Saturday, November 20, 2010

Thanksgiving and the Family

Oh My how I love Thanksgiving! It might be might favorite. don't get me wrong I LOVE Christmas but there is just something relaxed about thanksgiving to me. It is all the family togetherness and none of the gift-giving stress. My favorite part is that my Aunt Sarah and her family will be here like they have been for as long as I can remember. They make the trek down from NC and stay for several days. I LOVE getting to spend time with them.

I wanted to also make a very special request for a new friend. I have met some really awesome people during this whole process of the SDR surgery. Some in real life and some are Internet friends that I hope to meet one day. Well my new friend is one of those new friends. He son Cliff will be having the SDR surgery this coming up week. I have been praying for this family for awhile now but wanted to extend that prayer request. We know that God is in control but I wanted to ask for all of you to please pray that the doctors, nurses and everyone that will be involved in Cliff's care is under a blanket of prayer. Please pray that Cliff's mommy, daddy and family will be rested and feel at peace during the surgery. And of course please pray that Cliff will be calm and have a quick and smooth recovery after surgery.

As far as James news. Dr Park was very happy with were he was in his revovery. Dr. Park felt that James was right on track and in some points was a little a head. He was pleased with his lever of strength and his ability to get up into tall kneeling by himself. James showed them all how well he walking in his walker with and without braces. He also showed how we are working on getting him into using his canes. Dr. Park told us that he sees James being able to move from the walker to the canes very soon. James hips are better than pre-op! We were excited to hear such good reports.

There are a few concerns that Dr. Park adressed with us. James is having what is called Tibleal torsion. This means that from his knee to his foot there is a twisting. His left foot is turning in. We thought it was his hip causing his but we now know that it is because of the TT. This is not the best news and could mean that around 12 or 13 James will have to have this corrected. The plan of action for this is to work on therapy activities that support corrected positioning. we have time and James being so young on our side. Right now the bone is not twisted but the muscles are trying to twist it. We are just going to do our best to correct it without surgery. Concern #2 is James' heel cord on his left leg. When you dont walk and naturally stretch out your hamstring and heelcord they become too short as you grow. This is what has happened. So you see walking is not all just about walking. It affects so many other parts of your body. his right foot isnt too ba but his left heelcord is also contributing to the twisting of the leg as well. The plan of action for this is night time stretching int he form of braces that James will sleep in. Not too excited about that, but we will do whatever we have to. I dont want James toe walking since that is so very bad for that heelcord and the ability for James bones to grow correctly. We will do the braces for a year and then when we go back to see Dr. Park we will talk about if James needs Heelcrod lenghtening. Dr. Park think that he will but the good thing about having had the SDR we will be able to do a less invasive proceedure for this. In fact we should be able to do a out patient procedure that St. Louis does. That is pretty much all the medical info that we learned on our trip. It was a short and sweet trip but a good one!!

Thursday, November 4, 2010

Ortho Update

First I wanted to give a PreSchool update on James. I am going off what his teacher tells me and from the notes that I am given. I know that drop off has been great. He doesnt cry at all when I drop him off and the other kids usually say "Its James!" so I think he is making some good friends. Tuesday was a rough day I think. His teacher's aid said that he cried a lot. I think a lot of that was the fact that we started an hour of PT during school.

I know that the PT the school is using is a contract PT. I am not sure if she has been trained in pediatrics because from her notes she says that James is not tolerant of PT. And if you have been reading about James for very long you know that he works harder than any ADULT I have ever know much less a toddler. But I just climbed the hill of getting him a hour of PT in school, so i have to pick my battles for right now. I am not very happy with the therapist and the notes she has been writing me. It just seems like she isnt very willing to learn about James and what motivates him. It is frustrating for me and I KNOW it has to be frustrating for James. i have worked so hard to make PT fun that I am afraid she is messing that up. I mean I am in PT with James for hours EVERYDAY of the week, so I know that it is hard work to keep a 3 year old motivated. I am not new to this rodeo, but I dont think my experience is wanted.

I am glad that his teacher seems to be picking up where the PT is lacking. She is very willing to listen to me and not push my concerns and suggestions aside. I am the first to say that I hate being "that" mom but if it means giving my James the best chance in life to walk and be independent then I dont mind stepping on a few toes. I just hope it gets easier but if our life holds true to this pattern I can forget that ;-) I am researching getting an advocate but right now we have such a great teacher that I think she will help me get James what he needs. Today I was told was a wonderful day. He laughed and smiled a lot. He didnt cry once. I am glad they are getting so see the sweet James as well.

I picked James up from school a littler early today because he had his 6 month check with Dr. B his Pediatric Orthopedic Dr. Usually this in an appointment that has lots of tears because it has always been such a painful exam and James HATE getting x-rays done. BUT the super cool thing I had forgotten was that post-surgery James doesn't have the pain getting checked out now :-) What a wonderful change that was. He let the Dr. moves his legs around ( and he could) and he even walked for him. He didnt even cry when he had his x-rays done. WOW being pain free is a wonderful thing!!

Dr. B took a look at James hip that has been going in and out of socket. The bad news is it hasnt changed since before surgery....the GOOD news is that is hasnt changed since surgery . We just have to take the good and roll with is. His hip is unchanged. I am curious to see what Dr. Park thinks about that. Dr. B doesnt think it is causing any pain and I dont either. It does pop but James doesnt seem to care at all when it does that. He also talked about James tibial torsion that he has. This means James foot is twisting in from his knee. It will eventually cause bone deformity but right now there is nothing we can do about it because he is growing at such a rapid rate it would do any good to fix it now. I am not going to borrow trouble. We will just put what I can not change on the back burner for now. Dr. B thought that James looked wonderful. He loved James walking so well. I liked that the only tears that were shed were when James couldn't stay and play with the "girls" ( nurses that were loving on James)

Next week we will be headed up to St. Louis. I am very excited about finding out what Dr. Park and the PT have to say about James' progress. I hope they will be pleased with how he has done. I know that we certainly are!!

Tuesday, November 2, 2010

The view from here

Sometimes I am asked how I manage everything in my day. Can I be honest with you here on my blog?

I dont know!

Sometimes when the day is over and I finally sit down, I wonder myself how I fit all the "stuff" in one day. But we do and that is our life right now. I try my best to do it with as much grace and I can muster but sometimes I dont do so well. I know that can be short and blunt with those around me. I hope that I make up for it on the days that I am myself.

Its just that sometimes my view is clouded with therapists, IEP's, doctor appointments, medical bills and just STUFF of life with a child that has special needs. I know that I forget to look up from that specific view in times stress. But when I do I can see that the sights are pretty good from here too. I wanted to share a few positives of life with James so that you know that I really do see the blessings in my life as well.

Having a child with special needs gives you a different perspective on those childhood milestones. I also think that I have a special appreciation for the little things in life as well. Take Halloween for example, most parents might not give a second thought to their child walking up to get candy. For our family it took us 3 years to see James be able to walk up to 2 houses. It was beautiful and something that I will never forget.

James is such a joy. He loves to laugh and play with his kitchen. He is able to crawl on his hands and knees pretty much everywhere now. He doesnt army crawl pretty much at all anymore. He can pull up to the coffee table and the couch anytime he wants to. His favorite activity right now is to go outside on the patio by himself ( of course I am watching him) He loves to tell me "Bye Mommy. I go outside now" He plays with his sidewalk chalk and sand table. He can even throw a ball to his dog Sushi. He gets dirty and sticky. James is all boy and I love it!
When I get wrapped up in taking care of all the things he "cant" do I have to take a moment and remind myself of all the things that he CAN do!