So once again it has been awhile since I have written and I am reminded about my journal keeping. I am not great at that and am not really great at blogging either. It is still fun and a good outlet.:)
Kent and I have had some crazy things happen in our lives the past few months and I have debated about sharing it with the blogging world. Then my sister E told me about another blog that has helped us so much and she said we should share in case it can help others. So I will fill you in and hopefully this will all make sense!
In January I took my second little girl Claire to a doctor to get a second opinion. She had not ever really used her left hand and our first ped. kept telling me that she was just right handed. Since I am not a doctor I believed him and went on with my life. He told me this at the 6, 9 and 12 month visits. After the 12 month visit I just didn't feel right, so that is why we got a second opinion. Sarah and Mike told us of a ped to go to and he was awesome! He said that it didn't seem right and ordered an MRI. I was totally freaked out because doing an MRI on a baby ment they needed to sedate her. That was my biggest concern at the time! Little did I know!:)
So on February 12 our lives changed as we knew it. Claire was diagnosed with Porencephaly and left sided hemi-paresis. I know, a lot of big words and things I totally didn't know were possible! Bascially they found that she had a rather large hole in the right side of her brain and because of that the left side of her body was half paralysed. That is why she never used her left hand!
So since March we have been doing physical and occupational therapy and in those sessions they have discovered that the hand is not the only thing affected by this brain disorder. Her left leg as well as her entire left side of her trunk is weak as well. So we are now working with Claire every day to try and help her learn to walk as well as learn to use her left hand. Along the way I also discovered that she LOVED horses. This is where I get slightly crazy!:) We decided to start hippotherapy which is occupation and physical therapy done on horses. That is where Pocket came into our lives. I felt very strongly that we needed to buy Pocket and use him with Claire as well as Emma. That is the other side of my story. How do you balance one child who has special needs without not paying as much attention to the other child? I am still trying to figure this one out. So Emma started her own riding lessons and Claire started hippotherapy. She has been doing pretty good with all her therapy and loves the horse therapy. Kent and I had a handle on our new life and felt like we were going to be OK.
Then we went to her 18 mo visit and our new ped. told us that we needed to go in for a speech evaluation. Like the MRI I had no inclination that there was somthing wrong but thay maybe we would need to do some speech therapy and work on the sounds and everything. Well the speech pathalogist at the Primary Children's Rehab Center diagnosed Claire with Developmental Speech Apraxia. Again, I felt like this was another moment like Feb 12 where I just went through the motions and later on realized what she was saying. Apraxia is a motor speech disorder where the brain can't send the signals to the mouth to make the movements needed to speak! So we are now coming to grips that our daughter might not be able to speak. She might and we are hoping that she will but are preparing ourselves for the possibility that she might not. We are starting baby signing classes next week as well as have a renewed sense of need to get her left hand to work as she will need that hand to sign. Isn't amazing how much everything in the body and mind interact with each other?!
So we don't know really where we are headed! We wish there was a booklet or someone to tell us exactly what the next step will be or when the next thing that she can't do will come to our attention but I do know this...that we are not alone! We have been so deeply touched by the outpouring of love from our families and friends! We have also realized that we have been so blessed with all that we have. That Claire is a fighter and that her personality is such that she will not let this stop her so we have to take her cue and follow suit. We have also realized that the Lord know us personally. He know what we are going through and that he will make sure we have what we need at the time we need it to help us. It has really been amazing how much we know this and rely on it daily!
So this is our life as we are trying to know and understand it. We are just trying to have the patience to realize that we can't figure it all out now and that we will have to wait!
I just wanted to let you know that the blog that Liz told us about that has helped me keep it all in prespective is called www.charliecooper.blogspot.com.
Thanks to everyone! We love you all!!!!
