Wow. It's hard to believe that our big huge medical journey with Dominic started only a year ago. Roland and I played the "where we were in Dom's labour a year ago at this time" thing on Friday night via text because he was working at the bar. It's fun. I love doing that to relive such a fantastic experience. We did it with Rosalie's first birthday too.We have come SO FAR since he was born, 2 Open Heart Surgeries (OHS), battling sepsis, caths, ECHOs, Ultrasounds, meeting with specialists... to being where we are now, where there are still lots of follow-up appointments, but we have settled in to our version of normal. We don't need to worry about Dominic's life more than any other 1 year old child. He is stable and I am eternally grateful for that.
Back in June I called all of the speicalists that I figured would want to see him in the near future to see if I could book appointments for sooner or at the end of the summer in order to give us time to go to the lake and there were a few interesting things that came from the appointments we had before having a break. One was with his Audiologist. This is the doctor that was supposed to put in his eartubes during his lip surgery, and got the anesthesiologist to tell me that it didn't happen. So I was really looking forward to this appointment so I could just get more exact answers as to why the eartubes weren't put in. The doc explained that looking in to Dominic's ears there is not any fluid build up, the reason that we were getting inconclusive results back is because the three bones in Dominic's middle ear are not how they should be, they are too small, so they don't rub together to conduct sound like they should. When a headband like device was put on Dominic that causes vibration with sound he could hear perfectly. So he doesn't have any inner ear problems, it's all middle ear. So we were told that they would book another appointment in the future to get a device for him, look at his ears closer, and come up with options. So that's where we are right now with his audiologist.
We also had his G-tube clinic to just check how things are going with that, and everything looks great. So nothing really to report there.
The last appointment we had before heading up to the lake was interesting. The night before, Dominic had thrown up BIG TIME. Like HUGE! To the point I was worried about taking him to the lake. Fortunately, the appointment we had the next day was with his pediatrician, so she was the perfect person to ask about what is going on with him. When we got there it turned out she had a student working with her that day, which I don't mind, I like helping people learn, but she kept pressing me to ask her the questions I had rather than Dom's actual pediatrician. I found this frustrating because this girl had never met Dominic before and due to his 22q he's a pretty complex case. I refused to ask any questions until his doctor got there and she eventually relented. Once the doctor got there we went over all of the assessments that the student had gone through and the pediatrician noted some things that the student had missed and some related to questions that I had intended on asking. The first was during his cap refill test (this is where they push on a nail bed and see how long it takes to turn from white back to normal) The student did his hands, which were fine, but his left foot takes longer to refill and looks puffier than his other foot. I was wondering if the puffy-footness was because of his stroke, thus less developed muscle in his left foot. The doctor acknowledged that this could be why, but wanted to run some blood tests to rule out clots somewhere. Another thing that she noticed was that Dominic's legs are different lengths by about a centimeter. Once again this could be because of the stroke and less muscle tone, but she wants to rule out scoliosis, so we need to go for some medical imaging sometime in the near future. When we got to talking about Dominic's puking the night before, she chalked it up to him probably catching a bug somewhere. She said that it shouldn't prevent us from going to the lake, but if we have trouble keeping him hydrated or worry because he starts to get lethargic or show more concerning signs, we should take him to emergency in PA and they would get in touch with her. Dominic is so complicated she advised against just going to a clinic, and she advised that we take some pedialyte with us because that is a really good way to ensure he stays hydrated and it's easier than formula to keep down. He did have a bit of an issue at the lake the night after we got there, huge pukes again. So it's a good thing I went to get him the pedialyte just in case, because we did end up using it for about a day. For the most part I think Dominic was just due to catch something. One of the common issues with 22q kids is an undeveloped immune system and fortunately Dominic doesn't get sick often, so he dodged that bullet with is genetic abnormality, and I am thankful for that every day, and I am glad he was able to fight whatever he got all on his own. Also worth note, is that he also hadn't had a good poop in a couple days, which if you remember, was an issue he had in hospital after his lip surgery that almost kept us there longer. So, I can also blame some of this on Dom withholding his poop. Silly boy.
Now that the summer is winding down we have another handful of appointments coming up, mostly ones that I have postponed so we could all have a bit of a break. We will be paying for that bit of a break while our schedule fills up with people that want to see him for one reason or another. This week we have appointments with his PT, OT, SLP, and an ultrasound. Next week is his clinic that I am really looking forward to with the Cleft Lip/Palate team. This is where we will get to see his pediatrician, audiologist, dentist, plastic surgeon, a specialist SLP, and, in Dom's case, his hematologist. And at the end of the month he's scheduled for an MRI to see how that brain of his is doing and to get a more extensive and detailed picture of how his stroke has effected his brain. To be honest, I'm not looking forward to that one. Part of me doesn't want to know and just deal with it as he develops... but... we'll see... maybe it will be good news?
OK! Now for the fun stuff! Dominic had his first birthday party on Saturday and we all had a great time. For the most part I had no idea who was going to come. RSVPs were not required, and I did get a few, but I tend to take a pessimistic view on these things. But our turn out was really great. Higher than I expected, but the amount of food I had was perfect. There was so much love and support in our house that day! I appreciated every single person that showed up, just the fact that they would take time out of their Saturday to make Dominic's day special and show their love for him was amazing. A couple of guests hadn't even met him yet because although I intended to have a baby shower for him for everyone to come to, the first 6 months of his life were so hectic that there never seemed to be a good time, and after 6 months seems a bit late for a baby shower. But I loved having people over for his First Birthday. SO much love. Such a good choice to throw a party.
Dominic had his first ever cupcake, at first he just enjoyed playing with the icing (so squishy!), but with a little help from Uncle Tom he figured out it was edible...
I can't wait to see what this year brings! Dom has come so far in his first year, and I know we still have challenges ahead, but he's a tough little man! I'm sure he'll knock anything out of the park that is thrown at him. ;)
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