Corbin got his go baby go car today! While it is just a loaner we are very excited for him to use it. The University of Delaware came up with the concept of the Go Baby Go! It has been shown that kids (like Corbin) who physically aren't able to explore their environment miss out on cognitive, social, and many other skills they learn through exploring. This will allow him to explore, chase after his sister, and learn cause and effect. When he pushes the button it goes. When he stops pushing the button it stops. Only bad part is it would be very difficult for him to steer at this point. We are going to be getting a work out.
We never had to show him how to make it go. He knew. He knew so well we have to work on how to stop :) I have never seen him that excited for that long. He was beaming, squealing and wanting more. He played for an hour in it. For Jon and I, this was like seeing our baby walk for the first time. It made me heart burst at the seams to see him so lit up and so excited. For us, today was huge. Here is the first of many videos of his cruising I'm sure!
Today was also huge because we started my permanent 4 day work week. Due to therapy and doctors appointments (as well as my guilt for not spending more one-on-one time with Corbin), I will only be working Mon-Thurs. Fridays I will work from home a bit and then devote the afternoons to Corbin and therapies. I am thankful my work is understanding of the circumstances. It is vital we continue supporting Corbin at a crucial point in his life. The more intervention we have now the better his outcomes. Today is a positive day!
And then the mad face because I made him quit driving the car so we could get groceries! Happy Thanksgiving everyone!
We got Corbin's latest CK results. His levels had been staying around 625-775. This one came in at 1200. A total blow. We had been optimistic that it had been the same. Wrong. Next Wednesday we will get blood drawn to test for a neuromuscular gene panel to test for mutations on 73 different genes I believe. Slim chances again of getting a specific diagnosis. We have to keep trying. God isn't supposed to give us more than we can handle. We are getting there. Every time we get optimistic and we see improvement we take another blow down. Keep reminding us of how perfect Corbin is and all the changes you see in him. When we see him daily they go unnoticed. You telling us the things you see helps us see them as well.
Keep praying for our little guy. Prayers have a way of making miracles happen.
Thank you all for your continued support. There is no way we could walk this path alone. It truly takes a village to raise a child and anyone who says different is crazy.
She is 6. My how time flies!! I remember it just like yesterday. It was a Tuesday night. I was overdue. I thought for sure this child would never enter the world. I checked into the hospital ready to get the show on the road. It was election night (Obama's first election...) so that was all that was on the tv. Tuesday came and went. The nurse promised me she would be here before her shift was over. Her shift came and went. Finally at 9:10 a.m. Wednesday morning our Hallie Michelle arrived weighing 7 lbs 10 oz and 21 inches long. She perfect. Seriously the most perfect baby ever. Nothing wrong, never fussed, slept, ate. She was so easy! I thought for sure this is how she would be forever...
Fast forward 6 years and I have seriously the most emotional, moody, temperamental, sassy, thoughtful, caring little girl in the world. She is every personality rolled into one little body. Hallie is the sweetest thing to her brother (even thought she mentioned she wished he would go away forever on Sunday... I know this isn't true). We went shopping Saturday and hadn't made it to Des Moines yet when she was telling me how much she missed Bubby (Corbin). I am so thankful for the relationship she has with her brother. I was worried about the age difference but I am so blessed. At the same time she can go from mild tempered to full blown diva quicker than you can blink. A simple request by me or Jon can spiral her into a child we don't even recognize. And then 10 minutes later she is doing something without us asking. She is definitely the princess of the family :)
Hallie was without a doubt a major surprise. She wasn't part of the plan... quite yet anyway :) I was 20 when I found out I was pregnant and a sophomore in college. I was terrified. God had a plan. I met with my professor and made a plan. A plan I would stick to. I would head home and finish out my degrees in Creston at the Buena Vista center. I would finish, and I would graduate with my class. After 2 long years, lots of tears and lots of faith from my friends and family I walked with my graduating class with my biggest fan cheering me on.
Being a single mom to a little girl was more difficult than I could have ever imagined. I am thankful I had an amazing support system to get me through the rough days, and an awesome little girl no matter what. Hallie definitely made finding the perfect man even more important. I wouldn't settle for mediocre because not only did I deserve better, but she did as well.
Jon came into our life at exactly the time we needed. Hallie was out of
the baby stage, she was potty trained, and life was good. I had just
finished up school and was very stable. He completed our little family.
He was the missing piece. Again, I am so blessed at how well they got
along and how well their relationship grew together. Most would never
guess he wasn't always with us because their relationship is so
incredibly strong.
I cannot wait to see where life takes this child (well I can - I am not ready for her to grow up!). She has so many qualities that will benefit her in life. I am so proud of the independence she has. (most days ha!) Teasing aside, she is a beautiful young lady and I couldn't imagine life without her! On to year 7!
Our little guy is continuing to improve. We are so proud of all he has done and accomplished. In his short life he has been poked, prodded, and picked on more than most kids. We have discussed our next steps again with the doctors. They all tell us we are doing everything right, therapy and stimulation is what will allow him to succeed.
We retested his CK level yesterday after therapy. It hadn't been tested in 6 months, and while they don't believe it will change much they need to verify. Our last genetic test made sure he didn't have any deletions or additions to his chromosomes. If the CK remains in the same area as prior testing, we are going to do a more in depth genetic test. This test is going to test for mutations in genes that would affect muscles. Since he is progressing and no new "symptoms" are showing up, we are trying anything as there is no clear direction on where to look.
Last month we visited with the pediatric developmental dr again. We truly enjoy our visits with him as he is very optimistic and tells us more of what he is doing versus what he isn't doing. He ensures we have all the resources that we need for Corbin to succeed. He is worried about the extensive therapy Corbin will continue to need and the length of time it may be required. We are working on a plan to continue to be able for Corbin to receive all the services he needs.
Some days are better than others as far as our mental stability with everything. Some days we are more optimistic than others. I know that sounds awful, but some days it is exhausting and discouraging to continue to try to help him gain the skills that he refuses to do. I have thought a lot about the unknown and the fact we still have no diagnosis and no reason for why his CK level is elevated and he is delayed. Here is what I have discovered.
I love my son 110% every day. He is perfect in every way. Most days I forget that he is delayed as he is just Corbin to me. Until I see those other perfect children and all their achievements. It is then I get discouraged. I have to continue to remember that Corbin will not catch up over night. We started therapy 5 1/2 months (he was 8 months old) ago. At that time Corbin could not roll over, would not even begin to sit up, wouldn't hold his bottle, wouldn't eat anything other than purees. We have come such a long way in those short months. Here is our latest video of working with him on how to get out of sitting without hurting his head :)
A big part of me wants a diagnosis to help explain to society why he doesn't fit their standards. At grocery stores or Wal-Mart or anywhere people are always telling us how adorable he is. It makes my heart melt and drop all at that same time. I know what the next dreaded question is. How old is he? I answer. I either get "Oh I bet he is walking all over and getting into everything! Not quite yet I respond." or "really? with a look of confusion." People don't understand when I try to say he has an undiagnosed delay. I wish I had that concrete answer to give. Why? I have no idea. I owe no explanation to them. I should be able to say no he isn't walking, he is on his own pace. He is still perfect. Please don't look at him and try to decide what is wrong with him. I hate the looks of people examining him for those little differences from him to his peers.
I hate that the main reason I want a diagnosis is for society because regardless what the diagnosis is our treatment plan probably won't change much. We were able to get Corbin into therapy and early access at 8 months old. We were able to start working on the treatment plan so early with the hope of him being able to develop to his full potential. I can't imagine where we would be with our the amazing team of doctors and therapists we have on our side.
There is a site that through Facebook (thanks Chris!) I discovered. It is called themighty.com. It is full of parents' testimonials and stories about their children and their struggles and successes. It is nice to know that even though Corbin isn't diagnosed with anything and his circumstances may not be a severe as others that there are people with the same concerns, worries, and anxieties we are facing. The unknown can be the scariest thing. One mom blogs about her daughter who is also undiagnosed. Here website is undiagnosedbutokay.com. How true!! This blog was one I could truly relate to. I am thankful for a new resource for me to relate with complete strangers and renew my hope and faith in our Corbin Jon.
Corbin is growing so fast! Even daycare has been noticing. I took a video of him tonight playing hide and seek with me behind the phone. He rubbing of the face/ears should have been a sign he was getting tired. Poor kid! Self feeding is going fabulous. He is even getting the hang of drinking from the sippy while sitting.
Some of you may have heard me talk about Corbin getting a "racecar". No Jon hasn't lost it. ;) Early Access (our in home therapy... aea for kids under 3 I believe) talked to us about a program called Go Baby Go based from the University of Delaware. It allows kids who aren't able to explore their environment and get the stimulation needed to develop a way to have those experiences. Here is the link of you want to read more. They said his will either be Mater or Lightning. We are excited to see how he responds and reacts to this!
This is one type. It appears they are all slightly different based on the kid. The steering wheel becomes one big red button so all the child has to do is push that and they are free to explore (minus the need for someone to help steer or remove them from a wall they plowed into)!
We are loving Corbin's new way of "crawling". He has used a lot of thought to figure out how to get where he wants to go. We are trying to teach him a streamlined version to make him a little more efficient. Hopefully I can get this on video for you soon!
