Thirty One by LeighAnne

Thursday, September 24, 2009

Praises and Prayers

After the Last blog our week went WAYYYYY down hill. Ace had his yearly evaluation from ( AIDB )Alabama Institute for the Deaf and Blind that Wednesday. I got really upset afterwards and ended up in the ER in Carrollton with a headache. Then went back the next morning still sick as a dog and no relief for the headache. THEN after that shot I still had no relief I called my neurologist he told me to go to Med Center North and get IV fluids and meds. So I went there and that doctor sent me back to the hospital to be admitted. So after a total of 3 doctor visits in less than 24 hours I was back where I started. And I stayed there til Saturday. Which was awful. I mean AWFULLLL. Being in pain is horrible and when it hurts so bad you can't rest is even worse. And to top it off the nurses there were in no hurry to help. It took two hours to get medicine one time, an hour another, and it was never there any sooner than 30 minutes after I requested it. Which just made everything worse. Cause when you have a headache so bad that every movement makes you want to vomit time is of the essence. Finally after I got a good 4 hours of sleep in a row the medicine worked. I got home in enough time to go to my Secret Sister Party at church. It was nice even though I felt really exhausted.
I do have WONDERFULL news. Have you ever questioned prayer? I mean really do you pray about something then try to fix it yourself or pray about it and wonder if God heard you? Well if you have let me tell you a little story. If you can remember all the issues with Ace's legs from the last blog keep them in mind. On this past Monday we ( me, Josh, and Ace) took a 3 1/2 hour drive in the pouring rain to Huntsville. Ace had an appointment with the Orthopaedist. And I had already prepared myself for every possible news the doctor could tell me. I prayed for God to take care of Ace and what ever His will be done. And if Ace needed any medical intervention to help his issues I asked for God to give me the strength to make it through it. After I prayed I felt at peace. And I was ready . I mean really ready. I had phone numbers ready to call when we left to set up appointments for just about what ever the doctor recommended. After Dr. Buckley watched Ace walk with shoes on, walk without shoes, and walk some more, x-rays, and a physical exam he left and it took a while for him to come back but when he did I honestly wasn't expecting what he said. He came in put up his x-rays and said simply " I see nothing wrong with him." It took me a minute to think " Okay he had, spasctisity, scissoring of the right leg, turning of the foot, ankle rolling, and bowing of the tibia" And he couldn't find anything wrong. He said " The right foot is pre-maturely turning inward " and this is the only thing that Ace is showing any issues with. He said all kids feet will turn in at age 4 and outgrow this by age 6. So what about all the other things you ask. God took care of them . Yeah that's what happened. When I prayed I had FAITH. I knew God would take care of my child. And he did. Ace's legs are just fine. He isn't scissoring any more and it was obvious even to the AIDB lady when she did her evaluation, no ankle rolling, and the most miraculous one is NO BOWING OF THE TIBIA bone. After Ace had physical therapy Amy showed me his leg and it was bowed out. I mean you could see it. And I guess I just paid no attention to it after that. Well after the x-rays when the doctor showed me them I had to look at Ace's leg and it looked just like the left one. It had a slight bow but not anymore. So next time when you are praying have a little faith when you do. Matthew 17:20 says " I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, " Move from here to there," and it would move. Nothing would be impossible.".
Although I will not be moving mountains I know God heard and answered my prayers.

Okay now for the AIDB report. This Institute comes out and gives Ace special instructions therapy every month for social emotional, cognitive, adaptive, motor, and one more that I can't think of right off the top of my head. To qualify for these services the child has to be more than 25% delayed in at least 3 of these areas. Well after she scored him she said he was more than 25% behind in 3 areas and 24% in another so he really only passed in one category and in that one he was 5 months ahead. She said he is very smart for his age ( Gets that from his mama) but he is behind up to 16 months for is age in the others. The one he is the most behind on is his social emotional mentality. At this age most kids are able to pay well with others, they can be easily separated from their parent in a FAMILIAR setting, likes people, does " pretend" playing, they are bold and confident, likes people, can share, ect. Well not Ace. But even after the score was given and she went over what Ace will have to do this year I was okay. UNTIL she handed me the " Handbook for Alabama's Children with DISABILITIES". That is when my heart sank and I began to block out everything else she said. And she noticed it. I told her it wasn't the fact that he was behind because I knew that; It was the fact that he was considered disabled. I knew he had cerebral palsy, I knew he was going to have issues, but I never labeled him as disabled. I couldn't put that on my child. That is when I had to re-think everything I had been doing. Yes I baby him ( he's my baby) BUT I do treat him as a 4 yr old along with AliPaige. But he could process it. That's why he gets so frustrated. But I know God isn't done with him yet. I am not afraid of the challenges he will face because we will do our very best to give him every option to do his best. He will not be the perfect child or even the normal one for his age but you know what as long as he gives 100% of himself I am happy with that. My only issue is what criticism he will face growing up with this label. I absolutely cannot stand to hear or see someone use the word retarded. Because the definition of that is- a condition in which mental development is slow or delayed. So you know what YEAH my son is retarded. I wish that word meant- a condition of IGNORANCE! Because the people that use that word like they do are the one who has issues. I can only hope that Ace will have confidence enough to brush it off if anyone ever comes at him with such ignorance. I pray he will be strong enough to tell them in God's eyes " I am perfect." That is what bothered me so much about his evaluation. It was just a label. And I know that I can't put that label on him even if it is what it is. He is still the same Ace that he was before he was tested. He hasn't progressed any in the past year in the social emotional development and not much more in a few other areas but this is my plea. Please pray for Ace to get every benefit possible from the therapy he will get from AIDB and then from the school system beginning in March when he turns three.
God places people in our lives when we are faced trials. He shows up when we need him. If he can't be here physically with us he will give us someone to help us through. I have learned this. It's up to us to turn to them or turn away and struggle. One of the people God placed in my path this year sent me an e-mail that I didn't get until AFTER Ace's doctor appointment on Monday. Which shows me even more proof of my faith. (Along with a few pictures )I want to share it with you as I end this blog post.
.........I once heard about this man who God took to heaven and he was looking down on earth. He saw these streams of light coming up toward heaven, but there were some that were shooting off like fireworks and coming right up before the throne of God. He asked, what are those lights and what are those that are coming up so quickly? The angel told him, well those are people's prayers as they ascend toward heaven, but the ones that shoot up so quickly are those of a mother praying for her child. They are the most heartfelt and they soar through the heavenlies and go directly to the throne room and reach the Father's heart immediately.

Ace doing his little project.
Ace and AliPaige BEFORE the flu shot

Just passing the time

My little sweetness.

Still happy. but it was short lived.
I hope everyone has a WONDERFUL weekend.

Monday, September 14, 2009

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.