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**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.**

Tuesday, June 25, 2013

Mommy's on vacation

That's right, Mommy is on vacation. Last week was a hectic and stressful week but we survived it and I managed to finish my anatomy class with a comfortable A. Yay. Once I was done with that, we celebrated Donny's birthday a day or two early because on his actual birthday, he got to take me to the airport at 4:00 in the morning so I could catch my 6:00 flight. Which ended up leaving shortly before 9:00. And that was after I got to experience the TSA's full body scanner for the first time, followed by a pat-down. Not a full pat-down though, only my head. She squeezed my bun and then said I could go. It was a fun thing to do at 4:30 on a Monday morning. Not as fun as sitting at the gate for an hour, boarding the plane, sitting on the plane for another 90 minutes or so, getting back off the plane to try and rebook the connecting flight I was surely going to miss in Chicago because of the mechanical delay, getting back on the plane because there was no other open flight to Chicago, sitting in the plane for another half hour, and then finally taking off. The best thing that came out of that mess was that they gave everyone free DirecTV for the flight to make up for the hassle. By some miracle, the flight from Chicago to Boston ended up being delayed as well so rather than missing my connecting flight by an hour, I actually had to wait in line for half an hour. The gate happened to be right next to a swanky wine bar and a guy was playing a grand piano about 5 feet away from me. Photobucket Pictures, Images and Photos You can't see it in the picture but the guy was playing "Anticipation" on the piano. Great sense of humor playing that song for a gate full of people that have been waiting over an hour for their delayed flight. He followed it with a jazzy rendition of "Leavin on a Jet Plane," which I also found hilarious in spite of the cliche. I felt like we flew forEVER. I had to catch a shuttle bus to Hyannis when I landed in Boston but we ended up landing about half an hour late because we had to make a huge circle to avoid weather so I thought for sure that I'd be stuck in Boston for the night. Someone had mercy on me because the bus was running late too so I made it. Then I felt like I was on the bus forever too because you can't see ANYTHING from the freeways here. It's just a solid wall of trees. Totally not used to that. Two of my wonderful colleagues from Feeding Tube Awareness met me at the bus stop with a cab to go to the hotel. After a very long day of traveling, I finally made it to the hotel just after 9pm eastern time, so it had been about a 15 hour day at that point. I thought for sure I'd sleep until noon today nut I was wide awake at 7, which is 4:00 at home. And why am I in Hyannis, Massachusetts, of all places? I'm here with some of the Feeding Tube Awareness staff to attend the Oley Foundation's annual conference. If you're not familiar with Oley and have a child or family member on tube feeds or TPN or use any of those things yourself, you need to visit their website ( and explore it. They are a wonderful resource, especially for adults with feeding tubes or TPN. We are very excited to be attending the conference and representing FTA and supporting Oley. The conference doesn't start until tomorrow so we had a clear schedule today and 3 of the 4 of us left the kids at home. We got some work done and spent some time lounging in the hot tub (because Arizona has ruined me for swimming in cold pools unless it's above 105 outside). Photobucket Pictures, Images and Photos We also had dinner with a gentleman we met at a conference earlier this year whose late wife was one of the first people on TPN at home and lived an incredibly full life thanks to the TPN. Their story is inspirational and there will be a blog post forthcoming about their book sometime after I get home. Dinner was FABULOUS! Photobucket Pictures, Images and Photos If you've never met the FTA staff before, here we are: Photobucket Pictures, Images and Photos (Clockwise from top left: Laura, Traci, me, and Stephanie. Not pictured and dearly missed: Susan, Hillary, and Kelly) Ha ha. :) Tomorrow maybe we'll be feeling less haggard and get an actual picture of ourselves. I have to give a huge shout out to my super-husband for completely supporting my little vacation/girls' trip by voluntarily taking the week off of work to stay home with the kids. They seem to be having a good time so far and he's kept up with the calendar of events. Don't know what I'd do without him! I miss my little darlings but they're in good hands.

Wednesday, June 19, 2013

Beans and adenoids.

Raya has another new food! She got to try some black beans yesterday. She was very happy once again to eat something we were eating.
She only ate about 7 or 8 beans so it's hard to say whether or not they'll agree with her yet but she likes them. I didn't want to be a negative Nellie so I didn't say anything earlier this week but the night Raya ate the corn spaghetti with ped corn, tortilla chips, and grapes for dinner, she had a yucky night. She woke up in the middle of the night because of belly pain. For about 30-40 minutes, she would sleep for a few minutes and then cry and writhe around on the floor for a few minutes before going back to sleep. She wouldn't answer me when I talked to her and didn't want me near her so there wasn't a whole lot I could do for her. She finally went back to sleep after she...ummm...relieved some pressure. We inadvertently forgot her sleep medicine that night so she only got about 6 hours of sleep that night. She should have been exhausted on Sunday but she was awake alllllll day. She didn't even sleep during the hour long car ride to grandma & grandpa's. Thankfully she slept well that night. She's been doing a lot better with sleeping in her bed.

 Today, I found myself sitting in a doctor's office and Raya was not with me. It was strange. :)

 Her big brother needed to see the ENT. His allergist sent him for an xray last month to see if his adenoids were enlarged because odd the symptoms he still has. I'm no expert, but even I could tell that they were big.

The adenoids are the round ball-ish thing right behind and slightly above his back teeth (facing forward). They're big. A medical assistant from the allergist's office called me back and said the radiologist's report said he had enlarged tonsils and adenoids and needed to see the ENT. I was a little stressed heating about the tonsils because I've heard how miserable tonsillectomies are. Today we picked up the films & report and went to the appointment. I read the radiologist's report and my jaw dropped a little. First, I saw that it said his tonsils were normal so I said ”I told you so” in my had to the MA at the allergist's office. Then I saw that it said ”grade IV adenoidal hypertrophy”. I wanted to know what grade IV meant so I googled it. Turns out it means that his nasal passages are at least 75% occluded. No wonder the boy can't breathe through his nose! I came across this paragraph in my anatomy book while I was studying for my final exam. It pretty much sums things up.
Hmmm...let's see. He snores, breathes through his mouth, wakes up at night to get drinks of water, wakes up really early every morning, gets headaches (which the ENT said can be caused by enlarged adenoids), has some small but lingering speech quirks, and doesn't sleep well.

The doctor said we could try a different steroidal nasal spray and see if that helps but I told him we've been doing that off & on since he was 3 (he's 8 1/2) and I'd rather just take them out than keep using steroids. The doctor did an awesome job explaining things to him and asked if he had any questions. He said, ” When you take out the adenoids, will they be all...bloody?” He's such a boy! The doctor told him they won't be bloody and that they look like walnuts, so now I'll think of adenoids whenever I see walnuts. Awesome. :) I'm not sure if Cole even knows what a walnut looks like. He's allergic to them so he's never had one. :) This will be an adventure but hopefully it won't be bad since he's not getting his tonsils out.

Tuesday, June 18, 2013

Alternative uses for medical supplies: Summer Edition

Summer is in full swing, and with a new season comes new opportunities to find creative ways to use surplus medical supplies. Sunday was Father's Day, so we set out late in the bright, sunny afternoon on the 1 hour drive to Grandma & Grandpa's house to celebrate. We weren't more than 15 minutes down the road when Donny's sunglasses spontaneously combusted on his face. Well, okay, they didn't catch on fire, but they might as well have. They just flat out fell apart. Donny can't function in sunlight without sunglasses on. He has very sensitive eyes. Our wedding pictures are proof of that. The outdoor pictures are a mixture of sunglasses and squinty eyes. He didn't want to wear mine, so I did the only thing I could do: whipped out a roll of medical tape and slapped those puppies back together.
Good as new. Not sure why he refused to wear them outside of the car...
Today was supposed to be pool day with friends from church. We were running a little late because we had to get our workout in first. (Billy Blanks' Tae Bo on YouTube. yeah baby.) After spending half an hour slathering my pasty white children (and self) with sunscreen, we were finally ready to go. We are once again without a car this week so we had to be not lazy and walk. It takes about 10 minutes to get there but it's friggin' hot outside so the only thing that makes it worth walking to the pool is cooling off in the pool before you have to walk home. Much to the dismay of my 4 eager-to-swim kiddos, the pool is closed today for repairs. Apparently the HOA couldn't have planned ahead well enough to do repairs BEFORE it got hot enough to swim. There was much whining and shuffling of feet on the way home, followed by some crying and more whining. Being the frugal person that I am, I didn't want to waste the sunscreen I had spent so much time putting on everyone so I decided to come up with a plan B.
First, we tried making a sprinkler out of a water bottle and 4 inch wide Durapore. It worked beautifully for about 5 seconds before the durapore stopped sticking and it flew apart.
Plan C: Milk jug + Durapore. Also worked beautifully for about 10 seconds before the durapore stopped sticking and it flew apart.
Plan D: Milk jug + latex strap from Bard catheter bag. (see, I knew I kept those straps for a reason...)
And that's how Mommy saved the day, with a little help from some medical tape, a milk jug with dozens of holes stabbed into it, and a latex strap from a catheter bag.

Saturday, June 15, 2013

Hooray for corn!

Dinnertime tonight was awesome. I had completely slacked off on planning what we were going to have for dinner, so we decided at the last minute to have spaghetti. I was going to just give Raya some corn, grapes, and tortilla chips for dinner but then I remembered that I still had a package of corn pasta in the cupboard from before we had to stop letting her eat. I asked her if she wanted to eat noodles for dinner like the big kids were having and she got all excited and yelled, "YES! I LIKE NOODLES!" (because lately, she's either whispering or yelling...)

At first I planned on giving her the noodles plain, but then I decided to take it one step further and make her some "pasta sauce" out of corn. How's that for making good use of a single-ingredient food? Corn corn corn corn corn. Ha ha. All I did was heat up some frozen corn kernels and put them in the Magic Bullet blender with water, salt and a tiny sprinkle of pepper until it was pureed but slightly lumpy. (because let's face it, Magic Bullet blenders don't do anything beyond slightly lumpy) I used 1/3 C of water, 2/3 C of corn kernels, and a TINY pinch of salt. Actually, if I'm being honest, I had to dump the first batch and start over because I put WAYYYYYYY too much salt in it the first time around but the second time, it was perfect. Then I peeled 6 grapes and cut them in half. I think peeling the grapes took me the same amount of time that it took to make the rest of everything else we ate for dinner. I don't love peeling grapes, but whatever it takes! Here's her plate:

Can I just say how exciting it was for me to be able to serve her an actual MEAL?? It was awesome. What was even more awesome was how excited RAYA was when she saw me getting her plate ready and then when I put it down in front of her. She was so excited that I had to hold her plate while we had the blessing on the food so that she wouldn't start eating until after the prayer. She asked me a million questions about her food and kept saying things like, "Thank you for dinner, Mommy! I LOVE my noodles and corn sauce! These noodles are made out of corn. I'm allergic to wheat but I'ne not allergic to corn. This is so yummy! Can I eat the grapes too? These grapes stand up, see Mommy?" Part of the challenge of getting her to eat sometimes is getting her to stop talking long enough to do it. :)

We have to give her a lot of verbal cues still, but even that is SO much easier than it was even a few months ago because she's grown up so much and she understands what we mean when we tell her to chew the food between her back teeth or move the food with her tongue. She knows what it means when we tell her to swallow now. It used to be that whenever we'd tell her to swallow, she'd take one hand and wipe it across her mouth because she thought that's what swallowing was. :) She was a very happy girl at dinner tonight.

She definitely does better when there's an adult sitting at the table with her. Donny and I got up to start cleaning up the kitchen before the kids were done eating, and as soon as we stepped away from the table, they all started being crazy. As usual, Kaida and Raya were the last ones at the table. Kaida has a yucky cough and hasn't been feeling too good so she was being quiet, and Raya ended up eating more than I expected her to. Here's her plate after she finished:

Not too shabby, eh? :) I was VERY happy with how much she ate, and with how much she loved what she was eating. There's plenty left over so that's what she'll be eating tomorrow. She also drank a whole box of Splash today, albeit over the course of about 8 hours. Calories are calories though, and that's enough to eliminate one tube feed for the day, which is our current oral intake goal. Now that she's hitting it every few days, we'll start pushing for more consistency with it. I'm completely happy with how she's doing right now though, and it's nice to see her so happy about getting to eat again. We have a long way to go, but the progress is nice.

This afternoon, I was answering some questions on the Feeding Tube Awareness facebook page and a parent had asked for help with figuring out how to drain the gastric port on her child's makeshift GJ tube. She doesn't live in the US and Raya has a different kind of tube, so after some googling and improvising, I came up with a couple of ideas that might work for her. In the process, I needed to send her pictures of what I was talking about so that she'd understand since she's not familiar with the supplies I was suggesting to her. I tried to get Raya to help me but she had a very full belly and wasn't feeling good. She flopped down on the floor and said, "Mommy, I'm too tired! I want to lay down!" So I called in the reserves. Kaida, bless her heart, has always been a little jealous of the attention that Raya gets because of her G tube. She was the same way every time one of the older kids needed a nebulizer treatment. She was MORE than happy to oblige when I told her I needed her to pretend she had a tube for a minute so I could take her picture.

The things you do for your mother when she's trying to answer questions about draining g ports on makeshift GJ tubes and the kid that actually has a tube won't cooperate... :)

Friday, June 14, 2013

Great day at feeding therapy

Raya had a lovely day at feeding therapy today. She was pretty hungry by the time we got there so she got to practice her patience skills by waiting until we went back to the feeding therapy room before she got to have her food. Today's menu was corn kernels, grapes, Splash, and tortilla chips for dessert. I gave her a grape with the skin on but cut it in half first so it would be easier to eat. It helped but not quite enough and she ended up having to spit the skins out. I peeled a grape to see if that would help and it made a huge difference. She took several little nibbles and had no trouble chewing and swallowing the grape halves. Then I gave her some corn. She had one bite but she was trying to chew it between her front teeth and it didn't work very well for her. She held one out and wanted me to peel the corn for her. Nice try, kiddo, but I will not be peeling any corn for you. :) She did well with the corn but still needs work at chewing, moving the food to the back of her mouth to swallow it, and the size of the bites she takes. It may sound funny but if she takes too small of a bite, it's harder for her to move it around in her mouth and swallow it. She ate about a tablespoon of corn and then had 4 small grapes that I peeled and cut in half. She was tired and easily distracted so I had to ask her more than once to please stop trying to stack the grapes on top of each other and eat them.

Eventually she did, and then she finished the other tablespoon of corn. She also drank about half a box of Splash and had two tortilla chips after she finished everything else. Most days, she spends about 20 minutes of her therapy session eating but today, it took her 45. She played games on her therapist's iPad and was happy the whole time.

I've made no secret of the fact that feeding therapy is difficult for me. We've been blessed with wonderful therapists and Raya has made a lot of progress, it's just hard as a mother to need help teaching your FOURTH child to eat. Today's session was good aside from the first few minutes when I had to bite my tongue a lot. The topics of where Raya sleeps and potty training came up. I don't like being told how I should be dealing with those things. The sleep issue is something we are working on as best we can. Potty training is the same deal. We actually ARE in the beginning stages of potty training but again, it will happen when it happens and it's not really relevant to feeding therapy so those little discussions bother me. I know it comes with good intention and I can understand how a lot of people feel justified in giving me advice, but this is not my first rodeo and they dont see the whole picture. None of it's not worth me getting argumentative over though so I do my best to smile and nod my way through it and move on.

Aside from that, today's session was good. It's nice to see Raya enjoying food again and although it makes me a little sad to watch her struggle to chew and swallow a few kernels of corn and realize how far we still have to go, I love seeing her work at it. Since she's doing fine with the corn and grapes, we'll most likely be adding in another food this weekend. It's going to be another exciting one! :) This evening, Donny took the three big kids to karate class and Raya and I stayed home so I could study for my anatomy lab practical (which I later took and got 100% on, by the way :). She was chattering away while she played with her little plastic horses, Cinderella, and a cup of water.  photo IMAG2959_zps35aba8ac.jpg
One of these days I'll get a video. She makes us laugh every time her toys start talking to each other. Lately she's also been launching into these long explanations of things that make my head spin a little and I want to get a video of that too. It's hard when she knows she's being recorded. (That's why there are no pictures from therapy today, I was trying not to distract her.) Her favorite things to say right now are, "Really, Mommy?? REALLY???" "That's ridic-lee-ous." And "I love you, Mommy!" which I never get tired of hearing. :) She also likes to practice saying big words or words that are hard for her to say. This evening I heard her practicing saying Aunt Joanne's name and then after she said it a few times, she said, "Really, Aunt Joanne?? REALLY???" That one made me laugh. Sometimes I forget that she's the only one home because she talks so much. As hard as some of her issues can be to deal with at times, she is such a sweetheart and I love everything about her.

Thursday, June 13, 2013

Staying cool

It's hot. We don't do much outside when it's hot but thankfully, we have access to swimming pools & splash pads close by and everything is air conditioned. We were going to go swimming on Tuesday morning but ended up needing to stay home and get some other things done. Raya had a therapy appointment that afternoon, which was probably the highlight of her day. She loves therapy!

Wednesday afternoon, the kids talked me into taking them swimming. I almost didn't because it was so hot outside. It was about 109 degrees when we left to go swimming, and that's about where I draw the line. It seems like an oxymoron to say that it's too hot to go swimming but it's easy to stay too long and get dehydrated when it's so hot and the water feels so good. Not to mention that we are all very pale people and I don't want anybody spending too much time in the sun. We only stayed for about half an hour but the kids had a great time.

Kaida refused to have her picture taken but the big kids were happy to oblige. :)

The best part about taking them swimming is that they wear themselves out and then they'll actually spend some time resting afterward. Later that afternoon, Raya helped me get a couple of Tubie Friends ready to mail.
She really liked the yellow bear with the G tube and NG tube. :)

This morning, we went to see another summer movie at the theater. Last year, taking Raya to the movies was a little tough because she could only sit for so long before she needed to get up and run around. She had a harder time sensory-wise at the movies last year too. This year, she's LOVING going to the "movie feeders"! It's been so fun because she relaxes in the dark theater and wants to snuggle with me.

After the movie, I took the kids to a splash pad for a while. I'm not a huge fan of the splash pad because it's really hot outside and I didn't get to play in the water. :) Raya LOVES it though.

Cole was being a water hog but the little kids at the splash pad didn't really seem to mind much.

The girls didn't want me to know they were getting tired because they didn't want to leave but they made it kind of obvious when they started laying down on the fountains.

Raya has been doing much better this week with sleeping in her bed all night. It's been pretty awesome. Tonight, I didn't get her in her bed before she fell asleep so we'll see how things go when I give her the night meds and put her in bed.

Sunday, June 9, 2013

the good, the weird, and the crappy

The good:
1. Raya slept in her own bed all night long on Thursday night. Or was it Friday... Whatever. It was awesome.
2. She's been in a great mood all weekend with very few fits thrown and no big meltdowns. Also awesome.
3. She talks nonstop all day long. Although it makes my head spin sometimes and makes it difficult to form a coherent sentence when I'm writing an essay or to hear myself think, I love that she can talk. I love hearing her imagination expressed in words and to hear the off-the-wall stuff she comes up with. Most of all, I love heating her say, ”I love you Mommy.” Even though most of the time, the way she says it reminds me a lot of the orphans on Annie saying, ”We love you, Miss Hannigan.” :)
4. She's been drinking Splash again. Twice in the past 4 days, she's had a breakfast of Splash and tortilla chips that was enough calories to skip her morning tube feed. That makes her happy because she gets to stay unplugged for a couple extra hours.
5. Today, she told me she had a poopy diaper. She never seems to care so it was nice to have her acknowledge it.
6. She's smart. She's gone to her classes at church for 3 weeks now and she's already able to sing her version of a couple of the songs they sing. I love hearing her sing!
7. She likes grapes. She's not very good at eating them, but she likes them. It took her about 15 minutes to eat one grape at feeding therapy on Friday and she ended up needing to spit out the skin because she couldn't get it to go down her throat and started to gag on it. But she likes them!
8. I have less than 2 weeks left of my current class and then I'll take a little break. YAY!

The weird:
1. Her sensory issues are morphing again. Now she wants to be covered up with a heavy blanket when she's trying to go to sleep. Normally she kicks off any and all blankets. She's become sensitive to light & complains/cries/whines when we're driving and there's light in her face or even when certain lights are on in the house. When we walk outside from indoors, she covers her eyes and ends up needing to be carried a lot because it's to bright. There are other sensory things that have shifted in the last 2 weeks too but I can't think of them right now. None of it is a problem, it's just funny to see how the things she can & can't tolerate change.
2. Her body doesn't seem to be adjusting very well to the recent heat. She sweats a LOT. She sweats when she's playing in the air conditioned house. She sweats when the rest of us are cold. She sweats when she's falling asleep. Her back gets sweaty from the backpack, even with ice packs up against her back, and she sweats along her hairline more often than not. We're doing extra fluids and watching her closely when we're out of the house. Hopefully her body will adjust because the heat is here to stay for the next 4 or 5 months.
3. Her energy level has been noticeably lower since she started eating food again. It started to decline a little when we started making changes to meds & added the calorie additive, but it's definitely been lower since she started eating. She lays around a lot, and that's not really her style.
She also tells me she's tired a lot. I'm sure some of that is because she wakes up in the middle of the night almost every night and sometimes is awake for an hour or so. She's getting plenty of calories and fluids so that's not the problem. She doesn't seem to be in pain but that's likely due to the med she's on for nerve pain in her gut, so thankfully it's doing its job. It makes me wonder what the med might be masking.
4. She's had some funky coloring to her skin lately. This afternoon, she reached her hand out to show me something and I noticed that both of her arms looked really splotchy and mottled. Not red or rashy looking, but her arms were a combo of large purple and pale red splotchy mottled spots. She got annoyed at me because I grabbed onto her arm and stared at it for a while. I expected her skin to be cool to the touch but it was warm and dry. I'm filing this one away with the slap cheek spots she gets every now and then and it will probably be added to her list of funny autonomic quirks when we see neuro again in July.

The crappy:
1. Her stomach is still slow. This is not new information, we're just continuing to see it on a daily basis. Not that I expected that to miraculously change, but it's frustrating to just be sitting around waiting on whatever it is that we're waiting on. Her oral intake plummets when she eats something and then it just sits in her stomach for hours. It doesn't seem to matter what time of day she eats either, her stomach is slow in the morning just like it is in the evening.
2. She wakes up in the middle of the night every single night. We've noticed that it's almost always 4 hours after she went to sleep. She's always had issues with waking up late at night. It used to be that she'd wake up to vomit every night at about 10:30 or 11. Now she just wakes up. Some of the time, she wakes up when I'm giving her the night doses of her meds or doing something with the pump, and it just happens to be close to that 4 hour mark so we're trying to do meds earlier.

Thursday, June 6, 2013

summertime, validation, and other late night ramblings

Summer is in full swing. Especially since nature got the memo that it was June and the weather suddenly got hot. We had our second swim of the summer yesterday. Thankfully this time Raya wasn't connected to her pump. That made it much easier. The good news is that our sunscreen worked. The bad news is that we are all painfully aware of the spots that I missed. In my defense, squirmy impatient kids are difficult to get even coverage on. As for myself, there are just certain directions that my shoulders can't rotate. That accounts for the crimson triangle right between my shoulder blades. The wrist spot is my left upper thigh/HP region, which I did not realize at the time was being exposed to sunlight but now I've learned my lesson. The left side of my neck was just forgetfulness. Fortunately I did a much better job on the kids than I diff on myself. They had a fabulous time swimming. They LOVE going to the pool and now that they're older, I'm not terrified to take them by myself. Still completely paranoid but not terrified.

Raya had her fair share of water inhalations but Ashtyn is the one that sounds yucky today. She already had her annual weather change cough that she gets this time of year but it sounds different today and when I listened to her lungs, one of then sounded a little crackly so we'll see how she is tomorrow. She feels fine, she just sounds gross.

After we swam, we had lunch at our neighbor/friends' house and then the kids were exhausted and ready to lounge around for the afternoon. Raya switched to a different OT for the summer and will be going earlier in three wren instead of on Fridays for a couple months. It's the same therapist we had for a few months last summer & fall and we love her typo, so we're happy to be seeing her again. Raya is moving on to a different therapy protocol to help integrate another promotive reflex that should have disappeared by now. If I ever get around to reading up on it, I'll explain it. :) I had hoped that after a couple hours of swimming and then OT, she'd be so tired that I could get a late afternoon nap out of her. Plus she had a near blowout on the way to therapy so I figured she'd fall asleep on the way home. It didn't happen. She was crabby as heck though. (except when I let her eat grapes) All of them were. I was ready for bedtime last night.

Speaking of eating... Last night I emailed her doctor to give her an update about how Raya has done with the med changes and adding corn. I explained my observations with Raya still having solids in her stomach even after liquids have passed through, and ended with, ”How long SHOULD it take for 4-5 tortilla chips to leave her stomach?” The reply I got today was sad but validating. My suspicions were right, 6 hours is a wee bit excessive. She said it should be gone in about 2. No idea what we'll do, but it made me feel a bit better to have her confirm what I'm thinking. Sucky as it may be that her stomach isn't doing what it's supposed to be doing. One thing I'm extremely grateful for is that she is not feeling miserable like so many kids with dysmotility. I'm thankful that the liquids move through and that her intestines are able to absorb enough nutrients for her to grow. It could be so much worse. Sometimes I have to remind myself of that so that I don't get so frustrated about feeling totally stagnant.

I keep saying that I don't know what will happen with her in the next few months and there are a couple reasons I keep saying it. It eats at me. I want change but I don't know if change is worth giving up familiarity. I keep mentioning it because I don't know IF anything will happen AT ALL in the next few months. I have no idea. That alone is frustrating. Even IF anything happens, I have no idea what it will be. She could have surgery, she could be sent out of state for more testing, or she could just keep doing the same things we've been doing and spend more time waiting to see if things improve on their own. Any of those could be agonizing in their own special ways. I get so impatient. It's funny that one of the things people say to me all the time is how patient I must be. That couldn't be farther from the truth. Ok, I admit there are certain ways in which I have become exponentially more patient in the past 3 years, but when it comes to waiting to see if things get better on their own, or waiting to hear back from doctors on what to try next, my patience goes out the window fast. I feel like the medical world moves in slow motion. We are not a critical case. She could go on for a very long time just living on Neocate through the tube to bypass the difficulty her stomach has with food. The question is, where do we draw the line? At what point do we say that she's as good as she's going to get, accept her GI tract for what it is, and move on? I don't think we're there yet. I know there are more things we haven't tried yet. On the other hand, how invasive do we get with her? The treatment options we do have carry risks, and some of them are pretty big. What if the benefits outweigh the risks? It's a complex issue that makes me crazy when I allow my mind to go there. I know what I want for her, and I know I can't give it to her by myself. Ack, there I go again with the speculating, wandering mind.

I realized something tonight. I already knew that most of the time, I completely love snuggling with Raya at night. On nights like tonight when she was yelling at me for the last hour that she was awake, I was happy to see her sleeping soundly on the living room floor after the other kids went to bed. I laid on the couch waiting for the inevitable 11:40pm wake up, for which she was about 7 minutes late, and I could hardly stand just looking at her when all I wanted to do was snuggle her. (this is the realization part) All day long, she is a ball of endless energy. She has a feisty personality that she has developed out of necessity, and she throws that feistiness at me all day long. At night, she's different. When sleep overpowers her, she is relaxed. (except for that one hand that's usually in a fist while she's asleep) Her defenses come down and she wants me close to her. She wants me and only me. How could I not love that? I feel guilty quite often about the lack of balance in the time I put into the other relationships I have in our little family. Even so, there is a part of my soul that needs this time with her. Not to mention that by sacrificing sleep in my own bed, I'm making it possible for everyone else to sleep peacefully because she's happy & quiet on the couch with me. :) *sigh* I hope that I won't ever regret this little nightly ritual we've fallen into. Someday get internal clock (and her GI tract) will stop waking her up every night somewhere between 10 and midnight and we won't snuggle at night anymore.

Tuesday, June 4, 2013


My little missy has developed some not great sleep habits that, when combined with her old not great sleep habits, are rather exhausting for me. And yes, they're probably mostly my fault. Sometimes you just do what you gotta do to get by. I'd be lying if I said that I didn't like the fact that she now wants to snuggle with me on the couch every night instead of going to bed. After such a long time with her resisting my every attempt to snuggle with her, I love every second of it. Even so, I know it's not the best thing for either of us in the long run. Sleep is a hard thing to get back on track once it's off.

One of the bad habits we've gotten into is letting her fall asleep in the living room instead of putting her to bed before she goes to sleep. Sometimes we can get her in her own bed after she's asleep and other times, she wakes up and throws a fit when she realizes I'm trying to get out of snuggling with her. Last night, I tried to put her in her bed and she woke up and got really mad. Eventually she said she was mad because she wanted the lights off. Then when Donny turned off the lights, she threw a huge fit again because it turned out that she wanted to turn off the lights. She got up and turned on the lights so she could turn them back off, but she also turned off the ceiling fan. When she wad finally almost back to sleep on the floor, Donny tried to turn the fan back on. Unfortunately we guessed wrong about which switch went to the light and which one went to the fan and he flipped the light back on & off. She felt personally insulted and the wailing started all over again. The funny thing lately is that some nights, she climbs in bed with us. The reason that's funny is because she is the one kid out of our four that I never expected to do that, and because she's the ONLY one that never, ever slept in our bed as a baby, not even once. The others rarely ever slept in our bed but Raya was never welcome there because of all the vomit. It made me feel bad that I didn't ever snuggle her in our bed when she was little but holy smokes, there was SO STINKIN' MUCH PUKE! Well, we're making up for lost time now, I guess. Bless her little heart, she gets so angry when she wakes up at night so I try to find a balance between giving her what she wants so she'll be quiet and not wake everybody up and not giving in to her demands. The result of that has been the many nights she's spent recently on the floor next to my side of the bed or else in it for a little while and then she falls out and keeps sleeping. It beats the heck out of the couch. It's not the most comfortable couch for sleeping on all night long.

Last night, she was supposed to be in bed and I was working on homework when the little stinker appeared behind me, demanding that I snuggle her. The argument she gave was a compelling one. ”Mommy, I have a cut on my finger and it hurts when I'm in my bed but it doesn't hurt when you snuggle me.” Well then, little lady, go get your blankets and we'll snuggle while I do my homework. :)
It's all fun and games until Mommy gets tired of typing because it's really hard when there are legs on top of your mouse hand and that's a really awkward angle to type at. As it turns out, this is a much more comfortable way to type when there's a 3 year old sleeping on your desk:

So that's how we snuggled. It was a win-win. At the point where I ran out of things I could do with her laying there, I had Donny take her to her bed. Whenever I do it, she wakes up, but she didn't wake up for him. It was actually a really good night for her. She stirred a little bit when I went in to put Pedialyte in her pump and give her the night doses of her meds but she stayed asleep. Donny must have turned off the pump when it beeped because I didn't hear a thing. She disconnected herself from the pump this morning and it was the first night in probably 2 months that she stayed in her bed the whole night and didn't wake up having a fit about one thing or another. Hopefully it's a trend that will continue!

I expect her to sleep well tonight unless her new food prevents that from happening. Corn has gone as well as expected. It still has a tendency to linger in her stomach, no matter what form it's in, but she's not miserable from it and it has made her really happy to have food to eat again. The hard part has been regulating how much she eats, and the fact that she no longer has much, if any, interest in drinking Splash or eating her Neocate pudding, so her overall oral calorie intake has gone down since she started eating. Ironic, isn't it? Anyway, since she's doing as well as we hoped with the corn so far, we decided it was time to add another food with a higher water content. Raya has been asking for a couple of months when Dr. S was going to let her eat grapes, so that's what we picked.
And she's pleased as punch to be eating them! She's obviously been deprived for a long time because I ate some too and they're not very good grapes. She did pretty well with eating them. She forgets how much food she's supposed to put in her mouth at once and she still likes to let it sit in her mouth for a little while sometimes, but she was really happy to be eating grapes. And now we keep our fingers crossed (and pray) that the grapes move on through. There's really only one way I'll be able to tell if they do or not, and that would be vomit. Chewed up grapes still aren't small enough to fit through the G tube so I won't be able to drain her stomach & see what's still there like I can with the corn. We'll just have to wait and see how she feels.

In other news, she has helped me to confirm that she is still allergic to wheat. She's been caught more than once lately on top of the kitchen counter with her hand shoved deep into the box of Special K Fruit & Yogurt and her cheeks bulging with cereal. Sure enough, a couple of days later, she gets a tiny, dotty rash around her mouth and a more visible dotty rash pretty much everywhere that her diaper covers. (and no, she's not allergic to the diapers)
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