Hello Friends! Happy New Year! We hope Santa and Father Time were good to all of you this year! Christmas was nice and quiet for us, spent with family and friends.
January has been a bit of culture shock to us. I returned to work on Jan 2nd and am already feeling frazzled. I’m sure it will get easier once the routine really becomes routine. I’m happy to say that I am still gainfully employed at Intel and have been assigned to a pretty cool project. It will be a lot of work, but is much better than the alternative. Unfortunately, there will be some travel involved and I’ve already had to take a 3 day biz trip to Phoenix, which we somehow all survived. It is nice to have a break each week from the medical jargon, phone calls for services, and baby talk which had become my life for the last 6 months. I do miss the baby talk, though.
During my 1st month back to work, I’ve already had to take time off to take Nathan to the doctor multiple times. He continues to have re-occurring upper respiratory infections (ear, sinus, and eye infections) and in fact has never really recovered since his pneumonia in December. The pediatrician is desperately trying to find a reason for his continued sickness by running test after test to rule out possibilities. But, we pretty much know deep down that it is his medically fragile state that keeps him from shaking things off. The seizures have also gotten worse this month. He started having full body prolonged seizures on a regular basis in addition to the infantile spasms. It makes it harder to treat as the types of seizures respond to different medications. Of course, we still have
not found anything to treat either type of seizure; it seems we just keep adding medications with no success. We’ve also added vitamin treatments and essential oils this month, but have not seen a difference yet. With the combination of the infections, seizures, and meds, Nathan continues to become weaker and floppier each day with little interest in interaction. The seizures have also caused more issues with his breathing. After a cluster of spasms, his breathing becomes very labored and stridorous, sometimes lasting for hours. I spend a lot of time thinking about his quality of life and just pray that he can start feeling better soon so that we can move forward. With my return to work, the holidays, and his illnesses, we have reduced some of his therapies. We dropped his weekly water therapy and he usually only has his physical therapy once per week. He still continues to have his speech, occupational, child development, and music therapy at home every week (if he does not sleep through them). Music continues to be his favorite activity.Zachary is adjusting well to day care. He is rolling over, trying to sit up, and babbles constantly.
We can’t believe how fast he is growing and learning. The excitement continues to be bittersweet in our lives. But it does prove how each new milestone is really a miracle and keeps us from taking anything for granted. Madison continues to love kindergarten and is doing very well. She still loves being “big sister” and is so thrilled that Zachary never tires of her entertainment (we are thrilled too as it occupies both of them). She recently told us that she thinks Nathan is “too serious”, I guess because he is not so easily entertained.After 3 months of battling, our insurance has finally approved a real wheelchair for Nathan (don’t even get me started on why we had to spend 3 months justifying why he needs a wheelchair). We can’t wait to get it next month. I’m in the process of trying to get a ramp and a "power" wheelchair lock down system to put in the van which will make our outings so much easier. We have also begun talks with architects/contractors to turn our dining room into a downstairs bedroom/den. Our entire house is beginning to resemble a medical therapy unit.
Our family is excited for the Superbowl next week and the boys both have their full Colts gear to wear to cheer on Indy (compliments of Aunt Gloria). Next month starts birthday season for us. Maddie turns 6 in February and Nathan turns 2 on March 1st. It’s hard to believe. We hope everyone is doing well and we still love hearing from you. We enjoyed all the holiday cards and family pictures we received this year. It's so much fun to see all the kiddos grow up. Big hugs and kisses from all of us to all of you.With love, the McCues
