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Monday, August 26, 2013

Just don't judge people, okay?

I think it's safe to say that (at least for right now) we are officially entering the potty training stage. It's not because I think it's time or that it's a good idea, but a certain little strong-willed redhead has decided that she wants to wear big girl panties whenever we're at home. For the most part, she's done well this past week. She loves wearing her new unders and feels like a big kid. I'm excited for her and excited to see her working on something that I have not been too sure about her being able to do yet.

Ever since Raya hit about 2 1/2 (aka the magical age by which you should have your child potty trained according to the general public), I have had a hard time with the fact that I knew potty training was not going to happen for a while. It wasn't really something I discussed with people for several reasons. I felt a little self conscious about it and didn't think most people would understand the reasons we weren't doing it. It was frustrating for me to know that it didn't matter how much I may have wanted her to potty train, it just was not going to happen for a while and still won't happen 100% for a while to come.

One of the biggest reasons I didn't talk much about potty training & why we weren't doing it (and then subsequently did start talking about it) was because of the judgment I have felt over it. Most of it has come from well-meaning people close to us, who I'm sure have had good reasons for their feelings. (and that doesn't include "well MY kids were all potty trained at the age of 2) Then there are the strangers who happen upon us in public restrooms while I'm changing a rather large and well-spoken toddler's diaper and get knocked over by the strange funk of Neocate poop, or the medical paraprofessionals who have asked questions about potty training and made it clear what they thought of the matter without needing to put it in words. People judge. That's just human nature. Whoever it is and whatever the reasons, judging people is not fair.

Ideally, I would have loved to have Raya out of diapers within a "normal" time frame. Who wants to be changing a kid's diaper when they're old enough to tell you that you missed a spot. Of course I would have also loved for her to have been able to eat like a "normal" kid from the beginning and skip this whole feeding tube business, but that didn't happen and neither has the potty training yet. For her, potty training is not that simple. Without getting graphic, we'll just say that a liquid diet makes for liquid stool and leave it at that. When you factor in using the feeding pump to get 100% of the recommended daily amount of calories and fluids in, with a large portion of that being after she's gone to sleep at night, and then add on top of that the fact that many of her food allergies involve diarrhea as a reaction (delayed reaction that lasts a few days...), what you get is not very conducive to potty training. She's still not always aware of when she needs to go or when she has already gone either. Not only that, but this is a child who decided at the age of 2 months that eating hurt and she was not going to do it anymore, and did not start eating again until she was good and ready and it was her own idea. That has been her life's motto. Forcing something on a child who has had the life experiences that she has had does not play out well. Not only that, but why force her when we know it's going to be more difficult for her than it is for most kids, and why force her when all it's going to do is create more negative experiences that we would be inflicting on her?

I don't know if I'm explaining this effectively and maybe it really is something that can only be understood by people who have been through similar circumstances, but here's my point in sharing this example. Just don't judge people. No matter how qualified you think you are to pass judgment on someone else, just don't. You are certainly entitled to your opinions, but keep them to yourself unless that person asks you to share. It goes for any aspect of parenting. We all make parenting decisions and we all face the consequences of those decisions, whether positive or negative. (of course it goes without saying that some situations do warrant butting in, like anything where the child's safety or life is in jeopardy) Just because you did something a certain way and it worked for you, that does not make it right for everybody else in the world and it doesn't make someone else less of a mother if they don't do it the way you did it. When it comes to things like potty training, pacifiers, taking bottles to bed, co-sleeping, breastfeeding, formula feeding, tube feeding, being careful about exposure to allergens, or anything of the sort, just let the parent be the parent. If you're a friend or family member, be supportive, not judgmental. If you don't understand why they're doing something a certain way, ask with the attitude of wanting to understand their viewpoint. If you can't do that, then just don't say anything at all. This special needs parenting stuff is hard enough without added pressure & judgment from other people.


Tuesday, August 20, 2013

We were having such a good day...

Raya had a pretty dang awesome day today. She wanted food for breakfast so I decided to let her have eggs. She ate one whole egg, which is about 100 calories, which is FABULOUS. The best part was that she was really happy about eating breakfast, which gives me hope that someday I'll be able to get her to eat a decent amount of food before school.

She's been clearing her throat a lot, which is probably a combo of having a teensy bit of a runny nose left over from last week's preschool-acquired virus and reflux. She played happily most of the morning while I got some things done and then it was time to plug her in. (that's what she calls it when we connect her to the pump for formula) She had come in a few minutes earlier and said that her stomach hurt and asked for Tums, so she ate a hot pink Tums, which I forgot about until I started draining her stomach to see what was left of the eggs. I realize the picture I'm about to post is totally disgusting but imagine my shock when I draw back on the syringe expecting to get yellow egg goo and what comes out is hot pink.

Once we got the pump going, she decided that she wanted to put panties on. She had found a pair of training pants in her drawer last night and wore them around for a while last night, but I had no idea where they were. I asked her if she wanted to go to the store and buy some new panties and of course she was thrilled with that idea. :) We loaded up the two Tubie Friends that needed to be mailed and dropped them off at the post office on our way to the store.

Raya was cracking me up when we were looking at the underwear. For some reason, she kept talking about buying socks. I kept correcting her and saying we were there to pick out panties, but she was eye level with a bunch of socks and that's where her little mind stayed. We got some of the thick training pants and I let her pick out some pretty ones too. She picked ponies, which was not surprising at all, and was SO happy!
Someday she'll probably be mad at me for putting that picture on here but at least I have the restraint to not put a picture of her wearing all 6 pairs of underwear at the same time after we got home.

She actually did pretty darn good today too. She sat on the potty at least a dozen times and had one good...void. She could not WAIT for the big kids to get home from school so they could see her pretty new panties! After they got home, she went potty in the toilet and got to have Smarties. That wasn't enough for her though, she wanted to give all the other kids Smarties too so they could all celebrate together. :) She ran from room to room to give everybody a package of Smarties and tell them (very loudly) that everybody got to have Smarties because she peed in the potty! She also saved a package to give to Daddy when he got home from work. I ♥ her! She wore her panties from about 2:00 until just after 7:00 and only peed her pants once, right at 7:00. When I was changing her clothes, she said that the skin on her legs hurt. Some darling children who will remain unnamed gave her fries yesterday morning that had a seasoned coating on them with rice flour in it, so she's started to break out in a little rash on her back right where the diaper touches. (sounds odd but that's her typical reaction to eating rice, along with diarrhea & burned-looking skin...) Right then, I noticed that her eyes looked kind of watery and funny so I felt her head, and she most definitely had a fever. I don't know if it's another preschool virus or something else but SHEESH, she was having such a great day! My new goal for the school year is to make it for one whole week without the school nurse needing to call me and without Raya getting sick. (I wonder if we can put that goal in her IEP...) I took her temperature and it was 102.8. Of course her pump had JUST finished feeding her 250ml of formula with Duocal in it so now I'm crossing my fingers that she doesn't puke that up, but I don't want to drain it all out because that's lost fluid & calories. We'll be running Pedialyte tonight and having a slumber party in the living room.

A med port to be excited about!

Anyone who has ever cared for a child with a feeding tube (especially a busy, mobile baby or toddler) has undoubtedly experienced at least ONE accidental feed-the-bed incident. (or the floor, or the carseat, or the park swing, or the floor in the grocery store, etc.) These incidents almost always involve the loved but also hated medicine port. In 3+ years of tube feeding, we've tried 4 different kinds of extension tubes with med ports, and I have ended up hating all of them. The port stays closed for the first day, but after a few doses of medicine are administered through it, it starts to stretch. Once it starts to stretch, the cap doesn't fit quite as tightly as it did originally. Moisture makes it slippery. Kids are squirmy and they roll around. Stretched out med port + slippery med port + squirmy, rolling kid = MESS! Beyond just the mess (which smells terrible, stains things, and pretty much ruins your night/day) an open med port means lost calories, lost hydration, lost medications, lost digestive enzymes, and for kids who struggle to gain weight and stay healthy, that is bad news. We got to the point where we wouldn't use a Y port extension tube without taping the med port shut. Since the med port was taped shut, we used an adapter to give meds. Eventually we got sick of that whole routine and stopped ordering or using Y port extensions altogether.
 
Earlier this summer, I was privileged to attend the Oley Conference in Hyannis, Massachusetts. While there, I met some of the lovely reps from AMT. They had a couple of new products on their display table, and I was ridiculously excited about seeing new things. (Sometimes I'm amused by the things I get the most excited about these days.) The one that made me really want to jump for joy (and I would have if I hadn't been in a public place) was their Y port extension with the new and improved med port. I wanted to put it in my pocket and bring it home. I didn't though. :) A couple weeks ago, one of the reps that I had chatted with asked if I would like to try the new extension set and I happily agreed. I was slightly giddy when this beautiful little thing showed up on my front porch.
 

Here are the old and new versions together:

They don't look too different at first glance but there are 2 very cool features about this new and improved extension tube. First, the med port is MUCH more secure and very unlikely to pop open by accident. Second, parts of it glow in the dark. For real. Coolest medical device ever. (It's compatible with MIC-KEY buttons too!)
The glow-in-the-dark feature was what got the kids excited. For the whole first day we were using it, they kept trying to get Raya to go into the laundry room so they could shut the door and see her stomach glow in the dark. When I first caught wind of this feature possibly happening, I thought it sounded neat but wasn't really going to help me much because we don't do any connections in the dark. We are the naughty ones that leave the extension tube connected all the time so that we don't have to try and roll her over when she's asleep to connect it in the dark. That being said, anyone who has the new AMT G-Jet with glow-in-the-dark jejunal port will LOOOOOOVE this feature because it will be POSSIBLE to connect in the dark without having to fumble around or use a flashlight. However, like I mentioned, I didn't think it was going to help us much but that's because I didn't realize that the med port was also going to glow in the dark. That has proven to be VERY helpful since we do give doses of meds in the dark. Since we do leave the extension connected to her button most of the time, the glow-in-the-dark med port makes it much easier to find the end of the extension without touching her, and then give meds a little easier. (we would LOVE to see AMT come out with a Mini One that glows in the dark too!)

The first time we took the extension out of the package and took it in the laundry room to see it glow, I was amazed by how bright it was. The down side to leaving it connected to her all the time is that the connector that plugs into her button loses its charge and since it's under her shirt all the time, it doesn't recharge unless we take it off. The med port did still recharge and glow though, and that was more important to us anyway. Admittedly, I thought the glowing was a little bit gimmicky when I first heard about it but it is actually a very functional feature and I love it and the kids do too! I may or may not have overheard a certain little 3 year old making up a song about her belly glowing...


On that note, it might seem trivial but maybe for some kids who struggle with the fact that they have a feeding tube, having it glow in the dark might make it a little more appealing to them. :)




As fun as the glowing is, the feature that I got really excited about was the new med port. I think sturdy is a good word for it. The old one doesn't look too bad until you compare it with the new one. Side by side, you can clearly see why the new one is such a drastic improvement. It will not open without being pulled open on purpose.
The first time I opened the med port, it was hard to open. That made me happy. It NEEDS to be hard to open so that it will stay closed until you want it to be open! We used this extension tube for about 9 1/2 days, during which time we plugged slip tip, oral tip, and luer slip syringes into the med port approximately 80 times. After all of that, it was still holding as tightly as ever. It did loosen very slightly after the first couple of uses, but it still took 2 hands to open it. BEST. MED PORT. EVER!!!!


I wish that I could say it was 100% peaches & cream, but we did run into one little snag. After about 5 days, we noticed that the pump seemed to be alarming "NO FLOW OUT" more often than usual. We chalked it up to Raya being at school and thought maybe it had something to do with whatever activities she was doing. We then noticed one night that even though I knew exactly how much formula I had put into the pump, the pump said it had fed about 300ml more than what I had actually given her. (no air was fed into her stomach because there was none in the bag) The next day, the pump alarmed several times at school and several times at home, and the volume that the pump said it had fed her was even farther off than the day before. We switched back to a right angle single port extension like we normally use the next day (also AMT) and everything has been running just fine ever since. The only theory I can come up with is that the extension tube was somehow constricting the flow of formula just enough to throw off the accuracy of the volume reading but not enough to cause alarms (aside from the many, many alarms that did go off). The plastic did start to get a little bit stiff the last couple of days just like every single extension tube we've ever used, so that may have played a part in it too. In fairness to AMT, the pump is likely a factor here as well.

If I could change one thing about this extension, I would make the diameter larger so that the tubing would be the same diameter as the AMT right angle single/straight port extensions. (it is the same diameter as the tubing on the current purple Y port extensions & the MIC-KEY Y port extensions) I can't help but wonder if somehow the diameter of the tubing was part of the issue we had with pump accuracy. Aside from that, I am absolutely and completely in love with this extension tube. It may even convince me to change back to using Y port extensions all the time. :)

On behalf of "tubie mommas" everywhere, a huge thank you to AMT for taking an interest in the needs and opinions of the end users of your products and then making changes accordingly!!

*As a side note, if you or your child has a GJ tube, you MUST check out the improvements AMT has made to the G-Jet. If this had been available when Raya had her GJ, I would have done whatever I had to in order to at least try it. The MIC-KEY GJ served us well, but there are features that I would have loved on AMT's G-Jet. They have developed a new anti-kink feature, which I got to see in person, and if I couldn't kink it with my fingers, then I just can't fathom anyone's intestines being able to kink it either. The G and J ports do not take the same extensions, which prevents misconnects. Additionally, the J port on the new version has the glow feature to go along with the new glow extension. It is definitely worth looking into! It's currently available in 14fr and 16fr. See www.amtinnovation.com for more information. You can find AMT on facebook as well.

Wednesday, August 14, 2013

My funny girl

Oh, this girl makes me laugh. I am really really loving that she only has school on Monday, Wednesday, and Friday. Initially I was disappointed when I heard they were changing the preschool program and making it 3 days a week instead of 4, but I think I'm really going to like it how it is now, and I think Tuesdays and Thursdays are going to be my favorite days of the week. Those are the days when we don't have anywhere to go unless we want to, and we're home alone together all day long. I was a little nervous about that idea at first because she has always had at least one of the other kids here to entertain her, but she's been doing great so far. She's realizing that when they're not here, she can play with whatever she wants to, sing as loud as she wants without anybody telling her to be quiet, and (when I let her) watch whatever she wants to. Or eat tortilla chips for breakfast in a t-shirt and diaper on the floor by the front door.

This afternoon Raya walked up to me saying something about a project she was doing. When I looked down, she was holding up an extension tube that looked like it had formula in it. It took me a second to figure out what she had done, but she had connected one extension tube to the med port of the one that was connected to her button, and then she had unclamped both of them. And she was so proud of herself too! :)


At that point, she had clamped the second extension tube. She said, "Mommy, should I unclamp it?" Noooooo!! Please don't! :)

Oh, so it turns out I was not off base when I blamed preschool for Raya getting sick. To recap, she woke up with a slightly runny nose on Monday and has been acting kind of off for a few days. She spent most of the afternoon yesterday like this:

Yesterday, she also had a little of this going on:

I thought that maybe she was reacting to either egg or coconut, and that she had caught a cold or was having allergies or something. This morning when I dropped her off at school, I noticed that it looked like she had a little bit of a rash on the back of her neck. She always kind of has some little scratches there because she scratches at the tags on her shirts, so I thought maybe it was just that. Then I got a phone call from the school nurse saying that there was an outbreak of fifths disease in the class she was in all week last week. As soon as she said it everything made sense and I told her that explained a lot. She apologized and I told her not to feel bad because it's not like anybody could have done anything about it. With fifths disease, by the time the rash shows up they're not contagious anymore.

Oddly, I was relieved to find out that it was definitely a virus she picked up at school because that means it probably wasn't a reaction to the food. I started her on medicine for the gastric pain & bleeding and she seems to be feeling better. She's been running around and doing a lot of very loud singing & talking all day today and she ate about a cup of applesauce this afternoon (which will probably come back to haunt us tomorrow), so her appetite seems to be back. I'm sure this is just the first of many preschool germs she'll be picking up this year.



Monday, August 12, 2013

Exciting and not exciting

Some exciting things happened this weekend and some not-so-exciting things happened, so we'll start with the exciting. Then I'll move on to the not-so-exciting, but not wanting to leave the post on a sour note, I will put a positive spin on it and try to find the silver lining because that's what I do to keep myself from getting angry over things I can't really do anything about. Moving on...

Exciting. I was trying to remember how long it has been since Raya ate anything that even vaguely resembled bread. Her wheat allergy was diagnosed at the end of September last year, so she definitely hasn't had any bread since then. The closest thing was probably the one package of gluten-free crackers I found at Sprouts in December or January shortly before we had to stop letting her have food completely. So yeah, almost a year without bread is a long time. I was honestly starting to wonder how in the world I would be able to find enough ingredients that could be blended together and baked and come out resembling bread since she's allergic to ingredients in every loaf of gluten-free bread I've ever seen. I decided last week that it was time to try adding coconut to her diet, and coconut may just be the golden ticket.

I found a recipe (click here to see it) for a grain-free flat bread that didn't have anything in it that she's allergic to. The only questionable ingredient for her right now is egg since she hasn't had egg added back into her diet yet. We did coconut for a few days and then I threw together these little "coconut buns" for her this weekend. The recipe makes 2 of them, which is perfect when she's the only one eating them and she can't eat more than half of one at a time. Here's how they baked up:

I know it seems really silly, but I was absolutely giddy when these came out of the oven. It's hard to describe what it feels like to have to take ALLLLLL food and liquid except water and 2 kinds of candy away from your 3 year old and then be able to actually give some of it back. One of these days, I will have to video the reaction she always gives me when I tell her she gets to eat something new or that some other exciting thing is happening. She puts her fists up on her cheeks right by her mouth and squeals while she dances around. It's very cute. :)

Anyway, the coconut buns turned out pretty darn good. (PS cooking with coconut flour is WEIRD and nothing at all like using wheat flour) The only complaint I have about them is that they seem really salty, which is strange considering that there is only 1/4 tsp of salt in the recipe. The second time I made them, I cut that amount in half and they still tasted really salty, so I think they need a little bit of sweetener to balance out what must be a naturally salty taste from the coconut flour. They taste good. They're kind of like a subtle and salty macaroon with a bread-like texture. The best part is that they passed the Raya test:

BUT. We're still waiting to see if her little body can handle them. She's been a little off all weekend but it's hard to tell if it's from the new food or not.

She also got to have her very first EVER taste of apple juice this weekend. She has been eating applesauce for a while now without trouble so apple juice is okay too. I gave her a watered-down glass of it and then had fun watching the faces she made while she drank it. It must be very strange to drink something with flavor after having pretty much nothing to drink but water for your whole life.

Despite the concerned look on her face, she did like it. It helped wash down the coconut bun, which is a bit on the dry side. She's had it a couple times since then and still seems to like it but she prefers water and crushed ice. I'm okay with that. :)


And that brings us to the not-so-exciting. There are 2. First, she made it through exactly 1 week of school before waking up with a runny nose. Fabulous. Can't wait to see what she comes home with during the actual cold & flu season. There's a possibility that the runny nose is somehow related to the increased reflux symptoms she had last night, or to eating a new food, but I don't think that's what it is. It wasn't even a bad runny nose, just a little tiny bit. Her eyes look a little funny today too. I gave her allergy medicine this morning in case it was allergies. She willingly took Maalox before school this morning too, which is always a sign that she doesn't feel great. She has eaten pretty much NOTHING today as a result. She had about 2 bites of the half of a coconut bun that I put in her adorable miniature Hello Kitty lunchbox for school and didn't want anything the rest of the day. Whatever it is, I hope it goes away fast.

The other not-so-exciting thing is something that I'm still trying to get 100% on board with. When I picked Raya up from school on Friday, the director of the early learning center was waiting for me so that she could let me know that they had decided to move Raya into a different class. The reason for the move is that she was the only one in her class that wasn't doing full day preschool, so they wanted to put her in a class with other kids that were doing half day. Why nobody noticed that before school started and switched her to the half day class next door BEFORE school started is beyond me, and although I was not at all surprised by the news, it did not make me happy to hear it. In general, I consider myself a pretty adaptable person. With situations that involve Raya, it's much harder to be that way. I know their intentions are good and it will be better for her to be in the class with all the other half day kids, but all I could think was, "How and when am I going to tell this teacher everything she needs to know about Raya before Monday?!" If it was any of my other kids that don't come with pages of documentation, medical history, and disclaimers attached, it would have been no big deal, but Raya is not a kid that we can just hand off to somebody and say, "Here you go!"

I did not get angry and really didn't say much at all because I wasn't even sure what to say. I had no choice in the matter and the change needed to be made, whether I was pleased with the timing of it or not. The director could tell that I wasn't too happy, and what followed became downright comical. She offered to introduce me to the new teacher, and the school nurse happened to be standing right there so she came too. While we waited for the new teacher's class to be released, Raya's class left their classroom to go to the lunchroom. The teacher came out with the clipboard so I could sign Raya out, and the speech therapist that had been working with kids in Raya's class today came out of the room too. Both of them joined the entourage and we all waited for the other class to come out. While we waited, they all gushed about how great Raya is and of course she ate up all the attention and performed to her little heart's content. They were all very sweet and were trying their best to say whatever they could to make me feel better about Raya switching classes and reassure me that everything would be fine. Finally, the other class came out and when they were all gone, the four ladies that were escorting me introduced me to the new teacher. She was very sweet and said that she had seen Raya playing on the playground and thought that she would fit in perfectly in her class. We talked for a minute, I got her email address, and then we left because I was starting to feel a little smothered & we had to go to feeding therapy.

I put off emailing her until yesterday, mostly because I didn't even know where to start. There was a REASON we made it a point to meet with her teacher privately (as opposed to during the come & go meet-the-teacher event) and to meet with the school nurse & district health rep. You can't condense 3 years and 9 months of fairly complicated medical history, instructions for keeping Raya safe from food allergies, and how to handle the feeding pump & G tube stuff into a quick email and expect the other person to really understand it all. Some things just need to be discussed in person with enough time to actually discuss! Then of course when I sat down to try and email her yesterday, my computer wasn't cooperating and I couldn't get it to work, so it was about 11:45 last night before the email finally got sent. I kept it as short as I could (and attached the medical history summary that I wrote up for the district) but it was still long. I tried to keep it to just the most important things, but there are about 4 or 5 most important things.

This morning, I got everybody ready for school and sent the big kids off on the bus, and loaded Raya up in the car for her second first day of school.
(see, you can tell she doesn't feel good)

We went a few minutes early so I could at least show the teacher how to make the pump stop beeping long enough to send her to the nurse's office and how to clamp the tube in case the extension ever comes out of the button during a feed. Bless her heart, I thought she was going to pass out when I popped the extension out of the button. True to form, Raya made the moment even more exciting by passing a large "belly burp" through her G tube as soon as the extension was out of it. That was pretty awesome. I showed the teacher how to reconnect the extension, but by the look on her face I could tell that she won't be coming within 10 feet of that G tube unless she abso-friggin-lutely HAS to. She was very sweet and I appreciated her honesty when she told me that even though she's had other students with tubes and has family members who have had tubes at one point or another, feeding tubes freak her out. She said more than once that she's afraid she's going to do something wrong or hurt her somehow. I told her that I was a bit intimidated by the first G tube I ever saw too but to try not to stress about it.

Secretly, I would MUCH rather have Raya with a teacher that is a bit freaked out and intimidated by her medical conditions than with one who is too laidback about all of it. I feel bad that Raya was just dropped on this teacher without a chance to really talk to me about her issues and ask questions because I would be intimidated too if I was a preschool teacher. The class is really big. Bigger than I think it should be, actually. I hope that the pump behaves itself perfectly and that nothing else ever goes wrong because there will already be a lot going on in that classroom. At this point, I think the school nurse will be our biggest ally (us AND the teacher) and thankfully, Raya is in a very good place emotionally and behaviorally (knock on wood) right now so I think everything will be fine.

Friday, August 9, 2013

Tubies in School Series: Back-to-school Prep & Emergency Kits


I think I've mentioned recently the stress of preparing to send a child with medical issues to school. Last fall when Raya first started preschool, I thought my head was going to explode. I did the best I could to prepare for her first IEP meeting and explained as thoroughly as I possibly could to her teacher & the school health aide what Raya's main medical concerns were, how to operate the feeding pump, and what to do in case of a G tube-related emergency. I prepared the very best I could, and overall things went pretty well but there were still some frustrating moments throughout the year.

This year, the preschool program has moved to a brand new (and HUGE) facility inside the new middle school (which sounded completely unappealing to me but turned out okay) and we have a new teacher and a new health aide. I really wanted to get off on the right foot this year, so I prepared a little differently and probably even a little better than I did last year. Perhaps enough to make all the school employees think I'm an obsessive helicopter parent, but I'm at a point in my life where I'm totally okay with that as long as it keeps anybody from screwing anything up while she's not on my watch.

I thought I would share how we are handling things this year, and maybe it will give someone else ideas to adapt for their own situation. Here are some things we have done or will be doing:

Meet with the teacher ahead of time
This year, we met with Raya's teacher the Wednesday before school started. That was the official meet-the-teacher day, but I emailed her ahead of time and requested a private meeting earlier in the day so that we would have more time to go over everything. It went really well. We talked about the main items on our list of concerns, which are food allergies, food cross-contamination, her sometimes disruptive & unruly feeding pump, G tube emergencies, keeping her hydrated, and doing the best we can to keep her healthy. We gave her a copy of the medical history I typed up to provide to the district and a copy of the Infinity pump troubleshooting guide I made (that I now realize needs to be re-done for school nurse/respite provider purposes). (more about those things later...)

Meet with the school nurse ahead of time
Equally as important as meeting with the teacher! The school nurse (or health aide, since some aren't nurses) needs to be familiar enough with the child's needs that he or she can handle whatever comes up. That includes feeding pump alarms. One of my Feeding Tube Awareness colleagues is working on a very simplified basic pump operation guide that will be PERFECT for school nurses, but until then, all I had to give them was the abbreviated, snark-free version of my Moog Infinity troubleshooting blog post. I'll add the other document as soon as it's available.


Ask the teacher questions
The first time around is always a learning experience for me, no matter how much I try to prepare myself. Last year when I met with the teacher & health aide before Raya started school, I went into it feeling like I was the one that needed to do all the explaining and then answer their questions. That is definitely an important part of the process, but one thing that I did this time that I didn't do last year was ask the teacher how familiar she was with G tubes. I don't know why it didn't occur to me to do that last year. Maybe because we knew there was a little friend of ours in the class that used to have a tube so we knew the teacher had at least some exposure. This teacher said that she really wasn't familiar with them at all, and that gave me a better idea of how much information I needed to give her. I was actually a little bit relieved that she is not familiar with G tubes because that meant that she had no assumptions about caring for Raya based on experiences with previous students with tubes. Other questions that we asked were things like whether or not the kids use soap & water to wash hands before and after snacks, and emphasized that hand sanitizer will not protect a child with food allergies from cross contamination. Asking questions is something that I'm not very good at but made a real effort to come up with questions this time. The result was a very informative discussion on both sides of the table and we felt good when we left.

Update medical information already on file
If your child is returning to school and already has health information on file with the school, now is a great time to provide an updated version to the school. I had typed a medical history summary last year to give to the teacher and the health aide, as well as the district so it could be filed with her IEP. That made it pretty easy for me to update. All I had to do was open the document, go over everything from last year, and update whatever has changed since then. It was also nice to read through it and see the areas that Raya has made progress in since November. I typed the list in a similar format to this blog post, and put the different topics in order of medical priority, with the food allergy stuff on top.

Know & agree upon G tube emergency procedures
 Our school district has a "no replacement" policy for all feeding tubes, meaning that if it comes out at school, no district employee is allowed to even attempt to put it back in, nor can they put anything else (like a Foley catheter) in its place to keep the stoma open. Admittedly, I was angry, frustrated, scared, and really annoyed when I found out about it. It was the one thing in the IEP meeting that almost filled my eyes with tears, probably because her tube had gotten pulled out no less than 3 times that week.  The district's health supervisor was on speaker phone because she had not come to the meeting like I had requested, and her answer to my question of how an accidental pull-out is handled was, "Well, typically we'd call the parent first and if the parent can't come or we can't get a hold of them within 30 minutes, we call 911 and send the child to the hospital in an ambulance. Either that or some parents just have us cover the stoma with gauze and they'll take care of it when the child gets home from school at the end of the day." *pauses to clear throat* Right. I may have actually let out a small laugh because I don't know a single tubie parent that would EVER agree to that, and I know a whole lotta' tubie parents! It became clear right away that trying to fight the policy was futile, but I certainly could not agree to EITHER of their suggested emergency procedures, so we came up with a compromise at my request. Here is our emergency procedure:

In case of accidental G tube dislodgement:
1. Call mom immediately and cover stoma
2. Bring Raya to health office to wait for help (turn off the feeding pump if it's running)
3. If unable to reach mom within 10 minutes, the following individuals are authorized to place the G tube or a Foley catheter:
(list of 4 local friends)

It doesn't sound like much when it's written that way but it's something I'm comfortable with as opposed to what the district suggested. We are very, very blessed to have friends close by who are parents of kiddos with feeding tubes, and are willing to at least try to get Raya's tube back in if I can't get there in time. If any of our family members were close enough, or even friends with no tube experience that would be willing to learn and at least try, that would be better than having everybody's hands tied until I could get there. (The reason Donny isn't mentioned in the emergency plan is that he works 45 minutes away, so that is really not a viable option.)

In addition to our emergency plan, I also specifically noted that Raya is not to be sent to the hospital in an ambulance because of a G tube pull-out. Ever. As I explained to the two people I met with from the district (and to a group of wide-eyed people at the IEP meeting last fall), if the tube comes out and is out long enough for the stoma to start to close, it will require a painful and traumatic dilation in the ER (or preferably OR under sedation, but that's pretty unlikely). If Raya ever gets to the point of needing a dilation, the worst possible thing they could do would be to send her to the hospital with whatever school employee would end up escorting her and have the procedure done without either of her parents there. And that's only IF the ER staff knew what to do and COULD do it without one of us there. It really would be an unnecessary expense to send her by ambulance.

Another thing that is in the district's policy is that no school employees are allowed to forcibly flush a tube, which includes attempting to unclog a clogged tube. As of yet, the only clogged tube we have ever had was the NG that I put Prevacid solutabs in without thinking it through first. I'm not terribly concerned about running into problems with a clogged tube but if it was something that we had recurring problems with or if Raya was on continuous feeds, that would be something we would address in the emergency plan as well. As it stands, all they would do is call me to let me know that the tube was clogged and I would either come and fix it or have them turn off the pump and deal with it when she gets home.

Prepare emergency kit & extra supplies
Over the weekend before school started, I had massive amounts of paperwork to fill out and emergency/supply kits to prepare. I wanted to make sure that the school has everything that they might possibly need in the cabinet in the nurse's office. Here's what I provided:
Emergency G tube kit:
Even though the district has a no replacement policy for G tubes, part of our agreement (and part of her GI doctor's orders) are that they are required to keep an emergency G tube kit in the nurse's office. That way, if I get "the call" while I'm out of the house & don't have supplies with me or if one of our wonderful volunteers needs to come to the school, everything they need will be there. In this kit, we have a supply list & instruction card, a gently used MicKey button (in case her AMT Mini One breaks or won't go in), empty 6ml luer slip syringe (to remove water from balloon if it's still inflated), 10ml syringe of KY Jelly, 10ml luer slip syringe with 5ml of water in it for the balloon, gauze to put around the tube after it's in, a Q tip with the cotton pulled off one end (to use as a stiffener for the AMT Mini One since it's harder to get in), a roll of paper tape, and some gauze pads (without holes in the middle) that the school put in the kit last year to cover the stoma with while they wait for someone to come. The only thing I didn't include in the picture is the pair of nitrile gloves (because who wants to touch another person's kid's stomach goo). I also meant to put in a Foley catheter and will probably go back to the nurse's office sometime soon and add that. I put all of it in a plastic pencil box and it's kept on a shelf in the nurse's office.

One thing that I included was an instruction card, just because sometimes people need something to look at in a stressful situation to make sure they're not missing any steps.

Spare Parts Kit:
Accidents happen, things break or get peeled off, and kids get dehydrated & need water boluses, so that's what the spare parts kit is for. The extension set is a spare just in case the one she's being fed with at school breaks or is somehow rendered useless. It could also be used for meds if the one that I have in the medicine kit breaks or is somehow rendered useless. :) The syringes can be used to flush her tube or give her a water bolus, and the Hypafix is the only kind of tape we've found that holds well enough to keep her extension taped to her belly. Everything else falls off too easily or irritates her skin. Not having it taped is kind of asking for the tube to get pulled out, so I figured they might as well have a roll of Hypafix in the cabinet too. All of these things are in a plastic baggie with her name on it.

Medicine Kit:
In this baggie, we have a bottle of Benadryl because of her multiple food allergies, a 10ml syringe to administer the Benadryl (or Tylenol) with, a 35ml cath tip syringe to flush the medicine through with, and an extension tube with a med port to give meds with since we rarely ever feed with a Y port extension tube anymore. (The school already has liquid Tylenol in the nurse's office so I didn't supply any. With her only being there for 3 hours at a time, if she ever needs Tylenol I will just give it to her before school.) I also included a card with detailed instructions for how to give Raya Benadryl or Tylenol. It's something that I take for granted as second nature, but I realized that someone who is unfamiliar with giving meds through a G tube might not remember to pause the feed, know how to disconnect the straight port extension and connect the Y port extension, unclamp the extension before pushing the medicine, or might not know they need to prime the extension with water before connecting it & giving meds or know how much water to flush with afterward. This way, there is very little room for error. Even if the regular school nurse knows how to do it all, there's always a chance that she could be gone on a day that Raya ends up needing something, so the instruction card is a very good idea and needs to be specific to each individual child.

The other thing that is not pictured here is the 2 pack of EpiPens. Raya is allergic to peanuts and all tree nuts, so it is an absolute must that she has them at school. If you have seen the news recently, you have probably heard about the young teenage girl who died of anaphylactic shock after biting into something that had peanut butter in it even after her father (a doctor) injected her with 3 EpiPens. Severe food allergies are SCARY and should be respected, and anyone caring for a person with food allergies should make the effort to learn about and understand that person's allergies and be prepared for an emergency. *steps off soapbox* So we have the Benadryl as a first line of defense and the EpiPens as the next, as well as an anaphylaxis plan signed by the allergist, which brings me to...


Paperwork
Oh, the paperwork. If you have a child with a feeding tube who is old enough to go to school, there are certain things that you need to have on file with the school. There are 3 different documents that can be used to help a child have his or her medical needs met while in school: Individual Health Plan (IHP), a 504 Plan, and an Individualized Education Plan (IEP). The Oley Foundation posted an excellent article that explains all of these things in great detail and how they work to protect the child's health care needs at school. Some kids will only need one or another, and some will need more than one. Rather than try to explain things myself, I will just strongly encourage everyone who has a child with any kind of medical issue that could impact school to read this article on Oley's website by Donna Noble: IHPs, 504 Plans, and IEPs: What’s the Difference? READ IT!! It will answer a lot of questions and help you determine which plan would best serve your child. The Feeding Tube Awareness Foundation also has information on their website about dealing with tube feeding in school, as does Complex Child E-Magazine.

In addition to Raya's IEP that is already on file with the district, we had the Anaphylaxis Emergency Action Plan that had to be filled out and signed by the allergist, a form titled Primary Care Provider Authorization: Gastrostomy Tube Feeding (2 sided), another form titled Physician's Authorization for Medical Procedure at School, the Individualized Care Plan with our emergency protocol for pull-outs, and the emergency contact card that they require all the students in the entire district to fill out that also includes allergy information. All but the Individualized Care Plan and the emergency contact card had to be signed off on by the GI doctor before I could return them to the school.

The G tube feeding form has the information about Raya's pump settings, the type of tube she has, the formula she's on, her feed schedule, and the school's policy on emergencies, including the part where I wrote in that they can't transport her by ambulance for a G tube pull-out without me or Donny there.

The medical procedure authorization form authorizes the GI office and the school to exchange pertinent information about Raya. It also includes things like the diagnosis that necessitates medical procedures being done at school, the procedure & equipment needed, the time schedule, emergency procedures, concerns about transporting her on the bus, physical activity restrictions, length of day she can tolerate, risk factors for Raya coming to school, and any changes in condition that are anticipated during the year.

Some of the information on these forms seems a little redundant and there's a part of me that feels like the information is going to get put in a filing cabinet somewhere and never be seen again. I have to say though that meeting with the school nurse & the other guy from the district last week made me feel like we were putting a face with the paperwork for them. Even before school started this year, I felt like there was a huge difference in the level of concern for Raya's health & safety and I really don't think we will have the same problems we had last year. There are bound to be snags (like finding out today that they're moving Raya to a new class on Monday with a different teacher who has not been formally briefed on ANY of this stuff yet...) BUT the school nurse has been very involved already this week and has gone out of her way to make me feel like the school cares about Raya's well-being. That means a lot to an obsessive helicopter parent. :) She even called me while I was getting my teeth cleaned today to tell me that the pump kept beeping but she got it figured out & everything was fine. :)

Raya's IEP is supposed to include things like that she is not allowed to have any food that is not provided by her parents, precautions should be taken to keep her from eating other kids' food, the school is to notify us of any ingestion (or suspected ingestion) of anything she's known to be allergic to or that she did not bring from home, and other information about her tube feeds at school. She's not due for an IEP meeting until November, at which point I will be verifying that the health information that I provided to the district has been added to the IEP like it's supposed to be and if it is not, then I will not be leaving the meeting until it is.

So there you have it, that's our back-to-school preparation! I hope it helps someone!

Tuesday, August 6, 2013

And on the second day of school...

The second day of school was just plain lovely. Except for the part where I woke up with the same headache I went to sleep with last night. And the part where a certain boy who has been banned from leaving his room until 6:30am was in my room bugging me about what he should pack in his lunch at 6:20am, at which time i do not have the capacity to care what anyone eats for lunch. It rained for a good part of the day, starting at who knows what hour of the early morning, and it was only about 75 degrees outside when the kiddos got on the bus. They are such Arizona kids. When they looked outside & saw that it was raining, they immediately assumed that it was cold and insisted on wearing jackets. I laughed at them.

Raya doesn't go to school on Tuesday & Thursday so we went over to a friend's house for a little while so I could help her with a little blog project, and then we came home and had lunch. Even by midday, it was still BEAUTIFUL outside so we opened the front door and let some fresh air in through the screen door. It was muggy as heck but it was wonderful. Raya sat by the screen door for a long time playing quietly. Yes, those are dangerous words. I couldn't see what she was doing other than the fact that she was playing with shoes. I figured that was pretty harmless until I saw what she had done to Kaida's tennis shoes.
Such a stinker!! No tennis shoe was left untouched and goodness knows how long it will take me to fix them all. But at least she was happy and that had to have been some good fine motor work, right?

It was lovely having a day with just the two of us. When I thought about it, I realized that pretty much all of the one-on-one time I've ever had with Raya has either been in the evening when she's crabby and using mischief to keep herself from falling asleep, or else it's been at medical appointments. I think it goes without saying that we are due for some quality one-on-one time that doesn't include either of those things. We had a very laid back but good day. I was really tired because I was up late with a yucky headache, so I laid down to rest for a while. She got quiet again and thankfully this time she had just fallen asleep on the floor instead of doing something naughty. I was completely shocked that she was asleep on the floor. She NEVER falls asleep during the day anymore, and on the rare occasion that it happens, it only happens in the car.

There is just something adorable about a little girl sleeping with her backpack on. ♥

Monday, August 5, 2013

First Day of School 2013-2014

Summer break is officially over! All four of the kids started back to school today. They were all just beside themselves with excitement but especially Kaida, who basically had to wait a whole extra year to start kindergarten because of when her birthday falls. We could have started her last year but opted to wait, so she has been chomping at the bit for a loooooong time now!

We did a lot of the preparation on Sunday evening so that we could avoid a hectic morning on Monday, and it definitely paid off. The kids packed their lunches Sunday night and laid out clothes for Monday morning. We had family scripture study (which we don't do often enough) and Donny gave each of the kids a father's blessing, which is a tradition both of us grew up with. Father's blessings are for the purpose of giving each child an individualized blessing with special words of guidance, love, strength, and encouragement as they start a new school year. I always get one too because I need it just as much as they do! I'm so thankful to have Donny and that he is able to use his priesthood to bless our family. Once the blessings were done, we had family prayer and sent the kids off to bed. I'm not sure how much any of them slept that night. You'd have thought it was Christmas Eve. :)

This morning went really well except for the part where the gas light was on in my car and we had to stop to put a couple gallons in so we could make it to both schools without running out. That put us in a little bit of a time crunch but we made it. We dropped Raya off first. I hesitate to say that we dropped her off because this school is like a maximum security preschool. There is no "dropping off". You have to park the car, get out, go through the exterior door, pass by a desk where the secretary buzzes you into the atrium area, THEN you can walk your kid to their classroom and sign them in. It's pretty intense but I suppose that's a good thing. It was overcast this morning and the weather was gorgeous (and that says a lot for Arizona in August). The kids were cracking me up that they couldn't smile for a picture without squinting. You'd have thought it was bright & sunny out. Here's Raya in front of her new HUUUUUGE school:

She was too excited to go play once we got in the classroom and ran off before I could take a picture of her. She was not sad for me to leave her there AT ALL, and I don't mean this to sound coldhearted but neither was I. She LOVES preschool and was really excited, so I was excited for her to go. She could hardly hold still long enough for me to turn on her feeding pump and plug her in. I had to drop off all her medical stuff and then hurry back to the car where Donny & the other kids were waiting so we could get them to school on time.

Well, almost on time. Traffic on the first day of school is ridiculous and we were still waiting at the stop sign when 8:05 came. We finally got into the parking lot and there was nowhere to park, so Donny pulled up to the only curb big enough to pull up next to and the kids and I jumped out. I felt bad that he got stuck being the getaway driver at both schools. :/ We went in the gate by the kindergarten classes so that I could take Kaida into her classroom so I took one last picture of the big kids before they headed over to line up.
Lovely squinty faces. Kaida could hardly contain herself as we walked to her classroom. She has been waiting for this day forever and couldn't believe it was finally here. When we walked in, the classroom was totally packed with parents & kids. The desks were really close together and none of them had chairs at them yet so I found her a chair and managed to get it to her desk without whacking anybody. She gave me a hug, we hung her backpack on her chair, I snapped a couple pictures, and then I left. I think I was the only kindergarten parent that didn't stay until the teacher kicked them out. :) I also didn't shed a tear. Not that I'm not sad that my baby is growing up, but there has never been a little girl so excited to go to school, and I am just plain happy for her. I mean, LOOK at this face:
Pure joy! I'm sure she's probably the oldest one in her class, or at least one of the oldest, and I'm glad. There are kids in her class that won't turn 5 until a couple months after school starts and she'll be 6 at the end of the month, but I'd rather have her be the oldest than the youngest.

After we left, Donny and I went to our favorite little hole-in-the-wall restaurant close by and had some delicious French toast for breakfast ALLLLLL BY OURSELVES. WITH NO CHILDREN. ALONE. It was lovely. :) Three hours goes by fast though and before we knew it, it was time to pick Raya up. This time he got to come in with me. Much to our surprise, it turns out that Raya is the only one in her PRESCHOOL class that is only going for half the day. The rest of her class does full day preschool. I thought that was really strange. I guess if it was a choice between paying for daycare and paying for all day preschool, I would probably pick the preschool option too. After getting a taste of being home alone, the thought of 3 full days a week home alone is lovely. :) Anyway, we went in her classroom to get her and she was really excited and happy. This time I got her to stand somewhat still so I could get a picture.

According to her, she learned about toys on her first day and doesn't know any of her new friends' names except Marco. I think she likes to say Marco because she kept saying it all afternoon. :) We snapped a picture with Daddy when we went outside just to prove he was there. Mommy was not fit to be seen in front of the camera this morning.
They get their squinty eyes from him. He was squinting in our wedding pictures too.

As we were leaving, she was talking about how all the other kids got applesauce for their snack and she wanted applesauce. (she had tortilla chips in her miniature Hello Kitty lunchbox. adorbs.) Since she was in the mood for applesauce, I obliged her when we got home and that's what she had for lunch.
I ♥ her and her little facial expressions! I'll probably jinx it by saying so, but she seems to have developed a liking for applesauce and peaches. So far she's only been eating fresh peaches but the last ones I bought were kind of gross so hopefully I can switch her over to canned. And thankfully her body seems to have adjusted to the applesauce and it doesn't do bad things to her anymore when it...passes through. The first day was iffy but she's doing well with it now. HUGE improvement over a year ago when she refused to eat applesauce because of the texture. She really has made some small but significant progress since last summer with eating.

The afternoon went by pretty quickly and even with her respite provider here, it was MUCH quieter than it's been all summer long since the big kids were gone. When it was time for the bus, we walked down to the bus stop to wait for them. It was still a gorgeous day (for Arizona in August) and was only about 95 degrees and still overcast. Raya met a new friend at the bus stop. She lives right across from us and her big brother is in kindergarten this year. She's the same age as Raya and they were friendly to each other right off the bat. I love how easily little kids befriend each other. They started playing and climbed up on the playground structure. Bless Raya's heart, she's had some funny fears and sensory things going on this week and when she got up on the little bridge part of the playground, she couldn't walk across it without clinging to the railing for dear life. She said she felt like she was falling. There are holes in it and some kids with sensory processing disorder have a really hard time with depth perception on surfaces like that. She was having a hard time climbing around on it like she usually does and mostly just watched the other girl play. When she came over to talk to me for a second, I was really disappointed to see how sweaty she was. The other little girl hadn't broken a sweat even though she'd been there longer and was running around a lot more. Raya's face, chest and arms were bright red & splotchy and her entire hairline was soaked with sweat. (of course you can't tell in the picture)
(this wasn't quite the worst of it but yeah, she sweats a lot)

She didn't even have her backpack on. Her little body just doesn't know how to handle the heat sometimes. It didn't seem to bother her other than her pace was a little slower than normal when she was playing.

After about 15 minutes, the bus finally came. It was Kaida's very first bus ride EVER, so I had to take pictures!
So cute!! I love seeing happy children on the first day of school! :)

We walked home so Raya could cool off and get some water. The big kids were rather adorable walking home together. :)
♥ them!

Saturday, August 3, 2013

Meetings and paperwork

The process of getting ready for school is winding down and Monday will be here before we know it. I've been a little stressed this week over preparing for our meetings with Raya's teacher and with the school nurse & district respiratory therapist (the one that does all the feeding tube training for the school nurses). I wanted to make sure we had everything typed out, written out, printed out, copies made for everybody, etc. so that eeeeeeeeeeverybody is on the same page about everything. We met with Raya's new preschool teacher on Wednesday and were able to explain Raya's main issues that will affect her at school (food allergies and tube feeding at school) and explain what frustrations we had with school last year that we're hoping to avoid this year. The meeting went well and Raya is VERY excited to get to go back to her new classroom on Monday. The school that the preschoolers will be at this year is brand new and still being worked on so hopefully things will be ready to go on Monday.

Thursday we met with the school nurse & respiratory therapist. That meeting also went well. They were very receptive to everything we talked about and were surprised by some of the problems we had last year with allergy precautions not being taken like they should have been. I gave them copies of Raya's medical history that I had typed up and copies of the troubleshooting guide for the Infinity pump since the district only had information about the Joey pump last year. I showed them the emergency G tube kit that will be kept in the health office (even though district employees aren't allowed to replace pulled out G tubes) and went over what other supplies I'll be bringing in for them to keep in the office. I had all the medical forms back from the doctor already so I gave them those, and they'll be sending me one more (hopefully only one more) to have filled out & signed by the doctor. It's pretty crazy the amount of paperwork it takes to get one little girl ready to go to preschool! We're very grateful for the opportunity she has to go though. She has done SO well with preschool so far and it's been really good for her developmentally. (and for my sanity)
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