Tuesday, February 1, 2011

Update on everyone

It has been a while since I have blogged last. So much has happened. Between the girls and Sean being laid up things have been hectic.

Kadian has been Dx with LCHAD. Before her second deflux surgery her acyl-carnitine profile showed her long chain fatty acids are elevated. She is on several medicines now to try and help. We have stopped biofeedback because it isn't helping with her being so constipated. We saw a new GI doctor today. He basically said that if she doesn't get a gtube she has to get a cecostomy tube. It is a tube that is placed in the colon to help with constipation. We are waiting to hear back from the genetics doctor to find out if we are still going to try the NG tube to see if that helps her. I guess this is a trial run to see if it will even help with her issues before they decide whether or not she will get a gtube. I am hoping he will call back tomorrow so we can decide what to do next. She saw the neurologist last week. They are going to do a full spine MRI on Saturday morning. They are checking to see if she also has spinal lesions also. The first MRI she had was just her lower spine. She is going to back to the neurosurgeon on the 16th. Hopefully the MRI will indicate if the tumor on her spine is larger and/or to see if they believe that it has anything to do with what is going on with her bladder/bowel. She hasn't gotten better since the last time we saw them. I am not sure what will come of seeing them. I am hoping we have some answers soon. She has another UTI but constantly has them. Her cardiology and ophthalmology went very well. She has no thicken of the heart and very little signs of Retina Pigmentosa of the eyes.

It blows me away how blessed we are that she has survived this long without us knowing she has LCHAD. Most babies die within the first year when it is unknown. This Sunday she will be 8 years old.

Lauren and Emily~Lauren and Emily both have strep throat and are on antibiotics. Lauren is very hoarse again. She is doing okay with being sick. Hopefully the antibiotics will start to get rid of it and she can talk normal again. Emily just has an upset belly from it but I think it might be the antibiotics.

Sean~Sean had his ankle surgery earlier this month. He still has about 3 more weeks of not being able to put any weight on his ankle. The doctor didn't seem to positive about the surgery working. We will know in 3-4 months if the surgery worked. If it doesn't then he will have to have his ankle fused to his leg. This means he will not be able to bend his foot. Friday he goes back to the neurologist. We will see then if he has any new lesions. His hand and arm are completely numb again. It hasn't spread to his other arm yet. He goes back to work tomorrow so we will see if his severe fatigue happens again.

1 comment:

Dana K said...

Thoughts & prayers, Candise!