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Showing posts from May, 2015

The last week of school

Things got so crazy that I didn't really mention much about the last couple weeks of school. Monday the 18th started out with an 8:30 am IEP meeting to go over Raya's kindergarten IEP. I was not as nervous going into that one as I had been going into the one before that because going into the IEP meeting, I at least knew she was GETTING an IEP. The meeting before, I had come prepared to argue my case for why she needed one and thankfully, didn't have to. It definitely helped having Donny with me at the IEP meeting too. No matter how many times I hear (and tell myself) that it's not us against them in IEP meetings, it still feels that way, so it was nice to have someone else on Team Us. Piper came too and she was very well behaved.

I still haven't read the whole IEP and I'm not going to until I'm good and ready. The most important thing is that the school recognized the needs that I explained to them and decided that Raya needs to have an aide for kindergart…

Preschool...*sniff sniff*...is...*sniff sniff*...OVER! *sniff sniff*

How did this happen?! School is out for the summer and my baby is all grown up! Well, not ALL grown up but MUCH more grown up than I'd like her to be and it has gone by much too fast! Raya's last day of preschool was last Wednesday. Here's a side-by-side comparison of her first and last day of preschool. Her first day was a couple days after her 3rd birthday. She looks so little then and so old now!
Her big sister somehow talked her into letting her do a cute little braid thing with her hair instead of the ever-present ponytail. I had to take it out and redo it before we went to school and she took it out as soon as she got home, but it was cute while it lasted. I dropped her off at school and made good use of her last day of preschool by taking Piper in for her 15 month well check while Raya was at school. Then I drove through my favorite breakfast joint and got myself some French toast, put Piper in bed for a quick nap, and relished my last bit of peace and quiet until s…

Around and Into the Unknown: A Book Review

Today, I have a little something special to share. My good friend and Feeding Tube Awareness Foundation colleague, Hillary Savoie, has recently written a short story called Around and Into the Unknown. Hillary is maman extraordinaire to Esmé, founder of The Cute Syndrome (a blog and a medical research fundraising organization), Feeding Tube Awareness Foundation staff member, and holds a PhD. She is an incredible woman and I thought it would be fun to have her share a little more about herself, her daughter, and her book.



- First, can you tell me a little bit about Esmé and The Cute Syndrome? My daughter Esmé was born with a number of challenges--some of which, like her low tone and poor swallowing reflexes, were present at birth. Others developed as she grew, for example, she began having seizures when she was around 9 months old. Esmé is now almost 4 1/2. She has severe developmental delays, epilepsy, failure to thrive, and a movement disorder. She is tube-fed, non-verbal, and no…

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 dragge…

Just a meme for a craptastic Friday

Today is one of those days where nothing has gone my way and it's just a giant ball of frustration. Rather than complain, which I really feel like doing, I decided I'd keep it simple and share this meme that I threw together. It's the image that pops into my head every single time I'm refilling Raya's pump bag and have to tell her, "Raya, I'm pouring! Hold still!" And if you were not a child of the 90s and don't recognize the reference, please just ignore me and go on your merry way and let me laugh at my lame joke.




Pandora's Box

There aren't many stones unturned in the quest to find a diagnosis for Raya. Sure, we have a list of diagnoses and symptoms masquerading as diagnoses, but we have never found that one thing. The one that would tie a nice, neat bow around it all. Odd as it may seem, I have always envied the people who had a name for what ails their children. When someone asks them, "What does he/she have?" they can respond with a clear and concise answer that ends in "syndrome" or "disease". Now this is not to say that I wish a syndrome or disease on my child, but when there is a laundry list of medical problems, having a nice, neat little name for it (whatever "it" is) would beat the heck out of my usual babbling of "Well, she has a lot of digestive issues and CP and a chromosomal thing that we don't know anything about and might mean absolutely nothing..." You'd think by now I'd have a well-rehearsed answer for that questi…

Ok, I can breathe again.

The big yucky meeting is over. Yesterday I met with the MET (multidisciplinary evaluation team) to go over the results of Raya's evaluations, which were to determine whether or not she will qualify for an IEP going into kindergarten. To make a long story short and avoid the annoying suspense that I've been living with for the last 2 weeks, I will just come right out and say that Raya WILL be on an IEP going into kindergarten. (cue HUGE sigh of relief)

I did not know until the end of the meeting that she was going to have an IEP. First, they had to go over all the results of the evaluations with me. Aside from the very long days in between the evaluation and the results meeting, that is the most nerve-wracking part. On one hand, you want to hear good things about how your child is doing, but on the other hand, you want them to score low enough to qualify for the services you know they need. In past meetings, I've cringed a bit when she has been within the average range on t…

April.

April felt a bit like a bulldozer to me. I'm actually kind of proud of myself for making it through April without screwing up anything important because there has just been SO much going on. Not that May is going to be any calmer, but aside from feeling bulldozed, I'm feeling pretty good about April. And I'm not sad that April is over either.

I didn't post much of anything in April because I was either too busy to sit down and do it, or I didn't have the emotional/mental energy to do it. I have vaguely mentioned a few things (school meetings, being reminded through friends' experiences that life in the medical world is fragile, the boy back on asthma meds, field trips, etc.) but I thought now would be a good time to expand. Not because anyone will be particularly interested but because I need to write crap down or I forget it.

This month has been a plague of seasonal allergies that, for some, turned into upper respiratory infections and asthma. I had to pick Co…