Alrighty folks! I have had lots of requests for more information about what is going on with the kids... So, here it is... If you have more questions about the kids, always feel free to ask. We do NOT mind sharing one bit and would rather you ask then wonder. :)
The kids are seeing Genetics. Genetics have told us that the kids have some form of a muscular or mitochoondrial disease(to understand mito go to www.umdf.org ). Over the last year, they really thought that the mito was ruled out. However, the kids are having energy crashes. This is where they get very very weak. They struggle with exhaustion to the point of some times even sleeping the day away. This can even include their muscles being "floppy". That can show up in them struggling to do things completely as they normally would to just being accident prone more. Can cause asthma onset to even choking on foods... You don't realize what takes muscle until your muscle gives out on you at times.
Considering all this, they have opted for us to start using the wheel chairs again. This is NOT for them to use every day or just to go to the store, etc. This is for them to use for big days where there is a lot more walking, standing etc. Places like the mall, the zoo, museum, etc. What we are finding is that when we go to places like this, the kids struggle with energy crashes for 2-3 days after words. when we use the chairs, there are no set backs. It helps to preserve that energy.
As far as health goes, they are holding up well. We are more cautious right now with the flu going around. Any nuero muscular disease is going to cause a person to struggle with getting over things. So... just being a bit more cautious.
Nuerology is following the kids and working in hand with genetics looking to see what is going on. They have done an MRI on Joey. We will know more about that the 30th when we see this doc... As of now, our understanding is it didn't look too bad.
As far has cardiology goes, the kids will be monitored yearly with and echo and an EKG to enusre their heart is doing well. The heart is a muscle and can be affected. As of now, they are both strong and doing great with their hearts.
Pulmonary is coverieng both kids for asthma and breathing issues. Joey's sleep test and CT scans have all showed he is doing well. They are going to start doing sleep study's at least yearly. This is going to be done in both kids as Abby starts seeing pulmonary in November. They are doing the studys because often muscle weakness will affect breathing and that's gong to happen at night when they are their most tired. Abby will be having a study in December more than likely. They are considering allergy testing on her as well to see if she needs monthly shots to control her allergies.
Joey will begin seeing the dental clinic in cincinnati. Apparently his teeth are abnormally decaying. so we will begin to fnd out more about that on the 2nd of November.
As of right now, these are the main issues. We are going to Cincinnati several times a month right now and we are going to therapy 2 times a week.
Ok... so there is a start of a look into our lives.
we are going to be needing to do some more fund raising for over night stays coming up with Abby. So, if you are interested in helping or donating funds/stuff to sell... let me know! Thanks!
~Mindy Pfohl~
pfohl4@hotmail.com
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