Full Time Job!

Once a mother has a child, she begins to realize that she has a new full time job. I have had the opportunity to have my full time mom job for nearly 8 years, while holding a part-time one at UH. Well my friends, I have been working overtime lately and it's not at UH, though it's oddly similar. So, I guess one can say that I'm bringing my work home with me!
What does all of this mean? Well, last week, Jaime had 3 appointments (in addition to his therapies) and Jared had one. Then, today Jared had another one. So, I've been a taxi driver to appointments all over the place...and none of the 5 appointments were in the same place. When I'm not playing hospital shuttle bus, I've been busy coordinating at least a week's worth of appointments and procedures in Cincinnati. And my final mom task in which dad helped with was creating a playroom for the boys! Don't get me wrong, I LOVE my full time mom job...I mean with a boss like this...who wouldn't?!?

So an update on appointments since his pulm one...Jaime went to the pediatrician for his Prevnar booster (pneumonia vaccine). He weighed 25lbs 2oz. Jared saw the pediatrician, too and he was diagnosed with reflux! He had it pretty bad as a baby, so I guess it's resurfacing. The next appointment was for Jaime...he had his hearing test and PASSED this time! Woohoo....thank God for ear tubes! He still has a bit of a delayed response, but overall did well!
Today's appointment was for Jared at the Hemophilia Treatment Center. He's 63lbs and is doing great. In spite of his joint bleeds, his range of motion measurements turned out great, actually much better than expected! :) He's also getting a few muscles which is making his veins better. We're aloud to play with his IV doses a bit. We can dose more when he's more active and less when he's not. To be honest, this is what I have been doing, but it was nice to hear it from the physician. Jared had some labs drawn today and they gave him his dose of IV factor in the clinic...pretty much a routine visit. We did talk about Jared playing some sports. The dr. said ice skating was great, as long as he's wearing a helmet (he is) and the PT said it's really good for strengthening his ankle joints (he's already had 2 ankle bleeds). This was also good to hear. It's one thing for them to say it's OK when he's 4 or 5, but now that he's advancing levels and taking private lessons...I wanted to make sure it was "safe." Now, hockey would be a whole different story! We were told not to let him do any contact sports, we were thinking soft ball again, but the dr. wasn't overly thrilled about that due to sliding into the bases since he's already had 2 hip bleeds. So, I think it will be swimming (this is a biggie amongst hemophiliacs) and tennis (as long as he's careful with his swing not to injure his shoulders). Wickliffe does allow for 8 year olds and up to golf...we'll see...I'm not sure Jared has the patience for that, but he may try it. Also a good one for hemophiliacs...as long as properly done! ;) The last thing we talked about was sending Jared to Michigan for hemophilia camp! He's really scared about it, but I think he'd LOVE it! I think he's more scared about being away from us for a week. Sign up for camp is coming soon, so we'll see! We also need to figure out what's up with Jaime...which brings me to my crazy phone calls.
It sure has been interesting trying to coordinate all of Jaime's appointments in Cincinnati. They now want him to go to the aero-digestive clinic (which consists of GI, pulm, ENT and a feeding team), in addition to the hemophilia treatment center, a sleep study, a heart cath and a bronchoscopy. Of course I spoke with a NP today who said that she'll be presenting Jaime's case on Wednesday to the team and they will decide what tests to do and when to do them. And yes, once again there was talk of Jaime's tonsils coming out. Also talk of GI and feeding taking lead on Jaime's case down there. It's all about the growth! Which brings me to my last item to mention...
Jaime STINKS at eating now! He's officially been off of steroids for over a week and his appetite sure is showing it. He's still a night time feeder with an average of 20oz a night, but during the day, we're lucky if we get 8oz of Pediasure in him. He just nibbles on things here and there and hardly drinks. I try to give him juice, milk and water. He will drink some apple juice, but only Juicy Juice brand apple juice and only sips...and he won't drink milk by itself, he will occasionally drink it mixed with Pediasure. He's been throwing up again at least once a day, too. Everyone told us the feeding would be the worst and they were soooooo right!
The final thing to share is that our flooded spare room is done and has been transformed into a playroom for the boys! I finally have a toy-free living room! It looks almost big in here! Now that the playroom is done and organized, on the agenda for tomorrow is to rearrange the living room! I have a feeling the garbage men won't be happy with us this week, but it's soooooo great to go through and finally get rid of things! Here's a pic of Jared at his new desk in the playroom!

Well, that's all for now...time to to get things ready for Jared for tomorrow...remember the full time job that never ends! ;) Wishing everyone a great week and for those of you hit by the latest storm...be safe!