It figures

Doesn't it just figure...

• that after spending months working on the right school placement for Gracie and finally, after weeks of jumping through insurance hoops, getting her nursing approved and having a nurse start part-time (all at the requirement of the school), the district decides to change the structure of the program and eliminate the need/ability for her to have her private-duty nurse attend school with her.

Yep, that's right. The dreaded process of establishing trust, rapport and a routine of responsibilities with a nurse began the first week of March. The very next week, I was informed that due to the needs of many other students in the SELPA (Special Education Local Plan Area), they were working on restructuring the program at the school to include an on-site RN and health aides instead of students attending with their private nurses. While this is a great development for the community as a whole (due to the numerous deaf/hard of hearing students with multiple medical needs and multiple disabilities), it was kind of like having the rug pulled out from under me (and the new nurse who was hired for certain hours and to eventually go to school with Gracie).

I had finally given in to the idea of having help again and had settled with it easier knowing that some of the hours would be with Gracie at school instead of all in our home. Now the only way to utilize those hours is to have someone work an 8-hour day after school. I am just not sure that I want to have someone in our home until 9 or 10 pm. And, there aren't agencies/nurses, for the most part, who staff four-hour shifts. Ugh.

Doesn't it just figure...

• that when many of the kinks get worked out for school placement, new kinks are made. AND... that the regular school year will have less than two months left once Gracie is able to start. She has, essentially, lost the entire year. I think next year will be a repeat year of "kindergarten" for her.

Doesn't it just figure...

• that when my husband went out of town for two days (work related) on Friday afternoon, both kids woke-up in the middle of the night with high fevers and congestion. Gracie slept only about an hour on Friday night. Preston's fever was as high as 103.2 without constant Tylenol and just broke on Tuesday night. Gracie was down for the count until Saturday evening, rallied a bit and then had a rough night Saturday. By Sunday at noon, she was completely back to herself. Preston, while fevery and stuffy, was happy and playful as long as the Tylenol was on board.

Doesn't it just figure...

• that the night that John got home (Sunday), and offered to be in charge of Gracie while I attempted some rest, Gracie had a six-hour stretch of sleep. And doesn't it just figure that Preston did not!

Doesn't it just figure...

• that on Tuesday night Gracie had the best night sleep she's had in months and I had to wake her from this peaceful slumber at 6:30 am to prepare to leave for the hospital. She had (finally) fallen asleep at 12am.

Doesn't it just figure...

• that on the same day (Wednesday) that Gracie needed to be at the hospital at 8am for a couple of tests (Upper GI and Swallow Study... don't get me started on this) that Preston wakes up with a more obvious rash than the splotchiness from the night before. After I returned home with Gracie, I left her in her new nurse's care, sent a very tired, graveyard-shift working husband to bed and got Preston in the car to drive to the pediatrician's (back down to the hospital area) and have his rash checked-out... just in case.

He received his postponed dose of MMR (the "12 month" dose) last Wednesday (the 11th), and even though I was fairly certain he was fine and even mentioned Roseola to John and Gracie's nurse, I wanted him to be checked out. He is fine... and likely has Roseola - - as a case of "mock measles" would just now be showing-up rather than ending. Anyway, he's fine and it was good for his pediatrician to see him without his sister present... he was far less stressed and much more "himself."

Doesn't it just figure...

• that when the kids seemed to be on the mend from their "ick," I felt it coming on. I have been drinking fluids like crazy. taking medicine and trying to deny it, but I have the stuffy nose, headache and sore throat to prove that I am losing the fight. With the schedule being kept around here, though, there is no time for this mommy to be down for the count.

I did, however, take an hour on Sunday when John got home and to get a LONG overdue pedicure... the first in almost a year. While it was rushed (I arrived less than an hour before closing), it was exactly what I needed to get through the rest of the day/night. It was the first hour of true "me" time since we moved.

Doesn't it just "fiscally" figure...

• That in the same month that our old house finally is rented, there is a problem with the garage doors that will eat up all of the rental income for the month. And, doesn't it also figure that in the same month our old washer and dryer finally did their last loads, the lease on our family car was up.

The good news... the house is rented. Other good news... "June Cleaver" and "Harriet Nelson" (my new washer and dryer) are amazing "housewives" and do fabulously large, quick and super clean loads of laundry. The only bummer with them is that their price didn't include folding and putting away the clothes!

A Little Medical Update:

• Gracie's current weight is 25lbs... up from 23... and hanging in at 25lbs despite the recent "ick." She is slowly closing the gap on her brother - - he's got her by one pound right now.
• Saw the cardiologist, who unlike the GI doctor, took the time to listen to me, spent 90 minutes with us doing his own pacer check, echo, and additional pacer checks to observe Gracie's whole body twitching with each beat of her heart. Turns out, despite the GI doctor telling me I was wrong, the cardiologist confirmed that Gracie is most definitely "diaphragmatically pacing." In a nutshell, one of her pacemaker leads is too close to her diaphragm and for a good portion of the day, her diaphragm is stimulated by the current going through that lead, which causes her whole body to "pulse." He made several adjustments to her pacemaker settings in the hopes of alleviating this discomfort, but could only do so much to keep her settings within safe ranges as she's completely dependent. If we can't keep her comfortable enough, the only other option is surgery to move the lead... that's full open-heart surgery... so we are trying EVERYTHING else first. The good news in all this is: he's proactive, listens to me and he truly cares about Gracie. While this issue doesn't explain or solve her numerous GI/neuro issues, it definitely helps to explain the extra difficulty with feedings since her surgery last August. Slowly, but surely, we are getting back those five pounds.
• Saw the new opthamologist... she's nice.
• Saw the new dentist... he's SUPER nice!
• Received her new PT/OT clinic recommendations... each therapy... TWICE a week. While that is a lot... A LOT... the fact that they've made a recommendation like that rather recommending "consultation" proves the need for the services both in clinic and in her educational setting. I have no idea how much she'll actually tolerate, but am thrilled with the aggressive recommendation. At least I know that part of her team wants to push her to reach her full potential.