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.

THE MYSTERY

HOW THE MYSTERY BEGAN

Bryce was born as the fourth boy in our family. Although he has always been special in his own way, he developed normally just as all the others had. He hit all of his milestones right on time. He began smiling, rolling over, sitting, crawling, talking, standing, and at 11 months of age he took his first steps.

However, in June of 2008, at the age of 17 months that all began to change. Bryce never really had taken off walking and I began to notice that when he would pull himself up on things he was no longer able to get back down. I took him into the pediatrician who looked him over, checked his reflexes and said that everything looked fine, but to bring him back in if I noticed anything new. Well, less than one month later things really began to go downhill. First he lost the ability to sit. I took him back into the pediatrician who had us see a neurologist right away and that's when this journey began. Over the next few months Bryce endured many tests including multiple MRI's, Ct Scans, EMG, EEG, spinal tap, urine tests, and has had more blood drawn than most people do in a lifetime. Although everything was coming back normal, Bryce continued to lose more and more of his abilities. His team of Neurologists at PCH were stumped by his symptoms. They had no idea what was going on.

By November 2008 he could no longer walk, talk, sit, crawl, or roll over by himself. He was also having trouble breathing and swallowing. It was a very scary time! He was hospitalized and had more tests done, including another MRI of his head and spine. This time there were some abnormalities with the white matter, abnormalities that our current neurologist has referred to as, "abnormal, but not in the normal way." The radiologist later admitted that these abnormalities could also be seen on the first MRI as well...just to a smaller degree.

Since that time, we have seen 6 neurologists along with many other doctors. In January 2009, one of the new Neurologists we were seeing, Dr. Narayanan, thought that it may be some form of Leukodystrophy. Finally, in June of 2009 Bryce was officially diagnosed by Dr. Narayanan and Dr. Aleck (geneticist) with Undiagnosed/unspecified Leukodystrophy, meaning that the doctors believe that he has some form of Leukodystrophy, they just don't know which type. Although a devastating diagnosis, at least we now have some direction to go. Bryce continues to regress and has become weaker since that time, although luckily at a much slower rate than in the beginning. He is now exclusively fed by g-tube and struggles with many apnea episodes throughout the day. We continue to search and pray daily for answers to Bryce's mystery. (go to http://www.ulf.org/ for more information on leukodystrophies)

A NEW TWIST TO THE MYSTERY

ANNALISE

Well, it has been confirmed by Dr. Narayanan, Bryce's little sister will be joining him in this mystery disease. We saw the neurologist yesterday and sure enough, Annalise seems to have the same thing Bryce does. I just wish we knew what IT was! Some specialists still believe it is some unknown type of Leukodystrophy while others believe it is some totally different type of genetic recessive disorder. We are working with Dr. Narayanan to get some genome sequencing that will hopefully help us find out what is causing the problem. We have been accepted into a research study which will hopefully help us find some answers. However, it may take years to have any. So, we are also looking into the option of doing the testing on our own. Dr. N said that it will cost about $10,000 to get it started. He is going to look into the how and we will be looking into doing some fund raising activities to earn the necessary money. Luckily we already have a couple of ideas and some people who are already on board to help us out! There are so many good people in this world! We are so grateful for all of you!

It is so hard to watch our kids going through this and a little overwhelming, OK, a lot overwhelming as I think of what is ahead of us. I already feel so tired and stretched to my limits, but I guess the Lord knows something I don't! I am sure not looking forward to watching what my little girl will have to endure in the coming months though. It makes my heart hurt!