Don't really know whats going on with our little man at night time. His alarm is beeping, beeping off and on while he is sleeping. The other night first it was his heart rate dropping down in to the low 70's so would change his position and it would come up again.That went on for a while I even had him sitting straight up just to keep his numbers up. Then his O2 started to drop so in the end had to put him on some oxygen well 2.5 liters just to keep him in the 90's. During the day he was pretty good had a few dips when he was having his nap.
Last night again his heart rate dropped in to the 70's. This goes on for a few hours at a time. Watch we are going to the cardiologist the end of the month and when he will have the halter monitor on it won't happen. I even put the finger pulse ox on him to make sure it just wasn't his monitor that was giving a false reading but the numbers were basically the same. So we are not crazy.
Sometimes we will see this pattern right before the shit hits the wall with seizures or he will get SICK. Oh little man I hope something is not cooking.
I have been trying to stay away as much as possible as I have a cold and a horrible cough. Maurs is in the same boat her cough is wicked. I keep telling her to stay away too.
Monday, February 20, 2012
Saturday, February 18, 2012
Good Follow up appointment
We went back to the rehab doc for a follow up after the botox shots. She was very impressed with the job it had done on his ankles, left arm and hand and on his right hamstring. His left hamstring will need the release surgery but by doing the botox its not something we have to have done right away we can wait for another while. We scheduled another appointment to have another round of botox done in June. Our hopes for the next round is to keep what he has gained and maybe even to get a bit more of a release out of his left hamstring. The reason his left side is much tighter is because of the stroke he had before he was born. You know we never thought we would ever see him use his left hand but since the shots his hand is opened and he is moving his fingers independently and his thumb is not constantly in against the palm of his hand. Honestly when we decided to try the botox we were hoping to just put off the tendon release surgery on his hamstrings and ankles but never did we think he would only need 1 surgery instead of basically 4 surgeries.
We are still going to be going to the movement disorder doc for his dystonia even though botox is a treatment for dystonia we are really using the botox for his CP spasticity. He is on a medication for his dystonia and that is helping that issue.
Just waiting to hear when his new cool wheelchair will be in we really don't expect to hear anything until the end of April hopefully we will have enough movement in his legs that they will justify his need for a gait trainer other wise we will just have to get another stander as he is growing out of the one he has.
Wish I was able to afford to get a soup to nuts gait trainer for him. Oh well I am thankful everything he has been able to get but would love to help him gain more independence with a gait trainer.
We are still going to be going to the movement disorder doc for his dystonia even though botox is a treatment for dystonia we are really using the botox for his CP spasticity. He is on a medication for his dystonia and that is helping that issue.
Just waiting to hear when his new cool wheelchair will be in we really don't expect to hear anything until the end of April hopefully we will have enough movement in his legs that they will justify his need for a gait trainer other wise we will just have to get another stander as he is growing out of the one he has.
Wish I was able to afford to get a soup to nuts gait trainer for him. Oh well I am thankful everything he has been able to get but would love to help him gain more independence with a gait trainer.
Thursday, February 2, 2012
Sad
You know we have come in contact with some really wonderful families since our Finnian was born. We have friends all over the USA and even all over the world. They have become our special family. Some of these wonderful people we will never meet in person but have become a huge part of our daily lives. You know you boot up the computer and check out to see how things are going on with them on their blogs or through facebook. But then there are times you start reading the up dates and you feel like the rug got pulled out from under you and you just stare at the computer screen and you just cannot believe what you are reading. You know in a few short months that has happened.
In January I was checking in on the Littlest H as he was starting a new treatment for his mito disorder. His Mamma wrote "H started new treatment" and the same evening she got word that her husband had passed away. My heart goes out to Debbie and her 3 H's on their loss.
Another family the King family from Tasmania, Australia in October their beloved Noah passed away at the age of 10 years old.Last week the King family suffered another loss. Aaron King (Noah's dad) passed away at the age of 39 from a heart attack. I cannot imagine what Lisa and the 3 boys are going through with the loss of a husband and dad.
In January I was checking in on the Littlest H as he was starting a new treatment for his mito disorder. His Mamma wrote "H started new treatment" and the same evening she got word that her husband had passed away. My heart goes out to Debbie and her 3 H's on their loss.
Another family the King family from Tasmania, Australia in October their beloved Noah passed away at the age of 10 years old.Last week the King family suffered another loss. Aaron King (Noah's dad) passed away at the age of 39 from a heart attack. I cannot imagine what Lisa and the 3 boys are going through with the loss of a husband and dad.
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