Monday, April 11, 2011

The silver lining:)

"Friendship is unnecessary, like philosophy, like art... It has no survival value; rather is one of those things that give value to survival." - C. S. Lewis

Friendships seem so hard for special needs parents. A lot of people I know complain that people seem to disappear once they have a child with special needs. We have had that to a certain degree but I have had a lot of great people support us through all of this. It makes my heart happy knowing that people care. Sometimes it feels like this situation has consumed us. I worry that all people see us as are "the sick family". They don't see the normal everyday stuff we go through. My hope is that each person will see that we are more than just our illnesses...that people will see our value.
We have been so blessed in so many ways and I hope people see that too. I have had several people say, "I don't know how you do this." or "How do you keep it all together?". I think we do what every other special needs family does. We keep on going for each other. Life is hard for everyone. Our struggles may be different from others but everyone has struggles. I amazed by the strength of so many others. It is truly inspiring. I have learned from so many others: that you have the illness, it doesn't have you.
We never expect life to be what it is sometimes. I never thought I would watch my husband try to teach my daughter to be brave for her port flush by him trying with all his might not to pass out from injecting medicine into himself. I never thought I would have to rush home to help hold my daughter down so she could have her port flush...I didn't even know what a port was till she came along. I never thought my 8 year old would even know the words spinal lesion...never-mind tell someone she was having a MRI to look for them. But we have learned so much from all of this. My kids are compassionate little people because they have been through so much. Their strength and compassion inspires me!!

Monday, April 4, 2011

Never a dull moment!!!

I thought it was time for an update. A lot has happened lately and I have been just trying to process it all.
Sean~He had a MRI of his lower spine and brain. They didn't find any lesions on his lower spine nor his brain. This is good news!! The doctor thought that the lesions in his neck long lesions that extended down his spine(this would have been another indication of Devics disease vs. MS). This is not the case. He went back to see Dr.Cantor(the civilian neurologist) last week. He finally dx'd Sean with Relapsing and Remitting MS. Well technically he has MS with an asterisk. Who gets a diagnose with an family does!!! Meaning they believe it is MS, but the fact that he only has spinal lesions and we have a crazy family history they won't commit to saying that is definitely MS. They will always question his diagnosis b/c of our girls and his weird symptoms. They drew a bunch of blood and started him on some medicines to treat MS. The doctor is hoping that we can get him back to only having very minimal numbness. He is hoping that between the steroids and interferons the numbness will get under control. The interferon medicine will hopefully prevent another episode. We still don't know what will happen with the Navy. He most likely will have to start his med board process in July. This part is the most nerve racking b/c our future is in the Navy's hands. That is such a scary thing for me but I know all things will work out. Please pray for us as this is such a stressful process.

Kadian~Kadian had her MRI about 2 weeks ago now. The sedation went great. The anesthesia doctor said she believes she had trouble with a medicine called Precedex. They put in her records she is never to have this again. Her spine MRI was normal. The good news~ she has no spinal lesions and the tumor on her spine isn't bigger.

We went back to the neurosurgeon and he said once again there was nothing he could do. He said he believes something is wrong and not to give up looking to find what it is. He said there is nothing surgically they could do. He said her muscle on her legs looks good. He doesn't see any "wasting" away so this is good news.

The neurologist wants her to have a brain MRI to see if it is something in her brain causing all her symptoms. Hopefully they will call by Tuesday to set up the appt. She goes on the 18th to see the surgeons for her Cecostomy tube. She has had a bladder infection since January. I feel so bad for her because I know it is painful and embarrassing. She actually got a bacteria that is killed by Septra while on Septra. Not a good sign at all!!!

Our pediatricians office called last week when we were in FL to figure out what they needed to do to send her to the mitochondrial specialist in Atlanta. I am praying we can get that all figured out this week. There has to be something that explains all of this. She isn't getting any better despite every thing we are doing.