My little man turned 18 months old on Monday. 18 months seems to be the middle of the bridge from babyhood to big boy land, and it is simply amazing to see all the changes at this age. I love it. Nathan's speech is finally coming along, and it is so much fun seeing him try to mimic syllables and sounds that we make. When his OT was here the other day, Nathan brought over his favorite Dr. Suess-ish book, looked at the cover and said "Go Dog, Go". The little dude doesn't say much, but he is definitely retaining every single morsel he is exposed to each day and throwing this knowledge out there whenever he feels the need. I love this age.
His 18 month appt yesterday was the easiest I think we have ever had! His pediatrician reminded me that we had one other fairly easy appt quite a few months ago where everything was smooth sailing for a little while before we hit some more bumps in the road. That is one of the hard things with this disease...you can be truckin' right along fine and then all of a sudden run into some rough spots for a while. Thankfully, Nathan is looking better right now than he has in quite a while. We are constantly changing our normal around here, and I think we are finally adjusted to everything right now. Let's just hope that it stays like this for a while.
That being said, we had a tough pulmonologist appt last week where it was brought up that the recent troubling things we have seen with Nathan's breathing is more than likely some disease progression in his core muscles, specifically the muscles that support his respiratory system. We are currently in the works to figure out if we need to start treating this now or if we should wait a bit longer until we see more progression. If we treat now, we are wondering if we can help slow down the progression of this respiratory muscle weakness...unfortunately, no one knows that answer to that, so we are in limbo with trying to figure out what to do and what insurance will allow us to do at this stage.To hopefully answer some of these questions, Nathan will be undergoing an extremely painful aterial blood gas tomorrow. It is a test that I have been denying throughout Nathan's life and opting instead for a venous blood gas to give us the information we have needed. However, as much as it hurts me for him to go through this, we have reached the point where an arterial blood gas is warranted. We have an incredible crew at our hospital who are extremely considerate to Nathan's needs and have some tricks up their sleeves to minimize the pain as much as possible for him. Please pray for the little guy tomorrow. He gets poked and prodded a lot, and we are all as used to that as we can be...but I have to admit that I am quite apprehensive about this test. It doesn't help that they are going to have to do 2 of them...one at his baseline and one after he has been on oxygen for 30 minutes. So please, remember Nathan tomorrow and pray for comfort for my little guy.To end on a positive note, Nathan is almost on the growth charts once again! He is up to 20 lbs. 12 oz and just has a few ounces to go before he reaches that 0%. HA! He definitely has his appetite back right now, and we hope that it stays for a while this time. We definitely feel more at ease with his weight gain right now, after suffering through weight loss all summer. Hopefully this will be the little extra help to keep the g-tube talk at bay for quite a bit longer. And I am really glad that Nathan's pediatrician said that she is pretty sure she can get our insurance to approve the Synagis vaccine to prevent him from getting RSV this year (really, really expensive monthly shot that he will get probably from November to April). This is a HUGE weight off my shoulders since Nathan is in the "serious risk" category if he gets RSV because of his neuromuscular problems, especially the resp. muscle weakness. Oh, and one more bit of fun news from this week...I am so excited to say that I am now the UMDF Ambassador for the Gainesville, FL area. There are 3 other relatively new ambassadors in Tampa, Orlando, and Sarasota, and together we all have some really neat ideas coming up for awareness and fundraising for mito and the UMDF. The 3rd full week in September is Mitochondrial Awareness week, so I hope to devote that week on this blog to facts and info about mito. In addition, I am trying to start a yearly "Photos for Mito" fundraiser to take place on a Saturday in November where I will offer mini photo sessions and a CD of 5-10 pictures for a donation that will go directly to the UMDF. This is all very very new in the planning stage, so I will update more as the plans continue. Such an exciting time for awareness in our state!!