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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 more calm & collected about Tuesday's meeting. I talked to our support coordinator and discussed what we need to do next if the evaluators did not find Raya in qualification for preschool so that helped. Raya had an allergist appointment that morning so we dropped the kids off at school and headed to the appointment. Allergy testing frustrates the heck out of me. At her last appointment, we did skin testing with the major food allergens and some additional foods that she eats and that we've seen reactions to in the past. She was very mildly positive for milk, peanuts, most of the tree nuts, wheat, oats, rice, chicken, and shellfish. Because there were some reactions, we did blood tests. They all came back negative. That really frustrated me because we KNOW she has allergic reactions to some of the foods we tested.

At her follow-up, we saw the nurse practitioner. I have nothing against her but I was hoping to see the actual allergist since he's the one that's been following Raya since she first saw him. The NP is nice but she moves really fast through the appointments and I feel rushed and like she's not really hearing me. I was telling her that Raya has had this dotty rash around her mouth & under her nose for about 2 months now. At first we thought it was heat rash but if that was the case, it would have gone away by now. Incidentally, in the last 2 months her two most consistent foods other than ice cubes (if that counts as food) have been Wheat Thins and Nutrigrain bars. Because wheat was her highest reaction on the skin testing, I thought maybe the rash is related to the fact that she's been consistently taking in wheat orally. The NP said that it could be related and suggested taking her off of wheat for 2 weeks to see if we notice any changes.

She also wanted to do skin testing for environmental allergens to see if maybe that could give us some answers. Raya was ticked. She hates skin testing. I felt bad for springing it on her like that but that was better than having to schedule another appointment for it. The results were completely underwhelming. She was ever-so-mildly positive for cat & grass but that was it.
So that didn't get us any helpful information other than we don't really need to be concerned about any environmental allergies. One more test to check off of the very long list. :)

After that, we hurried home so I could throw some stuff into boxes since we were moving the next day. All I have to say is thank goodness for wonderful friends who are willing to help out when I need help (even if I don't think I do & don't want to need help) because there's no way I could have gotten everything packed in time. We got home from the allergist at 10:30 and had to pick the kids up from school at 1:00 and then pick up my phone from the place that fixed my broken screen from when I dropped it in the zoo parking lot 6 months ago. THEN we went home and hurried to throw more stuff in boxes.

Thursday was the big day. We have been looking forward to this move with equal parts anticipation and dread. We've been SO excited to move into the new house (which is smaller but MUCH nicer than the old one) and SO excited to be back "home" but sad to leave the friends we've made and dreading the actual process of moving. HATE that part. Two of the kids were at school and the girls were at home. Thankfully, a friend took Kaida to her house for a few hours and Raya's wonderful respite provider was able to come and keep her occupied and then take her to therapy. I love her dearly but it's hard to load a moving truck with this sweet girl around. She was climbing on things, unpacking things that had been packed, putting random stuff in boxes, and getting herself stuck between the window and the toy shelves.

All that excitement wore her out and she fell asleep on the way to OT. Megan sent me this picture when she got to the clinic.

Such a pity to have to wake a sleeping 2 year old! Her OT texted me when they were done and said that Raya had a great session and that they're tweaking her program and adding in some new things that they learned at a workshop a couple weeks ago. I absolutely LOVE that we have such great OTs who care so much about their patients that they seek out ways to improve upon what they're doing, which is already pretty awesome. We are truly blessed with great therapists.

While they were at therapy, we (Donny, his dad, me and a friend) were back at home playing real-life Tetris with boxes in the moving truck. When it was full, we headed over to the new home {sweet} home and started unloading. Megan brought Raya over after therapy and then Raya spent the rest of the day "helping" us move.
(that box weighs about 6 ounces, by the way) After she got the box of Farrell bags onto the shelf, she decided it needed to go on top of everything else. I was carrying things into the house and walked back in a few minutes later and found her like this:
Somehow she had managed to get a gallon jug of water on top of the box of formula & Pedialyte. When I took the picture she was yelling, "Ta-da!" 

We had to go back for another load and the girls just couldn't stay out of the middle of things. They had so much fun going up & down the ramp in the truck and Raya took it upon herself to tell everybody else what to do the whole time. She biffed it SO many times going down the ramp of the truck. The new house has a back yard with GRASS in it, as opposed to the house we've been living in where the whole thing was rock except for the small area where there used to be grass and we planted our garden there. The kids were so excited to have a nice yard to play in and stayed outside for a long time while we finished unloading.

When it was almost bedtime, we made the little girls come in and have a bath because they were SO filthy from "helping" all day:

Raya had a whole bunch of new bruises & scrapes (including that nasty one above her right knee. not sure how that happened) and they were both just filthy. By the time they had scrubbed the dirt off, the water was gray. Blech.

Thursday night was a momentous occasion for Raya (and us). She is no longer in our room. YAY! We've had her in our room since she was a tiny little baby because she just needed to be, but she's ready (and WE're ready) to share a room with one of the big kids. I don't want her formula to mess up the carpet in this house so I bought a tarp yesterday to put under her crib (classy, I know) and I'm going to find a cute rug to put over it. That way it won't look ridiculous but it will still save the carpet. We don't have nearly as many leaks/spills/drips as we used to but it's still inevitable so hopefully this will work.

Friday was also a momentous but bittersweet day. After 2 years and 9 months, Raya has officially graduated from physical therapy. She started when she was 8 weeks old because she had congenital muscular torticollis with a left tilt and right rotation. This is how she looked after about 1 year of PT:

She had PT at one of the children's hospitals for about 11 months before switching to home therapy through early intervention/DDD. Since December 2010, she's been seeing Miss Jessica. It took Raya a couple of months of working with her before she could tolerate most of a session but she warmed up to her and started having OT to address sensory issues, she loves Miss Jessica.

On Friday, we walked to the park in the neighborhood (since there was no room in the house with piles of boxes everywhere) to re-assess some of Raya's skills and make sure she's meeting her PT goals.
(Checking range of motion in her neck)
Not catching the soccer ball :)

We greatly appreciate everything Jessica has done for Raya and will really miss having our PT sessions with her. This kind of progress is exciting though. A kid with cerebral palsy to "graduate" from PT is something to be excited about. :)

And that brings us to today. We had to do what is possibly the most awful part of moving: clean the old house. My wonderful mother-in-law and another friend came over and helped but even so, it took us about 5 hours to get it REALLY clean. Nothing makes you feel like an awful housekeeper like having to deep clean your house after you move out. Donny worked today so the kids were stuck helping. They were tired, hungry, and bored about an hour into it so by the time we left, everybody (including the adults) needed lunch and a nap.

Raya fell asleep in the car on the way home and stayed asleep when I laid her on the couch. I hooked her up to the pump for a feed and she slept for a little over 2 hours. When she first woke up, she was smiling. Then less than a minute later, she was writhing around on the couch crying and screaming. At first I thought it was just a meltdown from the total lack of normalcy this week. I sat down on the couch and put her on my lap and instead of bristling and not wanting me to touch her like normal, she leaned up against my shoulder and was hunched over grabbing at her stomach. I asked her if her tummy hurt and if she wanted me to burp her tummy but she was beyond being able to communicate with me. (Again, where was this child during the preschool evaluation...) I got the tube & syringe to vent her with but she grabbed her tube and screamed at me when I tried to pull her shirt up. I could hear her refluxing and swallowing a lot of air so Donny helped me get her hands out of the way so I couuld vent her. At that point, it had been well over 2 hours since her last 250ml bolus so I didn't expect anything but air. The second I unclamped the tube, yellow liquid started filling the syringe. She was squirming around crying and grabbing at her stomach and I had to clamp the tube because I only had a 35ml syringe and we were up to 20. Her breath smelled like bile and what was coming out of her stomach was formula mixed with bright yellow bile and mucus. I decided we'd better empty her stomach to make sure she didn't throw up and because I wanted to see how much was in her stomach. She shouldn't have had much of anything in her stomach by then but I drained out over 180ml followed by a LOT of air. She kept crying the whole time, and kept crying off & on for the next 3-ish hours.

We went to Costco and she cried most of the time we were there. She cried because I didn't let her have a chicken nugget like the other kids got to (the breading had wheat in it and she wouldn't have eaten it anyway). She cried because someone looked at her. She cried because the cashier talked to her. Then the cashier said, "Oh, must be naptime!" and I wanted to explain to him that she wasn't tired, she was hurting and her little world was in upheaval but I didn't. Sometimes you just have to smile and nod. Or ignore.

We came home and she was still a hot mess. I offered her one of the new crackers (gluten-free) that we got at Costco but all she wanted was the gluten-free animal crackers that I got her at the grocery store yesterday. And ice. Thank goodness for ice. I mixed the rest of her formula for the day with Pedialyte and hopefully that will move through her a little better.

Well, that's the rest of our week. Busy and exhausting but we are SO happy to be done with the move and be in a house & neighborhood that we love. Hopefully Raya will adjust soon and start feeling better. Moving is rough on a little kid who doesn't deal well with change & interruptions to her routine!


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