Happy Thanksgiving from our favorite turkeys!
So much to be thankful for this year with lil G – no more concerns over his hearing, no more wondering if there is anything else going on with his brain, no seizures thus far, and more importantly, lil man is making so much progress in everything he does!
Last week, his OT mentioned he had changed so much just in the week – namely, he is not only opening his hands and holding things, but he even started holding his own bottle! This is huge!
He is doing really well with feeding himself milk, and we are hopeful we will be able to get him to start taking sippy cups soon. In addition to this milestone, when he is really motivated (usually bread or cookies), he will pick food off his highchair tray and put it in his mouth – this is another milestone we have been working towards for a very long time! He will shove as much food as he can fit, so we have to keep a close eye so he doesn’t choke himself, but he is doing awesome. He is also sitting pretty well and for longer periods of time, and is doing pretty well standing when motivated. He does not care for being on all fours (as if to crawl), but we will keep trying.
He has his 15th month check up and an appointment with an endocrinologist next week, and his opthamologist in a few weeks. He was evaluated for Orientation & Mobility therapy last week and we will probably start those therapies in the next month. They work closely with his vision therapist to help him overcome any fears of moving and being mobile due to being unable to see. Having said that, his vision therapist also think he is doing awesome – he seems to focus on things he cares about (people he knows, favorite toys), but has a hard time filtering out the background.
So, as usual, lots coming up and lots going on! He also will start school in 6 weeks!! More about that in another post….until then, here is lil G with Daddy P at the beach – he loved the sand!
And……no further abnormalities with G’s brain! YAY! G’s only other MRI was at one day old, at which point they confirmed his ACC, but were unable to confirm any other conditions because his brain was so small at the time. There was talk of polymicrogyria because the folds in his brain looked a little funny, but they needed his brain to develop more to be sure. And now we are confirmed he does not have PMG!
We are very thankful for this good news. Regardless of what they had to say, it wouldn’t change our current course of treatment, but it is a relief to have one less thing to worry about for the little man.
Thank you for the ongoing prayers!
One failed newborn hearing screening, two sedated ABRs, one (unsedated) 5 hour ABR while trying to make a newborn sleep with electrodes all over his head, 4 unsuccesful hearing test attempts at a doctors office, and FINALLY it is proven that G has NO hearing issues whatsoever!! G had his (LAST!!) ABR on Friday from which our angel of an audiologist, Liz, confirmed G can hear as well as any one else, and has no risk factors beyond any typical kid. We were so thrilled with the news. Liz has performed 3 ABRs now for G and is the most compassionate person I have ever met – she gives out hugs profusely (with the tissues) and has lessened the stress of the experience in so many instances. It was such a relief to know we won’t have to see her again (!), and we should be pretty much done with G’s ongoing ENT visits, with the exception of the tubes in his ears! The less doctors the better!
Even with the great news being delivered, I noticed it was taking longer for them to call us back to see G than last time. After an hour of waiting they called us back and we learned G did not do well with the anesthesia. They used something called Laryngeal Mask Airway, with G, which caused breathing issues and they had to put a breathing tube in. They think because of his hypotonia (low muscle tone), it probably affects his lungs too and they had a hard time keeping up while sedated, and then had an even harder time getting going once he was off the sedation. When we got back to recovery, they had him on oxygen. I noticed the nurse overly calm while she handed me G and went to call the anesthesiologist – without actually saying anything she asked him to come right away…little did she know we have seen this MO in the NICU plenty of times! She was worried his Oxygen level was so low, and the doc was equally concerned. After learning more about G and his usual breathing patterns (which are a little funny to begin with), he noted that because we live close to the hospital and seem responsible (!), he would let us take G home in a few hours if he improved, but normally would require he stay overnight for 24 hours. G’s oxygen levels did improve and he has been fine ever since.
More than anything, it was a reminder that G isn’t typical and we can’t take typical procedures lightly. It will definitely make us think twice over anything else he might need next…fortunately now that his hearing is resolved and we have his second MRI, there is nothing on the list!
We hope to hear from his neurologist in the next week regarding the results of his next MRI. We are sure that whatever the outcome it won’t change what we are doing now, but it will provide us with additional information as to how his brain has developed over the past year and hopeful all else is normal.
Thanks for the ongoing prayers!