We are still here, although we’ve been in hiding lately. Things are very chaotic, yet exciting in the McCue household. I’m hoping all of you received our email baby announcement. Comcast (or Jim?) had some technical difficulties with merging our mail lists and the announcement did not reach everybody. In case you missed it, Baby Zachary William McCue was born on 8/14. He is now 2 months old – it’s hard to believe time goes so fast. He is smiling and cooing and just lights up our lives. It is amazing to have another chance at savoring every new milestone and the wonderment of learning that can so easily be taken for granted (he has already surpassed Nathan in several developmental areas). Zach enjoys interacting with Madison, but he and Nathan have not yet figured each other out.
Which brings us to Nathan. Right before Zach’s birth, Nathan began having seizures again. They really picked up after we came home from the hospital and now he is having about 25-50 seizures per day. They are a version of infantile spasms, which are not immediately medically threatening. However, we know that each seizure may cause a set-back in the brain. Since the seizures began again, Nathan’s sleep patterns have worsened and his daytime disposition is hit or miss. Some of the strength he had previously gained has gone away. We are going through trial and error with various meds to control the seizures and are on our 3rd medication with no improvement so far. There are a few more meds we will probably try before giving it a rest for awhile. There is no conclusive evidence on the damage these seizures can cause to someone that already has brain impairments versus the damage of the medication’s side effects (not to mention the quality of family life). So, we will just make our own decisions as we go. Aside from the seizures, Nathan had a very healthy summer and is just now on his first cold in many months.
Nathan has stopped eating again – also coinciding with the seizures. Given all of the stuff going on, it is almost a relief that we are feeding and dispensing medication via a feeding tube. He still has 8 weekly therapies and 2 additional monthly therapies. We’ve also been tacking on some extra specialist visits while I’m on leave from work to get them out of the way. Nathan still favors his music and water therapies and enjoys the great outdoors whenever he can be outside. Several of the therapies are now provided by Easter Seals where the therapist comes to our home (occupational therapy, speech therapy, and child development). It is such a relief not to drive him (and Zachary) around as much, but it is a double edged sword to always have someone new in your house everyday. I’ve finally gotten over the guilty feeling that I should tidy up the house before someone comes over.
Madison is in Kindergarten from 8:30 to 2:30, but it is amazing how fast that part of the day goes. I don’t know what we’d do without Nathan’s nurse helping us get to all of the appointments and relieving me when the whole house seems to be crying. Madison loves having a new baby and has become a great helper when she feels like it. She has even asked for baby #4 (not a chance, though!!!!). She goes through her own phases of acting out when the “Madison attention” factor is low. Understandable, yet challenging! If anyone has any secrets for raising 3 children and staying sane, please pass them along. We could sure use it. We’re also looking for a good night’s sleep, but fear that won’t happen for 18 years.
As far as I know, I am still employed despite the Intel lay-offs that have impacted many of my friends and colleagues. I plan to return to work part time in January, but it is still too difficult to envision how our household will operate when I go back. Jim is enjoying his (relatively) new job at EDAW, but will probably start traveling soon - all West Coast, but it will still be tricky for our schedules.
My folks visited for 2 weeks earlier this month and my sister and her husband will be coming for Halloween. It’s actually kinda nice to have the extra help and visitors in the midst of chaos. As always, we love hearing from and seeing all of you. It is friends and family that truly matter and make a difference in our lives and we are so blessed to know all of you.
With Love, Jim, Tricia, Madison, Nathan, & Zachary
PS – for those of you that sent baby gifts, but did not get a thank you yet, please know that we are enjoying those gifts and appreciate the thought. I’m averaging less than 1 thank you card per day in no particular order.
