Since having Isaac, being thankful has a whole new meaning. When you have a special needs child with a life limiting condition, your perspective changes drastically. I used say I was thankful for material things such as the car and the house. I wanted to be like "those people" who could buy anything they wanted. Although I'm grateful that I have a roof over my head and food to eat, the people I love mean more than anything to me now.
Exactly one year ago Isaac was a very sick little boy in the hospital.
Right now I'm thankful that we are not there today and that he's well and thriving. Yes, we have had many obstacles, but what's important is that he's HERE and he's HAPPY.
On Friday my almost 90 year old Grandfather had surgery to remove bleeding in the brain. This was a very risky surgery for someone his age so we didn't know how it would go. All morning I prayed and I was relieved when my Dad called me after the surgery to tell me that he was OK. He's currently recovering in the hospital now, so please continue to keep him in your prayers. I'm thankful for him because he's always so positive and has something good to say about everyone. Here's a picture of him with Isaac on Christmas 2008.
What are you thankful for?
Yesterday we took Isaac to Shriner's Hospital for routine X-rays. Usually in the past they just check his spine and hips and tell us to continue with therapy and stretches. This appointment was different. Isaac's hips don't look good and he's developing dysplasia.
According to the doctor, this is only going to get worse unless there's some kind of intervention. He talked about orthopedic surgery and also having Isaac wear a Spica cast for 6 weeks (which sounds more like 6 years). If you don't know what a Spica cast is, it's a body cast worn from the waste down. They showed us a demo....it doesn't look fun. I simply can't imagine making my sweet boy go through that. Luckily I was able to get a copy of his X-rays and then showed them to the PT when we came home. I will be doing much research on hips, therapy and the pros and cons of surgery. That's what us medical Mama's have to do before making major medical decisions! Sam and I agree that Isaac has been through enough in his little life and any kind of medical intervention is always determined by what's best for his quality of life. The dilemma is that if we don't have surgery and the Spica cast, his hips could get worse. In the long term he would become very stiff where it could be next to impossible to diaper him. Also with the dysplasia getting worse he could experience a lot of pain in the future. So much to think about, research and take in. There are many other storms going on lately in our lives, including the health of my Grandfather. It's interesting how God knows just what I need though. I haven't been to my Women's bible study group in awhile because I've been so busy, but for some reason I decided to go today. They were talking about the storms of life and then they played the song "You never let go." God never lets go no matter how difficult the storms of life are!
Isaac's wheelchair stroller has been a process. We borrowed this one for a short time and ordered it in June.
When insurance faxed paperwork with some important questions to get it approved, the PT was on summer break and didn't receive it. Now that we're starting the process again, they are asking questions such as if it's medically necessary for him to have a canopy. What? The PT is working with me on this and we are hoping to get it approved soon. Maybe he will have it by Christmas. Just maybe.......
Recently I was asked to share Isaac's story at 2 events this month. Since I have no experience speaking publicly or being in the spotlight, this was a little out of my comfort zone. The first event was at a conference about early intervention services where I was asked to share our story and talk about our experience with therapy the first 3 years. There were a few other Mom's of special needs children sharing their experiences too. Our situation was unique though because all of his therapies were home-based. Isaac's therapists were amazing and they were good about understanding that his health came first and therapy came second. Although I was grateful that they were able to come out to the house because of Isaac's health issues, he got very limited services. I hope that what I said at the conference made a difference and will help other parents get more home-based therapy for their children. After taking a deep breath, I was also asked to share our story for a conference about serving the family when a child is seriously ill. The child life specialist shared what I wrote along with some clips of Isaac with his family. I was happy to meet a Mom there who appreciated our story. She's just beginning her journey with a medically fragile child and the uncertainty of a rare disorder. I remember that place, it was such a unbelievably hard place. After the conference I started thinking about Isaac and his life today. I remember those first 2 years and how much I focused on his survival and how long he would be here with us. Now, even though he still has the tubes, I feel like he is thriving. Seeing him enjoying life, his people and his surroundings causes me focus more on how happy I am that he's just here having a good time.Isaac's having a good week, but still has these chronic ear infections going on. The ENT couldn't get him in sooner than December 27th to replace his ear tubes, but I'm trying to be a squeaky wheel about it. There's only so many times I want to add Cipro drops to the med schedule. Most of the time lately he doesn't need 02, but sometimes he gets congested and just needs a tiny amount during the day. That's OK though because he still looks cute in his new pajamas. 
A man on a mission!
The snow is going to continue to fall throughout the weekend. It will be interesting to see how many inches of snow we get by Monday! What can I say? Thanksgiving with the little guy was more than a Mom could ask for. We took him to my Dad's house and had a really good time. Everyone was happy to see him there and he got lots love and attention. We lost his glasses so he's been wearing his spare pair. I still think he looks cute in them, but the aqua ones are my favorite. Hopefully we can find them soon! Here are some pics of our day....
Playing with his favorite toy at my Dad's house.
Having a special moment with Mama.
Being goofy with Grandpa Billy! 
Snuggles with Grandma Jean (by this point he was tired and ready to go home!)
