Really could use some positive news about Alexander and soon! I'm overwhelmed emotionally with the waiting and referrals. I was waiting to get results from a recent doctors appointment before updating everyone, but I'm realizing that the waiting process never ends!To start, Alexander's heart is doing good, as of now. Next week we have an appointment with his cardiologist and electrophysiologist. Fingers and toes crossed all looks good for him! Since his heart Catherization, Alexander has been having episodes that resemble possible seizure activity or pacemaker problems. A check of his pacemaker was completed during Alexander's routine cardiology appointment 6 weeks ago and there were a few odd things appearing, so some of the settings in his pacemaker have been changed. After having an EEG done a few weeks ago and meeting with his neurologist, the EEG showed no signs of seizure activity! Yay! However, he wants to do a sonogram because of the size of his head, as well as, because of the the results of Alexander's MRI he had done when he was a newborn. This appointment is on September 12th. In addition, a few weeks ago, a bump appeared on Alexander's spine. It comes and goes and we were referred to a pediatric surgeon. His pediatric surgeon then referred us to a neuro surgeon. So we are now waiting for an appointment for that!
On Tuesday, we met with his Orthopedic and had x-rays done of his feet. A bone in his left foot appears to be vertical and should be horizontal. So now we will be meeting with an orthopedic surgeon on September 16th to discuss if he needs surgery or just a brace. Lastly, a few weeks ago, I was reviewing a final report from a genetics doctor that examined him when he was a month old, who orgininally told us all was good. However, I discovered that the report suggested we meet when he was 5 months old because of a possible disorder! To say the least, I was a bit upset finding this out a year later. Our appointment with the genetics doctor is on September 10th. My anxiety is beginning to set in. As I mentioned, I'm really ready for some positive news from the doctors.
Given all of the various appointments that we are waiting to attend, our 18 month old is thriving! Alexander is still not speaking but he has begun to produce more sounds. He isn't walking yet either, but is very close, with pulling himself up on everything, cruising, and walking when lead by our fingers. Occupational therapy is going well too! Alexander's food intake has increased tremendously and we are now working on teaching him to drink from a sippy cup and use utensils. Despite him not talking, Alexander continues to surprise us everyday with what he understands and can accomplish. He may be delayed by a few months in most areas, but cognitively he is right on track, if not a little further ahead! We have a very smart superman that is ready for the rest of his body to catch up!
We are praying more sounds will continue to be produced and that he starts forming words. We are also praying that the lump on his spine is nothing serious, that he isn't having any problems with his pacemaker or that there is nothing neurologically going on and that in fact, he just has a large head. We are also praying that Alexander won't need surgery on his foot and that he doesn't have any sort of genetic disorder. Overall, a clean bill of health is what we ask for! SO continued positive thoughts and prayers are appreciated for our Superman to stay strong and healthy and that these hiccups we are encountering to be nothing serious!
We wish you all a wonderful holiday weekend!
