It feels like we have been going non-stop all month. Last week was pretty busy. Casey started the week out with a bit of a tummy bug. She came down with it on Sunday and finally late Tuesday afternoon she seemed to be getting over it.
Casey's AFOs were rubbing again and had to be readjusted. We took care of that Tuesday. The red mark we noticed over the previous weekend is still there. I hope that it goes away soon.
Casey had her 6 month follow-up with ortho last week. Overall it was okay. We are not changing anything in her treatment. However, we have noticed over the past couple of months that Casey's arms have been getting much stiffer. The doctor reviewed the x-rays they took a few weeks back and confirmed that her left elbow is dislocated. He said Casey can still bend it with out pain, but if we were to rotate the joint it would hurt her. He did not seem very surprised. He was saying that he sees that happen with joints that are hyper-extended sometimes. If it starts to bother Casey we can opt to have it surgically repaired. As long as she is not in pain and it does not limit her ability to move then surgery is a bit much.
The wound clinic has changed up Casey's ear treatment again. We were not getting the results they wanted from the previous treatments so now we are on an Iodine based treatment. We have to leave it on for a week. I hope that it helps. I guess we will know soon enough.
Casey had her flu shot and started music therapy last week too. It was a busy busy week. There is lots going on this week too. I will post later this week with more updates/details. Have a great week!
Sunday, September 26, 2010
Friday, September 24, 2010
Sing-A-Long
Today was Casey's first official music therapy session. We went to check things out last week, but this week she was able to really participate. Casey LOVES to sing. She sang along to all kinds of songs. It was so cute. She got to play the guitar and bells too. I think she likes music therapy. She ran out of gas about 5-10 minutes before the session ended. I am sure over time she will learn to save some energy to make it through the entire time.I had to post this picture. She was just so cute singing along today. I will try to post more later this weekend with updates from all her recent appointments.
Monday, September 20, 2010
Busy Girl
In our last post I mentioned that Casey's ear was finally getting better. I spoke too soon. It was getting better, then it took a turn for the worse. I think we are back on track now. I was hoping to post that it was healed and all is well, but sadly we are still dealing with a wound. We have our weekly checks while we are up at the hospital for therapy, then we go back to see the doctor in 2 months. Also later next week Casey has an appointment with a rehab specialist. This doctor will help us find ways to better prevent future skin break down. This may include special bedding, positioning needs, etc. I hope she can offer us some good ideas.
Casey had a good time at her Make-A-Wish wrap party a few weeks ago. Everyone was excited to see her. She LOVES to be the center of attention. When attention shifted to a presentation being done she took a nap. Don't worry, she woke up in time for everyone to tell her how glad they were that she made it. Such a silly girl :)
Last week Casey got to check out Music Therapy. I think she liked it. She was really tired. She did wake up enough to play one of her favorite songs on the guitar (with the therapists help of course). They knew all the 'Little Mermaid' songs and the 'Meatball' song. Very exciting stuff. We are working on some billing details. Hopefully we can get her in to this once a week after I get everything figured out.
This week we have a few things going on. Tomorrow we are meeting with some people from School for the Blind. We hope they can help us get hooked up with some vision and/or deaf blind services outside of school services.
Later this week Casey has her 6 month Ortho check-up. She has been getting really stiff arms/elbows. They can go over her recent xrays with us and let us know if there is anything going on.
Casey has been having issues with her AFO's again. This time her left foot is getting a rub mark. We have to go in for yet another adjustment. The pair she had made right after surgery in LA were so perfect. One fitting and they worked for 2 years. This new pair has been a mess. I am about ready to tell them to throw them out and start over.
Casey is scheduled to get her flu shot too. That is never fun. I hate taking her in for shots. Now that she has a big girl cry it is even harder than taking her in as a baby.
I think that is about it for this week. As always, we hope everyone is well.
Casey had a good time at her Make-A-Wish wrap party a few weeks ago. Everyone was excited to see her. She LOVES to be the center of attention. When attention shifted to a presentation being done she took a nap. Don't worry, she woke up in time for everyone to tell her how glad they were that she made it. Such a silly girl :)
Last week Casey got to check out Music Therapy. I think she liked it. She was really tired. She did wake up enough to play one of her favorite songs on the guitar (with the therapists help of course). They knew all the 'Little Mermaid' songs and the 'Meatball' song. Very exciting stuff. We are working on some billing details. Hopefully we can get her in to this once a week after I get everything figured out.
This week we have a few things going on. Tomorrow we are meeting with some people from School for the Blind. We hope they can help us get hooked up with some vision and/or deaf blind services outside of school services.
Later this week Casey has her 6 month Ortho check-up. She has been getting really stiff arms/elbows. They can go over her recent xrays with us and let us know if there is anything going on.
Casey has been having issues with her AFO's again. This time her left foot is getting a rub mark. We have to go in for yet another adjustment. The pair she had made right after surgery in LA were so perfect. One fitting and they worked for 2 years. This new pair has been a mess. I am about ready to tell them to throw them out and start over.
Casey is scheduled to get her flu shot too. That is never fun. I hate taking her in for shots. Now that she has a big girl cry it is even harder than taking her in as a baby.
I think that is about it for this week. As always, we hope everyone is well.
Thursday, September 09, 2010
Updates
Casey has been keeping us pretty busy lately. Between her school therapies starting back up and her usual therapies at Dell we have also been dealing with her wound, ear infection and possible seizures. There has been a lot of appointments over the past few weeks.
Casey's wound is FINALLY starting to heal. Last week we took her in and the medication she had been using got rid of the remaining bad tissue. They changed her to a new medication that promotes quicker healing. Over the weekend I already saw a big improvement. She went in yesterday for this weeks appointment and everyone was very pleased with the latest progress. I hope to finally get this healed soon. It has been an issue since the end of June. That is too long for a wound.
We had Casey on ear drops for 10 days following her ENT appointment on the 24th. A couple of days after the drops her ear was no longer draining at all. We took her in for a follow-up yesterday and the infection is all cleared up. They did have to clean out her ears (she hates that part). She got a sticker and fell asleep on the way home.
Casey had her yearly EEG done back in May. There was a lot of activity and Casey was doing this weird twitching. The doctor changed her seizure medications and the twitching is under control now. However, now Casey is doing this weird thing where she tucks her head and stresses her entire upper body. I think it is pain from teething, or possibly her trying to clear drool in her swollen pallet. It is possible that it is a seizure though. To be safe we have talked with her doctor about it. Unlike the twitches there is no pattern to this so we can not predict it and catch it on video. Instead the doctor ordered a home EEG to run over 24-36 hours. We do not have that scheduled yet but they expect it to occur before October. If that test does not capture the head tuck then the next step would be an overnight stay in the EEG lab at the hospital. We hope the home test is enough.
Casey has been adjusting to her school schedule. The therapists all start coming out last week. It makes for a busy week. I am supposed to check out the schools they mentioned in her ARD on Friday over lunch. Hopefully Tim will be able to go with me. We will see.
Casey was invited to a Make-A-Wish "60 Days, 60 Wishes" wrap party on Friday evening. That should be fun. She will get to see her new friends from MAW, US Money Reserve and KVUE. Later this month she gets to go to a PICU reunion party too. Casey loves a good party.
That's about it for now. We will post more after we get some details on school and what we want/plan to do moving forward. As always, we hope everyone is doing well.
Casey's wound is FINALLY starting to heal. Last week we took her in and the medication she had been using got rid of the remaining bad tissue. They changed her to a new medication that promotes quicker healing. Over the weekend I already saw a big improvement. She went in yesterday for this weeks appointment and everyone was very pleased with the latest progress. I hope to finally get this healed soon. It has been an issue since the end of June. That is too long for a wound.
We had Casey on ear drops for 10 days following her ENT appointment on the 24th. A couple of days after the drops her ear was no longer draining at all. We took her in for a follow-up yesterday and the infection is all cleared up. They did have to clean out her ears (she hates that part). She got a sticker and fell asleep on the way home.
Casey had her yearly EEG done back in May. There was a lot of activity and Casey was doing this weird twitching. The doctor changed her seizure medications and the twitching is under control now. However, now Casey is doing this weird thing where she tucks her head and stresses her entire upper body. I think it is pain from teething, or possibly her trying to clear drool in her swollen pallet. It is possible that it is a seizure though. To be safe we have talked with her doctor about it. Unlike the twitches there is no pattern to this so we can not predict it and catch it on video. Instead the doctor ordered a home EEG to run over 24-36 hours. We do not have that scheduled yet but they expect it to occur before October. If that test does not capture the head tuck then the next step would be an overnight stay in the EEG lab at the hospital. We hope the home test is enough.
Casey has been adjusting to her school schedule. The therapists all start coming out last week. It makes for a busy week. I am supposed to check out the schools they mentioned in her ARD on Friday over lunch. Hopefully Tim will be able to go with me. We will see.
Casey was invited to a Make-A-Wish "60 Days, 60 Wishes" wrap party on Friday evening. That should be fun. She will get to see her new friends from MAW, US Money Reserve and KVUE. Later this month she gets to go to a PICU reunion party too. Casey loves a good party.
That's about it for now. We will post more after we get some details on school and what we want/plan to do moving forward. As always, we hope everyone is doing well.
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