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Thursday, June 28, 2012

Sammy the Seal and lots o' puke

Raya had a great OT session today. She started out on the swing that looks like an upside down"T". It's a lot of work for her because it requires more core strength than the other swings. She was really quiet while she was on the swing and seemed sleepy. After the swing, she found a little ride-on toy that she REEEEEEALLY wanted to ride so her therapist let her. :) She set up a game for Raya where she picked up plastic rings at one end of the room, scooted to the other end of the room, and put them on Sammy the Seal's head. She loves Sammy the Seal and had to pet his head and talk to him every time she put a ring on his head. He barks at her when the ring falls past his tail.


They're buddies. :)

When she finished that game, she sat on the scooterboard and pulled herself across the room. She was unusually calm and compliant today but we just chalked it up to the progress she's made with her sensory processing. I was surprised by how well she did. She was really distracted by the other boy that was in the room but she kept doing what she was doing anyway.



After she was all done, her therapist did the oral sensory program. On Tuesday she let her go through all the steps but today she wouldn't let her finger into her mouth at all. Since Raya had done so well, I told her she could have 2 Smarties. She discovered them at Grandma's house and loves them. I love hearing her say Smarties because it sounds like"Farties". Immature, I know, but it's funny. :) She likes the way they crunch between her teeth and it gives her teeth a break from crunching ice. :)

When we got home she asked for some peaches. She ended up eating 6 peach slices so that was good. Not so good was when she all of a sudden had a fever at 5:00. It wasn't high and I wanted to get more calories into her so I gave her the next bolus feed but slowed the rate down. Poor baby didn't feel good.


At 9:00 her fever was 103 and she puked on me, the couch, the floor, and herself so I flushed her tube and we got cleaned up. Then a while later I noticed that her belly was looking rather puffy so I got out a bolus extension and syringe without a plunger to vent her with. I laid her down in a towel and opened the clamp but nothing happened, not even any belly burps. She definitely wasn't feeling good so I started to have her stand up so I could just drain her stomach and hopefully keep her from puking. Of course right as I was about to grab the bottle to drain her stomach into, she started vomiting. That time she was freaking out because it came out her nose and because there were 9 hour old peaches involved. I felt cheated that she puked all over me while I was in the middle of emptying her stomach. That time there was at least 6 ounces.

After we both got clean clothes on again, she laid back down on the couch. An hour or so later, she threw up another 6 ounces for a total of about 14 ounces, including 9-10 hour old peaches. Given that she's only had a total of 16.5 ounces of formula today, I'd say somebody's gut is taking the day off. We'll run a slow pedialyte drip tonight and hopefully she'll be feeling better in the morning and hopefully nobody else gets whatever she's got.

Sunday, June 24, 2012

Pictures from our trip

We had the most lovely week at Grandma's house last week! For one thing, the weather was AMAZING compared to the 30+ days of 100+ degree weather we've had at home. For another, the kids are absolutely in heaven when we go to Grandma's house. They only get to see their cousins once a year so they take full advantage of every moment they have together. We got a special treat this time and my grandparents from California came to visit too. They brought some fun little presents for the kids: notebooks, stickers, and pipe cleaners!

The little ones thought they were pretty big stuff because they got to go play downstairs with the big kids. :) 
 

Raya has 3 cousins who are the same age. Having 4 two year olds around is pretty exciting. They all have such different personalities and it was so much fun to watch them together. 
 

Our visit with Great-Grandpa & Grandma was pretty short but it was wonderful to see them. Great-Grandpa was pretty impressed with Raya's ingenuity when it came to the swings. She discovered that if she pushed one of the little ride-on toys over to the swing, she could climb on it to get up onto the swings all by herself instead of waiting for somebody to help her. (can we say independent and no sense of danger...) 
I was impressed that Raya gave Great-Grandpa hugs when they left. Shockingly, my little social butterfly can be pretty timid around adults. :)
 

Being away from home was a little rough on my girl. She did great the first day or two but she didn't sleep well away from home. No naps the whole week, staying up WAAAAAYYYYY too late (it doesn't get dark in Idaho until 10:00pm), playing hard all day long, waking up in the middle of the night with a stomachache, etc. was not a good combo for a 2 year old with sensory processing disorder who NEEDS to have a consistent routine and plenty of sleep. Oh, and factor in the problems we kept having with the feeding pump... Anyway, she picked up some funny quirks while we were there that I think had a lot to do with her body coping with the changes to her routine. One of which was using her left hand to eat her beloved "sah-seem", which she consumed WAY too much of. :) 
Raya did a lot of nibbling over the week. She ate a lot of things she's not used to eating and she ate WAY too much plain Greek yogurt. She woke up in the middle of the night more than once groaning and crying. She also had a couple of questionable diapers, so now we're not so sure that she can handle cultured dairy products as well as we thought she could. I guess time will tell.

One day I went outside and Kaida was feeding bananas to her little cousin. She was having so much fun feeding him and thought it was really neat that she could get some bananas on the spoon and hold it out to him and then he would open his mouth and let her put it in and then swallow whatever didn't fall out of his mouth. The things you miss out on when your baby sister doesn't eat. :)

The favorite activity among all 4 of the two year olds was playing on Grandma's swings. (Well, other than riding on the 4 wheeler and tractors with Grandpa.) Raya had kind of a love-hate relationship with the swings. Whoever was in the other swing would yell to the person pushing them, "Higher! Higher!" so then Raya would do it too. Then when the person pushing her would push her higher, she would panic and be frozen with fear until someone slowed her down. If it hadn't been for MONTHS of practice at OT, I don't think she would have even touched the swings so therapy really does help.

On Saturday, we had a big family party for my grandparents from Utah who were celebrating their 60th wedding anniversary. Bless her heart, Raya wanted nothing to do with them. Grandpa has never let me forget that when I was Raya's age and younger, I was afraid of him too, so I felt bad that Raya wouldn't go near him. This was about the only picture we got of her with Great-Grandpa. I told him that the next time she sees him, she'll be hanging all over him. :) 

Raya started to get a little overwhelmed at the party. I don't think anybody else would have noticed but she was seeking out a lot of her comfort behaviors that she knows make her feel better, like the swing. She also lucked out and found a great-aunt & great-uncle that were willing to keep pushing her. :)
 
Notice the Cheeto cheese all over her shirt. :) She stayed in the swing so long that she started to doze off. Her eyelids would get heavy, her head would start bobbing, and everybody was afraid she was going to fall off. Just when someone would start to move towards her or ask me if they should get her down, she'd open her eyes and giggle like she'd been faking the whole time.


I'm not sure if it was the fact that everybody else was eating or if there was some other motivating factor but she actually ate a decent amount of food the day of the party. She had a lot of chips, a cookie or two, and I'm not sure whose milk she got (chocolate AND plain) but all that food really did a number on her. She was miserable that night.
 

The most brilliant thing my mom did last week was rent a bounce house for the kids to play in. Between my siblings & cousins, there were about 18 kids and the bounce house kept them very well entertained. I also have a darling teenage cousin who spent a lot of time in the bounce house WITH the little kids and they all thought he was pretty cool. Even Raya warmed up to him pretty quick. :)

Once she had decided that Destry was an okay guy, she decided that all the big cousins were pretty okay too. As long as nobody was touching her, of course. :)


My mom also made a pinata for the kids and they all took turns whacking it. Raya wasn't interested. This is a picture of me making her hold the bat and whack the pinata, which was immediately followed by a trip into the nice quiet house so that she could have a breather and relax for a minute.

She spent a lot of time in the bounce house too, which was another thing she's familiar and comfortable with thanks to OT. :) And this was more fun because nobody was making her jump back & forth and put bean bags in a bucket. :)

After all was said & done and the party had been cleaned up, the kids went back to playing on the bikes and swings. My kids LOVED being able to just go play outside all day long every day. :)

Monday was Grandma's birthday so we went over to my sister's house to make her a birthday cake. She's very patient and let all 8 of the kids who range in age from 2-9 take turns helping with the cake. Raya got to crack an egg and then help stir the batter.

Then all the kids got to have a taste of the batter:

While the cake was baking, the kids ate lunch. Raya asked for a strawberry so I gave her a piece. She ate almost 3/4 of a strawberry one tiny bite at a time and then had some sour cream. Not the Greek yogurt that she calls sour cream, but real live sour cream, 30 calories per tablespoon. It was a good calorie day. :)


By the time Monday rolled around, Raya was pretty smitten with my cousins. :) She thought they were pretty fun. These guys were all little tiny kids when I got married so it's really fun to spend time with them and get to know them as adults/almost adults. This picture of her with Cousin Logan is one of my favorites from the whole trip. :) 

Logan thought it would be funny to get Raya to rub Uncle Randy's clean-shaven but slightly prickly head. Raya wasn't so sure about it. :)

With as many people as there were, the little kids never ran out of people to push them on the swings. :)

One of the other odd habits that Raya continued while we were there was her strong desire to munch on ice cubes. I cringe whenever I think about her gnawing on them but sometimes a girl just needs her ice. And a washcloth to hold it with to keep her from getting frostbite.

No, it's not your imagination. She really is becoming more disheveled and crabby as the week goes on. By the time Tuesday came, the girl was a wreck. She woke up groaning again that morning around 4:00 and was in meltdown mode. She was groaning so I got up to see if she was okay, and she was laying flat on her stomach. That's always a sign that something's not right with her. She wasn't really awake but she was groaning a lot so I started to rub her back and she got really angry and wiggled away from my hand. I turned to go back to bed and she got REALLY mad and wanted me to pick her up. Once I had picked her up, she didn't want me to touch her but wouldn't let me put her down. I didn't want her to wake up everybody else so I sat down on my bed and bounced her a little. She got mad that I sat down but I was tired so I did it anyway, but once I sat down she would get really mad if I touched her. She sat on my lap crying and eventually I laid back and tried to go back to sleep with her sitting on me. At some point, she laid down on the pillow and went to sleep for a while. That was about the point where I was ready to take everybody home and put them to bed in their own beds at 7:00 pm when they normally go to bed. (yes, we're mean and our kids go to bed at 7) She was a worn-out, crabby little girl.

Which is why later that day when she fell asleep in the high chair, instead of getting her out to try and lay her on Grandma's bed for a nap, we just left her there and gave her a pillow instead. It seemed less risky. 

Tuesday night was our last family dinner before we left to come home so after dinner, we took the kids outside to take a few pictures. We have pictures of the 4 two year olds from the last 2 summers so we HAD to take more this year. :) They're in order of age, oldest to youngest from left to right:

And here's Grandma & Grandpa with all 12 of their grandkids:

It was an exhausting but awesome week and the kids can't wait until next summer when we can visit again! Thankfully everyone is catching up on sleep and getting back to their normal selves. :)



Saturday, June 23, 2012

Raya swallowed fries

Mark this day on the calendar! We went to dinner for Daddy's birthday and during dinner, Raya bit, chewed, and swallowed 4 whole french fries! There was no stuffing of the cheeks followed by me making her spit it all out into a napkin several times during dinner like before. Then she let me feed her a total of about a teaspoon of my mashed potatoes divided into about 20 bites while meowing. She thought she was pretty funny pretending to be a cat and letting me feed her. At one point she said, "You fee-in' me!" (you're feeding me!) and then let out a big cackle. After that, she had 3 tiny tastes of ice cream. The last one had chocolate syrup with it and she made a yuck face but insisted that she liked it. Don't know what's gotten into her but I'll take it. :) It totally made up for the other unpleasant/amusing dining experiences we've had at Applebee's. :) (you can read about those here and here.)

She's saying "my mow-feen!" Translated to "my mouth is clean!" Love her. :)

Thursday, June 21, 2012

Home again and feeding pump drama

Yes, we're still alive and yes, we made it home safely. :) We packed up everything of ours that we could find at my parents' house (probably left behind some socks & underwear) and headed for the airport. It was a long and miserable ride because we'd had to leave the rental at the dealership and cram everybody into her car that's not made for as many people as we needed to fit into it, but we survived. The people at the Boise airport were SO nice to us. The airline people didn't even ask me to open my medical supply bag to verify that it was medical supplies, which I appreciated since I'd had to cram everything in like a jigsaw puzzle & was afraid I wouldn't be able to get it all back in. :) They also issued my mom a gate pass so she could help me wrangle the troops to the gate. We could have done it without her help but it was nice to have her come with us and see us off at the gate. I also got to go potty all by myself and get a hamburger while she sat with the kids. It was lovely.
I was once again pleasantly surprised by the TSA employees at the Boise airport. Let's just say that pretty much all of the negative airport experiences we've ever had have been at the Boise airport. :) This time everything went really well though. They had us go through the little exit gate to get to the screening area instead of waiting in line, which was nice. I put the bags with liquids in the first bin to go through the machine, sent the kids through one by one, and then went to the table where the guy was examining the liquids while the kids picked up their backpacks. It was a really smooth process. Since we were on our way home this time, I didn't bring any unopened formula on board with us and that eliminated the need for a pat-down or opening any formula. This time, the TSA guy had me open one of Raya's med bottles and he did a vapor test on it where he held a little piece of paper over the bottle. Once that was cleared and he opened the backpack to look inside, he sent us on our way. The entire check-in and security process took less than 30 minutes.
Unfortunately, the US Airways employees at the gate were not very understanding or helpful at all. On our flight there from Phoenix, they had let us get in the plane first so we could clean our seats with Clorox wipes and get all settled in without being in anybody's way. This time, they made us wait until they had boarded all of the First Class passengers and all of the fancy-schmantsy preferred whatever members. By the time they finally let us get on the plane, there were about 15 rows of people that we had to go past. I get that these people pay extra money for whatever privileges they get but I think if I was them, I'd rather let the lady with 4 kids carrying several backpacks and a carseat get in the plane first than get whacked by whatever they're carrying and listen to the 2 year old freak out because Mommy won't let her help carry the carseat. We eventually found our seats, cloroxed everything, and sat down. This time the stewardesses didn't offer us water bottles like the nice ladies did on the first plane. This child was having a total meltdown from the time we walked into the airplane until about 15-20 minutes into the flight.
I thought she was going to need a barf bag while we were taking off & climbing. It's always SO bumpy above Boise! At the same time that she was melting down, her piece-O-crap feeding pump (which we had problems with all week) kept giving me ERR99 messages during her feed, which kept clearing out all the information in the pump. It's good that airplane windows don't open or it may have gotten chucked into the ol' Grand Canyon.

Finally, sweet relief came when she fell asleep after we got past the turbulence above Boise. A sleeping toddler is a beautiful thing, especially just after a meltdown.
Notice how she had wrestled one arm out of the carseat strap. It was a pretty big fit. I'm sure people on the plane weren't happy about the screaming toddler but lucky for everyone, nobody said anything or even dared to look at us. It wouldn't have been pretty. :)

I think the week of zero naps and lousy nights' sleep finally caught up with her and she slept until just before we landed. It was awesome. The other kids kept themselves entertained (or rather, their electronic devices kept them entertained) and I was able to jot some things down in my journal that I wanted to remember from the amazing week we had. When we landed, we again waited for everybody else to get off the plane and by the time we got to the baggage carousel, our two bags were the last ones on it and it wasn't moving anymore. That's how you know you're slow getting off the plane. :) By the time Donny came to get us, there was more than one child crying and everybody was at the end of their patience. It was definitely time to go home. And you know you're descending into Phoenix when you look out the window and watch the plane get swallowed up in the brown cloud :)


The first order of business when we got home was to take care of some ridiculous feeding pump drama. We've had a wonderful Zevex Enteralite Infinity pump for probably about 1 1/2 years now. We went through a few pumps in a short time before that for one quirk or another but this one has been fabulous and we've had no issues with it until recently. The problem was this. There are 2 little metal tubes inside the charger plug:
Recently, we noticed that one of them was sticking out a little. We kept pushing it back in and it wasn't a big deal because the pump still charged fine. Then 2 days before our trip, this happened:
The loose metal tube ripped out of the charger plug and got stuck on the pin inside the pump. Since we'd had the pump for such a long time and they're supposed to be serviced about once a year, I decided to just take the risk and trade it in for a new pump. I really didn't want to leave town and have a problem getting the pump to charge. Our home health company, who shall remain nameless but is affectionately known among many tubie families as "Crapria", sent out a different pump that afternoon. When the delivery guy came, we turned on the pump to make sure it worked and it immediately flashed "LOW BATT" and turned itself back off. Fabulous, thank you for delivering a pump with a dead battery. I signed the paperwork and he went out to his truck to leave. I plugged the pump in and while I was doing that, I opened the pump door. To my annoyance, the clear plastic inside the pump was covered in cracks:
I ran back to the door to see if the guy was still outside and he was, so I ran out and flagged him down. I showed him the cracks and told him that we would need a different pump. His reply was, "Well, the pumps are all tested before they're sent back out so it's probably fine and it's probably just cosmetic." I said that I understood that but that we were leaving town on Wednesday morning (this was Monday afternoon) and cosmetic or not, I wasn't willing to risk going on vacation with a pump that might crap out on us. He said he'd let his supervisor know and asked again when we were leaving, so I told him we were leaving early Wednesday so we would need a new pump delivered on Tuesday. They never showed up and I was busy getting everything ready to go, so by the time I realized they weren't coming, it was too late to call.
I was not happy about having to take a broken pump with us but we didn't really have a choice and it seemed to be working okay. At first. We had problems with it the whole week. The pump battery NEVER fully charged even after being plugged in all night long. The battery couldn't hold a charge for more than a few hours, which led to several feedings where Raya had to be plugged into the outlet for the whole feed:
She didn't appreciate that. (and on an unrelated note, why is Mary Lou Retton on the Wheaties box again? Have they run out of sports heroes?) I didn't appreciate it either because it was just one more thing to make her cranky and she did NOT need any help there.

In addition to the battery issues, we had a lot of ERR99 alarms. We've had other times where we had ERR99 and ERR63 alarms with the pump we had before, but it was always right when we turned on the pump so it wasn't as big of an issue. On the Zevex Infinity pump, the ERR63/99 or any other ERR_ _ alarms reset all of the settings on the pump and clear out the volume and total volume. When that happens just as you're turning on the pump, it's annoying but at least the only information you lose is the total volume for that day. With this pump though, we kept getting ERR99 alarms DURING feeds. That meant that the pump lost all the information about how much she had been fed during that feed and for the day. It was so frustrating!! I knew how much I had put in the pump that morning but it was impossible to know how much more she needed for that feed without dumping all the formula out of the pump and measuring it. It was RIDICULOUS. It happened TWICE during the same feed on more than one occasion. I was seriously ready to throw it at the wall. The problems got worse as the week went on and I know Raya missed out on some of her calories because of the pump errors. I'm glad she doesn't have another weight check or GI appointment until next month. We need a little time to get her back on track.

Anyway, I called the home health company and told them that the broken pump they'd brought us to replace our broken pump needed to be exchanged ASAP because it had caused us problems during our whole vacation just like I told their delivery driver it would. The nice customer service girl apologized for the inconvenience and they brought out a new pump around 6:00 that night. The battery on that pump was so dead that we had to plug it in to even get it to turn on. I asked the delivery driver (probably in a not-so-nice tone) if it was customary for them to deliver pumps with dead batteries as this was the second time in a week. He said that he wasn't sure about the Zevex pumps but that he knew they always had the Kangaroo Joey pumps plugged in. I really didn't care about the Kangaroo Joey pumps, I was just annoyed about getting ANOTHER dead pump, but luckily this one worked when it was plugged in and so far seems to be okay. 

I put sticky notes on the broken/problematic pump explaining what the problems were and that the pump was absolutely not fit for a patient on continuous feeds. I hope somebody paid attention to it. I'm planning on emailing the company to let them know that whatever their "testing" procedures are for pumps that are returned may not be good enough. If Raya had still been on continuous feeds and had gotten that pump to take on vacation with us, we would have ended up in the hospital or at the very least, she would have spent HOURS plugged into the wall and I would have had to wake up at all hours of the night to fix the ERR99 alarms and reprogram the settings every time it went off. It makes me angry just to think about it because it makes me wonder how many other people are miserable because of problems with faulty feeding pumps.

{Deep breath} Hopefully pump #3 will be the lucky one. We realized that a previous user had turned off the end of dose alarm so I need to refer back to the online pump manual again to remember the secret combination for how to turn that back on. I heard a rumor that the company that makes the Kangaroo Joey pump is coming out with a mini pump. That would make me so happy! (I think...)

To end on a positive note, we had 2 very good airport/airplane experiences and traveling with a tubie (i.e. getting through security with a tubie) was not as difficult or traumatic as I was afraid it might be. The end.

Tuesday, June 19, 2012

About all the fun she can stand

This girl has had about all the fun she can stand for one week.


We've had an amazing week at Grandma's house but we are all exhausted and ready to head back home and sleep in our own beds. Operative word being SLEEP. Raya hasn't done much of that this week, bless her little heart. Last night she woke up and was so angry. She wanted to be held but had a fit if I touched her at all with my hands or if I moved. She fell asleep while she nibbled on a cracker this evening and I just left her.


We are SO grateful we got to escape the Arizona heat for a week and SO grateful to have spent time with a lit if wonderful family members that we don't see often enough, but we're ready to go home and get back to our routine. (can't wait to get her back to OT again! :)

Friday, June 15, 2012

Retiring an old companion

Exactly 2 years ago this week, we said goodbye to this big clunky backpack & pump:
6-13-10
And hello to a much more compact and baby-friendly one. With the new pump came a new backpack, and it was small enough for a 7 month old to wear it. Sort of. :)
6-13-10, 7 months old
That poor little backpack has been through a lot. It's traveled to 5 different states, held GALLONS of formula, been dragged around, run through the washing machine, and goodness knows how many times it's been vomited on and had formula spilled in it. Raya learned how to crawl wearing this backpack:

And she learned how to walk wearing this backpack:
Raya on her first birthday
 After 2 years of around-the-clock use and abuse, it has seen better days. Actually, it's downright trashed. The lining has long since torn out of the inside, one of the straps has almost completely come unstitched, the padding has long since flattened out in the straps, and there's a giant hole in the top from where the heavy formula bag has pulled on the hook & velcro and shredded the fabric at the seam.
It really has seen better days.

We've had a new one sitting in our storage bench for over a year but I decided that we'd wear out the old one completely before getting out the new one. In light of our vacation this week, I decided now was a good time to break out the shiny new backpack. I don't like it. There's no hook to hang the formula bag on and the belly strap is too short to put it under Raya's belly like we did with her old one so it hits her just barely below her G tube. It did come with a nifty little carabiner clip though and it has a little pocket on the front that the old one didn't have and honestly, I'm just grateful that changing insurance last year allowed us to order a new one from home health without a hassle. 
Thank you, faithful old backpack, for a job well-done. You have served your time and deserve to rest in peace.

One of my favorite pictures of Raya, July 2010
And we can only hope that this new backpack won't be necessary 2 years from now. :)
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