Back-to-School Week

Today, Jared met his 1st grade teacher, Mrs. Morris. He's very happy to have some friends in his class from last year...even a few from preschool. He likes his classroom, which was rather large compared to last year's class. The kids were just starring at Jaime asking what was wrong with him. Jared, proudly would announce that Jaime was his baby brother and "he comes with oxygen, a pulse ox and everything." I LOVE it..."he comes with..." It was really funny to hear Jared describing his brother to everyone.

Jared will have recess for the first time this year. We took him out to the playground and went over a few rules with him, hopefully he'll adhere to them. All we want is for his recess time to be safe! Regardless, tomorrow he will have to start getting Factor infusions again (I stopped giving him his infusions for a few weeks to let his veins heal, knowing full well, we'll be back to 3 times a week during school), this he is not thrilled about, but it's for his own safety. The school does not have a nurse on staff, she is an aid. She's really kind, and knows Jared like the back of her hand, but she is not able to give Jared his medications when needed, so the prophylactic Factor is a must. I'm a little worried because the principal just gave Jared's teacher his hemophilia information while we were there sitting in the room. It will be a few weeks before we have our 504 plan (medical plan) meeting with teachers. I just hope nothing "major" happens between now and the meeting.

I will be taking Jared to school tomorrow for his first day. He really wants to take a bus, but unfortunately, I don't know what bus to send him on. I called the bus garage a few weeks ago to ask if they would pick Jared up at our house this year because of Jaime's medical condition (not to mention all of his equipment and compromised lungs, especially in the winter). The community bus stop is at the corner of our street and the main street. Clearly, Jared can not walk down there himself. I was told this wouldn't be a problem, then today I was told that they wouldn't accommodate us, even though a bus comes down our street and passes our house every day. I don't get it. One person told me that "anyone can come up with a good story not to have to walk to the bus stop." Can you believe it? I'm so glad, Jaime is a "good story." ARGH! Yes, I'm furious!!!

All that aside, I took some cute photos of Jared on the way to meet his teacher and in his classroom. He was both excited and scared. Once in his classroom, I don't think he stopped talking for even one second! Hopefully he'll be a little more relaxed tomorrow.



As for Jaime, he's doing well. I spoke with Michelle in Cincy today, she's Dr. Hirsch's NP. She said that all of Jaime's heart transmissions looked NORMAL! We have all concluded that the brady episodes were due to the malfunctioning of the monitor. We can send the heart monitor back to them this week! Woohoo! This was AWESOME news for us! Also, his Sildenafil is due for a refill. Dr. Hirsch has decided to keep Jaime on the same dose that he left the hospital with and is going to let him outgrow his dose. This is the medication he takes from his pulmonary hypertension. This is also good news because our co-pay for this monthly medication is several hundred dollars.
Now if only we can figure out his schedule...he's been waking up several times a night acting like he's STARVING! Every 2 hours he'll wake up, drink about 2 ounces and go back to sleep. This is odd for him, he sees Dr. Hellerstein next Monday, we're going to ask her about his feeds. We know that we can't go up on his feeds because he peters out as it it too much work to suck, swallow, breathe, so perhaps we can start to add cereal to his diet? Oh and tomorrow he is set to have some labs drawn to check his renal function.

Anyway, here's a cute photo of Jared showing Jaime how to play his DS, headphones and all. (Jared put the headphones on Jaime when I was switching the laundry, when I came up and saw it, I just had to grab the camera.) Actually I think Jaime was telling Jared what to do in this photo! HA!



Here's hoping for a great week ahead for all of us!!!! :-)