PT and Long-Term Care

Today Bryce and Annalise had physical therapy. Tess (their PT) was very surprised at how much Annalise has changed since just last Friday. She has decided to cancel the order for the walker since by the time it gets here, she will not be able to use it. Tess is ordering a gait trainer like Bryce's (only smaller) instead. She also thinks that we should work on getting a wheelchair for her soon since although she is still small now, we know we will need it in the near future and it seems to take so long to get things through the system.

Good news today was that I heard from the long term care people. They are going to be setting up a time for someone to come out and do a medical evaluation on Annalise to see if she qualifies for long term care. It usually takes 2-3 months for this process. I'm hoping that the whole process runs smoother than it did with Bryce and that she qualifies the first time through. I think that she will since Bryce is already in the system and she already has the same diagnosis. This will really help with the costs of her therapies (which can run up to $70 for each hour session) and equipment that she will be needing in the upcoming months.

Thank you all for the prayers. If you can, please add our oldest son, William to your prayers as he seems to be really struggling with everything that is going on with his baby sister right now. Thank you!

Regression Continues

Sorry this isn't a very upbeat post, but I want to be honest with you about what is happening. Also, we may need this info in the future as we try to piece together and make sense of this horrible disease that our children have. As of this week, Annalise is almost completely unable to walk without holding onto someone or something, and even then she is very unsteady. She crawls most of the time, but that is even becoming difficult for her. She has also lost the ability to roll over when lying on her back. Today when she was lying on her back she was unable to move from that position. She tried multiple times, then put her head down and just kept saying, "I stuck, I stuck". Very sad to see. When this all began with her, I predicted (due to Bryce's timeline) that we would have until April or early May until the rapid regression part of this nightmare would begin, but by looking at this week, it appears that it may be sooner than I thought. This week has been harsh!

Just a quick update to let you know that our house has been fever and sick kid free for 4 days now. It is so nice!

Also, Bryce had his GI appointment today. He is at the same weight that he was at 3 months ago. I'm sure he had gained some before he got sick and then lost weight during that time. However, since he hadn't gained like they would have expected the doctor wants to see Bryce on a monthly basis again just until he starts gaining a little weight. Hopefully he can stay well and bulk up a little this month so that we can go back to visits every 3 months instead of monthly.

Our Little Model

Here's a little fun news for you. Yesterday, Bryce had a photo shoot as a child wheelchair model! The shoot was for a company that sells mobility equipment. They will be using his pictures in some of their brochures and a magazine. He did a good job and he made $100 for about 2 hours worth of work. Not bad for a cute 4 year old's first job! Now he has made his own contribution right into his benefit account! Way to go, Bryce! It was great to do something out of the ordinary and a little fun with him.

Update

Sorry that it has been so long since I have updated everyone. It has been a busy month! The highlight of this month was by far the benefit concert for Bryce done by Will Perkins in California! It was amazing! He is such a talented young man. It was great to be able to finally meet him and then watch him perform. Thank you so much to Will and everyone who attended. It was a huge success and we are truly grateful!

Annalise had a Ct scan done the beginning of this month that came back normal. She also had a lumbar puncture and blood drawn for some genetic testing. We are still waiting on results from those. She did well overall with the testing. The nurse who was working with her during the LP said that she did great, but she sure is a fighter. So true! That little girl is going to make it far with her determination.

She has begun Physical therapy and is doing pretty well there. She is still walking some although it is getting more difficult and she has begun to crawl much more often. She is also really struggling to sit and appears to be losing some of her upper body strength. We are hoping to get her a little walker soon, so that she has a little more support.

Bryce finished out the month with multiple trips to the ER. While in California he developed Croup which has turned into pneumonia. He has had a lot of trouble with his breathing, but seems a bit better this morning. I hope and pray that he is on the mend and that we will soon have our happy little guy back!

Thanks again to Will for the concert and to all of you for your prayers and thoughts.