Friday, June 27, 2008
Our life as we will know it...for now!
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!!!!
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15 comments:
Maria,
My sister is going through a similar situation with her son who is now almost eight (delayed speech, walking, social skills) You name it, they have done it. If you ever need advice or someone to talk to, she would be you gal. Hang in there and just take one day at a time.
Thanks so much! I would love to talk to your sister.
You are amazing parents! I hope everything works out wonderfully for you and your sweet little girls! I wanted to let you know that I'm making my blog private and would still love to keep in touch with you guys so if you want to email me at circexadie@hotmail.com and I will send you an invitation. CIRCE
Claire is a fighter and you guys are seeking the best help you can possibly find so I hope and pray for the best for you :)
You are amazing and keep a more positive attitude than I ever could. Hang in there!
We will be with you everystep of the way! We love little Claire. She certainly has no trouble with her bright eyes and smile. That girl can light up a room. And how fun to have Pocket in our family??! Can't wait to learn more baby sign.
Maria--I can't even imagine all the emotions you must feel. Thanks for sharing Claire's story with the blogging world. I truely think you guys are such wonderful and inspiring parents.
Maria - I don't want to say the wrong thing, but I don't want to say nothing, either! The words other people use to describe our children are never as important as the words we would use to describe them, or the words that Heavenly Father would use to describe them. Your words for Claire are far, far more important than any words any doctors can throw at you.
And if Claire is as stubborn as you say, then it sounds like her words for herself will be pretty amazing too!
Maria!!!
You're an inspiration to us all! I'm so sorry for these trials you're having; you have such a great attitude.
This is Krista by the way. We need to get together sometime when I come down to Utah! Your girls are so adorable, and way to go on the harp teaching thing. It seems like you have a great studio going. Amy told me you're like the Pres of Suzuki Harp in Utah or something! That is great. I really hope you're doing well! Our blog is www.conconfamily.blogspot.com and I would love to hear from you!
Well done, Maria. Remember the great saying "What at first may appear to be a sacrifice, may be the greatest investment you ever make." Go, Clairee, go!
Ti amo!
Dear Maria,
My heart is broken for the worry and concern your family is experiencing. One thing I know about you Maria, is that you will do everything you can for this little girl, that she will get the best care available. I know that you will love her with all your heart and that she will feel that. I know that you will pray and recieve inspiration on her behalf and that she will be the best that she can be, which if you think about it is all that any of us can hope for in this life, even though we pray and reach for perfection in the next. May heaven give you the faith and courage required and may little Claire be well and very well.. and better every day.
Lots of love..
Tiffany
Hey Maria and Kent it's Melissa (Hales). I got your blog through Krista. You guys have a beautiful family--I love your picture on the top of the blog. Our thoughts and prayers will be with you and little Claire as you continue to do what's best for her. I'm sure she knows and can feel how lucky she is to have such good parents.
Hey guys! Thanks for all your work with the reunion, amidst all that you have going on in your own life! It was so great to see you both and your beautiful little girls. Thank you for sharing Claire's story. You are such wonderful people and great parents for all your involvement in diagnosing and treating little Claire. I know you will continue to receive inspiration, just as you did with pockets! Hang in there. My prayers are with you guys. I would love to get together sometime too. Keep in touch!
Hi Maria,
I'm Julie's (Mama Fish's) sister, Jennie. I'm Josh's age and friends with Sarah. Mike is also our ENT. Julie told me about your little one. I know you are on an amazing journey. Some days it may seem clear and you have yourself pointed in the right direction and other days you may not know what step to take next.
We are in our 8th year of a our special needs journey and it has been that.... a journey. I can relate with all of you wrote of in your post. Even though our diagnosis is different, it sounds like some of our goals are the same - speech, coordination, physical therapy, OT, etc. We have also been going to PCMC rehab for speech and are starting to make great head way. Baby sign was the beginning for us and I have some great video resources for you if your interested. So much to say.... but probably not best to do it on a blog. :)
If your interested, please don't hesitate to call or e-mail. jendopp@hotmail.com
~best of luck.... Jennie Gustafson Dopp
I'm always amazed at what my friends endure and I get most amazed when they endure worries with their children. You're amazing! If anyone can keep a smile through hard times, it will be you!
Also, you've been tagged. I know you probably are too busy, but go to my page if you want to know more. Love ya!
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