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Showing posts from March, 2013

A beautiful Easter Sunday

Today has been a beautiful day. Since it was Easter, we wanted Raya's respite provider to be able to have the day off and we wanted Raya to be with us. This morning she asked me if she was staying home and I told her she'd be coming to church with us. I've never seen a 3 year old get so excited about going to church! We got her dressed and ready to go and even managed to track down a pair of Sunday shoes that were pretty much the right size. I had to sigh a little because the skirt she wore today was the one Kaida wore in our family pictures when Raya was a baby. They're all growing up too fast. Anyway, we got in the car and as we were backing out of the garage, Kaida put on her cheesy old lady voice and said, ” *sigh* It's so nice to have the family all together!” Donny and I laughed because of the way the 5 year old said it, but I was thinking the same thing. Especially when I looked back and saw this sweet face: She did great for the first hour. (we go t…

Weekend

Nothing much to report at the moment. Raya had great sessions at OTand FT yesterday. For the first time since December, her therapist was able to incorporate some of the work she had been doing last summer with Raya to reduce the primitive reflexes that are still intact that shouldn't be. Hopefully things will continue to move in the right direction and she'll keep tolerating therapy sessions as well as she did yesterday.

Since it only took her half an hour to eat her Neocate pudding, she had some extra time during FT. Her therapist got out some speech flash cards and spent some time working on articulation, so that was a nice break from the norm. When we got done at therapy, Raya was still in a great mood so we went to the produce market to get some fruits & veggies. It was a madhouse, as usual, but we got some great deals and she had fun. The we got home and the big kids wanted to eat strawberries and she got upset. It was the first time in a week or two that she&…

1 out of 454 ain't bad

{I can't believe I just used the word "ain't". Or that I referenced a song by someone called Meatloaf. }

So yesterday we showed up to Raya's neuro appointment thinking we were 10 minutes early and found out we were actually 20 minutes late. Bummer. I've NEVER been that late to an appointment!! Even the time that they rescheduled a swallow study and moved it up by half an hour without telling me, I was only 15 minutes late. If it had been the pediatrician's office (or any other office, really) we probably could have still been seen but this is one office that actually makes a really good effort to stay on schedule so they couldn't fit us in. I was SOOO mad that I had screwed up and missed the appointment. Then I went home and counted how many appointments she's had since January 2010 when all the craziness started and suddenly I felt better. Out of approximately 454 medical appointments of one kind or another, I have missed ONE. I'd say that'…

A few old pictures

Yesterday morning I was waiting for my tax software to download and while I waited, I watched a few videos from when Raya was a baby. {acknowledging that my baby isn't a baby anymore...ouch} She was so darn cute! Of course there are some things that I certainly don't miss about that stage of her life, but good gracious I miss that little baby! Now I realize that most people don't make videos of their baby crying, but considering how much she cried and how miserable she was as often as she was, I was surprised that most of the videos are of her smiling and as happy as can be. Like this one:


Don't get me wrong, there were plenty of stink eyes too.
But I loved the stink eyes. :) It just meant she was being tough and protesting all the crap she was being subjected to. I was having a lovely time watching videos of her and looking at pictures and then suddenly realized that my 10:00 alarm hadn't gone off and it was 10:17. She gets out of preschool at 10:15. I was late pick…

Easter egg hunt!

I waffled for at least 3 weeks about whether or not we were going to the Easter egg hunt for church. Since Donny teaches a class at the community college on Saturday mornings, I knew I'd be taking all the kids by myself and that doesn't usually make me chomp at the bit to do things. :) I knew the kids would have fun but my hangup was anticipating that Raya would be sad if she did an Easter egg hunt and then Mommy took away all the candy out of the eggs. Doesn't sound very appealing, does it. I felt like I was having to choose between Raya and the other 3 kids, who definitely deserved to go to the party and have fun with their friends. I finally decided at 8:00 Saturday morning that we'd brave it and go. Somehow we made it there on time right at 8:30 but it was because I had just thrown all of Raya's meds & formula in the bag and set everything up once we got there. She wasn't quite acting like herself on Saturday. I'm not sure if she wasn't feeling …

Feeding therapy without food

A couple weeks ago, I had a good chat with Raya's feeding therapist about how to proceed (or whether we should) with feeding therapy. To put it simply, I was feeling guilty about taking up a time slot on the therapist's schedule when there's no end in sight to Raya being off of solid food. When we first took her off of food at the end of January, we took a 2 week break from FT because we felt like it was more or less teasing her. Hey, Raya, let's go in the room where you've never done anything but eat and hang out with your feeding therapist but NOT eat! Yeah, didn't sound like a good idea. So we took a 2 week break and then Raya started asking when she could go see Ms. H again so we started going again. At that point, I knew we wouldn't be doing food again anytime in the near future because of all the reasons why we had taken her off of food combined with all the things that need to be done before we can start her back on food again but I was pretty sure h…

Soaking her in

At the end of a long day (16+ hours of awake time for little missy...) that comes near the end of another long week, I'll admit that I'm ready for Friday. My current favorite thing about Fridays is that I don't have to struggle to get Raya to school by 7:45 and the big kids can ride the bus to school. It probably shouldn't be as hard as I make it to get to school on time but it's a but of a challenge most days. Today was not her best day school-wise. She's still trying to kick this sinus infection and I know she want feeling her best this morning but she needed to go to school and I needed her to go to school. For the first time since she started preschool, she said she wanted to stay home and not go to school today. It was time to leave and the other kids were all in the car so I told her we needed to take the kids to school. When we pulled up to the preschool side of the school, she realized I was dropping her off and she started bawling like I had betrayed…

I'm high-fiving you in my head

Today while Raya's darling respite provider was here with her, I took Kaida to the library so that I could study in relative peace and Kaida could pull books off the shelves to her little heart's content and "read" them. I managed to find an adult-sized chair in the kids' section and we commandeered a table that we quickly covered with the DVDs we planned on checking out, a stack of children's books, my giant textbook, 2 piles of notecards, a stack of note pages, a notebook, and Donny's super rad sports car folder, circa 1992.
We sat at the table for about 20 minutes and during that time, I wondered why the children's section was virtually empty. Then story time ended and that answered that question. We were sitting in direct view of the shelves of children's DVDs, so I could clearly see everyone that walked by to pick out movies. Most of them were mothers with young toddlers, so when a tall teenage boy and his dad & brother started perusing th…

A dentist visit to be proud of

I should have written this before bedtime. The 45 minutes of crying kind of killed the excitement but I'll try to bring it back. :)

I've been looking forward to Raya's next dental cleaning with equal parts anticipation & dread. Her teeth have always been surprisingly perfect, even when she was vomiting bile every day. Brushing has always been really difficult for us to pull off because of her history of oral aversions & the fear of having me put anything in her mouth (thank you, NG tube...). With all the other "battles" we've had to fight with her since she started growing teeth, brushing teeth was not the highest priority on the list. We were much more concerned (and rightfully so) with getting her to be okay with having food in her mouth and nobody involved with her care had any desire to screw that up by having us force her toothbrush into her mouth. Within the past month, she's gotten MUCH more accepting of having me help her brush her teeth. …

Big girl bed

Raya has been sleeping in a crib since she stopped sleeping in the baby swing, which was at about 6 months. Ha ha. (Not joking, by the way.) Her crib came with a kit to convert it to a toddler bed but we never did it. We realized that even after she had learned how to climb out of the crib, as long as she was connected to the feeding pump, she would stay in. It was fabulous. While it lasted. All good things must come to an end though and the power of the crib rail plus freeing pump has run out.

Since she climbs in and out at will, I decided on Thursday that it was time to make the switch. Before: After: She was very excited and has been showing everybody her big girl bed. I wish I could say that she's been sleeping in it but so far it's only happened once and I'm feeling doubtful about tonight too. Bless her heart, she's adorable when she chatters about the deck of cards she's been sorting and re-sorting for the past 2.5 hours and asks me if she can PLEAS…

Troubleshooting the Moog/Zevex Enteralite Infinity Pump

The day I brought Raya home from the hospital with her first feeding tube was the first time I ever saw a portable feeding pump in person. I didn't get a manual with the Kangaroo Joey pump that was dropped off to Raya's hospital room by the home health rep and I got a 5 minute crash course on how to use it. Fast forward 5 months and I had a 7 month old who was not yet crawling but was too mobile for the Joey pump. I called up our home health provider and told them that we couldn't take another day with the Joey, and the next day they swapped it out for a little bitty Zevex Enteralite Infinity (now it's Moog, not Zevex). Again, no manual.

The pump is not difficult to operate, but without a manual, there's just no way on earth to figure out how to do certain things with it or even realize that certain features exist. I spent a lot of time jiggling things, pulling on tubing, resisting the temptation to throw it at the wall, and holding down the PRIME button on the pu…