Hard-Knocks Life

So now that I have set something straight, let me set something else straight: We desperately need and are deeply thankful for every one's support and sweet encouragement to get through our "rougher than usual" rough times in this hard-knocks life! It is through your messages, thoughts, and prayers that we feel less forgotten, abandoned, and isolated. For us, not having a normal life means not having social opportunities, and it means not traveling to visit family, and it means not having the freedom to do certain family activities. It means our money and time goes to therapy, doctors, and testing. It means balancing life around an intense focus on our children's disabilities in order to help them get better and keep them safe with an equal balance to appreciate the enrichment and enhancement that these two special children bring to our family and others. Really, it's an impossible task to balance the two extremes, but it's completely necessary in order to survive the difficulty of this extreme life!

So please send us your well-wishes, thoughts, and prayers as William and I struggle to provide a balance since the "hard-knocks" continue to off-set the equilibrium lately as two of our children continue to face new and multiple medical problems. For an easier way to update, I just will list some of the current issues our family is facing:

1. Aly has increased seizure activity resulting in daily grand mals.
2. Aly still has tachycardia and the new medicine has seemed to worsen the racing of her heart.
3. Aly is losing clumps of hair. We think it's due to the thyroid condition. We finally see the endocrinologist on Monday.
4. Aly has lost some weight which might be related to the recent change in her formula. A change caused by the company's recent decision just to stop manufacturing the milk since it was no longer profitable after more than a decade.
5. We plan to travel for one night to Houston with Aly and Cam for the Rett consultation. We still have to work out travel plans and figure out expenses. Mom and Dad will keep the 3 healthy CCA Rumulys.
6. Cam is transitioning onto the seizure med which has meant some increased activity during the night and grumpiness during the day. He has been diagnosed with seizure disorder or epilepsy.
7. Cam also has Periodic Limb Movement Sleep Disorder which results in his body awakening him multiple times during the night. His seizure med might help this condition and Melatonin is also an option.
8. Cam has an ARD with the ISD on Tuesday to begin speech services recently offered by the district through Proportionate Share Funding. We're considering a possible placement in a blended kindergarten although the district might continue to offer only a self contained classroom instead.

It's really hard for me to keep everything straight about our needs. I am sure that I left off something. Usually, we work through the most pressing issue until another one needs more attention, but lately multiple issues are demanding our consideration, thoughts, and decisions. Of course, flu and cold season is here, and our Aly needs safety from exposure as we attend multiple medical appointments in hospitals which are filled with numerous cases of flu. Obviously, we still desperately need every one's prayers! And we treasure encouragement because we're feeling overwhelmed by the "knocks" of this hard-knocks life, M&R7