Sunday, August 29, 2010

ARD and More

So the ARD on Wednesday went. It was not good, nor bad, it just went. We are not at a point that I can say we have resolution yet. The district is setting up a medical evaluation with their head nurse as well as some of Casey's doctors and therapists. This will tell the district in more detail just how medically fragile Casey is.

While we are waiting on them to set up and complete the eval they have asked us to check out a few schools in the district. They have a couple of campuses that they use for their more involved kids. I don't know if it is really medically fragile or not though. I agreed to go check them out with an open mind. I am hoping Tim can go with me since it will be over lunch. We will just have to see how his meetings look that day.

Instead of keeping Casey in a holding state, they did go ahead and resume homebound services. She started on Friday afternoon with PT and the rest will start this week. I hope to have this all resolved by the end of September. I have no idea if that is a realistic hope or not. I guess I will find out soon.

Last weekend I noticed Casey had some drainage out of her left ear. We took her in to see her ENT on Tuesday. Sure enough, she has an ear infection. That poor ear. It is the one with the cholesteoma, the wound and now the infection. She has been getting drops since Tuesday. It seems to be a little better. We will take her back in next week to get it rechecked.

We added a new section to the site Downloads. There is a full description on the page so I won't go into details here. If you are interested, check it out.

That's about it for now. Casey has a busy week adjusting to her additional home services. As always, have a great week!

Friday, August 20, 2010

School

I met with Casey's school last week to talk about getting Casey transfered to a Special School. The person that I spoke with agreed that it would be a good idea for Casey. When she went to start the process she was told we have to have an official ARD. On Wednesday I will meet with her again, as well as many other people involved in the school and Casey's care to have the ARD.

Tim and I have done a lot of research and talked with other parents and professionals in the area. Most schools do not offer classrooms designs for kids as medically fragile/complicated as Casey. There are a couple in the area that do however. So far everyone that I have spoke with has agreed that Casey should transfer. However, until Wednesday morning I will not fully know what all is involved in this process.

Currently Casey gets her school services (PT, OT, Speech and Vision) at home. We found out just a few weeks ago that half of her therapists are no longer with the district. We figured this was as good as any time to start working on the transfer.

I will let you all know how it goes and what we can expect as soon as we get more details. For other parents out there looking to do the same type of thing, I will post more details on the entire process when I get a little further into things.

Also, on a separate note, I saw a story on-line today about Jennifer Aniston's use of the R-Word. I try not to make a huge deal out this, but truthfully it is offensive. Casey doesn't know the word, and I hope that she never hears it in a derogatory way. It breaks my heart to think that one day she may and the hurt that she will feel with that word. I think we all need to make a conscious effort to stop using this word in that way. I know no one would want to hurt Casey's feelings (or any other special kid out there). Our words are powerful - we just need to keep that in mind.

Friday, August 13, 2010

Updates

This week has been pretty busy. We did get a lot done though. Casey had a good GI appointment on Monday. Since she was sick we have had to go every 2-3 months to GI. After this appointment that doctor felt that Casey has stabilized and we can go back to our 6 month schedule. That was good news.

On Wednesday Casey met with a new neurologist to get his take on Phenol, Botox, etc. Since the Phenol injects into the nerve instead of muscle he was saying it can be a little tricky. He does not like to do them in his office, but rather in OR under sedation. That's a big deal. We do not find many things anesthesia worthy with Casey. The risk is so big. He understood our concerns and is going to try something else. We are going to go to his office and he is going to inject a Lidocain Block. The results will not last long. We should be able to get a realistic expectation of how she will react with the Phenol from this test. Then I think we can properly determine if the risk with sedation is worth it or not.

The doctor also suggested getting Casey some acupuncture. When we were in LA she went weekly to get Craniosacral Therapy. The therapist would often do a needle or two as well. Casey loved getting these treatments. I had not found a good person to take her to here that also takes insurance. We are going to try a guy next week that was recommended. If Casey likes it we may try to set up a regular session for her.

I met with Casey's school yesterday. Half of her therapists have left the district and so Tim and I took some time to do a little research. There are a few schools in the area that have good reputations with special needs. There are fewer however, that deal with severe complications and fragile students. We are working with her current school to see about getting Casey transferred into one of the medically fragile campuses. We are just getting started on what we expect to be a pretty complicated process. As we get details I will post more.

Have a great weekend, and fun Friday the 13th!

Tuesday, August 10, 2010

Updates

Casey is still taking Flounder with her (and Elly) everywhere she goes. I am not sure if it is because he is yellow, a fish, or from her wish. What ever it is, she loves him.

We have been pretty busy around here. Casey's ear is still not recovered so we have weekly appointments to have it checked. Some days it looks better, some days worse. Eventually we will get it to heal.

We are trying to get in to see a specialist about long term prevention for stuff like this. We will talk to her about special beds, pillows, etc. She is pretty busy so it looks like it will be out in November for that appointment.

We have had to go back a few times to get Casey's AFOs adjusted. The right one seems good now, but I think we may need to go in one more time for the left. It's close, but still a little to tight and pinches her ankle.

Casey has been having a hard time with her teething. She is so drooly and fussy. We have been giving her Tylenol and Orajel around the clock. It helps, but we will be so glad when her teeth finally settle.

This week Casey is going to see a new doctor. They have a speciality clinic and there is a doctor that does Phenol Injections . Phenol is sometimes injected near a nerve in order to temporarily (up to a year) stop it from transmitting impulses. We are going to talk to this specialist to see if he thinks it may help Casey. It is hard to say with Casey if her stiffness is due to short muscles, or neurological misfires. I suspect it is a bit of both. Depending on what he thinks, and what is involved in the procedure, we may look at doing this in the near future.

Casey has routine pulmonary and neuro follow-ups in the next few weeks. We should be just about off of Casey's old seizure med by her neuro appointment. She is on a new one that seems to be doing the job. So as long as she continues to tolerate the ween she will be done with the other one soon. I am not sure if they will want to do another EEG or anything when she is off. I guess it just depends on how the appointment goes.

We are also dealing with some school stuff now. We are going to have a meeting in the upcoming weeks. Once we get through that meeting I will post more details on the issues and how we are going to deal with it.

That's about it. We hope everyone is doing well. I will post more later about the phenol options and school.