My biggest FEAR!

I know most people fear death or losing a loved one. I faced the second a year and a half ago and even though it was terribly painful to go through I know she is in a much better place than I am and that I will see her again. I am not afraid of death but of dying. I don't want to suffer but I know when I am gone I will be gracing the streets of Heaven with all the loved ones who have passed before me. That's why those are not my biggest fears. Today I have been thinking back to when I found out I was pregnant with Ace. And for more on that story see here ( The story of Ace ). And soon after I had Ace he had so many troubles that scared me and I had so many " fears" of the unknown that may happen with my child. Then a year ago Ace collapsed in pain, began to run a high fever, couldn't walk, and was in the hospital and there were no answers. But a few short weeks later we were given the news. Cerebral Palsy. As hard as it was for me to believe that could possibly be the case I knew in my heart it was true. And The Ace's purpose in my life grew even more. Shortly before I got the news our family became a part of a church that now I never could imagine my life without. I began to look at my life in a different way. Not just as a mother, wife, daughter, sister, friend or anything else but as a CHILD OF GOD. And I realized that God gave me Ace for more reasons than to just care for a child. I gave my life as well as the lives of my children to HIM. And I began to pray like I should and not pray for what I wanted in life. I prayed that God would let me care for this child and whatever His will was that He would show me how to deal with a "sick" child. Ace was perfect to Him so why couldn't he be perfect to the world. Once I let go of trying to fix the diagnosis myself and let God take the drivers seat all the answers fell into place. Ace started therapy and began to improve and shine like any 2 year old would.
Now my biggest fear. When we got the diagnosis our Neurologist told us that with Ace's case MOST kids with the type of Cerebral Palsy he had they weren't diagnosed until the ages 2-4. And he could either get better or worse. And for the past 10 months he has surpassed any milestone that I thought he would. BUT last Wednesday we had Physical Therapy and the therapist noticed that Ace's right leg ( always the one with the problem) was beginning to scissor in. It is beginning to cross over in front of the left one when he walks. This is most likely the reason why he is having so many accidents. When he walks his right foot is turned in slightly, he has a slight bow to his bones, and now this. Even though it is all mild it is still causing some pretty bad battle wounds to little Ace's head and body when he falls. My biggest fear was that his condition would worsen and now it is. I am so afraid of what the worst will be and what he will face. He is constantly falling. It's only 11:45 am and we have already had three falls and bumps to the head. This is all day long every day. He will cry every time he trips and I can only assume it's because 9 times out of 10 he gets a bump and bruise and he thinks it's fixing to hurt. So what do I do. I pray . I Pray that the God who has been so blessing to us so far will give the doctors the answers to help correct this problem before it gets any worse. A week from today we will travel to Huntsville to a new Orthopedist and I hope he will give us encouraging news. I know Ace could be so much worse than he is but as a parent any condition even a cold is something you don't want your kids to have to deal with. And when it's something you can't just run to the drug store and buy a medicine that will help it really upsets you. It scares you because it's out of our hands and in someone else's. I know this is just one of our trials and I know there is a reason but I pray that my little Ace doesn't suffer from this. I know he will have to get corrective inserts for the turning of his foot and he won't like it but I would rather him be aggravated than in pain. So please if you have just a extra second at night when you pray add my little man. I would be so grateful. Here are a few pictures from the past two weeks. I know I haven't been keeping up like I should it's just been a little crazy around here.

Ace and Brady in Sunday School.

Me and Ace.

Of all the pictures to be the clearest he had a drink in his face.

Ace at his cousin Chances birthday.

I know when it's all said and done that I gave Ace the best of what I could and GOD blessed me with Ace to show me the true meaning of life. I always want what's best for my kids and don't ever want to see them hurt or struggle in life. I know all things are a part of God's plan and that is why I believe things happen for a reason. Sometimes we see why sooner than others and I just pray that with this little bump in the road we can over come it sooner than later. I love my dear little Ace and I so don't want to see him struggle any more than he has. He is so precious to me and I know God has a great plan for him.

~LeighAnne~

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.
LeighAnne