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**Disclaimer**

**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**


Sunday, March 31, 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 to church for 3 hours) She flipped through the hymn book for a while and thoroughly enjoyed it. Funny girl. We let her take the water from the sacrament which turned out to be a bad idea because she choked on it. It was one tiny sip of water and must have gone straight into her lungs. After she recovered from that little incident, she colored for a while.

Then she danced to the choir's Easter performance:

She sat on my lap for the last couple minutes and then said, ”Is it over now?” Donny and I laughed. Nope, 2 more hours, sister! She came class with us and did well aside from me having to say shhhhhh about a hundred times. She played with the little toys she had brought and sang songs she was making up about the ninja guy and Candyland guy. When Sunday school was over, she asked if it was time to go home. Nope, one more hour! That was the point when her 17+ hours of being awake yesterday and 6-ish hours of interrupted sleep last night caught up to her. She was DONE. I thought we could tough it out but she's heavy (especially when she's mad & wiggling) and my arms were tired so I decided to put her in the stroller and walk home instead. I asked her if she wanted to stay at church or take a ride in the stroller and as soon as I said the word, she was ready to go.

The weather was beautiful so I didn't mind leaving early to take a long walk. She was in her ” happy place” in the stroller with her blanket, I had Sunday music playing on my phone, and there was a nice breeze. I think it only took her about 5 minutes to fall asleep.

The walk home took about 20 minutes and I had hoped she would stay asleep once we got home but she didn't. That's what I get for thinking I could take her out of the stroller. She threw a bit of a fit when we came in but thankfully it didn't last too long. Or I guess I should say she took a break until I was cooking dinner. She had a 20 minute fit about wanting a Dum Dum for dinner, which was fine except I could not find any. I finally found one in the console of my car and then she threw a whole new got because she wanted blue, not green. Eventually I found something else she was okay with and we called a truce. For dessert, the rest of us had strawberry-blueberry shortcake so I made Raya ” special Easter pudding” so she could have dessert too. It was vanilla Neocate thickened with Simply Thick and dyed blue. She loved it. :) This was after our long walk home, hence the red cheeks and dazed & confused look on Raya's face:


I sure do love my sweet kids! (even if the only way I could get a picture with all the kids looking in the general direction of the camera was to put it on the TV stand while Super Why was on)

Saturday, March 30, 2013

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's gotten that upset over food so I just hugged her and told her that I was sorry she wouldn't be eating any strawberries and redirected her attention to something else.

She's telling me several times a day that there's puke in her throat. One of the times that she was complaining about it hurting, I offered her mint flavored Mylanta and she actually swallowed it. It must have really hurt! She has a little it of blood seeping out of her stoma again so hopefully the Carafate she's getting for that will somehow help her throat feel better too. I guess if  stomach contents can reflux into her esophagus, so can medicine.

Today I had to finish 2 essays and finish studying for & take a 400 point lab practical for my anatomy      class so I ended up having to miss out on the family get-together this evening so I could get my homework done. As much as I would like to have been there, it was AWESOME to have a quiet house all to myself. While I was slaving away at the computer all day, the kids were having a blast playing with cousins at Grandma&Grandpa's house. They got to color eggs, have an Easter egg hunt, and ride horses. Raya even got to ride and LOVED it. (Unfortunately since i wasn't there, there are probably no pictures unless someone happened to take some.) Raya told me all about her adventures as soon as she walked in the door. Actually, she hasn't stopped chattering since then. It's now after 11:00 and little miss fidget is still WIIIIIIIIIIIIDE awake talking and singing made-up songs about being allergic to various foods, and I'm exhausted just from being in her presence. This is why we shouldn't get off of her normal schedule. It will make for an interesting day tomorrow since she'll be going to church with us for the first time since October or November. GO TO SLEEP, KID!!





Wednesday, March 27, 2013

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's pretty friggin' good. Fortunately they were able to schedule us for this afternoon at 3:30 and it was once again a very productive appointment.

I hadn't heard anything about the MRI that she had in January, so I assumed that meant it was normal or she would have called me. I was right, it was normal. I was actually disappointed. I know that probably sounds awful and I certainly don't wish a brain abnormality on my child, but having something funky pop up on the MRI would have given us something to back up her diagnosis of cerebral palsy. Oh well, I guess we'll be sticking with a strictly clinical diagnosis. That was the disappointing part. (but yes, I'm glad there's nothing wrong with her brain)

Moving on. She asked me how the medication is working out that she prescribed to help Raya with her sleep difficulties. Oh my goodness, that med is the BEST thing that has happened to us in a long time. Our last appointment (the day she prescribed it) was my birthday and I told her it was the best birthday present ever. I have had many moments of guilt over the fact that we are using a medication to help her sleep and have hesitated to even mention it, but she has gotten so much more sleep since we started using it, and it helps her to be more calm and focused during the day. As difficult a time as she's had with sleeping in the last month since she's been sick, I can't even imagine how awful it would have been if we didn't have this medication to help her go to sleep. Lack of sleep carries over into so many other things, and sleep is so important, especially to someone who is sick & needs that time for the body to heal. She was very happy to hear that it's helping and reminded me how important it is for Raya to be getting enough sleep.

I started getting reminder phone calls (and text messages and emails...) 10 days ago for this appointment (seriously, 10 days?? I can't even remember what I ate for breakfast this morning. I want the 2 day reminders back). When I remembered that we had the appointment coming up, I was really glad. She's had some quirky little things going on lately. Most of them involve sweating but she kind of freaked me out a couple times in the past week or two with some breath holding (related to reflux) and being completely pale & cold and clammy to the touch while she was asleep. We talked about all of it and other related things we've seen in the past and decided to look into autonomic dysfunction (aka dysautonomia). There are several different types of dysautonomia and it can come in varying degrees, and I'll explain more about it if we decide that's what's causing her quirks. :) While we were talking about the sweating issues, she looked back through Raya's 3+ years of lab work and realized that although thyroid function labs had been ordered 3 years ago this month, the labs had never actually been done. We have NEVER DONE THYROID LABS. Both of us just sat there in shock for a little bit. I'm not sure that thyroid labs will show us anything new, but it's hard to believe that something so routine has been overlooked for 3 years. She ordered the TSH & thyroid panel (FYI, TSH is thyroid stimulating hormone, and it stimulates the thyroid to produce thyroid hormone & calcitonin. In case you were wondering.) She also ordered a funky lab to try and look into the dysautonomia. When she was telling me about that lab, she said something to the effect of, "They're going to see this and wonder why I'm ordering this crazy lab c/o Mayo Clinic. It's because I think outside the box!" I told her that's one of the reasons why we love her. :) There are several, but one of them is the fact that she will tell me about something, give me websites to look at, tell me to read up on whatever the thing is, and then next time we see her, she asks me what I think about it. She listens to me and actually WANTS to hear what I think. She is fabulous.

We'll have to wait a week or so for the thyroid labs but the others will take about a month. Good thing I'm used to waiting. Honestly I'll be surprised if it shows anything. I've become very good at expecting normal test results and not getting my hopes up that a test is going to give us helpful information. Cynical, perhaps, but also a necessary survival skill when you're the parent of an undiagnosed kid. Her doctor is going to be out for a month so we'll see her again in July but probably will talk to her before then about the results of the dysautonomia lab.

This evening, I threw some quick dinner at the kids (figuratively speaking) and then left for the evening to go have a little girls' night with two of my dear friends. They were some of the first "tubie mommas" that I met in person and our girls are fairly close in age. We had planned on doing another photo session with them like we did a year ago while Alicia's family is in town for spring break but sweet Miss Lily is in the hospital again so we couldn't make it happen and opted for a girls' night out instead. They are so much fun to talk to and have saved my sanity since I met them. I wish we could see each other more often. I've met so many amazing moms and I wish it wasn't so difficult to get together with everybody!



And of course I jinxed myself and while I was typing the part about how much better Raya's sleeping with the medicine, she woke up screaming. Now she's nodding off on my lap. It's been a long day but a good one.


PS I mentioned that our friend Lily is in the hospital again. Her parents found out this evening (right before our GNO) that she will be having a surprise surgery tomorrow to place a new central line. With her mitochondrial disease, anesthesia is always scary. If you are the praying type, please add a little prayer for Lily and her parents. ♥


 

Tuesday, March 26, 2013

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 picking her up because I was reliving her infancy by watching videos on the computer. Comical, really. It was fun looking at everything though. Here are a few of my favorites that I came across. Girlfriend had some great facial expressions.
Back before she was anti-pacifier





Don't mind me, I just disconnected the pulse ox so I could chew on it.

Let me out!





 And here are a couple of recent fun ones. I came home from the grocery store last night and she was passed out like this:
 I know it looks like she could slide off any second but she was actually wedged in there pretty good so I had time to take a picture and put everything down before I moved her. Donny had tried to move her before but she got upset so he decided not to rock the boat.

This is going to be one of my all-time favorite Raya pictures, even if it is a crappy cell phone picture. This is just straight up Raya:
 Surprisingly, the pump was still running. I just LOVE that facial expression. :) Really, I just love everything about her.

Saturday, March 23, 2013

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 good or if it was because we were in a park swarming with people she doesn't know, but she just wanted to sit in the stroller the whole time. SO not normal for her. 

Once it was time to find eggs, she did get excited. Being the last-minute person that I am, (and not really doing much for the commercial side of Easter) the kids used plastic grocery bags to put eggs in. Except for Ashtyn, she had misplaced hers between the car and the park so she just had to carry her eggs. :) Raya had a great time picking up the 3 eggs she found and putting them in her grocery bag.
 I crossed my fingers that it wouldn't get ugly when I had to take the candy out of them. I was pleasantly surprised to find that 2 of them had cute little Easter erasers in them. The 3rd one had a packet of Sixlets and she held them out to me and said, "I just don't like these." Well okay then! I was sad that she couldn't keep her candy and eat it like all the other kids, and sad that I had to agonize over whether or not we should go, but thankful that she had a good time, thankful that she didn't care about the Sixlets (I ate them...) and extremely thankful for the person who put cute little erasers in some of the eggs. 

Friday, March 22, 2013

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 her FT didn't quite understand that.  

Anyway, when we walked into therapy a couple of weeks ago, I was feeling guilty and a bit awkward about going to therapy just for Raya to take some sips of vanilla Elecare or chocolate Neocate and play games on Ms. H's iPad. I asked her how she wanted to proceed since I had talked to GI and confirmed that solid food is nowhere in sight at this point. I have to admit that even though I feel kind of silly doing feeding therapy with no actual "feeding" involved, I was relieved when she said that she definitely wants to keep Raya on her schedule. The question was how to proceed knowing that there won't be any food added for an indefinite amount of time.

We decided that now that Raya's actually interested of her own accord in drinking chocolate Neocate, it's totally appropriate to work on getting her to drink a certain amount of it within a given time frame. In the past, I've never felt like it was right to push formula on her. She was not interested, simple as that. Before the "no food" policy went into effect, getting her to eat food was the priority. Now that food is out of the picture for the time being and she's not anti-beverage anymore, it's time to go for it.

The other times that I've brought formula for her to drink, it's only been 2 or 3 ounces. This time I was way behind on her feeding schedule so I took a gamble and did a 2 ounce gravity bolus right before we left for therapy. Thankfully it didn't result in vomiting but she did tell me that I made her tummy hurt and held a puke bag while we drove to therapy. Lesson learned, won't try that again. She had OT first and wore herself out pretty good. She had a great morning (probably due to the fact that I was way behind and hadn't fed her) so she was VERY happy to go to therapy. 

When she finishes with OT, she pretty much runs to the feeding therapy room. We almost always have to remind her to get back down out of the chair and wash her hands. She's just too excited to get in the chair & get going. I just happened to have mixed up 5 ounces instead of 3, so we decided to see if we could get her to drink all of it within the hour.

At first, she did great. She downed the first 2 or 3 ounces pretty well within about 15 minutes. The more she drank, the smaller her sips got. She was still taking the 2 or 3 sips we were requiring of her in between turns on the iPad game she was playing with Kaida, but they got smaller and smaller every time. The other thing I noticed was that she got more and more squirrely and restless as she drank the formula. The more that went into her stomach, the more wiggly she got. It was a classic illustration of how her gut is tied into her sensory issues. Instead of what you would expect to see from a kid whose stomach is getting uncomfortably full, she got really wiggly, seemed hyper, was less focused, and really just seemed like she was being rowdy. I didn't put it all together until later but once I realized why she was acting like she had been, I felt bad for pushing her. Instead of getting 250ml at a steady rate over 2 hours' time, she had gotten 60ml as a gravity bolus and then about 90 minutes later, she got another 150ml in about 25 minutes. At least we've confirmed that there's a reason she's getting 2 hour long feeds now.

For the time being, our new goal with feeding therapy is for Raya to drink the whole amount of formula that's given to her (3 oz for now) within a reasonable amount of time without getting down and running around in between every other sip. That's pretty easy at therapy, but it gives us a good challenge to work on at home. 

Thursday, March 21, 2013

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 her. She repeated over and over, ”I just don't want to go to school today!” Over and over and over the whole time I was connecting her pump and putting her backpack on her. I signed her in and her teacher picked her up and held her while I got back in the car to leave. I hate leaving her like that but I knew she'd get over it once I left. When I came back to pick her up, she was acting more calm & subdued than normal but she was happy. I was happy too when I went through her backpack and saw that she had finished the whole 3 ounces of chocolate formula that I sent for her snack. I can't get her to drink the vanilla now but at least she's drinking the chocolate. She drained me today. Every single thing that she said or did involved a whole lot of repetitive whining. She's repeating phrases and sentences quite often lately and has been very difficult to understand when she talks. She whined at me all.day.long. She alternated the whining with, ”Mommy, I just like you.” and, ”Mommy, I LOVE you.” It was unprompted and very sweet and helped me overlook some of the whining. She didn't have quite as much energy as usual today for some reason, which meant a little less energy expenditure on my part in trying to keep up with her, but by late afternoon I had a nasty headache. I took an evening nap and slept past when she gets her night medicine, but by then she was already lying on the floor so I decided she probably wasn't going to need it anyway. She must have heard my thoughts because she stayed wide awake until 10:45. That, my friends, is a very long day. This sickness she's had for the past 3+ weeks has done a number on her good sleep habits. She hasn't gone to bed and stayed there all night more than a couple times in the last month. Tonight she sat on the couch playing with books until finally squishing her little self onto the couch next to me. She likes to lay partially hanging off the edge of the couch so she's not actually touching me. I was just about to go put her in bed when she twitched, almost feel off the couch, and rolled over to snuggle. My plans changed. I'm not moving until she does. Times like this make up for all the exhaustion of the day. It fills my heart with joy to have her sleeping relatively peacefully with her little face on my arm. (it also makes me wonder about some of the things she does in her sleep but that's a topic for another day) She's so incredibly full of energy and spunk during the day that when I get these rare opportunities to snuggle or hold her while she's sleeping, I suddenly don't care about anything else but soaking her in while I can. I love the way her little fingers grip my arm, the sounds of her breathing, and the occasional sleep chattering and lip smacking. These are the things I never want to forget. It's sad how fast kids grow up. Snuggling with my babies is truly one of the greatest gifts God has ever given me.

Wednesday, March 20, 2013

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 the selection, I couldn't help but notice them. At first glance, it looked like the boy was wearing a pair of those big headphones that are all the rage right now but I quickly realized that they were not headphones for listening to music. They were noise-canceling earphones.

As soon as I realized that, I started to notice other characteristics similar to those of some of the kids we see at the therapy clinic Raya goes to and guessed that this boy probably has autism. I couldn't help but watch him as he silently ran his fingers over the DVD cases on the shelves, touching every single one. He walked with a bit of a spring in his step, his heels never really resting on the floor. His father had a thick, athletic build but the boy was very thin, perhaps because of sensory issues that make eating difficult. (I can only guess...) He made a few sounds and used a lot of hand gestures, but never actually spoke.

A couple of times, he seemed to get distracted. He turned away from the DVD shelves and started to walk away. Each time, his dad gently reached out and held onto his arm and spoke softly to him as he guided him back to the shelves. The boy (who looked to be about 14 or 15) was quiet, calm, and happy as he selected 3 cartoon DVDs to check out and take home with him. His dad reminded him that he could only pick two and held out the 3 DVDs the boy had chosen. I couldn't hear what he said to his son, but without speaking, the boy pointed to one of the DVDs and he put it back on the shelf. They walked out of the children's section and towards the check-out station, but stopped by the giant dollhouse in the glass case so the boy could look at it first.

Once or twice during the time they were there, the dad walked by and we made eye contact. I smiled and nodded, hoping that he could somehow see that I was watching in admiration rather than staring in judgement. I wanted him to know that I could see the results of what has likely been a lifetime of hard work on their part. From the boy's calm, content demeanor, to the way they communicated without speaking, to the gentle and patient way that the dad kept the son focused on what he was doing. It was awesome. If I could have high-fived them both, I would have but I couldn't, so I just high-fived them in my head.

I find myself doing that a lot now. Being the parent of a child with special needs has changed the way I look at other kids and parents. It is nearly unbelievable how hard some children have to work just to be able to function on a daily basis (like so many of the kids we see at therapy). I would venture to guess that an older child who, like the young man we saw today, still needs to wear noise-canceling earphones in order to be comfortable in a public place like a library, has overcome unimaginable obstacles just to get to that point. I was proud of him. I don't know him and will probably never see him again, but I was proud of him and, I suppose, proud of his parents too. They have obviously worked very hard with him.

When you're out in public and you see someone with special needs, no matter what they're doing, whether they're behaving beautifully or not, know that the people who take care of them are working very hard every single day. Recognize that no matter how the person is behaving, they have likely worked very hard to overcome obstacles just to get to that point and will continue to work hard every single day. High-five them for it, even if you're just high-fiving them in your head. They deserve it. To the dad I saw today at the library, keep up the good work. You are obviously doing a great job with your son. {*high five*}




Tuesday, March 19, 2013

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. Before that, the best we could do was for her to sit on the counter and brush her own teeth while I brushed mine so she could mimic what I was doing. I thought she did a pretty darn good job for a 2 or 3 year old. Then it got to where I could get her to let me have a turn brushing her teeth after she had brushed them. Now we're to the point where we either do that, or else I can just brush them myself. It's tricky because parts of her mouth are pretty sensitive still. (that was a long way of saying that her teeth have not been brushed as much as they should) In spite of the lack of brushing, her teeth were still looking awesome.

On top of the lack of brushing, she has not been able to breathe through her nose at all for at least 3 weeks, probably more, so she's mouth breathing. On top of that, she's no longer eating anything by mouth, which helps to keep the teeth clean. Even before when she wasn't eating much of anything, she was eating ice and that helped clean her teeth when she wouldn't let us brush them at all but now she won't really even eat ice. On top of THAT, her reflux has been worse in the last couple of months than it's been since she was a baby. Add all that together and you get a 3 year old with horribly cruddy looking, stained teeth. There was no decay at all (thank goodness) but TONS of staining. I was actually embarrassed going into the appointment because I should be able to keep her teeth from getting like that. Thankfully, the people we worked with today were MUCH nicer to me about it than the hygienist that cleaned her teeth at her first appointment.

Raya was the last one to get her teeth cleaned. She watched Kaida get hers done and by the time Kaida was finished, Raya was excited to get a turn. (this is where it pays to have more than one kid!) I went over the changes in her medical history with the hygienist really quickly and Raya climbed up onto the table. She got to wear some snazzy sunglasses to help with the bright light in her eyes. She HATES bright light. She always tells me, "It's too hot!" so the sunglasses were a great idea. Plus it was adorable. This was the first time (in 3 or 4 appointments) where they actually used the spinning brush thingy to clean her teeth. The other times she's gone, they've just brushed her teeth with a toothbrush. She had psyched herself up for it by telling me at least a dozen times today, "I'm a BIG girl! I'm TOUGH!" so she was ready for it.
She did AMAZING. She handled it even better than I expected. The hygienist was amazing too and VERY accommodating of Raya's needs, like using wet gauze to wipe the polish off of her tongue & teeth rather than spraying water in her mouth. She started with the front teeth and worked toward the back so that she could at least get as much staining as possible off of the front ones. Raya did so great though. The hygienist got all the way to her back teeth (she doesn't have all her molars yet) with the brush and on top of that, she was able to use the scraping hook thingy (dental words aren't my forte') to clean more off of the bottom front teeth. That was about all Raya could take before she was done, but she didn't freak out or gag or puke or cry at all. I'm always proud of her when she handles difficult appointments so well, but this was seriously amazing. I never expected to be so proud of a kid just for getting their teeth cleaned but she really worked hard to be okay with everything that the hygienist was doing in her mouth. I think her first feeding therapist would have peed her pants if she'd seen how good Raya did.

The dentist took a good look at her teeth too and said that if they start to get bad again, we could try doing more frequent cleanings to see if that helps. He did a fluoride treatment, which she also handled very well, and then she was ready to get down. The kids all got to put tokens in the prize machines and then we had to go pick up a prescription from the pharmacy and then go to Walmart to pick up some probiotics for her. By the time we got there (3 miles down the road), Raya had unrolled her entire thing of dental floss from the bag they gave her at the dentist's office. It never lasts until we get home. Unrolling dental floss is one of her great joys in life.

I parked the shopping cart & was debating between Florastor and Culturelle, and Raya yelled excitedly, "TUMS! PINK ONES!" (because she will only eat pink ones now) She was GIDDY over the shelves and shelves of Tums.
Funny, cute, and sad all at the same time. She loves her Tums! (but only pink. not sure what I'm going to do with all the purple ones.)

She had been going nonstop all day today and by the time we got home, she was beyond tired. She said she wanted to have chocolate formula for dinner but then never came to the table so she missed out on that. She wanted a shower but we didn't have time for that so she was unhappy about that. She got upset when I put her in bed because she wanted to sleep in Ashtyn's room. For the next 45 minutes, she cried, screamed at me, and repeated over and over again that she wanted to sleep in Ashtyn's room. She was tethered to the IV pole and plugged into the wall, but she managed to unplug the charger from the feeding pump. Sometimes I even have a hard time getting it unplugged so I was impressed (and scared) by her beastly strength. For part of that time, she was falling asleep sitting up and then she'd jerk awake and start crying about sleeping in Ashtyn's room again. I finally just put her on the couch in the living room and she was asleep within a couple of minutes.
Then she started talking in her sleep later, fell off the couch, cried for a minute or two, and went back to sleep. Hopefully she'll sleep well tonight because I NEED her to go to school tomorrow. I kept her home today because she was up until 10:30 last night and was feeling yucky this morning. I'm SO ready for her to stop being sick and get back on a good sleeping schedule again. Last night she laid on the couch sorting out the cards from the Angry Birds game over and over again before she finally fell asleep with the cards in her hand. I love pictures of her sleeping. :)

Monday, March 18, 2013

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 PLEASE PLEASE PLEASE watch another episode of Monk on Netflix, or tiptoes into the doorway of our room and whispers loudly ” GOODNIGHT” 5 times in 5 minutes, but it's now 12:30am and it's time to get that little fanny in the big girl bed and keep it there! Did I mention we inadvertently missed giving her the ”nigh-night medicine” at the regular time tonight? Yeah. Now we remember why we decided it was a good idea. She did finally sleep in her bed last night, by the way. Her sleep has been so off ever since she's been sick. We're back to where we started with our current OT when we started working with her almost exactly a year ago. At that point, Raya needed some serious rest & relaxation so pretty much every session ended with Raya going to sleep for about 20 minutes. Her body is trying to kick all this crud she's had for the last few weeks but that's hard to do when you're not getting enough sleep so we've shifted gears at OT and we're working on helping her relax again. It seemed to work rather well on Friday: I love when she falls asleep in the swing like that. It makes me tempted to put one up in her room. :)

Friday, March 15, 2013

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 pump in hopes that it would make the pump stop beeping. Moog has removed the manual from their website, presumably to give it an overhaul and replace all the Zevexes with Moogs, but fortunately it's still available on other websites. I saved it to my hard drive just in case it disappears from those too. Moog does still have a handy little troubleshooting guide on the website, but it's definitely not the same as the full manual. And manuals are boring to read, so I thought I'd share some of what the manual says only with actual pictures instead of drawings, and in my own words, which (IMO) are much more fun than the manual. (I used to have a link to the manual here but those links go bad often so just google Zevex Infinity Pump Manual and you'll probably find one that works.)

Without further ado, here is a little bit of information about the different alarms on the Moog Enteralite Infinity pump:


Self-test failure alarms: They can be ERRA-ERRZ or can have ERR followed by numbers, like ERR 63, and a continuous beep that makes you want to throw it against the wall. We've had pumps that would do that once or twice a month and it's one of the most irritating alarms because it would reset all of the pump settings to 0 and clear out all of the volume information. All you can do about those is turn it off and turn it back on. If the alarm continues to go off after you've turned the pump off & back on, then the pump may have some kind of internal failure and will need to be replaced or serviced by the home health provider, so call them ASAP.

Load set: This alarm will bark at you if you happen to push the run/pause button without a pump set loaded in the pump.

Low Battery: The manual says that this alarm will go off when there's less than 1 hour of battery life left. In our 2 years and 9 months of experience with the Infinity pump, we've NEVER had one last more than 15 minutes once the low battery warning goes off. Most of them have turned off within 5 minutes of the first low battery warning. Never leave home without having the pump charged. :)

Push Run to Feed: This alarm is kind of insulting. It might as well be saying, "Hey slowpoke, can't you do meds and refill that bag in less than 2 minutes?!" Or, "Hey! You forgot to start the feed!" But yeah, all you have to do is push the run button to stop the alarm and then push it again to start the feed. I've learned though, that if you know the alarm is about to go off, all you have to do is push any other button on the pump and it won't beep for another 2 minutes.

Dose Done: This one isn't so bad because you can turn it off. I was so happy when I found that out! Here's how you do it:
Turn pump off. Push + and on/off at the same time and hold them down until the pump comes on (about 2 seconds). The pump will display options for different settings, and to change them, you push the + or - key. When you're done with the first setting, push the Prime button and then repeat the process with the other settings. You can change the volume of the pump alarm, lock & unlock the buttons (it only prevents changing feed settings & doesn't actually lock all the buttons), end of dose alarm, and the display light on or off.

Check: This alarm will go off if you push Run and the current interval setting is not compatible with the dose and/or rate. For example, if you have the pump programmed to feed a dose of 200ml every 3.5 hours but you only have the rate set at 50ml per hour, the pump can't deliver the whole dose because it would take 4 hours to deliver the entire dose. If you get this alarm, make sure you actually meant to have the interval setting programmed and that it's programmed correctly with the dose & rate. (Interval is the INT button.)

Shut Door: This one isn't actually listed in the manual, or at least not in the section about alarms. We discovered that this one existed when Raya was supposed to be napping but threw the pump on the floor instead. I walked in and the pump door was laying a couple feet away from the pump. The screen was flashing, "Shut Door" over and over again as if it was crying out for someone to help it. On a side note, if the door ever cracks or the latch breaks and won't stay shut, you can call Moog and get a replacement door so you don't have to hold it on with a rubber band. (been there, done that)

Ok, so those are the more boring pump alarms. The enemies of every tubie & tubie parent are the NO FLOW IN, NO FLOW OUT, and NO FOOD alarms. These are the ones that make our blood pressure rise, rob us of our sleep, and make us want to throw the pump at the wall. Am I right??

When my Feeding Tube Awareness colleague, Traci, and I met with the representatives from Moog last month, they gave us a little Enteralite Infinity anatomy lesson. It wasn't anything earth-shattering, but it did shed some light on things that I hadn't really paid attention to before. It had never occurred to me (or I had never bothered to care) that each of the "big 3" alarms has its own sensor. As soon as they said that, it of course made perfect sense, it just wasn't something I'd thought about before. Here's how it works:

And here are the corresponding areas on the pump set:
The IN & OUT areas are soft, squishy tubing that runs through sensors that can tell if there is too much pressure in that small segment of tubing, which would mean that there's a blockage somewhere. The FOOD area is hard plastic that's almost triangular in shape. We'll get to that again later. First, the No Flow In alarm. (I don't like it in all caps. I think that's why I always feel like the machine is yelling at me.)

No Flow In:
A No Flow In alarm means that there is an obstruction somewhere between the pump bag and the pump, so that's where to look. This can be caused by a number of things. One cause, especially when powdered formula is involved, is clumping of formula. This is why it's important to mix formula thoroughly and allow foam to settle before pouring it into the pump bag. (Here's a blog post all about mixing formula.)

Here are a couple of other things that commonly cause No Flow In alarms:
Before Moog took over as the manufacturer of pump bags, the bottom of the bag was different than it currently is. I had forgotten exactly what it looked like until I found one or two of the old ones buried in a bench full of medical stuff. The new bag design has a hard plastic piece (official title: "no-roll flange") at the bottom to keep the bottom of the bag from folding over and blocking formula from leaving the bag. Sometimes though, when the pump bag is in a backpack, the hard plastic piece can get pressed against the back of the bag and block the flow of formula, which results in a No Flow In alarm. The other common cause that we see is when the tubing gets a kink in it right where it's leaving the bag. This is usually either a result of the pump bag laying funny inside the backpack (especially in backpacks that don't have straps & hooks to hold everything in place) OR it's because the tubing was smashed funny in the manufacturer's packaging and is perma-kinked. If you have a bag where the tubing is perma-kinked (meaning you can't make the tubing stop kinking) you might as well throw it out and get a new one because it's going to keep beeping at you. You CAN try wrapping several layers of tape around the kinked area to keep it straight but if it doesn't work, just get out a new one.

This is our other most common cause of a No Flow In alarm:
This happens when the bag runs out of formula and we've done a good job getting all the air out of the bag. When that happens, we just refill it and send her off on her way.

This next picture shows a common cause of both No Flow In and No Flow Out alarms:
This happens most often for us when the pump is in the backpack. Usually we just have to readjust the pump bag if it's a NFI alarm or make sure there's enough slack in the exit tubing if it's a NFO alarm.

No Flow Out:

The evil stepsister of the No Flow In alarm. No Flow Out alarms happen when there's an obstruction between the pump and the person. I don't know if it's even possible to list all of the things that can cause a No Flow Out alarm but I'll try. For us, it's most often a kink in the pump tubing. Like this:
That's what happens when I let Raya carry her backpack instead of wearing it. It also happens sometimes when the tubing that's coiled up inside her backpack gets smashed & kinks. A little rearranging usually does the trick.

Another common cause of NFO alarms for us is when she's wearing the backpack and the tubing starts to fall out of it and makes the extension tube kink. OH, and how could I forget Raya's preschool teacher's FAVORITE cause of the NFO alarm: Mommy forgot to unclamp the extension tube at drop-off! It's happened a couple of times. Once I remembered as I was pulling out of the parking lot that I most definitely had not unclamped the tube when I pushed the run button as I was dropping her off. I felt bad but they figured it out. Lately she has learned how to clamp the tube herself, so that's been the cause of some of our No Flow Out alarms recently.

For kids with really poor gastric motility (or intestinal motility if J fed), sometimes the pressure from their stomach or intestine can cause the No Flow Out alarm to go off. If you ever suspect that that's the case, call the doctor ASAP.

Lumpy formula can also cause No Flow Out alarms, and so can clogged feeding tubes (NG, NJ, G, GJ, J, etc.) and clogged extension tubes. If you can't immediately tell what's causing it, the best way to deal with a No Flow Out alarm is to pause the feed, hold down the Prime button for a few seconds, and then push the run button again. If there's something inside that little portion of tubing inside the cover (see earlier photo), or if there's a little lump of something blocking the feeding tube, holding down the Prime button for a few seconds can clear it out and make things run smoothly again.

No Food Alarm:
Out of all the pump alarms, this one can absolutely be the most frustrating. One of the biggest complaints we hear on the Feeding Tube Awareness facebook page about the Infinity pump is the phantom No Food alarms. The pump manual says, "It takes approximately 1ml of air, which is approximately 5 inches (12.7cm) in length entering the teal colored tubing to cause an alarm." I actually laughed out loud when I read that. It takes a whole lot less than 5 inches of air to cause a No Food alarm. Heck most of the time there's NO air and it still alarms No Food!

There are a lot of things that can cause no food alarms, and most of them don't actually involve a lack of formula in the pump. For parents of young children, especially mobile babies & toddlers, the ability to remove all air from the pump bag and have it turned every which way is the most appealing thing about the Infinity pump. That's what sold me on it. However, if you don't get ALL the air out and the bag happens to get turned upside down, even small air bubbles can cause a No Food alarm. If it's just a tiny bubble, I usually just prime it past the sensor and let it go. However, when we were doing jejunal feeds and when Raya's stomach was a lot more sensitive (or when it's a larger bubble), I disconnect the pump tubing from the extension and prime the air out of the tubing so it doesn't end up in her body. Foamy formula can also cause a No Food alarm. And that's pretty much all there is to legit No Food alarms.

Phantom No Food alarms can be caused by several things, with one of those being dirt or cracks in the clear plastic inside the pump cover.
If you're getting a lot of No Food alarms for no reason, clean the sensor with a wet Q-tip. Don't rub it with anything harsh (like a washcloth) that could potentially scratch the plastic over the sensor because that will make the problem worse. You can clean the pump by running it under water as well. (make sure it's not on when you do it...) The manufacturer says it's okay to use a mild soapy water solution and a "nonabrasive sponge or soft cloth" to wipe any gunk off. We've had to do this several times in the recent past thanks to the pump bags spontaneously breaking and bathing the entire pump, inside and out, in formula. Which brings me to the next point: it may also be necessary to clean the part of the tubing that goes in front of the sensor:
Another very frustrating cause of No Food alarms is switching from formula to Pedialyte or water and using the same bag. For whatever reason, when a bag has been used for formula and then is used for clear liquid, the pump has trouble "seeing" the liquid. This problem can be avoided by adding just enough formula to the Pedialyte to make it cloudy. Some pumps are more sensitive than others and have difficulty even running Pedialyte out of a fresh bag. Adding food coloring to clear liquids can help prevent phantom No Food alarms. If all else fails, there's one other thing that can be done to prevent a No Food alarm, but it comes with a very strong caution.
I would not do this until I had first tried a new pump bag, tried food coloring, and added formula to make the clear liquid cloudy. If none of those things stop the phantom No Food alarm, you can use a marker to color in the hard plastic that goes over the No Food sensor in the pump. The risk here is that the pump WILL NOT be able to read a legitimate No Food situation, so if the pump bag has air in it and runs out of liquid, it WILL pump air into the person. That can be painful and dangerous, so if, as a last resort, you do ever have to do this, be sure to remove all the air from the bag and use a dose setting, not the INF setting on the pump.

Ultimately, for any of these 3 alarms, if none of the things you do make the alarm stop going off, get out a new pump bag. If you have the same problem with multiple bags from the same lot number, try using a bag from a different batch. Sometimes the batch has a problem (sorry, Moog, but it's true) and the only way to stop having the same problem over and over is to use bags from a different batch. If that doesn't help, there might be something wrong with the pump & it might need to be exchanged with your home health company. No matter how badly you'd like to throw it at the wall, that doesn't usually fix pump alarms.

I'm sure I've left things out but I'll probably add to this later when I read back through it. Hopefully someone will find it helpful!
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