his " dinner" all of .08 mls into his feeding tube.

So little and soo sweet.

Ace and his little teddy bear.

He moved on up and got those tubes out of his nose.

This was Easter. In the NICU. Sad but special never the less.

Me and my sweet little man.

Daddy and Ace
After Ace was born he spent the first 6 days on the C-pap ventilator because he couldn't breathe on his own due to the premature lungs. This also caused him to have heart rate drops.And he also had a heart murmur. Not too much to worry about though it was a common one. Around day 10 he began to vomit yellow greenish stuff and when that happened they determined he had a serious infection in his intestines. This is NOT a great thing but luckily they caught it early, started him on antibiotics and he was able to get back to full feed within 10 days. After 21 days in he NICU he was able to come home. And what a joyous day it was. It was Friday April, 13th 2006. I will never see another Friday the 13th as a bad sign for anything.
Fast forward a little bit. He continued to have tummy troubles and we have a Gastrointerologist and he was able to get all his problems under control. His heart murmur was kept under the care of a cardiologist in B'ham as well. He also has a urologist, for a very minor problem which we wont even go into detail about.
But when he was 3 months old at his regular pediatrician's check up they noticed he wasn't exactly developing his motor skills and also his developmental ones either. So they just wanted to monitor them and for his 6 month , 9 month, 12 month check ups they all turned out to be the same as the first. He was very behind on almost all of his skills. Except walking. So when he turned 15months old we had him tested at the Alabama Institute for the Deaf and Blind. We were originally going just for speech but when I gt there they do an over all evaluation. He was very behind for his age in EVERY EVALUATION that they did. It was a total of 7 or 8. The only thing he passed on was his physical skills. And the ONLY reason he passed was because he was walking. She encouraged us to seek physical therapy on our own. And she also pushed to have him tested for Cerebral Palsy. At first I was completely shocked that she would even say that. Cause my child was normal. Nothing was wrong with him he's just a little slow. That's all. But after we began our therapies and saw more and more doctors it was an eye opener that just maybe MY " normal " child just might not be so normal after all. In November we saw a Neurologist in Huntsville and he confirmed that Ace did in fact have Cerebral Palsy. And blood work confirmed it. But luckily he tested negative for muscular dystrophy. But even so I looked at him and thought " how could my child have this" . You see just because they have this disorder it doesn't mean it's always the WORST CASE SCENARIO! He can walk and he can do most things that a kid his age can do. But at that time he was still very behind and needed physical, speech, and special instruction ( motor, cognitive, ect..) therapy. So we have been in therapy every since September 2008. When he began he could only say 2 or 3 words and he had a very hard time conveying what he needed or wanted to us. He also had some pretty tough problems with his legs. Since therapy we have improved in so many ways it's unbelievable. We had our Speech Therapist out yesterday and she re-tested him because he is doing so well AND he scored a whopping 60% better and is on the level of a 2 yr old. This means that he is only 2 months behind and give he was early it pretty much puts him right on target. So hopefully we will get to discontinue speech therapy. I am just waiting to see what the final word is. Also he is improving in his walking and his pain problems in his legs are decreasing. He still does however have some fine motor skills that are lagging and I am constantly wondering just how much he does understand what we tell him. I mean I don't know exactly where he is mentally. And the Neurologist did say that we may not know until it's time to get him in school. But as for today I see such a vibrant and beautiful little boy who is so full of life it amazes me. I cannot imagine my life without him. He has taught me so much in such a short little life span it's unreal. He is a blessing that I never could have dreamed of. I am looking forward to the day when we go to the doctor and he says " you know I think we made a mistake. He is just as normal as they come". Ace is one of my life's little surprises that changed who I am and made me a better person. He has shown me strength that I didn't know I had , faith that I needed, and brought me closer to God in the process. I am so thankful for my little " unexpected blessing " I call Joshua Ace Gregory.
Here are a few pictures of him I took today....

Yes he's chewing on a pencil...
a little over exposed. But still a cutie

up close and personal

so sweet
Joshua Ace Gregory

Hope you all have a blessed weekend.

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