I was watching the news last night and they had a story about a lady that had 2 sons with genetic disorders. She was having trouble getting them to and from their multiple weekly appointments because of car troubles and had no money to get what she needed. That is one of the main purposes for starting Jacob's Ladder Foundation. We want to be able to help people with the day to day strugles of having/ being a child with a genetic disorder. I have a pretty good life, with lots of great friends, and little financial struggles and I still have difficulties dealing with all of the time and energy I have to put into Jacob. I can't imagine dealing with all this alone and/or not having the financial resources to get him what he needs.
On that same note, I am once again overwhelmed with the generosity of our friends and family! Certain people have really touched our hearts with their support for Jacob. I know I write about this alot, but we would not be where we are today without those people in our lives. They have brought us through and continue to bring us through to the other side. I can't even express in words how much it means to us to have all of you in our lives! We love you!
Wednesday, December 22, 2010
We got our Ankle Braces!
We finally got Jacob's ankle braces. They are the tiny Sure Steps that just o around his foot and ankle to keep his feet from rolling. Alexis picked out the Ocean design for him. I got around to trying his leg braces on with his ankle braces today and it has made a huge difference! He is standing up much straighter and not sitting into his leg braces as much. They are so tiny, but make such a big difference!
Friday, December 10, 2010
18 month Check up and Therapy update
So, it has been awhile since I have written in here. It's been extremely busy around our house, but I want to give everyone an update!
Jacob just had his 18 month check up on Tuesday. He has finally (barely) made it to 20 pounds! I thought he was going to weigh more than that, but it came out to 20.4 lbs. We finally turned him around to face forward in his car seat a few weeks ago, so he is much happier in the car. The rest of the visit was pretty routine; shots, increased his pulmacort dose since he is having wheezing at least once a month if not more and he got a prescription for his new ankle braces(which I will write about more in a minute). He is also scheduled for a new swallow study to make sure he doesn't need to increase or (cross our fingers) decrease his thickener. The first available appointment is not until April, so he is on a cancellation waiting list and hopefully he will get in sooner.
Ok, more on the ankle braces..His Physical Therapist has suggested that he needs ankle braces because his ankles and fit roll in when he puts pressure on his feet. Hopefully the braces will help him stand a little better. He also has the leg braces from Children's Mercy Therapy that are helping to keep his legs straight when he works on standing. I am not seeing a whole lot of progress yet with the standing, but the therapist thinks he is making some progress in that area, so I will trust her opinion!
Speaking of therapy, he has been recommended to go to Physical therapy once a week and occupational every other week. Whether we are able to get on the schedule for that is hit or miss. We have alot of therapy sessions scheduled for this month though, so I hope we can get what we need for next month as well.
Jacob's newest trick is rolling all over the place. He has figured out that he can lay on his back on turn his body around with one foot to position himself in the right direction, then he rolls to his destination (which lately is under or behind the Christmas tree). He has also decided that he only wants mommy to hold him. So, don't feel bad if you try to take him from me and he immediately starts to cry. He doesn't even like daddy holding him if I am in the room, so I guess he has finally hit the "separation anxiety" stage.
So, that is what is going on here! Other than that, we are just getting ready for the holidays and Jacob will be getting some sippy cups in his stocking. I think he will do well with them since he is already trying to steal his brother's sippys and drink them!
Jacob just had his 18 month check up on Tuesday. He has finally (barely) made it to 20 pounds! I thought he was going to weigh more than that, but it came out to 20.4 lbs. We finally turned him around to face forward in his car seat a few weeks ago, so he is much happier in the car. The rest of the visit was pretty routine; shots, increased his pulmacort dose since he is having wheezing at least once a month if not more and he got a prescription for his new ankle braces(which I will write about more in a minute). He is also scheduled for a new swallow study to make sure he doesn't need to increase or (cross our fingers) decrease his thickener. The first available appointment is not until April, so he is on a cancellation waiting list and hopefully he will get in sooner.
Ok, more on the ankle braces..His Physical Therapist has suggested that he needs ankle braces because his ankles and fit roll in when he puts pressure on his feet. Hopefully the braces will help him stand a little better. He also has the leg braces from Children's Mercy Therapy that are helping to keep his legs straight when he works on standing. I am not seeing a whole lot of progress yet with the standing, but the therapist thinks he is making some progress in that area, so I will trust her opinion!
Speaking of therapy, he has been recommended to go to Physical therapy once a week and occupational every other week. Whether we are able to get on the schedule for that is hit or miss. We have alot of therapy sessions scheduled for this month though, so I hope we can get what we need for next month as well.
Jacob's newest trick is rolling all over the place. He has figured out that he can lay on his back on turn his body around with one foot to position himself in the right direction, then he rolls to his destination (which lately is under or behind the Christmas tree). He has also decided that he only wants mommy to hold him. So, don't feel bad if you try to take him from me and he immediately starts to cry. He doesn't even like daddy holding him if I am in the room, so I guess he has finally hit the "separation anxiety" stage.
So, that is what is going on here! Other than that, we are just getting ready for the holidays and Jacob will be getting some sippy cups in his stocking. I think he will do well with them since he is already trying to steal his brother's sippys and drink them!
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