*If you see something you'd like to repost or share, please email me and ask first. This includes but is not limited to all text, information, and photos on the blog. Thank you!*

**Disclaimer**

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


Saturday, November 22, 2014

So far behind that I can't catch up

If I try to actually write about everything that's happened since I last posted almost a month ago, I will never catch up so here's a month's worth of pictures.


10-29: went to the doctor for another cellulitis infection on her other arm (the last one was in July)
As is usually the case, it was worse than the picture made it look and got her another 10 days on antibiotics. Thankfully, since we've had her on a good probiotic (one with 10 strains of bacteria, not just 1 strain like Culturelle & Florastor) the side effects were not nearly what they have been for her before and it didn't impact her gut and her motility like it has before. HUGE blessing!!
10-30: This darling creature woke up with watery eyes, a runny nose, and croup, which earned her 3 days of oral steroids.
10-31: Both of these sweet girls woke up feeling like crap on Halloween and just wanted to snuggle. It was rather adorable.
And Piper holds her own bottle now. Bittersweet. :)
She really didn't feel good for a few days. She didn't sleep well and actually took an impromptu nap one day, which is a good indicator that she REALLY doesn't feel good.

We were supposed to go out of state for motility testing the first week of November, but we ended up having to reschedule it for several reasons. The two biggest being that she had a cough and would not have been able to have anesthesia while she had an upper respiratory infection with a cough, and because there was a death in the family and we spent the entire day before we would have been leaving town at the funeral services. Combined with all of the stress (and it was a LOT of stress) over the drama with Raya's preschool eligibility status (i.e. the psychologist trying to trick me into consenting re-evaluation now vs in the spring when it actually needs to be done which could have resulted in Raya getting booted out of preschool as of Thanksgiving), I just did not have it in me to do an out-of-state medical trip that week. Thankfully we were able to reschedule it for December. (just what we wanted to do in December, right??) And we were also able to resolve the preschool issue, thanks to a few conversations that gave me the confidence, wording, and justification I needed in order to advocate for Raya.

11-5: Raya has been helping out with dishes. This was not authorized and I took the picture on my way to fetch her from the countertop.

11-8: The kids camped out in the back yard. Thanks to an extension cord, Raya got to join them. She was really excited and said she didn't know there could be 'lectricity out there. Simple pleasures in life are the best.
11-6: We FINALLY got around to planting our fall/winter garden. I know, it sounds like an oxymoron, right? We can do that sort of thing here though, thanks to our lovely winter weather. While my family up north was getting dumped on with early snowstorms this month, we were basking in the glory of Arizona in November, which is by far one of the most wonderful months here. Raya had a really great time helping me plant the garden. It's a good exercise in tolerating textures, getting hands dirty, and talking about all of the vegetables we were planting and how delicious they are, and whether or not she can eat them. She was absolutely delightful the whole time and I really, truly enjoyed spending that time with her.

Another thing that happened this month that I don't have pictures of was that she learned how to eat Skittles. They are tricky little buggers but after she got one or two of them down (in about 6 bites each), she started to get the hang of it and ended up eating 6 Skittles. I was so proud of her! She almost gagged on the last one and had to drink water to get it to go down her throat, but she didn't puke so that was another win.

11-8: Raya came to the grocery store with me, which is something she rarely does. I usually go while she's at school or at home with her respite provider. Taking a child who has a very abnormal relationship with food to the grocery store is quite the experience. In the car, I had asked her to remind me to buy onions because I hadn't written it on my list. It also gave her a task so she felt like she was being my helper. When we walked into the produce section though, she had no idea what onions looked like. She walked up to the corn and said, "Mommy, is that onions?" Then she couldn't understand why I didn't want to buy any of the cruddy looking corn for 58 cents an ear. "But Mommy, I LIKE corn!"

11-10: I don't know how it happened, but my sweet girl turned 5 years old. It has been so different than I ever envisioned for her when I was holding my little newborn Raya for the first time, but it has been amazing. She fills our home with a unique energy (a LOT of it) and so much of our world revolves around her. She made me a mom of 4 and she made me the mom of a child with unique special needs, and that has changed my whole world. I love her more than words could ever say!


On her birthday, I went to school and brought chocolate chip cookies to her class at her request. My sister found me an allergy-friendly recipe so I made Raya some cookies for her birthday and bought cookies for the rest of her class at the store. Ashtyn did a presentation for her science class about feeding tubes and digestion since they had just finished studying the digestive system, so after I finished up at her school helping her with that, I went to Raya's class. They ate their cookies outside at recess and then got to jump in a nice, big pile of fall leaves. One of the special education teachers had driven a couple hours away over the weekend and brought back 7 trash bags full of leaves so that the kids could jump in them. It was such a sweet thing of her to do just so that these kids could experience jumping in real fall leaves. :) I love this picture so much! I think it is just the embodiment of her personality and I love the expression of joy on her face.


One of her birthday presents (ha ha) was that I let her go to school without her backpack on. She was so excited that I let her be unplugged at school. My real motivation (aside from knowing how happy it makes her to play without it on) was that I wanted her to be hungry enough to eat at least part of her birthday cookie. She LOVED handing out the cookies to her friends and she loved sitting next to her friends and holding her special cookie, but she didn't have any desire to eat it. I convinced her to take one tiny nibble before she went to play. Mostly though, she was just happy to sit and hold it. One of these years, she will devour her birthday treat. I hope.


Here are a few more from her birthday:
She requested tacos for her birthday dinner so we made tacos and invited family and a couple of Raya's friends over for dinner and cookies.

Blowing out the candle on her chocolate chip cookie plate

SO excited about her special cookies! (and they were actually good and didn't taste TOO terribly "special")

These 4 adorable and very healthy looking children are all healthy and thriving because of feeding tubes. You'd probably never guess it just by looking at them. I love these kids so much!
Irony: 3 tube fed kids and one formerly tube fed kid happily playing with plastic toy food.
 
All dressed and ready for school in her new birthday clothes from Grandma on her 5th birthday! I think this shirt is perfect for Raya! :)

The weather was absolutely beautiful on her birthday so after school, we went to the park and played. I know I'm biased but I think these girls are so beautiful!

Happy kids playing at the park!

11-7: I'm going all out of order here but I had to put this picture in. There are no words to express how much I love feeding this baby. (now that she doesn't choke on her bottles so much anymore :) ) She eats anything I feed her and she LOVES food. As much as Raya hated when we tried to feed her, that's how much Piper loves being fed. I have been making baby food for her and every single part of feeding her is just pure joy for me. I didn't realize just how much I missed having a baby with typical appetite and oral development until this girl came along.
Broken pump bags. So stinking many broken pump bags this month. We have had at least 7 in the past 2 1/2 weeks. It's been completely ridiculous, not to mention messy, inconvenient, and wasteful. I've been in communication with our home health provider and they replaced some of the bags for us. Next item on the to-do list (after I figure out our health insurance open enrollment stuff for next year) is to call the manufacturer and let them know. It's been really ridiculous though. There was one day last week where I tried to have Raya wear big girl underoos all day long and between the pee accidents and the broken pump bags, I did one load of laundry that day that was entirely Raya's.
10-11: I had no idea that the kids didn't have school that day until a couple days before Veterans' Day. Oops. We had a really full schedule between 2 therapies and a GI appointment, so it was a bad day to not have school. I took Cole with me in order to keep the kids from fighting while I was gone. He likes going to OT and Raya liked having him there. They raced on the scooter boards and played Don't Break the Ice to practice fine motor skills and motor planning. It was a good therapy session.
Ashtyn has been taking full advantage of the beautiful weather by laying out on her quilt and reading every afternoon. She loves to read!
We had a GI appointment on 10-11. It was not our most productive appointment. Raya has finally broken the 37 pound mark, which is exciting. The amount of weight she had gained in the past 3 months was not impressive, but it was a gain which means it wasn't a loss, and I'm good with that. Especially with all of the GJ tube drama that we had going on. It's amazing that she gained anything at all. I know she had to have lost a decent amount of weight during the last week of September and the first couple weeks of October, so I'm happy she's gained since her last appt. Other than that, there really wasn't anything to talk about. If we had gone to do the out-of-state testing like we had planned to the week before, we would have discussed those results, but we hadn't so there wasn't much to talk about. The doctor was rather sleepy that day and I didn't think she was going to remember much of what I told her anyway. Her head was actually bobbing while she was taking notes and she asked me the same question 3 times during the appointment and then came to the waiting room afterward to ask me that question again. She needed a nap. :) She ordered some routine labs, which Raya was NOT happy about. The last couple times she's had lab work done, the phlebotomists have gotten a good vein on the first stick. After all of the hundreds of times that it's taken multiple sticks and IV team to get labs or IVs started on her, it is a HUGE relief to have labs only take one stick. I really hope it's a continuing trend!
One good thing that came of our appointment was that I got to sneak a peek at the lab results from the labs neuro had ordered in September. Those labs prompted a discussion between neuro and genetics, which led to neuro calling me to tell me that genetics wanted to see her at their next available appointment. That happens to be in February, which is crappy, but at least now I know which things were off on the labs so I'm not going to be blindsided by it when we walk into the geneticist's office in February.

11-13: Hives. I hate hives. I don't know what caused her to break out in hives but given that she has had dairy intolerance issues and I had broken my dairy-free diet the night before by eating pizza, I was afraid that it may have been an allergic reaction. Hopefully not. Her pediatrician thinks it was a random occurrence and while I'm not totally convinced, I hope he's right.
That evening, Raya's school did a fun literacy night activity. They had stations set up at each of the classroom areas where people would read books and the kids could do crafts. I brought the 3 older girls and they loved it! They had all picked out coordinating outfits, which were hilarious but cute, and we had a really good time.

11-14: My darling baby turned 9 months old. I have to not let myself think about how fast time is flying by because it breaks my heart, but I have loved every bit of her for the last 9 months. My current favorite thing in the whole wide world is that when you hold up a corner of her blanket and say, "Here's your corner!" her whole face lights up and she grabs the corner, sticks it in her mouth, then puts her right hand in her mouth, and finally gets her thumb in her mouth and clings to the corner of the blanket while she sucks her thumb. I know, it's one of those things that only a mother can love, but I adore her and her little thumb sucking blanket addiction. She had her 9 month check-up that day and weighed in at 16 lbs 9 oz, which makes her our second smallest 9 month old. Raya was the second biggest, thanks to 7 months of tube feeding.
The girls have caught colds again, and now Donny and all the older kids have varying degrees of stuffy noses and occasional coughing fits. Somehow, we are going to have to get everybody healthy and KEEP them healthy so that we don't have to reschedule Raya's testing again. If she ends up sick again in December when we're supposed to go do the testing, we might just call the whole thing off. To be honest, I'm still on the fence about how beneficial it's even going to be, but that could just be my learned coping behavior of having low expectations of any and all medical testing in giving us helpful results. *sigh*

The weather has been cooler this past week but it has still been warm and comfortable, so the kids have enjoyed playing outside in the afternoons. I think this picture was taken on Wednesday when she didn't feel well so she didn't go to school, hence the clothes that don't match.

Raya's oral intake has been next to nothing for the past 3-4 months. Part of it is because of how her stomach feels, but I think there is also an aspect of habit to it. She has gotten out of the habit of eating. I am trying to get her back into the habit of eating lunch, and yesterday I got her to eat about 1 teaspoon of whole black beans and the equivalent of 1 tortilla chip. We were both pretty excited. At 12:30, I told her that if she ate all of her food, I would let her stay unplugged from the pump until 1:00. She decided that maybe eating 1 bean wasn't enough and maybe she could actually eat all of what I had given her, so within about 20 minutes, she had finished the 1 teaspoon of beans and 1 tortilla chip. Small victory but still a victory!

Let's see, what else. Oh, I had a dream the other night that the pump was beeping and no matter what I did, I could NOT get it to stop beeping because it had split in half right down the middle. I tried and tried but could not get it to stop beeping. Then of course, I woke up and it really was beeping. Not broken in half though, thank goodness. I don't even remember what it's like to sleep for more than 5 hours in a row. People like to tell me that I'll miss this phase of life, and I know that I will miss my babies when they grow up, but I can't help but think that I won't miss waking up at 1 or 2 or 3 in the morning every single night. I really won't. People who say that to me have kids who sleep through the night by the time they're 5.

Moving on... Raya watched a few episodes of Martha Speaks on Friday afternoon. I later overheard her talking/singing to herself in the kitchen:
"Ashtyn is dignified. Kaida is dignified. Kaida climbing on the counter? UNDIGNIFIED!"
Her little operetta went on and on about Kaida climbing on the counter to get a cup, standing on the counter to get something off the top of the fridge, and so on. It was her passive-aggressive way of tattling on Kaida. The really funny part was when Kaida (whilst standing on the counter) said, "*sigh* Raya, what does dignified and undignified even MEAN?" To which Raya replied, "Dignified means sitting up straight and drinking tea. Undignified means rolling around on your back when you're wearing a sweater." And that is what happens when children learn things from PBS shows about dogs who talk. And speaking of talking, I will leave off with this little gem of a video. Raya wanted to "read" a story to me this evening so she picked a book about Snoopy and his brothers & sister at the Daisy Hill Puppy Farm. (cutest little book!) She was totally making it up as she went along but I was impressed with how smooth her little story was. She sure is a funny kid!



Friday, October 31, 2014

Happy Halloween!

Tinkerbell is a little under the weather today. Enough so that she didn't go to school this morning and we had to reschedule her out-of-state motility testing that was supposed to be next week. Nobody wants to do anesthesia on a kid with a cough/upper respiratory infection. Baby sister isn't feeling good either. She has croup and was having a rough day Thursday so she's on an oral steroid that seems to be helping. (but baby 'roid rage isn't fun for anybody) Raya also has cellulitis on her arm again just like she did in July, so she's on another 10 day round of antibiotics for that. Blech. In spite of it all, we got everybody dressed up for Halloween and they all had fun trick-or-treating. In short sleeves. Halloween is one day that we especially love living in this very warm place. :)





Friday, October 24, 2014

NASPGHAN Conference

Mommy is on vacation. I haven't heard a feeding pump beep in 2 whole days. Do you know how long it's been since I went 2 days without hearing a feeding pump beep?! I don't. I miss my babies dearly (and my wonderful husband who isn't scared to be left home alone with 5 kids for 3 days) BUT I am where I need to be right now.


I had never heard of NASPGHAN until my Feeding Tube Awareness colleague, Traci, mentioned that she would be going to their conference in Atlanta. NASPGHAN=North American Society of Pediatric Gastroenterology, Hepatology, and Nutrition, by the way. We (FTA) deal primarily with the pediatric tube feeding population, so this conference is really the perfect opportunity to share our organization's purpose with the right demographic. We flew in early Thursday morning and have spent several hours in the last 2 days in our booth at the exhibit hall talking to hundreds of GI doctors, nurses, and dietitians. The response to FTA has been extremely positive. These clinicians want to do right by their patients. They are excited to see the resource that we have become for parents who need the kind of support that can only come from others who have been where they are. The Parent Guide that we released earlier this year has been very well received by the people we have talked to. I have also been talking with the reps from many of the companies that manufacture the products that all of us use to feed our children. They are also interested in hearing feedback from the people who use their products on a daily basis and they want to make things better for our children. I know that tube feeding feels lonely and can be discouraging. REALLY. I know it because I have lived it. What I have learned through my experiences working for FTA and talking with all of the providers and company reps that we have talked to is that they ARE listening, and they DO want good outcomes for the patients they serve! It doesn't always feel that way and the process can be very slow, but if we as parents and caregivers will be patient and persistent, we CAN help bring about positive changes that will impact the lives of the children we love so dearly and work so hard to take good care of. I was surprised and excited to see Raya's GI nurse in the exhibit hall today. I guess I have not done a very good job of explaining FTA to our local GI clinic because she had no idea that it existed or that I was involved in anything like this. It may sound silly but I am really enjoying what I am doing with FTA. I love the mission we have to spread positive awareness of tube feeding, and to help educate parents about tube feeding, as well as to help clinicians understand the challenges their patients will encounter with tube feeding in a home environment. I am so thankful to be involved in FTA and also extremely grateful for a husband that supports me in all of this. We have one more day at the conference and I'm looking forward to it!

Wednesday, October 22, 2014

Back to a G





This whole GJ thing just did NOT turn out like we had hoped it would. In the wee hours of the morning last Friday, I woke up to turn off Raya's pump and saw this:
A quick whiff confirmed my suspicions that there was formula in that bag, not just bile. (yep, I sniffed it. what else can you do.) I emailed the GI nurse at about 4:00 in the morning to let her know what was happening and ask what they wanted me to do and then went back to sleep. As I was getting Raya buckled into her car seat to go to school that morning, I saw this:
And that, my friends, is formula going into the J and coming right back out the G. That meant that her J was completely displaced and had coiled all the way back into her stomach. That explained why she had been feeling so crappy Thursday but it was a HUGE disappointment. When she had the GJ when she was younger, we went nearly 10 months without ever having a J dislodge, and now she's had 3 in less than a month. It is discouraging, especially knowing that the GJ gave her 2 really great weeks where she felt really good, slept well, and ate more orally.

The GI nurse called me back as I was walking out of school after dropping her off, and after discussing things, she said it would be best if we just took out the GJ and put in a regular G tube until we go to LA, and then reevaluate at that point to see where we should go. We both agreed that we don't want to put Raya through the anesthesia and radiation exposure of another tube placement, especially since she will be having anesthesia again and more radiation exposure in LA with the testing they're doing. Going back to a G tube is a bummer because it means slow feed rate and needing to be plugged in at school, but since the last GJ was causing SO much bile to back up into her stomach and need to be drained, so adding in the slower feed rate for feeling crappy plus the large volume of additional fluid to make up for the amount she was losing meant upwards of 20 hours a day on the pump. OPPOSITE of what we were going for with the GJ.

When I picked Raya up from school, I told her that Nurse Marie said we needed to take out her GJ tube since it was out of her intestine, and put in a regular G tube. (she's old enough now that I talk to her about it in pretty much the same way I would talk to another adult about it.) I told her we could do it right then or we could wait until the big kids got home from school if she would rather wait. We decided to just go ahead and do it, so I got everything ready. Then she stonewalled me.
It's kind of tough to change a tube like that. I did finally get her to turn around and lay down for me. One of the other reasons I wasn't totally sad about losing this GJ is that it was too small. They had put in a 1.5cm instead of a 1.7cm (miscommunication between the 2 tube changes) so even though I had let some of the water out, it was still putting too much pressure on her stoma and making it red and sore and goopy. One of my greatest tube feeding pet peeves is a goopy stoma. We normally keep gauze on it to keep any leakage from sticking to her skin since it's very irritating to skin, but this tube was tight enough that putting gauze around it made it even tighter. It's a little crusty and gross looking in these 2 pictures but you can see how the tube being too small has affected her stoma.It is red and irritated, and in the second picture, you can see a red spot near the balloon port that stayed red and irritated like that pretty much the whole time the tube was there.
I know it looks like she has granulation tissue but it's just scar tissue that's a little angry.

Raya wasn't too thrilled about having to change her tube but knowing that the alternative was having it changed at the hospital again, she held still and let me take the very long GJ tube out. I can't even imagine how weird that must feel to have 40 cm of tubing coiled up in your stomach.
She is such a goofball! Sooooooo it's out. And I lied, there may be a titch of granulation tissue in there, but only on the inner ring. The outer edges are scar tissue.
So now we have just a G tube again.
 
I had really hoped that the 3rd GJ would hold out until we go to LA in a couple weeks but it didn't. Boo. On the bright side, the 3rd GJ was also causing a lot of problems and making her feel crappy, so it's not entirely a bad thing that it's out. So far, G feeds are going okay. Just okay, not great but not terrible either. The worst part right now is that we are back to about 18 hours a day on the pump. Turning the pump on still makes her stomach hurt. Giving meds still makes her stomach hurt. Eating still makes her stomach hurt. She keeps asking for a Farrell bag since that was what we used to vent/drain her stomach with the GJ when she felt yucky, but we can't do that now since her formula and meds are all going in her stomach again.

Funny story about that Farrell bag. So I will be honest, I am not a very good housekeeper. My house is at my comfort level but is not magazine-worthy. Sometimes a drainage bag will sit on the counter for a day or two before it gets thrown out. (it sounds so much worse in writing) There was all kinds of chaos going on when I unplugged the Farrell bag from her stomach Friday morning (i.e. school/IEP drama, getting kids off to school, and being upset about another failed GJ tube) so I put the bag on the counter and kind of forgot about it. Saturday morning, I walked into the kitchen and saw this:
Turns out if there's formula in the Farrell bag WITH the bile, all kinds of crazy stuff goes on inside the bag and it ends up really puffy. It probably wouldn't have exploded but I felt like it was on the verge. I didn't want to just toss it in the garbage like that because I was afraid it would keep fermenting (or whatever it was doing) and end up popping, so I decided to very carefully let some of the air out. I held the tip over the sink drain and unclamped the clamps, and then squeezed the air out. I knew it would smell bad but it didn't smell like I expected it to. I was expecting more of a vomit smell but it was most definitely a really bad fart smell. So now we know that formula without bile smells like vomit, and formula with bile smells like a fart. Who needs science class. And that is my gross feeding tube-related story of the day.

Thursday, October 16, 2014

Why I haven't posted anything this week

1. busy filing a claim with secondary insurance from an urgent care visit over the summer at an urgent care where her primary insurance is not accepted but secondary is, but since primary insurance denied the claim, they refused to bill secondary so now I'm having to do it for them and hope that the secondary insurance takes me seriously since nobody there seemed to think it was kosher for a patient to file a claim

2. trying to convince school district that October is too early to do a 3 year reevaluation (never mind that it's only been 2 years) for the kindergarten transition process, which, if she happened to not score within the qualifying range, she would be booted out of preschool as of Thanksgiving, and to convince them that we do not in fact HAVE to do said reevaluation prior to the IEP meeting that is due at the end of the month, and should actually do the IEP meeting first and wait until February or March to do the reevaluation

3. trying to stay on top of making sure the hospital in LA is sending prior auth requests, insurance companies are receiving prior auth requests and granting authorizations, figuring out how we're getting to LA, how many of us are going, where we'll stay if Ronald McDonald House doesn't have a room for us (which we will not know until we get there), flip-flopping back and forth about whether we're doing the right thing by doing motility testing again even though I know we need to do it, stressing about what to do with the other kids while we're gone even though a friend has already said they could stay with her and she'll get them off to school for us, and trying to picture how we will manage having Piper at the hospital with us but knowing that I can't bring myself to leave her home

4. I'm leaving a week from yesterday to go to the NASPGHAN conference to help run the booth for the Feeding Tube Awareness Foundation (which I'm VERY excited about!!), so I have to hurry and get all of my "in case I get hit by a bus" information compiled for Donny so he is up to date on everything that needs to be done with Raya and Piper while I'm gone for 3 days
*NASPGHAN=North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition

5. trying REALLY hard not to lose my milk supply (thank you, stress...)

6. still trying to get Raya some kind of counseling/behavioral health evaluation like the developmental pediatrician recommended to help her deal with her anxiety (which has gotten exponentially worse in the last month or so, thank you, hospital) and WISHING that the people at school could see what it's like to try and get her to function at all when she's stressed out or doesn't want to do something

7. trying not to panic over any of the above items or develop any new stress-related ulcers

8. Halloween is 2 weeks from tomorrow and nobody has costumes

9. Dinner?? Didn't I just feed you guys yesterday??

10. dealing with a little girl who has not felt good since her last GJ tube change and has the behavior and poor sleep habits to prove it (and I'm not talking about naughty kid behavior, I'm talking about the coping behaviors that help her deal with how her body is feeling)

11. prescription copay reimbursement forms that have been waiting to be filled out & mailed for a long time now, which is only necessary because the mail order pharmacy our primary insurance requires us to use refuses to bill her secondary insurance like they're supposed to, so we have to pay upfront and get reimbursed (not that I'm complaining about having such wonderful insurance coverage, it's just that I kind of have enough to do already)

12. trying to find a behavioral health provider that accepts both of her insurances so we can try to get her some counseling for her anxiety, which is proving to be absolutely maddening.

So yeah. I'm a little maxed out right now. I am feeling like I'm spread way too thin but there's not much I can do about it. I mailed off the insurance claim yesterday and have drafted an email for the school psychologist, but I can't send it until I have someone read it to make sure I have worded it effectively. (and can I just say that it really sucks to feel like you're walking on eggshells and if you make one wrong move or say one word wrong, your kid might end up getting kicked out of preschool)

And also I kind of feel like this:

Yeah. I just don't want to.









Monday, October 13, 2014

Fall break

Today was the last day of Fall Break for our kiddos. I know, I know, what the heck is fall break?? That's what I said too when I first moved to this state. Then once I had kids in school, I soon understood the value of having a week long (plus a day) break in October once the weather has cooled down to the low 90s. It's a beautiful thing.

I am not the most fun mom in the world. To be honest, I spent a lot of our fall break making phone calls to insurance companies, doctors' offices, and other providers. I also spent a lot of time on the computer and trying to catch up on things that I got behind on when we spent 2 impromptu days at the hospital the week before. There was a lot of housework that needed to be done, a couple of therapy appointments, and all of the kids had different things they needed to practice (i.e. piano, karate, etc.). Oh, and I spent a lot of time awake in the middle of the night too, for one reason or another. Mostly to connect a Farrell bag to a yucky, bile-filled stomach, or to make a pump stop beeping, and then I couldn't go back to sleep.

Wednesday afternoon, the kids all had appointments to get their teeth cleaned. The older 3 kids did fabulous, as always. No concerns with anybody's teeth. Then there was Raya. Remember how I said that medical trauma always has fallout that carries over into multiple aspects of her life? Yeah. It was her worst dental cleaning yet. Even her very first one when she was 2 went better than this. It was a CLASSIC case of how Raya copes with situations that make her uncomfortable. First, she distracts herself by finding toys to play with. If there aren't any toys, she uses her hands and pretends they're people and makes them walk, talk, etc. She completely tunes out the rest of the world. Then when someone does attempt to engage her, it takes several times talking to her to get her to listen. In this case, she ignored me because I was telling her it was her turn to lay on the little table to get her teeth cleaned. When she didn't show any intention to move towards the table, I moved towards her. She turned her back to me. I picked her up and carried her the whole 3 feet to the table and attempted to lay her on it, at which point she clung to me like a baby koala. I couldn't peel her off of me no matter how hard I tried or what I said to her.

When it quickly became clear that we would not be able to do a normal cleaning, I sat on a chair with her facing me and laid her back onto the hygienist's lap. She fought us on that too but she did eventually relax enough that we could do it. She squeezed my hands the whole time, made a lot of jerky/fidgety motions, made a lot of unhappy sounds, clamped her teeth shut on the toothbrush several times, and gagged a few times. The hygienist did the best she could but they're always afraid to do much when she's not feeling cooperative. I certainly understood why Raya was acting the way she was considering the crappy week she'd had the week before, but it was still really frustrating and disappointing to see her struggle so much with something as simple as getting her teeth cleaned. She has not been THAT orally defensive in probably over a year, and has never had as difficult a time with a teeth cleaning as she did this time. Last time, she was even able to have them use the regular spinning brush thing (dental terminology is not my thing) and she did bitewing x-rays like it was no big deal. From that to this was really sad to see.
This is the kind of thing that makes me worry about what will happen when she gets reevaluated for her IEP. Her fate is in the hands of the people doing the evaluations, and if they could only see how difficult even mundane, routine things can be for her when she is not feeling well, they wouldn't be trying to scare me by saying things like, "We'll do the reevaluation so we can determine IF she's still eligible for services." *deep breaths*

On a lighter note, the kids all had a lovely time with the fake mustaches they got from the little prize machine at the dentist's office.


We did go to a birthday party on Thursday morning at a park. It had been raining off & on the night before and that morning, so the temperature was perfect and it felt amazing outside. Raya wasn't feeling very good and spent a lot of time off by herself digging in the damp sand. Then she would come up to me and shake her hands at me over and over again but wouldn't say a word. She was trying to tell me (without talking) that she wanted the sand off of her. I'd get the sand off and she would say a quiet "thank you," hug my leg, and then go dig in the sand again and repeat the whole process. I just can't even fully put into words how different she is right now than her usual self.

Friday we decided to get out of the house and get together with some good friends at a park. Raya was feeling pretty good when we left so I only brought a stroller for Piper and figured on Raya walking. She started out fine.
I mean really, does it get any cuter than that? I think not. :) I didn't even tell them to hold hands. We sat in the shade at the picnic tables and had lunch, and then the kids ran off to play. Well, except for the tweenies. Ashtyn and her BFF, Sky, had their own little picnic off by themselves. They are just too cute.

It ended up being a bit warmer out than we had anticipated. The big kids played for a while but Raya didn't last very long. She had been playing but then a boy pushed her out of his way when she was trying to get on something and knocked her down. That hurt her feelings and she was already tired and hot, so she was just done after that. She came and laid her head down on my lap for a while and cried for a few minutes. Piper spent most of the time relaxing in the stroller and gnawing on a grape in her mesh feeder. Girlfriend loves her food!

When it was time to go, Raya cried and refused to walk. It was kind of a long walk to the car, so I didn't want to have any of the other kids carry Piper, there was a lot of uphill and downhill between the playground and the car so I didn't really want them pushing the stroller either. We ended up improvising and had Raya get in the stroller and squeezed Piper in next to her. Piper wasn't happy about it at first but once we started moving, she was fine. Raya did a good job holding onto her and didn't puke, and we all made it to the car just fine so I considered it a success.

Everybody was hot & tired but they had fun and at least now we can say we did something fun over fall break. :) We kind of laid low the rest of the weekend. I went to a craft activity at church most of the day on Saturday, and then in the evening, Donny and I went to the temple to see a family that we've known for several years be sealed together. It was a beautiful night and a sweet experience to be there with them.

Sunday was pretty rough. Instead of going to church at our regular location, we drove an hour to go to church with Donny's parents because his dad was being put in as the bishop. Suffice it to say that getting 7 people ready to leave for an entire day by 8:00 in the morning is a difficult task and I failed miserably. We were super rushed and everybody was crabby but we made it. Raya usually handles church just fine with no issues. She did fine for Sacrament meeting but once it was over, they had everyone that had come for the bishopric ordinations stay in the chapel while everyone else went to class. There were a lot of people there and the noise level got a bit higher. All of a sudden, it was just too much for my girl. She started acting funny, the way she does when she gets overloaded. Most people probably wouldn't even notice it, and it's hard to fully explain. She won't talk, she gets really stiff and rigid, she cringes a lot, and she just looks distressed. At one point, I had sat down on the bench to feed Piper a bottle, and Raya sat down next to me and tried to snuggle up with Piper's soft blanket. After a few minutes of trying to communicate without her talking, she got her point across that she wanted her blanket that had been left in the car, so Donny got it for her.
The rest of the time we were in the chapel, she curled up in the corner of the bench with her blanket over her head. She started to feel better once we left the church to go to Grandma & Grandpa's house for the afternoon. (from a sensory overload standpoint, anyway) Physically, she's still feeling yucky most of the time and we're getting a lot of this:
It was nice to have a break from our usual routine but we're all ready for school to be back in session.
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