Friday, September 4, 2009

more on the kids...

Well, Mr. Joey saw the playdough this morning. He wanted to play so bad. I got him up and changed him and well, that was it. The pain kicked in so he wasn't able to sit in the chair. Not sure he could have anyways. He has no stability. The back would have been supported but not his sides. He just falls over in any direction and can't pull himself up... So, we solved the problem! Put out a blanky and happy the lil man became as he got the play dough out!! :)




Now, as for sister, to explain what is going on. Yesterday, when she woke up (This is the day after joey's surgery where she was at the hospital the entire day playing and walking.) Jeff said that she couldn't stay awake. She kept falling back to sleep after 10 hours of sleeping. Anyways, once she woke up for the morning, she was very weak. Had trouble getting to the bathroom. When she was trying to sit to eat breakfast, she was swaying and couldn't stay up right. She had zero strength in her arms. They began shaking when she was trying to get food to her mouth and jeff had to put the drink there for her. Jeff would ask her what she was feeling and she'd just say "I'm so tired daddy. I feel tired every where." Jeff loaded her up and brought her to the hospital. she couldn't get to the car so he had to carry her. She fell back to sleep in the car and wasn't able to stay awake. On there way I called Genetics. He walked into the Hospital room literally moments after Jeff and abby did. Gist comes down to, Abby had an energy crash. Dr. Burrow felt that what we are seeing has to do with what they have been looking into... some form of myopathy. Mitocondrial disease causes energy crashes. So, the reality of it is... they are looking deeper now into this disease. My heart is broken at the thought of having to consider it further, but we have to do what is best. The reality is, a four year old shouldn't have an energy crash that bad EVER. So, we'll see what is to come. Dr. burrow said even with having had her tonsils out and all that we'd been through here as of late, the stress on her body was too much and a 4 year old should never ever crash like that. He was able to see her at the extent of what was going on. I'm praying this isn't the case, that it's not mito. I'm praying it's not what they find, but I'm allowing myself to deal with the emotions in hopes not to crack when we get the results no matter what they are.


For those who don't know about this disease:

Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.

Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection

1 comment:

The Besmer Family said...

I am so sorry you have to go through this again. I will pray for you guys!