Being Optimistic

When they told us Lillian's diagnosis it literally felt as if my heart were breaking into a thousand pieces and my world was shattering. I just kept think that over and over again...my world is falling apart. This is not how it's supposed to be. It was bomb and bomb after bomb of bad news. Brain abnormality, vision impairment and possible blindness, learning disabilities and mental retardation, failure to thrive, medications and seizures. There did not seem to be one silver lining in the finding of our answer...except that we finally had our answer to why she was so sick, why she had the seizure and why she's not gaining weight.

Well. The doctors wanted to overwhelm us with the negative aspects of SOD, not like there are any good parts of it, but what they kept saying - and we failed to hear until later - was that the severity of the condition is very, very wide spread. I think in Lillian's case, of course we are hoping for the best, but it seems like maybe she can live a fairly normal life. The best case scenario is just that she will be on medication for the rest of her life. We can handle that. It will be hard at first to handle the scheduling and the job falls on my shoulders to make sure all of the medicines are taken each and every day. Synthroid for her thyroid, we were already on, is taken once a day. Hydrocortizone for her cortisol, has to be taken 3 times a day (every 8 hours!) And hopefully we won't need anything else. They are watching this other thing with her sodium level/urine out put very closely. I have a feeling they are just going to put her on medication for it to be on the safe side.

Her eye sight seems to be doing much better. When we first heard the diagnosis and they said possible blindness we were so shocked. We know she can see. But would she loose her eye sight in the years to come? From what we understand - No. She might have some sight limitations and that might make learning harder, but we can handle that too.

There's a lot more to go on and on and on about...but I'm still tired and need a shower and then I'm going to go kiss on my baby girl - who in our eyes is still blessedly normal.