Friday, March 29, 2013

Squeaky Toy

Whew...I'm glad this week is almost over and that Sunday is Easter! It's been busy with our usual handful of doctor appointments, but also because I went back to work. Last Sunday was hard! After being off work for almost 5 months, it was finally time to return. I remember being sad with my first  when I went back, but this was different. I have an overwhelmingly fierce protectiveness for Camden that makes me scared to leave him. I feel as if I'm the only one who can take care of him, though this was proven this week to be untrue. I could have taken a boat to work with all the tears I cried on the way. It was miserable. However, once I got to work it was actually good. It was nice for my mind to take a break from Ds and all the medical junk . I got to channel my energy towards helping other sick kids and I must admit that I missed it. It was so great to work with friends again and to have real gown up conversation. I'm only part time so it really isn't all that terrible. I'm blessed to have an amazing job with awesome co workers.

Wednesday was Camden's 4 month check up which also meant shots. Ugh. Each time he gets shots his reflux flares up and he is miserable. I've debated delaying vaccinations (that's what some moms do) but decided it's way too risky. So, he just has to be miserable for a day or two. Camden weighed in at 11 lbs 4 oz and was 23 inches long. He gained 4 ounces since last week which makes it one of his slowest weekly weight gains to date since he's been out of the hospital. It's still within "normal" range though. Dr M has always commented on how great his strength and tone is for having Ds and said it once again at this appt. It always made me incredibly happy each time thinking that my son was one of the exceptions to the rule until...I read from a lot of moms that this was the same for their young baby. Don't get me wrong, I'm still very proud of my son but I have learned that there is a big difference between strength and tone. Camden is very strong but it doesn't mean he has great tone. I think the hypotonia will become more evident the older he gets. I can definitely tell a difference between holding him and another baby of the same age. Camden kind of melts or slumps when you pick him up under the arms where as a typical baby feels more firm and holds their upper torso, neck and head up. The rest of the appt went fine (except for the shots) and there were no concerns. No more pedi appts for 2 months!

We have way too many pictures of Camden on exam tables!

Today we had our first ENT appt. I decided to keep it because I know being the obsessive paranoid type of person that I am, it would drive my nuts if I didn't get this checked out. I'm sure you have read in the past about Camden's floppy airway. We pretty much know that he has laryngomalacia but we never had an "official" diagnosis. The main symptom that he has is noisy breathing. This is why I call him my "squeaky toy". It's just an occasional squeak and its so darn cute. He has inspiratory stridor when he gets excited and sometimes when sleeping. This is a high pitched sound that is heard when inhaling. He also gets mild chest retractions when he gets really worked up. I'm so used to stridor and retractions being a sign of respiratory distress, but in this case it's "normal". The only way a diagnosis of LM can be made is to visualize the airway with a scope. So, I had to sit on a chair and hold Camden in a way to make sure he was absolutely still. The ENT then runs the flexible scope through the nose until he can see the airway. It's very quick (maybe 10-15 seconds) and then it's done. I was SO shocked at how well Camden did! He did not cry at all. In fact, he didn't do much of anything! I guess he got used to all the NG tubes while in the NICU. Dr. V said that his airway looked really nice and open and that it's just a mild case. That's always good news! He did see a lot of irritation from the reflux and so I'm trying to get our pediatrician to switch him over to a different medication because Zantac is NOT cutting it! He also had a tympanogram done to check how well the ear drum is moving and that came back normal. He will have a hearing test done in three months since hearing loss is common with Ds, but other than that we are done with the ENT for now. Yay! Now we can enjoy Easter weekend!

Taking a quick snooze before the scope.

Having some Good Friday fun at Chuck E. Cheese's.

It's a very serious game!

Ending the night at Olive Garden for some dinner 
with the family.

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