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Aaaaand...exhale...

Today was the most productive day evah. For real. I should back up though. I have been sick for the last 12 days, the first 8 of which were miserable. My only symptoms were a fever that made me feel like I had been hit by a truck (but also came down with ibuprofen, often fooling me into thinking I was better) and a dry, unproductive cough. I'm pretty sure that if I had been able to just lay around and do nothing for the first couple of days, I would have gotten over it pretty quickly, but YEAH RIGHT! I have 5 kids and it's May. Ain't nobody got time fo' dat. I finally hauled my sick self to the doctor last Wednesday afternoon. I had to cancel respite for the whole week last week, which really stunk because she's out all week this week too. Her son is graduating this week and I didn't want to risk having her catch germs. She was sick quite a bit in April with something very much like what I had, so she didn't want to risk catching anything.

Anywhoo, I dragged my sick self to the doctor last Wednesday with both of the little girls in tow. That was super fun. Raya is a pretty good patient but she really stinks as a tag-along. She's so impatient and I think she actually gets jealous when the doctor isn't interested in seeing her. It's totally understandable and kind of funny. I got swabbed for the flu, which was not funny. There's nothing funny about having a stick jammed up your nose. That was negative though, which we expected because the flu doesn't last 7 days. That left 2 other options: walking pneumonia or a secondary bacterial infection that was probably a result of whatever I'd had earlier in the week (like maybe flu). My lungs sounded awesome (really, no sarcasm. clear as day) so she was kind of at a loss, and did what all doctors do when they're at a loss: prescribe 5 days of azithromycin and say, "come back if it doesn't work." I finished the 5 days last night and although the cough isn't completely gone, it's most definitely better and I haven't had a fever since Thursday so I'm calling it a win.

Wednesday night was lousy because both schools had their big end-of-the-year events at the same exact time, which meant I had to choose between the kids. Donny was still at work so we couldn't tag team. I ended up dropping the older kids off at a friend's house and they got a ride to their school while I took Raya to hers for her little music performance.

Speaking of wins, today was kind of a big fat win. After feeling like I fell short on EVERYTHING since I got sick on the 7th, it was nice to finally have a good great day. Friday was kind of a low point. I had really REALLY wanted to go to Raya's water day at school but Piper was still coughing and I didn't have a babysitter so I couldn't do that. I had also really REEEEALLY wanted to take the little girls and meet Kaida's class at the zoo on their field trip but I was too sick to go traipsing around the zoo all afternoon so I couldn't. Instead, I was running around with 2 crabby, tired girls to pick up the medical paperwork that had to be signed by 2 of her doctors before the IEP meeting today and got a phone call from one of the doctors. At our last visit with her, she had said that if I needed a letter for the school, to let her know what I needed it to say and she would write it. The day I brought in the paperwork, I emailed her and let her know what I needed her to put in the letter. It wasn't anything demanding, just a statement of what areas Raya needs support in at school. She called me on Friday to tell me that she couldn't write what I wanted her to write because it was asking too much of the school, they wouldn't give it to me anyway, and she can't ask them to provide that level of care, etc. I tried to explain that they were already considering providing her an aide and that I only asked for those things in writing that would validate the decision to provide the aide, but I was kind of caught off guard and couldn't really get the right words out. She wasn't really listening to me anyway, and I felt like crap and could only get 3-4 words out at a time before having a coughing fit. Then she asked me if I was okay and I couldn't stop the tears from coming. I don't know if she could tell or not because of my scratchy voice and coughing but I didn't really care at that point if she could tell or not. It was really disappointing. I really wanted to go into the IEP meeting feeling like she had my back on what I was asking for, and instead, she was looking at the situation backwards. At the end of the call she told me that if, after the meeting, there was anything the school needed from her, to let her know and she would write it for me. Riiiiight. Because that worked out so well for me before. I stayed as polite as I possibly could and just said that since the school was already considering providing an aide, I hoped they would just go ahead and give her one so the letter would be a moot point anyway.

Fast forward to today, we had our first official elementary school IEP meeting and I'm happy to report that no tears were shed and no voices were raised. It went beautifully, and we are feeling so much better about sending Raya to kindergarten when school starts. The school staff decided that Raya would benefit from the assistance of a health aide throughout the school day. She will have an aide to help her with using the bathroom on a consistent schedule, to help with tube feeds so that she doesn't have to always be pulled out of class, and to be with her during lunch and recess. She will also be leaving school at 1:30 every afternoon until the weather cools down. School starts at the end of July this year, when the temperatures will still be in the 110-115 range, and the combination of the heat and the shock of being there from 8-3, 5 days a week would be too much for her. There are other things that were not addressed (or at least not discussed in the meeting) that I would still like to address, but this was the biggest thing and I think/hope the rest of it will fall into place since her most significant needs will be met. I haven't gotten my written copy yet but I should have it tomorrow, and we can always amend the IEP in the fall if we need to. Overall, I am happy with how it went.

After the IEP meeting, we went home and Donny went to send in his passport application while I waited for time to pick Raya up. Once we had finished those errands, we decided to drop my car off to get new tires ($$$) and went to Costco for diapers. We got some lunch and made it home just in time to drop off Donny and Piper so Raya and I could drive an hour to pick up her beautiful new stroller that FINALLY came. Her ped wrote the script for it in December or January and we ordered it mid-January. They said it would be in after about 2 months. I'm not complaining though because I'm just really grateful to have it. It's awesome. We got back home in time to go pick up my car with its 4 brand spankin' new tires, and then made it back home in time for the supply company to come exchange Raya's malfunctioning feeding pump. Long story short, it ran all day Saturday without actually feeding her. She went to a playdate at a friend's house, and by the time she got home, she was sad and weepy, tired, hungry, and felt sick to her stomach when she started to eat. She even fell asleep at the kitchen table, which NEVER happens. Right after that, I opened up the backpack and realized that it had quite a bit more formula in it than it should have at that point and I'm out of patience for stuff like that so I called today and asked for an exchange. They brought it at 5pm on the dot, right after we got back from picking up my car with the pretty new tires.

That was about all the productivity I could stand for one day. We threw together a quick pasta dinner with jarred spaghetti sauce and frozen garlic toast and then Donny went to the evening martial arts class and I sent the kids off to bed and flopped down on the couch instead of going to the grocery store. It was a pretty great day.

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