Tuesday, November 11, 2008

Taking Charge....

So - there are two ways we can do this.

1. We can sit back and go down with the ship


2. We can get off our butts and fight

This past summer I went down fast with the ship and ended up with an almost severe mental breakdown and was in the hospital for a possible heart attack. After Monday's meeting and being depressed for almost two days I decided I do not have time or energy for that and Haven needs everything I can put in to this.

There are only about 27 cases of this disease known. That's not thousands or even hundreds - just 27!

Yesterday I did a lot of research on this syndrome they are saying Haven has. I won't say it yet because I personally don't believe she has it. What I know about it:

1. Weight increases rapidly around age 2 (Haven gained 25 lbs at age 2.4 and another 12 lbs at age 2.8)

2. Hypothalamic Dysfunction around age 3 (Haven lost a lot of natural functions around age 3 - had her 2nd MRI after her 3rd birthday)

3. Immune issues around age 3.5 (Haven's immune system started attacking her brain around age 3.5)

4. Hypoventilation problems around age 6 (Haven has had sleep studies and they were not too off but were off a little)

5. Fatigue

6. Decreased sensitivity to pain - this is weird and we've always told doctors about this - she does not feel pain and can withstand multiple needs put in her veins all over her body.

What Haven doesn't have

1. Growth issues - although she has not grown any since Nov. 2007 - we believe this is due to the high level of steroids she is taking

2. Adrenal failure - Haven's kidneys are fine

3. Hair and skin changes - we believe due to chemo and steroids

4. Cold extremeties - Haven was actually was fine before surgery. She now has one really hot foot and one really cold foot.

I have finally found another mom that has a child with the same "diagnosis" as Haven. I emailed her and heard back from her this morning. I'm excited to talk to her. She sent me her phone number and I hope to connect with her this week to compare notes.

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