I've actually started and stopped this update numerous times. Its been a difficult week. First and foremost our family said goodbye to an incredible man. Mark's grandfather passed away at the age of 92 this weekend. Our hearts are saddened to say the least and no matter how long we've gotten to have him in our lives, you are never quite prepared to say goodbye. I am comforted by the fact that he lived a very full life and taught all of those lucky enough to know him what was truly important. He worked hard, played hard, loved deeply, and even until the end, always kept his sense of humor.
I was fortunate enough to have known him and Marks grandmother for many years before she passed away last year and they had a particularly inspiring relationship. They had regular dates that often involved taking long drives, Bill Grays on Sunday nights, and even dancing until that last year. You would catch them holding hands walking wherever they went, or even holding hands sitting together on the couch. It was obvious to any onlookers what a loving couple they were; Yet they never took eachother or life too seriously. They could surprise you with their quick comebacks or gentle teasing. This description does not do either of them justice but both will be deeply missed and I hope Mark and I honor them by living even half of the example they so generously shared.
Okay well how do I transition from that?
Well, We've had a lot of inquiries about updates on Alex so here is the latest: We've met with neurosurgery this week. Its a little funny actually because Mark and I were going to go in there like gangbusters and demand to have a plan and the plan better not be to wait for an emergency before the shunt is replaced which it kind of felt like we were doing in previous appts. But as soon as we started to list our concerns with Alex, and especially how he has a complete lack of drive to eat, and is barely gaining weight which is very different from his baseline and not getting better despite numerous new reflux medicines, new medicines for his heart and lungs, or even oxygen. The neurosurgeon examined him and said he agreed a shift of the fluid in the ventricles in his brain could contribute to the feeding issues, and that is head did seem fuller overall and some other stuff I'm sure he said but all I heard about then was "Okay lets do the shunt revision......
Monday"........... Ummm.....wait, what? We were not quite prepared for that. So then we ofcourse had to mention the possible cardiology issues and just kind of felt panicked overall. We left with the agreement that if cardiology clears him for surgery, it would indeed happen on Monday.
Then today we had cardiology appt. Alex got hooked up for his EKG, had several other tests done and then we met with the doctor. He was great and took a lot of time with us and was very reassuring. He stated that he was confident that the issues with the pulmonary hypertension are really secondary to his lung disease (BPD) and that as Alex grew and his lungs got healthy, his heart would not have to work so hard. He does not feel that he has any primary issues or defects with his heart. HUGE RELIEF. The treatment needed is really just to treat the lung disease, so that likely means continued oxygen so his body doesn't have to work so hard at that but other than that, its just monitoring. Did I mention HUGE RELIEF? The cardiologist said he doesn't need to see him again for another three months and that he is completley cleared for surgery...... Did I mention Monday? We are ofcourse nervous about another surgery for our little guy but also hopeful that maybe, finally after all of these weeks of worrying about him and wondering what is going on, that this might be exactly what he needs to feel better and more like himself!!
Nicholas modeling his new clothes
Giving Grandpa his famous smirk
Aunt Becky cuddling with Alex
Alex caught sleeping on the job again but still looking cute as ever
"NO, I'm up, I'm up, is my hair okay?
Nicholas is in awe......not with his brother, not with us.....
but with his rattle.
Its the one thing he will consistently give his best smile for.....
and mom was at least around to catch it on film.
Alex has a new trick too, he's found that if he hits the triangle shaped box, it lights up and plays music. Hopefully he won't get confused and try this out on his brother any time soon.