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Showing posts from September, 2012

The rest of our busy week

I was totally right when I predicted at this time last week that this week would be rather hellish. Now it seems like a bit of a blur but it was a hellish blur. Thankfully, Wednesday was a much better day than Tuesday. As frustrated and down as I felt on Tuesday, I knew that I wasn't alone in my feelings. I was able to blubber on the phone to my wonderful husband, blubber via text & email to dear friends who have been through meetings just like the one we had, and blubber in person to two other dear friends who hugged me, which was what I needed. Every one of them had different things to say and I needed to hear all of it. One of the most important things I've learned that has made the biggest difference for me through this special needs journey is that I am not meant to go through any of it alone. NOBODY needs to go through it alone. I couldn't do this without the understanding and support from people who are doing it too.

Moving on. So Wednesday I woke up feeling much…

Long and exhausting day, part 2

If you missed Part 1 of our incredibly long & emotionally exhausting day, click here to read it.

After I had a chance to collect myself a little, it was time to go to her next appointment. This one was her annual CP screening clinic at a clinic WAY downtown that I really don't like going to. One of our worst doctor's appointment experiences ever happened at that clinic and after that, I never wanted to go back but we have to once or twice a year. It takes us about an hour to drive there so I always leave 90 minutes early just to account for traffic. It was the middle of the day so Raya snoozed most of the way there with her "blue blanket" which is really pink plaid. No matter how many times I tell her it's pink, she still insists that it's blue. Whatever.

I was still replaying the events of the preschool evaluation in my mind (much more calmly than the drive from the school to home) and flipped the radio station. I caught the end of the song that I used …

The much anticipated/dreaded preschool evaluation

The short version of this post is that Raya had her preschool evaluation today, it totally sucked and I will be amazed if they scored her so that she qualifies for preschool, we had a lovely visit with the nurse practitioner at her annual cerebral palsy screening clinic, and the ice cream they gave us on our way out of the clinic was the high point of my day and Raya's. If you want more details, here's the long version. It's really, really long, it's not pretty and I'm not asking for sympathy or pity, I'm just documenting our life and keeping it real.

Back when Raya was diagnosed with cerebral palsy and subsequently approved for therapy services through DDD, I breathed a huge sigh of relief. That diagnosis meant that she qualified to receive the therapy services, supplemental insurance, and respite care that we knew would provide her with better quality of life and allow her to reach her maximum developmental potential. I did not realize at the time, however, t…

The GI visit I forgot to write about

Raya saw her GI doctor last Wednesday. That morning when I told her we were going, she was SO excited. She loves her GI and loves to say her name too. We had to take Kaida with us this time and that always adds a little excitement. Of course the first thing she does when we walk through the door is kick off her flip flops. That kid does not like wearing shoes! Not sure what we're going to do when the flip flop weather ends. We did measurements and vitals. Raya makes me so proud with the way she handles all of that. She's definitely an old pro. :) I usually sit in the chair with her in my lap for vitals but she wanted to do it by herself this time. She looks so grown up sitting there all by herself with her little blood pressure cuff on! :) I couldn't help but smile. I'm so proud of my big girl. :) She was excited to see her doctor right up until she walked into the room. Raya had been playing and jabbering up a storm, not paying any attention to me and then the se…


I hate moving. In a lot of ways, moving a long distance is much easier than moving across town, which is what we're doing next week. We've done both and although both were stressful, everyday life doesn't pause while you pick up and move a few miles. I feel like today has been the calm before the storm. It was the first day this week that we didn't have some kind of appointment or somewhere that we had to be other than taking the kids to school. Next week is going to be downright insane. We have 3 appointments, one of which is a huge deal, one will take an hour of driving both ways and be at the clinic I hate the most, and the other will determine whether or not we have to make some big changes with food. Donny will be working late into the evening until moving day and somewhere in there, I have to remember to feed everybody. We're really excited about the move, just not excited to do it. I really hope she'll start taking naps again when we move because she has…

What I should have done differently

This is follow-up post #2 in the saga of Raya's AMT MiniOne button getting pulled out & not going back in. You know, the part where hindsight is 20/20 and I acknowledge that I should have done things differently?

In case you missed it, here's a recap. Thursday night, Raya's MiniOne button accidentally got pulled out. Even though it was out for less than 5 minutes and I've NEVER had a problem getting it back in, I could NOT get it back in no matter what tricks I employed. (which included a ridiculous amount of surgi-lube and a Q tip stuck through the G tube to keep it straight) Fortunately, we had an old yucky MicKey button in the emergency kit that went in just fine. (The tip on the AMT balloon is wider & more blunt than the MicKey, which is more pointed and narrower.) I called the on-call GI at the hospital who told me that since we had a tube in, not to bother with the germ-filled ER and that I should just call the surgeon's office the next day.

I tried ag…


We are still on our "sugar powder" kick. If it in any way, shape or form resembles sugar, Raya will eat it. Even if it's flour or berry flavored protein+creatine powder (what she's eating in the picture). I always thought that when she finally started eating I'd be so excited that I wouldn't care what she ate but I didn't realize she would be drawn to bizarre things like powders and Crisco. I guess beggers can't be choosy.
Honestly, I'm surprised that she likes the texture of powdered sugar because it's so light and has very little sensory input. Typically she can't stand things that don't have during sensory input. I wasn't surprised that she ate lemonade mix because it's gritty and has a strong flavor, but I don't get why she likes the fine powders. I suppose that nutritionally, protein powder is a little better for her than lemonade mix or sugar, but it scares me a bit because she doesn't care what the powder is. If…

Who needs surgeons anyway

Part 2 of the AMT MiniOne button won't go back in saga:

Recap: last night she accidentally pulled her G tube out (16fr 1.7cm AMT MiniOne button) and I tried repeatedly with every trick I could think of and couldn't get it back in. To avoid hospitalization & emergency surgery, I put an old yucky but mostly functional MicKey button in to keep the stoma open. I called the on-call GI after trying again unsuccessfully to get it back in and she said to wait & call the surgeon's office in the morning.

We used the gross old MicKey button for her last feed of the night & her night meds and then this morning I decided to give it one more try before I called the surgeon's office. I remembered that I had a tiny tube of lidocaine cream from one of our hospital stays so I decided to pull the MicKey out, slather the scar tissue & surrounding skin with lidocaine cream, and put the tube back for 20 minutes while the cream took effect. I had Raya lay down and told her I wa…

Unwanted button change...

Ugh. So Raya's tube got pulled out this evening. Normally, pull-outs are no big deal around here. It's as routine as a diaper change, just a LOT less frequent. We switched from a MicKey to an AMT Mini One back in April and I love it, but today has been a bad Mini One day. I tried, and tried, and tried to get it in. I used a RIDICULOUS amount of surgi-lube, the little golf tee-looking thing that came in the kit (which is worthless, btw) and a Q tip inserted in the stem. None of it worked. Want to know why? It might have something to do with her scar tissue.

Yeah. It's big. The AMT button is harder to get in anyway and that scar tissue complicates things. When I had pushed as hard as I could and her stomach was all red and she was screaming at me to stop hurting her and it wouldn't go in, I ended up getting a cruddy old MicKey button out of the emergency kit and putting that in instead. Raya NEVER cries when she gets her button put back in. Not even the times when the ba…

Dentist visit and lab results

The kids had checkups with the dentist yesterday. I was pretty much dreading it because last time we went, the hygienist felt the need to lecture me about not brushing Raya's teeth enough. I had to bite my tongue because I felt like she was judging me unfairly. She had no idea how far we had already come just to be able to get her in a dentist's office and let a complete stranger brush her teeth while she laid flat on her back without vomiting (either from crying or gagging). It was really aggravating so I was prepping myself for a repeat and had my "don't tell me how to do my job and I won't tell you how to do yours" speech all prepared but it went much better this time. Other than Raya not having a nap on Monday or Tuesday. Or today. She's wearing me out with this no nap nonsense.
The appointment was at 2:00 so by then, she was at the point of knowing she was tired and doing whatever she had to in order to stay awake. Like removing her shoes 10 times in…

SUCH a Monday

Alternative use for cases of formula & Pedialyte:

Soaking up apple juice (that nobody asked if they could have) out of the rug (in the living room where food & liquids are off limits). To make things even more fun, I discovered when I got the carpet shampooer out of the garage that the last time it got used, the yucky water got left in it. I won't even say what it smelled like. I'm pretty sure it was me that left it. I think it was the last time someone (not me) unhooked Raya without turning off the pump and fed 8oz of vanilla flavored Peptamen to the backpack and carpet. Ironically, that was the original reason I was going to get it out today. There was another formula mishap on Saturday and the whole room has a yucky vanilla-ish smell. And we're moving in 2 weeks and 4 days. And the house is supposed to be ready for people to look at. Eek. Yeah, today is such a Monday.

Dear Nestle'

Dear Nestle',

For the love of Pete (that's Raya's nickname, by the way), PLEASE get rid of these awful "tetra pak" cartons and change the formulation back to the way it was before you ditched the cans. I'm tired of spilling formula everywhere when I try ever-so-carefully to pour it into the 1.5 inch wide opening on the feeding pump bags and Raya is tired of being constipated. And don't bother trying to tell me that the formula is the same and the packaging is better. The poop changed when the packaging changed, she's not the only kid that's having this problem and I'm not the only parent who hates the cartons.

The mom.

Public service announcement about meltdowns

This is not my first post about meltdowns and it probably won't be my last. Meltdown is an ugly word. Watching a meltdown is ugly. Watching YOUR child have a meltdown is scary, sad, disturbing, frustrating, and embarrassing. Scary because there's very little you can do about it. Sad because you know your child is a good kid who doesn't mean to "behave" like that, although sensory-related meltdowns have little or nothing to do with behavior. Disturbing because your child who 5 minutes ago was happy and playing has suddenly transformed into a screaming, thrashing, wild little creature that barely even resembles your child. Frustrating because it always happens at inopportune moments like when you've spent 2 minutes too long in the grocery store and he/she is ready to leave NOW. And yes, it's embarrassing no matter how secure you are with yourself as a parent and how little you value the opinions of total strangers. Because let's face it, in the general…

Can she dress herself?

I've been filling out Raya's preschool evaluation paperwork. One of the questions on one questionnaire was, "Can your child dress him or herself?"

Judging by the blue plaid dress she's wearing around her waist on top of her hot pink skirt, I'm going with no.