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Wednesday, September 16, 2015

August/September Update

My lack of posting lately is a direct reflection of how much of my life is consumed with taking care of children (and their various needs) in one capacity or another. I am certainly not complaining about that. If there is anything that I have gained in the past 6 weeks, it is a deep (or deeper) gratitude for the privilege of having and raising my children, and being able to make decisions about how to take care of them and raise them without having to ask permission from multiple other parties. It's hard to comprehend just what a privilege that is until you see that privilege taken away from someone you know. Being involved in the capacity that we are involved in has been an eye opening experience in many ways and I can't believe how frustrating it all is. We are being kept in the dark about so much, but yet so much is being expected and asked of us. We are grateful to be able to help in an incredibly difficult situation, but this is so hard. Vagueness is one of my biggest pet peeves but we don't have a choice, so vagueness is the best I can do. Today has been exhausting in every way, and I know it is by the grace of God that I am somehow managing to keep my head above water with all of the appointments on our calendar right now.

I do have an update about the genetic labs. FINALLY. It was maddening being kept waiting as long as we were kept waiting for those results, and then to have the doctor get all snippy with me when I finally got in touch with him was just too much for me. As I had predicted, the results that were mysteriously dangled in front of us for over a month were another one of those, "Well, we found this abnormality but we don't know if it's significant or not." Raya has a mutation in a gene called the PNKD gene. PNKD stands for paroxysmal nonkinesigenic dyskinesia, which is a movement disorder that causes episodes that look like seizures. Raya has never had any episodes like that, but the lab has collected data showing that a lot of people with the same PKND gene anomaly Raya has also have gastroparesis, so there may be some link there. The next step is going to be doing parental testing. This is where I get frustrated. They tell us that if either of us has the same mutation, it means Raya's is not significant. I don't understand that. They say it's because neither of us has the same symptoms as Raya. The reason that frustrates me is that I have a family member on my side who has gastroparesis and visceral hyperalgesia like Raya, and another family member who is strongly suspected of actually having PKND. I have never had symptoms to the severity of Raya's, but I have had some GI issues that are similar, as have all of our girls. To me, that seems to suggest that there is something familial there but what do I know, right? For now, at least we have gotten the results and aren't being held in suspense anymore. We got the parental testing kits in the mail so now we need to spit in the test tubes and send them back and wait to see what they say.

The entire month of August and into September has been a marathon of appointments. Mostly for Raya. She saw her GI doctor a couple weeks ago for the first time in about 4 months. I think it was one of the longest stretches we've gone without seeing her. Unfortunately, Raya has had some troubling symptoms recently and since it's been over 2 1/2 years since her last endoscopy, her GI decided it's time to do another one. She has been having trouble swallowing, and she clears her throat constantly. As much as I don't want another diagnosis added to her list, when there are symptoms like increased dysphagia and constant throat clearing going on, I really hope she finds something so that we can figure out how to help her. I know she'll be looking for eosinophils and of course I don't want Raya to have eosinophilic esophagitis, but we have been questioning for 5 years if she has it or not and if she does, it would sure be nice to know so we could actually treat it. I'm tired of guessing, and experimenting with treatments. She has been doing so well with the variety of foods she's been eating that it makes me sad to think that we might have to take any of them away, but if it would help her feel better and be able to swallow better, then I just want to know if that's what we need to do.

We saw the allergist today and he agreed that an EGD is a good idea based on her current symptoms. We talked about a few more foods to add into her diet but agreed that it would be best to do IgE labs for those foods while she's under for the EGD and then start trialing them afterward. I don't expect anything abnormal from the IgE labs because even the foods we know she's allergic to have never come up positive on the bloodwork but we may as well try it.

Last week, Raya's name finally came up on the waiting list for the child psychologist we've been waiting to see. I put her name on the waiting list in late December or early January, so it's been 9 months of waiting to see this lady. Had I not been so overwhelmed trying to keep up with everything else, I would have tried to find someone else, but it got put on the back burner so we just waited. Our GI doctor recommended her because she's worked with a lot of chronic GI kids and she felt like it would be a good fit for Raya. After having our initial evaluation with her, I feel good about working with her and I think she will be able to give us some good tools for helping Raya. She feels that what we are dealing with may be ADHD. The plan is to start by coming up with a behavior plan and see what else we find out from all the testing we have going on. Chronic GI issues and sleep difficulties definitely play a role in the problems we are having, and I know kindergarten has been a hard adjustment. She is doing great at school, both academically and behaviorally. Her teacher even sent home a really nice note last week about how sweet and funny Raya is and how much she loves having her in class. The problem is that Raya is really good at holding herself together while she's at school, and then she falls apart when she gets home. Even with the continued use of her sleep medication, she is waking up really tired in the mornings and she just hasn't been quite herself. We are scrambling to do as much as we can before her 6th birthday, because we were informed over the summer that she is probably going to lose her DDD eligibility (meaning no more therapies) and her secondary insurance through the state, which would mean not only losing the insurance coverage but also the respite and habilitation hours. We will be appealing the denial and trying to reapply for the insurance part at the very least, but in the mean time, we're trying to take full advantage of everything she does have while she has it.

There's so much more going on that I haven't even scratched the surface, but much of it is not mine to tell other than to say that I am exhausted and overwhelmed right now. I just counted, and in the last 6 weeks, we have had 29 medical appointments. 'Nuff said. I'm looking forward to seeing neuro next week to go over all the tests she ordered, and especially the sleep study.

Sunday, August 23, 2015

Still hanging...

I've been playing phone tag with the genetic counselor. Well, mostly it's been me leaving him messages and then the one time he called me back, my phone must have been in a dead zone because it didn't ring, and then suddenly had a voice mail with no missed call. And of course it was at 4pm on Friday so do you think the guy answered his phone when I called him back? Of course not. His voice mail said, "There are some results I want to discuss with you." which I assume and hope means that there is more to the results than "normal" and that it's not another "well, we found XYZ but we don't know the significance of that, if any" because I'm so over those.

My mission in life this week (aside from taking little girls to appointments) has been to purge all of the excess clothing out of our house. I'm pretty sure that clothing is reproducing in dark corners of our house because that's the only way I can fathom how we have the amount of clothing we have. I went through some boxes of clothes yesterday and pulled out the things that will fit the little girls now, and bagged up a LOT of clothes that we hauled off to a clothing drive. It felt pretty awesome to let all of that go.

Letting go has been a bit of a theme for me this week. Letting go of material things is the obvious, but there has been a lot of figurative letting go too. Somehow, the literal letting go of things seems to smooth the rough edges of the figurative letting go. Letting go of the stuff that clutters up our space is more difficult than it seems like it should be. Nobody likes to be surrounded by clutter, yet so many people are. Everyone has their various reasons for the clutter. I don't have time to take care of it. I'm not sure what to do with all of the stuff. I don't have room to put it away so it sits in a pile instead. I'm saving it for _________ (fill in the blank). It was given to me by someone I love for a special occasion and I can't bear to part with it. Whatever the reason, there has to be a tipping point when the clutter becomes more suffocating than the reason for hanging onto it.

Clearing out the clutter is both exhausting and liberating. Letting go of the piles of stuff and taking back your space is empowering. The same goes for the figurative letting go. The figurative "clutter" of life comes in many forms and is burdensome. Taking on too many emotional and psychological burdens wears heavily on mental and emotional health. Letting go of figurative clutter is every bit as difficult as decluttering personal space. Maybe more so, since it can be hard to even recognize the figurative clutter in our lives. Sometimes we don't realize how burdensome a relationship, thought, idea, or habit is until we remove it from our lives and feel lighter and freer.

The week ahead of us, much like the last 3, will be busy. It will be packed full of appointments (we have 5 medical and a couple of other appointments scheduled) and all the usual craziness as well, like piano lessons, early release on Wednesday, scouts, youth activity, a home study, and prepping for one of the kids' birthdays this weekend. I simply cannot juggle all of those things AND all the other things I need and want to get done, so some of it will just have to be let go. It's easier said than done, but no matter how Wonder Woman I think I am, I can't do it all and this week, that will just have to be okay.

Saturday, August 8, 2015

Sure, go ahead and leave me hanging

Words escape me to describe how this week has been. The usual choices of "insanely busy" and "exhausting" and whatever else I would normally say just don't do it justice. I won't even try to explain it all but there are some important highlights.

1. We saw our former neurologist, who left the hospital-affiliated practice a couple years ago. I decided it was time to follow her, because I like the way she thinks, and I like the approach she takes with kids like Raya. The results of that appointment are that we are finally having the sleep study done that the hospital neuro clinic was supposed to have done a year ago and never called me back to schedule, even after I left multiple messages. We are also having a huge list of labs done to check things we haven't looked at in a couple years, and several things we've never looked at at all. We also have a referral to a naturopath in the area who may be able to help us look at things in a different way. We will be following up with neuro in 2 months, and hopefully by then I will have actually found time to take Raya to the lab to do the blood draw.

2. The most recent genetic test results came in. Not because the genetics office is on top of things, but because I knew the results should have been ready by now so I started calling them until they acquired a copy from the lab. (These tests were some that were ordered when Raya was a baby, and I only found out in February of this year that they were never actually done back then when they were originally ordered.) The genetics counselor called me back Tuesday to tell me that they had gotten a copy of the results and that it looks like there are some things there that may explain some of Raya's symptoms. Then of course, he followed that with, "But I can't give you any specifics until the doctor is able to review the results. We'll call you back when he has gone over them." And now it's Saturday, and I didn't hear anything back. But don't worry, Mr. Genetic Counselor and Geneticist, it's not like I get butterflies in my stomach when I think about the possibility that after 5 1/2 years, we might actually have a name for whatever underlying diagnosis has eluded us thus far. So yeah, just leave me hanging for however long it tickles your fancy. I don't mind.

3. We had a consultation with the orthotic specialist this week. It probably should have happened a couple years ago but it was one of those things that took a back burner to the digestive stuff and unless you know what you're looking for, most people wouldn't recognize the problems with her gait. The orthotist confirmed that I'm not imagining things that aren't there and that she does need orthotics and physical therapy for her gait. Pending insurance approval, we'll be able to pick up her orthotics and then she can start learning to walk in them. She has made incredible progress in regards to her cerebral palsy, but there are still things that we need to work on correcting in order to prevent long term dysfunction. Orthotics and PT will help.

There were more mundane things like our garage freezer thawing out overnight, forcing me to clean it and bake 6 dozen rolls yesterday so I didn't have to throw away the thawed out dough. And Donny's car getting backed into by one of his friends. And the child who woke me up puking her guts out in the bathroom at 4 this morning. And holy hanna has it been hot this week! When I was picking Raya up from school on Wednesday at 9:40 in the morning, it was already 109 degrees. When I picked Ashtyn up from school at 4:00, it was 116. Oh, and we were asked to speak in church tomorrow and I've been so busy all week that I haven't written my talk yet, and I'm so tired now that I can't stay awake, let alone form enough coherent sentences to write something worthy of sharing over the pulpit. I hope a lot of people are out of town or sleep past their alarms. I had a dream a couple nights ago that I was sitting in church and realized I had forgotten to write my talk so I had to wing it. It was an unpleasant dream.

Aaaaanywhoo, we have had a difficult, exhausting, trying, emotionally charged, busy busy busy week but I have felt over and over again that God is making me equal to my tasks and we will survive. We have had the pleasure of a couple nice thunderstorms this week, which I always feel are a gift from God in the form of a break from the REALLY hot weather.

Sunday, August 2, 2015

Week 1 of kindergarten: DONE!

The sun was very bright, hence the squinty faces and red eyes.

Raya's first week of kindergarten is in the history books! Due to a lot of hard work by a lot of people, everything went about as smoothly as it could have.
Sunday afternoon, we packed everyone's backpacks with the rest of the school supplies that I had bought late Saturday evening. Normally it would give me anxiety to wait that long but it came down to a choice between taking a bunch of kids school shopping with me in the middle of the day when everybody else and their kids are school shopping, or waiting until Saturday evening to do it by myself. One by one, I sat down with each kid and checked off everything on their lists. (Except for the Kleenex. Had I bought the number of boxes of Kleenex requested by each kid's list, we would have been carting about 15 boxes of Kleenex to school on Monday. Ain't nobody got time fo' dat.) Sunday evening, we continued our tradition of having Donny give the kids father's blessings to help prepare them for the upcoming school year. 

Monday morning went pretty smoothly. The elementary school starts 40 minutes before the middle school, so we got the younger kids ready to go, had family prayer, and I took them to school, and then Donny took Ashtyn to school when it was time for her to start. It took some coaxing to get my too-cool 5th grader to ride to school with me instead of on the bus. Meaning I had to pull out the "because I'm the mom and I said so" card. He even asked me to drop him off before we got to the parking lot so he didn't have to walk with us. HA. There was nowhere to park since a lot of parents walk their kids to class on the first day, so we had to park really far away and then we lucked out that the teacher on bus duty hadn't locked the gate yet so we sneaked in that gate instead of having to walk all the way to the front of the school. I waved to Cole and sent him off to his classroom, and then we met Kaida's class halfway between the playground and classroom. She's not too cool to hug her mom in public yet so she gave me a big hug, gave Raya a big hug, and happily joined her class on the walk to the classroom. She LOVES school! Once we had deposited the first 2 kids, Raya and I headed to her classroom. The kindergarten wing is madness on the first day of school. I walked her into her classroom and helped her get all of her supplies onto her desk. We were introduced to Raya's aide and I told her a few quick things but pretty much all the kids' parents had walked them to class too so it was really packed and chaotic. I snapped a picture of her at her desk and then had to go to the health office to drop off medications and fill out forms.

I thought the trip to the office would take me about 5 minutes but it ended up being more like 30. I had 3 medications for Cole and 2 for Raya and each one required its own form. I try to make things as easy as possible on the health aide, especially on the first day of school. Her office is complete chaos pretty much the whole first week and I didn't want to add to it.

I spent most of the morning talking to her aide and giving her a bit of background on Raya. We got to go on a tour of the school so that the kindergartners would know what to do when it was time for lunch, and where to line up in the morning. After that, it was lunch time. Raya gets to sit at the peanut-free table. I kind of have mixed feelings about segregating kids because of a medical condition but for now it's the best thing for her. We have a really good plan worked out for lunchtime at school that I think will help improve her eating habits (i.e. help her develop a habit of eating). Her aide has done great with it all week so far and I think it's going to be a great system for us, even if it needs tweaking down the road a bit. 

After lunch, the kids got to play on the playground for a few minutes. Raya was doing great up until that point as far as tolerating the heat. I don't know what the temperature was during lunch recess but when I took her home at around 2:00, it was 110 degrees, so it was probably at least 105 at lunchtime. She did great until it was time to line up. Being the first day of school, sorting out 3 kindergarten classes proved to be a bit of a challenge. Not all of the kids knew their teachers' names yet, and some of them were off in la-la land, so it was like herding cats trying to get them lined up in the right place. We ended up standing outside in the sun for about 10 minutes trying to get all 27 of the kids together. After about 5 minutes, Raya walked over to where I was standing and leaned on my legs and told me she was "so super tired" and her face was getting red and splotchy. I took her backpack off and carried it for her for a few minutes and showed her aide that that's what she needed to be on the lookout for when Raya is outside, and that when she gets like that, she needs to go in and cool off ASAP. After everybody was gathered up, it was time for art class. I thought the regular classroom was a zoo but art class was much more difficult. The desks and chairs are made for big kids, not kindergarteners and they were still a little hyped up from lunch and recess. I think the art teacher was tired by the time we left his classroom 45 minutes later.

After art class, we headed back to the classroom. The first day is always crazy but they still managed to do a couple worksheets and learn the school and classroom rules. I hadn't necessarily planned on staying the whole day but it was for the best that I did. It gave me an opportunity to get a good feel for how the flow of their day will go, which helped me decide on the best way to go for her feed schedule and bathroom schedule. Before Monday, I'd had things planned out one way, but once I spent a day at school, I realized that it would be better to do them differently so I'm glad I stayed. I pulled her out of class at 1:30 as planned, and the timing of that worked out perfectly because that's when the class leaves for afternoon recess and snack. They walk past the office on the way to the playground so she can walk with them and then meet me in the office. She was a little bummed to not be going to the playground with her class but decided that was okay because she was really tired and her legs and feet were tired and hurting by then. We dropped off some papers to Kaida that I hadn't finished filling out by the morning and then stopped by the health office. That was when I found out about the existence of the "health care plan" that apparently is redone every year and has been in Raya's file every year. I had never been told that one existed and always just assumed that everyone was going off of the information I had added to the IEP. Turns out that someone from the district (a respiratory therapist whom we have met once. Ever.) writes all the care plans for the kids who need them and wrote Raya's based off of information from 2 years ago without contacting me or anyone else to ask for updated information. That was a bit of a shocker, especially considering all the legwork I had done at the end of the year last year to get signatures and forms filled out BEFORE the IEP meeting. I am still baffled as to how that person could have thought it was okay to use 2 year old information without contacting anyone and asking for updates but the information has now been sent and hopefully the new plan will be accurate. After that, we left the school for the day. She was thrilled as could be to officially be a kindergartener and couldn't wait to go back on Tuesday!

One thing I realized while I was there was that it was time for me to let go of control a little bit and teach them how to disconnect and reconnect Raya's pump. In the past, if she needed feeds at school, I just had the pump programmed on the interval setting and had them leave her connected to it the whole 3 hours. I had planned on having the aide disconnect her after her second feed of the day but I hadn't planned on having her disconnected between the first and second feeds. After going over the schedules though, I realized that that's what needs to be done so I took a deep breath and turned that responsibility over to the aide and health aide. I went in Tuesday morning and gave the health aide, Raya's aide, and 2 other aides the rundown of how to connect and disconnect feeds. I don't think most people can really comprehend how difficult it is to turn that responsibility over to someone else. In all of her life, I can think of 2 people aside from Donny and me who have ever connected and disconnected Raya's feeds outside of the hospital. I have always felt like this was a situation where the saying "too many cooks spoil the broth" applies, meaning that I prefer to have as few people as possible involved in touching her pump and tube. I knew eventually we'd have to let other people help with it and I could have just opted to have them leave her connected for the morning, but as long as the instructions I gave are followed, this is the best thing for her. I heard that she was quite helpful at telling them what to do when they were taking care of her pump the rest of the week so I think they'll manage. :)

Tuesday was one step closer to independence. I still had to park and walk her to class, but I walked her to where her class was lining up and then I left. I didn't go to the classroom or anything. Then I had to head home so I could take Ashtyn to school. Let the record show that no tears were shed when I dropped my baby off to her second day of JUNIOR HIGH. I am way too young to have a kid in 7th grade, I tell ya. 

I did have to come back about an hour later so I could meet with the aides, but that was all the contact I had with her that day. She looks WAYYYY too grown up in her cute little uniforms!
bright sunlight: 1, Raya: 0
Their school has a pretty liberal uniform policy, thank goodness. She was NOT excited about the clothing options but she's getting used to it. She made me laugh so hard after school. As we were pulling into the garage, she asked me, "I can wear my collar how I want when I'm not at school, right?" I told her she could and she said, "Oh good. I like it this way because this is like a vampire."

Wednesday morning, I didn't even go past the gate. I told Kaida that it was going to be her job to make sure that Raya got to the right place to line up. I fixed Raya's pump backpack, put her school backpack over the top of it, and sent them off through the gate. Watching them walk away hand-in-hand melted my heart. 
I walked over to the other gate so I could see that they got where they needed to go and watched them walk up to Raya's line. Kaida gave her a big hug and then went to line up with her class. I walked away with a smile on my face, knowing that everybody was where they needed to be, and feeling a little bit giddy over the prospect of having a peaceful, quiet day at home with Piper. I think Piper was pretty happy about it too.

Raya hit an exciting milestone on Wednesday. When she came home from school, she had managed to drink more than half of her water! Within another couple of hours, she had finished the whole bottle. Eight ounces of water in one day was a new record for her and I made sure to tell her how proud I was of her and what a great job she did. We also sent the picture to her feeding therapist who was about as excited as I was.

Wednesday night was a little rough. She went to sleep at the usual time but woke up at 10:30 and was upset because she had fallen asleep without snuggling with me first. I told her we could snuggle on the couch for a little bit since I knew her pump would be going off before too long and I'd need to get up and turn it off anyway. We laid down on the couch and I fell asleep. At 3:45 am, I woke up to find that she was wide awake and watching Jake and the Neverland Pirates on Netflix. She didn't know how many episodes she had watched and was not happy with me when I turned it off. I gave her a second dose of her sleep meds and got her bedded down on the floor next to my bed, hoping that she would get to sleep a little bit longer that way. She still woke up before 7:00 Thursday morning and was a total zombie. I would not have been surprised to have gotten a phone call that she was asleep and I needed to come pick her up. They said she was pretty subdued all day but she stayed awake. She also stayed awake on the drive to feeding therapy after school, and the drive home from feeding therapy. I really do not understand how her body can keep going and not ever slow down and relax enough for her to just fall asleep.

Friday morning after the kids had all been dropped off at school, Piper and I went to our last summer movie. It was kind of funny taking a 17 month old to a movie, but we had fun. She could care less about the movie. She was only interested in the popcorn and sitting in a big kid seat all by herself. We left a few minutes early but she lasted a lot longer than I expected her to. 

We picked her up Friday afternoon and she was bouncing off the walls but very happy. She was so proud of her construction paper mouse headband!

And I tried my best to pretend that I didn't hear the secretary call the maintenance guy on the walkie-talkie and ask him to go clean up after the boy in Raya's class that vomited about 5 minutes before Raya came to the office.  {hashtag: Mommy is a germophobe}

Overall, our week went well. I am feeling 100% justified in our decision to pull her out early every day, based on how she did once she got home each day. She does a great job of holding herself together while she's at school and then falls apart when she comes home, but she did a little better than I thought she might, so I think what we're doing is perfect for her. She kind of wore me out over the weekend. She was releasing all the pent-up energy she'd been holding in all week. She literally talked all day on Saturday. Mostly to herself and her toys. She's been much more emotional all week than she normally is, which I'm sure is due to the transition, but she asked me several times today when she could go back to kindergarten so I think she still liked it. :)

Sunday, July 26, 2015

We made it, babe!

Dear Raya,

It's late and I should be in bed. We have a big day tomorrow! I know every mom says this, but I really can't believe you're starting kindergarten tomorrow. I would say that I don't know where the time has gone, but I know exactly where it has gone. Time flies by when you're working hard, and we have been working HARD for 5 years, 8 months, and 16 days now.

When I first laid eyes on you, I could have never imagined what our journey together from birth to kindergarten would look like. To be honest, it was not at all what I wanted for you. I wish you had never been subjected to half a dozen needle pokes in the middle of the night on multiple occasions. I wish that no NG tube had ever rubbed against the tender tissue inside of your nose and no tape had ever made your soft little cheeks bleed. I wish that your first word had not been "blood pressure" and that you hadn't uttered your first word within the walls of a children's hospital.

 I wish that you had never swallowed a drop of barium. I wish that you had been able to spend your time at dance class or gymnastics instead of therapies. I wish that you hadn't spent the first 18 months of your life repulsed by the idea of eating food. I wish you had never experienced emergence delirium waking up from anesthesia. Or anesthesia, for that matter. I wish that we didn't have several souvenir photographs of the inside of your esophagus and stomach. I wish there wasn't a hole in your belly.

I wish your body and brain communicated better so that things didn't have to be so hard on you. I wish you hadn't been in isolation on your first Halloween. I wish you didn't have to be so brave. I wish your vocabulary didn't include medical terminology. I wish your skin had never been burned by your own digestive fluids. I wish you had never had to see a specialist (or 6). I wish food wasn't your enemy and you didn't need to carry EpiPens and Benadryl. Or any other medications. I wish you hadn't had to learn to walk with a feeding pump backpack on your back, even if it was ridiculously adorable.
I wish sending you to school was as easy as buying your school supplies and dropping you off like all of your friends. I wish you didn't have to worry about what might happen if someone accidentally sees your pull-ups at school or if you don't make it to the bathroom in time. I wish you could just be a carefree little kid.

I would not change any of it. (okay, maybe a little bit) Every needle poke, every NG tube placement, every anesthesia, every hour of therapy, every x-ray, every endoscopy, every G tube insertion, every traumatic GJ tube change, every vomit, every doctor appointment, every hour spent in waiting rooms, every night spent in a hospital bed, every meltdown, every test, every procedure, and every bit of pain, fear, frustration, and sadness has shaped you into the incredible little kid that you are. You have never stopped amazing me with everything you do. Every time your therapists ask you if you're done and you say you want to do one more or take one more bite, you show me your determined spirit. Every time you write your name and your letters are a little bit neater, you show me that you are capable of working at something until you get it right. Every time you take a taste of a food that I know you would rather vomit than eat, you show me that you trust the adults who are trying to help you overcome your challenges. 

Tonight as we were preparing your "all about me" bag, you chose 3 things to put in your bag that will teach your classmates about who you are. One was the family picture from last year's Christmas card. Another was your little Beanie Baby cow, because you have a LOT of those little stuffed animals and you carry at least half a dozen with you most of the time. The third thing you put in your bag was your "I ♥ a Tubie" shirt. When I asked you what you would tell your friends in your class about it, you said, "I'm gonna tell them about my tube." I asked you what you would say about your tube, and you matter-of-factly replied, "I'll tell them that it feeds me because I have trouble eating." Your answer was simple but sufficient, and my heart melted, as it does every time I hear you explain your G tube in your own words. It's adorable and it makes me so proud to hear you find your voice and speak up for yourself.

I have so many hopes for you this year, Raya. I hope that you LOVE kindergarten. I hope that you love learning, and that you will be humble enough to let your teacher teach you. I hope that you will be a good friend, and that you will love your classmates and be loved by them. I hope you will be a hard worker, even when you are asked to do things you don't want to do. I hope that you will find a good routine and that it will lead to you developing the age-appropriate self-care skills that have been so hard for you to catch up on. I hope that you will learn to handle disappointment in a constructive way. I hope that you will continue to develop a sense of ownership over your body and your health, and that you will conquer your fear of putting your own G tube in. I hope that you will be kind, but that you will also be assertive when you need to be. I hope that you can find the words to express how you are feeling and what your body needs to those who are responsible for your care at school. I hope you will be safe. I hope you never have to use the emergency supplies in the health office and that your pump bag never breaks at school. I hope you will get used to wearing your uniforms soon so that you don't keep getting upset that your uniform skirts don't move right, like your regular skirts do. Most of all, I hope that you will someday be able to comprehend how proud I am of you for working so incredibly hard to overcome so many challenges and be ready to go to kindergarten. 

It is really hard for me to turn your care over to someone else because I have spent the last 5 years, 8 months, and 16 days completely devoted to keeping you alive and healthy and I know how hard that job has been. It's hard to place that trust in someone else, especially when we haven't met her yet. There is a part of me that is sad, just like when your older siblings started kindergarten. I was sad for me because my babies are growing up, but I am so excited for you to start this stage of your life. You are READY to go to kindergarten! You keep telling me that you miss preschool; that you miss your teachers and your friends and mostly the toys, but preschool was not enough for you anymore. You outgrew preschool and now it's time for you to grow into elementary school. I love you so much and I can't wait for you to tell me all about your first day of school! You will do great things, my darling!
Mommy ♥

Wednesday, July 22, 2015

Back-to-school time again!

No, that title is not a mistake. We really are starting back to school next week. In July. Ack. I haven't even finished writing about our trip to Idaho at the beginning of July! The last week or two have been a bit rough though, and while I love my children dearly and I know I will miss them when they go to school, they have been making it SO HARD for me to be sad about school starting. So. Much. Bickering! They had such a great time while we were visiting family in a cooler climate where they could spend all day outside every day that coming home where it's too hot to do anything outside and we don't have a great big farm to roam around on was a huge downer for them. They've been bored so they've been doing what all siblings do when they get board: bug each other.

While I was driving them around from place to place today in an attempt to cram as much end-of-summer-vacation fun into our week as we can, I kept catching myself thinking about the things Piper and I can do while the older kids are at school. Piper usually took a nap while Raya was at preschool so we didn't really go places or do much of anything. Today while the kids and I were at the neighborhood pool, I thought to myself, maybe Piper and I will come to the pool by ourselves next week while the kids are at school. Then I felt a little twinge of guilt at how excited that thought made me.

After we went swimming, I took them to one of the schools in the area that serves free lunch during summer break and then we went to the library. Piper was exhausted by then and fell asleep in her stroller, so I found a book that caught my fancy, sat down in a comfortable chair in a quiet corner of the library, and read while Piper took a nap and the other kids played and looked at books. I caught myself thinking, Piper and I can come to the library for story time while the kids were at school! Then I felt a little twinge of guilt and sadness that I never got to do that with Kaida and Raya. We always had therapy appointments during story time hours. Or else I was so tired of dragging them to medical appointments that I couldn't bring myself to drag them to story time at the library too.

Thinking about that got me thinking about how I used to take Cole and Ashtyn to fun, cute little sports and dance classes at the parks & rec department when they were little. They loved those classes and I loved watching them have fun! This was from one of Ashtyn's classes. Kaida was only about 5 weeks old when Ashtyn had her performance for this class:
2007. Life was SOOOOOOO different in 2007.
Thinking about how much fun Ashtyn & Cole had in those parks & rec classes, and the prospect of being able to sign Piper up for them made me happy. Then it gave me a little twinge of guilt and sadness that Kaida and Raya never got to do any of them. I was maxed out and just couldn't add one more commitment and one more place to go. I know it's an excuse, but it is what it is.

The theme of my day was a little internal roller coaster of feeling happy and excited, followed by feeling guilt and sadness, followed by reminding myself that I have nothing to feel guilty about (although it's perfectly reasonable for me to be sad about the things that made me sad), followed by more excitement about what it will mean to have ONE kid at home again while the others are in school full time (and almost full time). It means that for a few hours every day, I will get to focus on something other than Raya. I don't mean that the way it probably sounds. What I mean is that since the day she was born, my life has pretty much revolved around her health. Not just my life, but our whole family. Our schedule has been dictated to varying degrees by her medical needs, her sensory needs, her appointments, her therapies, and whether or not I felt like venturing out with her in whatever mood or mental state she happened to be in at any given time. I feel like we've done the best we could to maintain "normal" for everybody, but the fact remains that there are things we had to give up for the greater good of focusing on Raya's medical state and development. Am I resentful about any of that? No. Am I bitter? No. Am I sad that Raya and Kaida didn't get to do some of the things Ashtyn & Cole got to do as toddlers & preschoolers? Yes. Am I excited about the prospect of going back to doing some "normal" mom stuff after spending the last 5 years and 7 months going to therapy appointments? Heck yes! Raya and I have gotten a huge amount of bonding time, albeit in the form of doctor & therapy appointments and hospital stays. Ashtyn and Cole and I did a lot of things when they were little. Kaida and I got to have a lot of one-on-one time when we started using respite care for Raya. Piper and Kaida both have been dragged along to countless appointments but that was never fun, so yes, I am really looking forward to spending some one-on-one bonding time with Piper while the big kids are at school. Even if it means having to spend a lot of time talking myself out of the ever-present mommy guilt over circumstances where I did my best to handle what life was throwing at me.

Sunday, July 19, 2015

Summer Travels

We spent the first 9 days of July traveling. We live about 1,000 miles away from my family and had not been back to visit them for 3 years, so it was a well overdue visit. Road trips are SO not my favorite. I really REALLY don't care for long road trips, but sometimes you just gotta do what you gotta do. Driving costs a fraction of what it would cost to fly and rent a car when we got there, and we also got to stay overnight with my grandparents on the way there and back, so it was well worth the drive. We decided to rent a minivan to make the trip so that we didn't put the wear & tear on our own vehicle, and it was a great way to go. We have an SUV, so the kids think vans are really cool.

I do not like road trips. Really. When it comes to vacations, I'm not the "enjoy-the-journey" type. I'm the "let's-hurry-up-and-get-there" type. Unfortunately, one can only hurry up so fast when driving from Arizona to Idaho. Thankfully, it was a very uneventful trip, and I mean that in a good way. The only problems we had were that I underestimated the volume of pee that the 2 diapered children would be voiding between some of the stopping points, which resulted in some unanticipated clothing changes. There was also the time that Raya accidentally yanked her G tube out when she was getting out of the van when we stopped for lunch.
We were all hungry and had to go potty, so rather than move things out of the way so I could lay her down and put it back in the way we normally do, I just deflated the balloon, lubed it up, and popped that puppy right back in her stomach. Bam. Tubie momma level-up for me. I also got bonus points for my super-efficient packing job and having the emergency kit easily accessible. (kinda proud of myself...) I think it was a level-up for Raya too. I know that putting a G tube back in while standing in the parking lot of Jack-in-the-Box in Page, Arizona was not on either of our summer bucket lists but we got 'er done. :) Once the tube was back in place, we had lunch and got back on the road.

After 12.5 hours in the car, we finally made it to my grandparents' house. The kids were SO excited to be there, and SO excited to be out of the car!

Grandma had dinner waiting for us when we got there, so we ate dinner and then the kids went outside to enjoy the beautiful weather in the big, beautiful back yard. Grandpa is quite the gardener, and the kids couldn't wait to see what was growing in his garden.

I suppose it was a little bit mean of me to stand Piper up in the grass like that. She hadn't really ever been on grass before. She was fine at first but then she wanted off, but couldn't walk on that surface so she had to crawl off of the grass instead. She wasn't very happy with me about that. She LOVED crawling around on the concrete driveway though. She crawled around so much that she made her knees sore but even so, she was happy as could be.

Cole found some slugs in the pea patch that Grandpa didn't know were there.

Grandpa turned 91 in June and his mobility is finally to a point where he consented to getting a little scooter to help him get around. I'm not sure that it is intended for the off-roading he's been doing with it but it makes it a lot easier for him to get out to his garden.

He helped Raya find a pea pod to pick and then showed her how to open it to get the peas out.
She was not interested in eating it like he suggested, but she thought it was pretty neat.

After spending the entire day in the car, a beautiful Utah summer evening was exactly what we all needed. The kids did a karate demonstration for their great-grandparents and Grandpa took the kids for rides on his scooter. We played outside until the sun went down.

When it got dark, we headed inside and got the kids into their pajamas. Raya climbed up onto Grandpa's lap and decided it would be funny to put his glasses on. She is such a funny kid!

The older girls have been taking piano lessons for almost a year now so they decided to play their songs for Grandma. I grew up listening to Grandma play the piano, and I don't think there is another piano anywhere that I love as much as Grandma's piano. As cheesy as it may sound, seeing and hearing my girls play Grandma's piano touched my heart. They loved playing for her and she loved hearing them play.

We sent the kidlets off to bed and decided to let everyone sleep until they were ready to get up and then stay until lunchtime before heading off on the next leg of our trip. We wanted to spend as much time as we could with Grandma & Grandpa since we hadn't seen them in so long.

The kids decided to play outside in the cool morning air after breakfast.

I went outside to get something out of the car and found Raya like this:
When I asked her why she had her blanket outside she said, "I was cold so I have to wear my blanket dress." Always the poser!

We had lunch before we loaded everybody into the car. We hadn't been able to convince Raya to eat anything the day before. Traveling was hard on her body and she just didn't feel like eating. On Thursday, the corn from Great-Grandpa's garden was too tempting for her and she decided she felt good enough to eat some.

Great-Grandma fed Piper some lunch too. This is the great-grandma that she's named after, so it was special for them to meet each other, and I was really glad that Piper was friendly to her. She's finally starting to get past her stranger danger phase a little bit. Giving her food is usually a pretty sure way to make friends with her too.
Piper made herself right at home

We had a few more hugs and kisses, and some more antics from Raya, and then we headed off to Idaho.

Being at Grandma & Grandpa's house was a breath of fresh air for me. It is and always has been my place of refuge. There is no love like that of a grandparent (or great-grandparent!) and being there was like medicine for my soul. I hear so many stories from my friends whose kids have special needs or medical concerns like food allergies, of family members not being kind and accepting of those issues. Going to Grandma's house couldn't be further from that. While we were en route to Utah, Grandma called my mom and asked her what foods Raya could eat. Then she made a special trip to the grocery store to buy margarine, and she came home and baked a bunch of potatoes (even though it heated her kitchen up to about 90 degrees) so that when we got there, she would have something that Raya could eat. She made sure not to put regular dairy butter into the bowl of corn so that if Raya wanted corn, she could have some. I noticed when I put some things in the freezer that she had a bag of rice flour and a couple packages of gluten-free things in the freezer. One of my cousins and a couple of his kids have celiac disease, so she has those things in the freezer in case they come to visit. THAT is what family is supposed to be like. Unconditional love and support. We are used to taking care of ourselves, especially when it comes to our family's dietary restrictions. It's not a big deal to us. We are used to bringing what we need and Raya is used to not eating what everybody else eats most of the time. Having someone go to the trouble of preparing food that she can eat with everyone else is a small gesture that means the world to us. The kids adore their great-grandparents, and the adoration is mutual. They all had their love tanks filled. The whole time we were there, I kept overhearing the sweet comments Grandma and Grandpa would make to each of them. They told the girls how beautiful and smart and cute they are, and Cole how handsome and strong and wonderful he is. Each of them heard over and over again how special they are. They are so blessed to be old enough to make memories with their great-grandparents!

Friday, June 26, 2015

Radio silence and playing secretary

I've been pretty quiet lately. It hasn't been completely intentional. It's been a pretty wild & busy summer by our family's standards. There have been some really awesome things that have happened, like when I was invited to fly across the country to speak at a sales meeting for a large company that manufactures many of the products that we tubie families depend on to keep our kiddos alive & thriving. That was a great experience for me. Like, really great. As it turns out, I love public speaking! I always have, but give me a topic that I'm passionate about and I really REALLY love it! That is something I really hope to have more opportunities to do in the future.

We also got to have my mom come and visit while I went on my little mom-cation for my speaking engagement. She held down the fort while Donny was working and she even got to experience the joy of re-inserting an accidentally dislodged G tube while I talked her through it over the phone. I was so proud! It was a rather humorous situation, actually. She called as I was opening the door to get in my friend's car at the airport and come home. We had JUST gotten started with the tube replacment instructions when her phone battery (which needs replaced) started to die, so she had to get Raya to move next to an outlet so she could plug her phone in so we wouldn't get cut off. Then she had to put it on speaker phone, and we kept having to tell the kids to be quiet. Especially Raya. "Raya, sweetheart, you need to stop talking and let Mommy be the one to tell GramE what to do, okay?" She is such a funny kid when it comes to her medical stuff.

We've kept busy with swimming lessons, summer movies, pool days, lunch & library time, piano lessons, staying out of the blistering heat, and (of course) a plethora of doctor and therapy appointments. We are having a good summer and it's wearing me out. All that busyness, combined with the fact that I hadn't completely gotten over my cough that I got in May before I came down with an awful sinus thing this past week, and that 3 of the 7 of us have not slept well this week (well, really there are 2 of us that haven't slept well in about 5 1/2 years...) and yeah, just not enough steam left at the end of the day to write about it all.

Oh but then there's this funk I've been in, thanks to my unofficial full time job. The phone calls. I have spent SO MUCH TIME on the phone trying to keep everything under control for Raya. At the end of May, it was the IEP stuff. We had multiple meetings, it was super stressful, I had to run around collecting doctor signatures, etc., but we got it done. I thought I'd have a month or so to just breathe and not stress about any of that stuff until I got a phone call last week having to do with eligibility for services that left me in tears for a few days. The first day, it was a full on ugly cry, first to my sweet friend over the phone and then to my poor husband. I don't want to share details but this is what I will say. When you live every day of your child's life with the purpose of keeping them as healthy as you can in spite of their medical conditions, helping them overcome the physical and psychological effects of those conditions, and trying to undo the damage that living in survival mode has done over the years; and when you've seen just how much they BENEFIT from the therapies and services they receive and you KNOW they would not be where they are without them, the threat of having those things taken away is gut wrenching. Terrifying. Beyond stressful. It feels like someone shot out the light bulb at the end of the tunnel that you had just started to be able to see, but nobody from the light bulb company will tell you why, or how to get a new one. They tell you that you might be able to if you provide them with the right proof that you need one, but then you're left to yourself to figure all the rest of it out. It is burdensome and unfair to the child who has worked his or her butt off, literally every week for the first years of life, and made amazing progress to then suddenly have the rug yanked out from under their feet because they're doing just well enough to not qualify but not quite well enough to continue progressing and thriving without services.

Because that news and the onslaught of responsibility it added to my plate wasn't stressful enough, I got a phone call this week from the home health company we have used for 5 1/2 years, since the day Raya was discharged with her very first NG tube at 2 months old, notifying me that due to disagreements between her secondary insurance company and the home health company, we are no longer able to use that company. Nothing has changed contractually. We have had the exact same combination of insurance companies and home health company for 4 1/2 years now, and it makes absolutely no sense that they (both the insurance company and the home health company) are making us switch, and it is really disappointing. I don't like changes when it comes to Raya's medical care. I've had many moments of frustration over the last 5 1/2 years with the company we were using, but overall they treated us very well and we always got what we needed. There were many times when I called and asked them to try and get us new things to try out, and they almost always came through. Even though they made silly mistakes like sending us diabetic socks instead of drainage bags, they got us what we needed and that is what kept me with that company for so long and through the frustrating moments with them.

Now, we are being forced to switch to the only company contracted with her secondary insurance. Based on previous interaction with the staff of their enteral division, I am not happy about this at all. The new company makes no effort to hide the fact that money is their priority, not the needs of the patients they serve. It is really disappointing to feel like you really are just a number and a paycheck. In my first 2 interactions with their staff this week, I repeatedly heard, "Well, I know the other company got you that product but we won't order it because it's more expensive than xyz alternative product and the amount we get reimbursed by insurance is low so it's not cost effective for us." I understand that concept, but good grief, you think that's going to make a new client feel good about getting supplies from you?? We were able to overcome our first hurdle with them concerning the type of pump we are getting, and for that we are grateful, but I'm still not over the disappointment of feeling like we were let down by the other company and the insurance company and being forced into a change that I didn't want to make. I'm sure it will be fine once we adjust to the change.

That's a little sampling of the things that have stressed me out this month. Somehow, words don't do justice to how dealing with that side of things makes me feel or the toll it takes on me mentally and emotionally. As I was taking a short break between phone calls to get food for one kid, wipe another kid's bum, and talk to all of them so they'd feel like I'm not neglecting them, I had a bit of an epiphany. Is there a word like epiphany that has a more negative connotation? If so, then that's the word I'm looking for. Every time I take Raya to a doctor's appointment, no matter which doctor it is, they always want to know if she's making progress with eating by mouth and with using the toilet. The older she gets, the worse those conversations make me feel as a mother. Often, I walk away from them going, "What is wrong with me that my 5 year old eats about 50 calories a day out of the 1350 she needs in order to grow, and she's still in pull-ups 95% of the time?! And my house is a mess and I haven't done half the things I've wanted to do with my kids this summer and I haven't taken the last 3 classes I need so I can apply to nursing school, and the kids have eaten burritos for dinner 3 times already this week, and all the other things I feel like I'm failing at."  I realized as I hung up the phone from the 4th or 5th phone call that afternoon that maybe if I wasn't doing the full-time job of coordinating care, advocating for what she needs, scheduling appointments, going to appointments, calling insurance companies, calling home health companies, waiting for deliveries, and so on, I would be able to be more consistent with actually caring for her needs. I imagine there is a fine line between that statement and making excuses for myself, but the last 2 weeks have pushed me to my breaking point and made me question how I am EVER going to get her toilet trained and off of her feeding tube. And I won't even talk about how crappy I feel at the lack of attention I am able to give to my other kids' needs because that's a can of worms that I don't have the energy to deal with.

THIS is the part of special needs parenting that I had no idea was coming. I knew seeing her sick/hospitalized/hurting would be hard. I knew the unknowns of her medical conditions would be hard. I knew that caring for her needs would be taxing. I had no idea that coordinating her care, being her unofficial case manager, and fighting through red tape year after year would be so. damn. hard. It shouldn't be this way. On one of my really tough days last week, I told Donny that all I want to do is take care of my kid. I am so tired of fighting for every single thing. I just want to be the mom for a while and not have to even think about all of the paperwork.

All that said, I would do it all again (and believe me, I will continue to) and I would do it for every single one of my kids. (I hope they never feel like I'm not as devoted to them as I am to Raya because I really would do anything for any of them.) It's just exhausting and I am worn out. I actually could have fought being forced to switch home health companies, and originally that was my plan. After thinking about it for a day though, I just couldn't do it. I gave myself permission to give up that fight, and I'm actually pretty proud of myself for that. I waved my white flag and we are making the switch, and so far I've managed to keep a pretty positive outlook on the situation. I can only pray and hope that the rest of the fires I've been trying to put out lately will turn out as favorably.

So all of that pretty much sums up why I haven't been writing. I've been going through some stuff, and sometimes it's just easier to stay quiet and process things privately than to try and sort it all out or try to make like everything is fine. Things WILL be fine (I hope), but the last 2 weeks, it has not been fine. It has been hard. I keep telling myself that when I am getting more sleep on a regular basis, it will change my life. I've also brought back my 2010 mantra of "It won't always be this way" because yeah, sometimes I just have to remind myself of that. It won't always be this way. It will be better, it will be worse, and it will be everything in between but it won't always be the way it is right now. Overall, right now is good, and I'm happy with our "right now."

Sunday, June 21, 2015

The dad who also feeds Raya

I think have done a great injustice on this blog. I think I've made it sound like I'm the one who does it all. I'm not and I don't. I'd be lost without this guy:

We were kind of just babies when we got married. I don't think we really had a clear picture of what we wanted out of life, but we knew we didn't want life without each other.
I chose well, and I like to think he did too. We make a good team. The kinds of challenges we have faced in the last 5 or 6 years have tested us in ways we had never been tested in. I think we have also found joy in places we hadn't found it in before though, and I think we have gotten better at being happy in whatever our circumstances happen to be. We've learned to lean on each other and to trust in God and His plan for our family.

I am a stubborn person. Too stubborn for my own good much of the time. Remember how I make it sound like I do everything? That's because I TRY to do everything. Sometimes I can manage what I take on but most of the time I fall short in places that I wish I didn't fall short in (i.e. keeping a tidy, clutter-free house and forgetting to do things that I said I was going to do). With all the things I'm juggling, I feel like I'm constantly dropping something and barely keeping my head above water. I've been sick for about 6 weeks now too and the kids are home for summer break, which is wonderful but demanding, and I know I'm not the easiest person to live with. Somehow, Donny finds the patience to handle me though.

He has always been a very hands-on dad. He started changing diapers from day 1 of fatherhood (okay, maybe more like day 3 or 4 because nurses & our moms were changing them the first couple days). Things got off to a little bit of a rough start with our first one and he was always right there to help me when she didn't want to eat for those first few weeks. He has cleaned up a lot of puke and poop too. He has never batted an eye about being on his own with the kids, whether it was for a few hours or a few days. Bodily fluids sometimes make him cringe and/or gag and I know that seeing his kids hurt is particularly hard for him, but he does what needs to be done when it needs to be done.
baby #1 in 2003
He never complains about anything and he listens to me when I complain about lots of things. I have had some rough days in the past couple months dealing with the paperwork/eligibility/logistics side of things and even though there's not usually anything he can do to fix the problems, he knows exactly how to help me work through the panic mode I always go into and he's patient with me and my panic mode. I know that can't be easy!

He teaches the kids things. He encourages them to find and develop new interests and he helps them figure out how to do that. He teaches them to set goals and make a plan to reach them. He teaches them to talk positively to themselves and about themselves, and he just genuinely loves them for who they are. He sees their potential and tries to show them that they are not limited in what they choose to do or accomplish in life. He is a constant, steady positive influence in my life. This is the part where I would normally say something like "I could never do it without him!" but I can't say that. In the last year, we've seen a young family member with young children be faced with that exact situation. It happens, and it can happen to anyone, so we never say never. We've always had a morbid sense of humor about the subject, which I think has been healthy for us because it has allowed us to talk about an awful but important thing. So, all that being said, I am pretty sure I could survive without him, but I sure hope I never have to because he is my partner in all this craziness and he keeps me from losing my mind. I knew I made the right choice by marrying him and nearly 14 years later, I am still seeing every day why that was the right choice. Marrying young brought unique struggles but in a way, we have grown up together and I wouldn't have had it any other way.
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