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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.

BUT
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!
Love,
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.

Thursday, June 4, 2015

Aspiration.

Until I entered the world of parenting a child with medical challenges, the word "aspiration" meant a goal or something I hoped to become. I probably had heard of the other definition but I had no experience with it. (or at least I didn't think I did. In retrospect, I'm pretty sure Ashtyn has had aspiration pneumonia before but I digress...)

According to Merriam-Webster, definition 2c of "aspiration" is: the taking of foreign matter into the lungs with the respiratory current. That is the definition we are dealing with this week. It's not Raya though...

(I propped her up against the door and took her picture in her pretty dress)
I've known since Piper was born that something was not right with the way she swallowed. Her suck-swallow-breathe coordination was not good when she was a newborn. She squeaked. She coughed. She held her breath. She refluxed. She sounded rattly and wet. At 2 weeks old, she got sick with nasal congestion (another sign of trouble) and when she drank bottles while she was sick, she turned shades of blue on me that none of my babies had ever turned before. It was scary, and I don't scare easily. I knew it wasn't right. I made this video when she was 3 days old to show to her pediatrician:




She also was unable to nurse after the first day. She made great efforts for about 24 hours and then never latched on well again, despite numerous attempts. I am still convinced that she had a tongue and lip tie that was preventing her from forming a good latch. I talked to her pediatrician about the loud breathing, inability to latch, and all of the abnormal noises she made while she ate and after she finished eating. Each time we discussed it, he reassured me that as long as she wasn't getting pneumonia, she was okay. I mostly agreed. I knew that if we did do any testing and it showed that she was aspirating, we would be looking at another kid with a feeding tube. Obviously I am eternally grateful for Raya's feeding tube because it has saved her life every day since she was 2 months old, but it is not a road that I wanted to go down a second time. It hurt my heart in a way that I can't put into words to think about doing it again, and I kept pretty quiet about the whole thing. The emotions of having another baby after you've gone through having an undiagnosed chronically ill child are complex and indescribable. Logical or not, I was afraid people were going to think I was being a hypochondriac about Piper and so I really only talked about my concerns with Donny, my sister, and my closest and most trusted medical mama friends. One of them was even kind enough to loan me her pulse oximeter for a while so that I could have peace of mind. I told her ped that I had borrowed a pulse ox and then felt like he probably thought I was a paranoid nut job for doing that. (he probably didn't, but I wouldn't blame him if he did because he had never met me before Piper's 1 week well check)

The pediatrician and I agreed that if things seemed to get worse as time went on or if she got pneumonia, we would do a modified barium swallow study (MBS). Wait and watch. Part of me hated that plan, but I also knew that there was no use jumping into a bunch of testing if we didn't see ill effects from what may or may not have been happening and so we waited.

In some ways, things did get better. She eventually stopped squeaking while she was drinking her bottles and as long as we didn't use anything but a slow flow nipple on a Dr. Brown's bottle, her choking became minimal as well. Piper has done everything at her own pace. She didn't hold her own bottle until she was almost 8 months old. She didn't start crawling on her hands and knees until she was 11 months old. At 15 months, she has taken 2-3 small steps a couple of times but is not walking yet. She has never fallen into the category of being delayed, but she is at the slower end of the curve. (for the record, I'm totally okay with that. babyhood is not a competition.) I tried to advance her to a medium flow nipple but each attempt left her choking and sputtering and sounding wet so we went back to the slow flow. At the age when the Babycenter emails were telling me she should be switching to a sippy cup, we were still very much dependent on slow flow bottles. 

Drinking liquids was not the only thing that concerned me about her swallowing. I don't remember when it started, but at some point, she started to occasionally gag and vomit during meals. It always seemed to happen when she was down to a couple bites of food left on her tray. The last Cheerio on the tray would bring her entire meal back up with a vengeance. It started happening once or twice a week and we knew it was directly a result of the way she swallowed, as opposed to a sensory issue, volume tolerance issue, or food allergy issue. (we kind of know what those vomits look like at this point, ya know?)



As her first birthday approached, I was once again fighting a nagging feeling that the swallow issues were not improving enough for me to continue ignoring them. When she got her 3rd croup in a 5 month span, I decided I'd had enough of the waiting for pneumonia. The day of her 1 year well check, she was sick with croup. I asked the pediatrician if 3 croups in 5 months could be evidence of aspiration. He didn't think so. I told him I was ready for him to order a swallow study and he obliged. I don't think either one of us really expected abnormal results. 

The MBS almost didn't happen. His office faxed the order over to the clinic I asked him to send it to, where Raya has had all of hers done and that clinic was supposed to call me to schedule the MBS. Their radiology department is notoriously awful at scheduling things and following up with people, so when I hadn't heard from them after a week or two, I called them. I left multiple voice mails and waited for a return call that never came. In the mean time, I was slowly but surely talking myself out of the swallow study. I decided I wouldn't bother with it until we went back for her 15 month well check and that I'd have the doctor re-fax the order then. A couple weeks before that, Raya had a routine follow-up appointment with her GI doctor. We were almost finished and Piper was getting crabby, so I gave her a small drink of water out of my water bottle. She coughed and sputtered and spit water everywhere. Raya's GI looked up from what she was doing and said, "Does she have a swallowing problem?" I explained that I had suspected swallowing problems and we had finally decided to go ahead with a swallow study but that radiology had never returned my phone calls about scheduling after the doctor's office faxed the order over. She went straight out into the hallway and asked one of the ladies at the nurses' station to track down the clinical nurse manager. She came in and got my contact info, Piper's info, and the pediatrician's info and told me she would follow up with me. 

Sure enough, the next day, she called me back and said that radiology told her there was no order for Piper's MBS but that she had called the ped's office and they had faxed over another one. We got it scheduled for May 19th. Then I got sick and Piper got sick, so I rescheduled it. (Read: I found out how much we were going to be paying out-of-pocket and wanted to make sure we got an accurate study!) Then she was still sick so I reschedule it again, this time for 2 weeks later. As the new appointment date approached, she still had a very wet-sounding cough. I almost called to reschedule again, but then decided to go through with it since her wet-sounding cough had not improved at all in 3 weeks and was noticeably wetter-sounding every time she drank a bottle.

I was not thinking clearly when I agreed to a 10:15 check-in time for 10:30 MBS on the same day Raya has therapy at 11:00 but by the time I realized that's how it was going to happen, it was too late to do anything about it. Thankfully, we have understanding therapists who happened to have some flexibility that day so we just came a little bit late to therapy. 

Poor Piper was not a happy girl. This kid LOVES food. She LOVES her bottle, and you just don't mess with her and her food. She could not understand why nobody would feed her that morning. She had to be NPO for at least 4 hours before the study, and I didn't wake up early enough to wake her up so she could have a bottle before the 4 hour cut-off so she was STARVING by the time we got to the clinic. 

 The speech therapist who did her study was not one that I had worked with before but she was really nice. She had a graduate student with her and there was also a radiology tech in the room when we went in. They got Raya set up with a portable DVD player in the other room while I got out all the utensils & supplies I had brought for the swallow study. They kind of laughed at how prepared I was (in a nice way, not like they were laughing at me. I think.) but I told them it was not my first rodeo. They were talking about how they'd had a mom in there the day before who was watching the screen and commented about her child aspirating before the radiologist or speech therapist could say anything. Yeah. Been there. They had all the barium ready and we were going over Piper's history while I got her out of the stroller. I told them that fatigue seems to be a factor in how she swallows, and that she seems to swallow more poorly as she goes along, so they agreed that it would be okay for me to feed her a couple ounces of milk before we started the barium. Holy smokes was she ever excited to see that bottle! She grabbed it and sucked it down like she hadn't eaten in a week. 

After she'd had her little snack, I strapped her into the special seat and the radiologist came in. I positioned myself so I could see the screen but I didn't have enough hands to video the screen like I wish I could have. In case anyone is not familiar with what the setup is like on a swallow study, here's a picture of Raya during one of hers:
Ok, not the most helpful picture but the surface to her right (on the left of the picture) is the x-ray table turned up on its side. The camera is on her left (right of the picture), I stood facing her in the exact spot I took the picture from, and the video screen is behind me and to the left of the picture.
We started with ultra thin barium, which is the consistency of water. She grabbed the bottle out of my hand and started chugging away. She swallowed fine for about 3 or 4 swallows and then I saw the first little bit of barium go down the wrong way. I think I let out an audible groan at that point because I knew it was not good. Before I could even finish saying, "That was an aspiration, wasn't it." she did it again. And again. At least she coughed a couple times. The radiologist was dictating notes to his tech as Piper drank the barium, and I had to fight back tears as I watched her aspirate again and again on the screen. I didn't swear though, which is what I also felt like doing. 

They had me take the bottle from her. She did NOT want to give it up! I handed it back to the speech therapist and she dumped it out and poured in the next consistency, which was "half-nectar". I handed the bottle back to Piper and she happily drank it. We watched on the screen as she aspirated the half-nectar consistency about 3 times in a row. She never coughed that time. That means her body was not trying to protect itself by coughing to clear the liquids out of her airway, and that is bad. *more swear words*

Once again, I had to pry the bottle out of her little hands. That child has the most non-discriminating taste buds of anyone I know. The speech therapist switched to nectar consistency and Piper gladly took the bottle back from me. This was the only point during the study that I got nervous. Nectar consistency is not a huge adjustment from not thickening, but honey is. I know there are kids who live off of honey consistency thickened liquids, but I watched the screen feeling like nectar vs honey could be the difference between a kid who continues to drink liquids by mouth and one who needs a tube for liquids. To my great relief, there was a noticeable difference in how she was able to swallow with the nectar thick barium vs the half nectar and ultra thin. It went right where it was supposed to go. 

After that, they handed me the cup of pudding thick barium and Piper's spoon. I moved the spoon toward her mouth thinking that she would pull the bottle of barium out of her mouth when she saw it coming but she did not. She just sucked harder on the bottle, like her brain was confused and couldn't get her mouth and hands to do what she wanted them to. I pried the bottle out of her hand while she screamed at me, and then cried her little brokenhearted cry. I fed her a couple of spoonfuls of the barium and she gladly ate them and stopped crying. Thankfully, the pudding thick barium went down great as well, meaning that she is safe to continue eating pureed and mashed food. After that, we moved on to the barium cookie. I gave her a small chunk to eat and she swallowed it pretty well. I gave her another chunk and that kind of pooled in her throat before it went down but none of it went where it wasn't supposed to, so she is safe to continue eating solids as well. She insisted on finishing the last piece of the cookie even though we were done at that point. I have never seen a kid so enthusiastic about drinking barium, nor have I ever seen a kid get so upset about having it taken away! If there is ever a zombie apocalypse and barium is the only edible substance left on Earth, Piper will be okay.

So where does this leave us? It means we are thickening her liquids for 3-4 months to nectar consistency since she is able to swallow that safely, and then we will repeat the swallow study to see if she has improved. How am I taking it? Pretty well, I think. Right after the MBS, I was torn between being sad that she failed it and wanting to shout "I told you so!!" from the rooftops. I'm not crazy!! I was RIGHT, although I certainly did not anticipate Piper's swallow study being worse than Raya's worst one but it was. (ouch, seeing that in writing stings.)

Honestly, I think we have the best case scenario though. Since Piper never nursed, I have been pumping and bottle feeding all this time, so throwing a little thickener into her bottle is no big deal. We don't have to try and convince an exclusively breastfeeding baby to take a bottle of thickened milk or formula, and that would be a MUCH bigger challenge. I may be wrong about this, but I really think that what saved our bacon is the fact that she has been on breastmilk all this time and not formula. I am convinced that if she had been aspirating formula all her life instead of breastmilk, she would have had multiple aspiration pneumonias and probably would have a feeding tube by now. I might be tooting my own horn a little bit but mostly I am just grateful that I am still able to pump and feed her breastmilk at 15 months. I never imagined I'd pump that long but dairy makes her sick and I limit the amount of soy my kids get, so if she wasn't on breastmilk still, I'm not sure what I'd be giving her. 

So far, she's handling the change well. I think she was annoyed the first day because it takes her longer to drink her bottle and she kept pulling it out of her mouth and looking at it like, "What the heck is wrong with this thing?!" She's getting used to it though. We just happened to have a few packets of thickener laying around and one of our friends had a couple extra jugs of it that we were able to get, so that will be enough to keep us going for a while. I used to have several boxes of it but I gave it all away, so I was grateful that someone was able to give us some of theirs. 

I wouldn't be me if I didn't have some little nagging anxiety in the back of my mind wondering if this dysphagia is just a fluke or if it's a symptom of something bigger. For now, we're just counting our blessings. I have to say that it was SO STINKIN' AWESOME to go in, do a test, have it show a problem, and know what to do to treat the problem. It was a nice change from how testing almost always goes with Raya! 

Well, I've rambled on long enough but I felt like sharing a bit more of Piper's story now that there's more to tell. I sure do love this girl!


Wednesday, May 27, 2015

The last week of school

Things got so crazy that I didn't really mention much about the last couple weeks of school. Monday the 18th started out with an 8:30 am IEP meeting to go over Raya's kindergarten IEP. I was not as nervous going into that one as I had been going into the one before that because going into the IEP meeting, I at least knew she was GETTING an IEP. The meeting before, I had come prepared to argue my case for why she needed one and thankfully, didn't have to. It definitely helped having Donny with me at the IEP meeting too. No matter how many times I hear (and tell myself) that it's not us against them in IEP meetings, it still feels that way, so it was nice to have someone else on Team Us. Piper came too and she was very well behaved.

I still haven't read the whole IEP and I'm not going to until I'm good and ready. The most important thing is that the school recognized the needs that I explained to them and decided that Raya needs to have an aide for kindergarten. It will take some time to get everyone into a routine and train her aide (who has yet to be hired) but I am finally feeling comfortable with sending her to school for longer than 3 hours at a time. Her aide will assist with toileting at whatever level she needs assistance, sit with her in the cafeteria, take care of her feeding pump in the classroom, and be with her on the playground to keep her from overheating and from pulling her tube out. I walked out of the meeting breathing a huge sigh of relief and feeling like I can finally feel okay about sending her to school.

The rest of the day after the IEP meeting was incredibly productive. It was probably the most productive day we've had in a long time. After we got done at the meeting, I put Piper in bed for a nap until it was time to pick up Raya and Donny went to apply for a passport. After that, we took my car in to get desperately needed new tires, and to Costco. We grabbed some food on the way home and then I took Raya to the seating clinic to pick up her beautiful new medical stroller. Truth be told, I've been a little self-conscious about the fact that we got her one because to see her run around, it would be difficult for most people to understand why she needs one. Suffice it to say that there are times when she feels like crap and we still have to go places, or we're out and about and she gets too tired to keep walking, or her stomach hurts, or she starts to get too hot, or we have to go somewhere at night after the time when she needs her sleep meds (which we give on schedule regardless of where we are and what we're doing), so yeah. She is mostly able-bodied but she is too big for me to carry when she runs out of steam. We waited for 4 whole months from the time we ordered it so it was nice to finally have it come in. It is beautiful and it will be the last stroller she'll ever need. The weight limit is something like 100 lbs and it could easily fit a small teenager. It's pink and she loves it!

After I got back from picking up the stroller, we went and picked up my car from the tire place. I knew my old tires were awful and needed replaced but holy smokes, new tires feel SOOOO good! I got home from that just in time for the home health rep to come and exchange the crappy inaccurate feeding pump that had made Raya sick over the weekend by running all day without actually feeding her. Go figure, the new one did the exact same thing that night. It's so strange that we seem to have that problem around this time every year. I can't help but think it's related to the change in weather but in 5+ years, I haven't nailed it down yet.

That was one exhausting day but we got so much done! The next day was a little less busy. We had therapy and a little bit of down time to get ready for the next day. Raya's last day of school was Wednesday the 20th, and without realizing that was her last day, I had scheduled a well check for Piper for that day. She was supposed to have a swallow study done the day before but she had caught the cough that I had and I didn't want to do a swallow study when she was sick so we had rescheduled it. I never trust the length measurements when they just stretch the kid out and mark on the paper with a pen because it totally depends on the angle they hold the pen at, but girlfriend is long and skinny.
At 15 months, we're still waiting for her to decide she wants to walk and talk. She babbles a lot and is learning some new sounds, but she doesn't use any purposeful language yet. The closest she has come is saying "Hi" but she doesn't actually say hi to people, she just sometimes says it at random. I think she meowed yesterday when she picked up Raya's beanie baby cat though. Anyway, she is 19 lbs and 1 oz, so she's on the lean side. I can't remember what percentile that put her in but it was between the 10th and 25th, I think. I'm good with that. It's right on target for one of ours. We aren't concerned about the fact that she's not walking or talking yet either. Like the pediatrician put it, development happens on a bell curve. Somebody has to be on the slower side of the bell curve or else it wouldn't be a curve. Piper is just taking one for the team, I guess. :) She has always done things at a slower pace but not so slow that we're concerned, so she's just continuing her trend. We have rescheduled the swallow study a couple times now and I was considering rescheduling it again since she is still not completely over the cough, but after discussing it with some very smart mama friends, I decided to go ahead with it this time. She is teething right now, as we discovered at her well check. She's getting 4 molars all at once and finally got the 4th bottom tooth in the front. She's had 3 down there forEVER and the 4th one finally popped through. So lots of extra slobber makes it harder to get over the junkiness. In addition, swallowing incorrectly can make junkiness worse, so I think it's best to go ahead with the swallow study and see if they can see anything dysfunctional. She vomited for no good reason this afternoon and threw up chunks of strawberries she had eaten 5 hours earlier so that's not good either.

Moving on... Wednesday was Raya's last day of school so we had a tearful goodbye with her sweet and wonderful teacher and then had an awards ceremony in Cole's class that afternoon. Raya was really crabby but she liked hanging out with Cole at his desk during the awards and felt pretty special when she got to have one of the juice pouches at the end. She only had a sip or two but she LOVES when she can have what everybody else is having.

Thursday, we had an awards assembly for the 6th graders. I don't know what is wrong with the ventilation system in that room but it was hot and smelly as heck and the girls were not very patient. They were much happier when we got to come out of the room and they could actually see Ashtyn. It was her last event as an elementary schooler and now she is a big old middle schooler. Where did my baby go?!

I had given the kids the option of riding home with me or riding the bus and like every year before, they opted for the bus. Well, okay then! I anticipated some tears when they got off the bus because it happens every year, so the girls and I met them at the bus stop just in case they needed some lovin'. I think this was the least emotional they've been. They were more depressed on Wednesday. A couple of them got a little misty when they got off the bus and hugged me but they snapped out of it pretty quickly and were all smiles for the picture I took.

We came home and the kids had a snack and changed out of their school uniforms. For Ashtyn, it was the last time ever! No uniforms in middle school! She's pretty excited about that. After everybody was ready, we headed out to play for the afternoon. It was fun but I learned that sometimes, taking kids who are bummed about school being out for the summer, (i.e. miss their friends, sad they won't see their teachers again, etc.) to a place that requires patience and not getting upset when things don't go as well as you want them to is not a great combo.
(disclaimer: it was bright outside and I caught Ashtyn mid-blink)
We also ended up in a bay that was completely open on both sides, so it was very windy. Wind doesn't make for very good golf when you're already crappy golfers. I hit a couple of good ones and beat all the kids so that's all that really matters, right?
Left-handed boy living in a right-handed world
I was even nice enough to get them a little pizza to snack on.
Thankfully I had a couple of Dum-Dums in the diaper bag for Raya and Piper to snack on because they couldn't have the pizza and go figure, Raya actually wanted to eat something.

I think my favorite moment was at the beginning when our host showed us to our bay and then went to get the left handed golf clubs for Cole. He came back while I was getting all the kids organized and reminding them of the instructions. After he went over the safety rules and all of that, he offered to take a picture for us and then he said, "I just have to ask you, what's your secret? You brought 5 kids here by yourself!" I laughed and told him that the secret was that they're good kids. It was a nice compliment. They ARE good kids and I do enjoy spending time with them. There are times when I wouldn't attempt things like this by myself but the stars aligned that day and it worked for us.
Pretty darn good picture too! (and we don't look related to each other at all, do we)

I wanted to get the summer off to a good start so we spent the morning on Friday doing yard work. We trimmed all of the bushes in the front yard and bagged the clippings. It was an unseasonably comfortable day so it wasn't bad at all. The kids were pretty cooperative and helpful and we got it done pretty quickly.

Friday night, we grilled hamburgers and had corn on the cob. (or cob-on-the-corn according to Raya) There is a lot of negativity in the food world about corn these days, but for our family, corn is a huge blessing. It's a small and simple thing but everyone gets excited to have corn on the cob because ALL of us can eat it. We buy it in multiples of 7 because all 7 of us can eat it and it makes Raya so happy. The kids decided to eat outside. They crack me up when they decide to all sit on the tiny little porch by the door to the garage but I love when they do things like this. I love seeing them all happy together.

Saturday, one of my dear friends from high school was in town visiting some of her friends and they invited me to join them at the outlet mall that afternoon. It was so much fun seeing my friend and meeting her friends! Going clothes shopping is so much more pleasant when I have other people there telling me what to buy.

That evening, we decided to take the kids out for frozen yogurt to reward them for working hard in school and helping with the yard work and house work. I asked the kids working there if they knew which flavors were dairy-free (since their website said they had dairy-free flavors) and they told me all of them were dairy-free. Um, no. No they're not. They called the manager for me, who also did not know, and so the manager called the owners. After several minutes and a couple phone calls, they came back and said that the 4 fruit sorbet flavors were the only dairy-free ones. That's what I had assumed but I wanted to make sure before I fed any to my dairy-allergic and dairy protein intolerant girls. Once that was all cleared up, we sat down and had our dessert. It was another one of those awesome moments where there was something that all 7 of us could eat.
(Piper was on the floor in her car seat) I ended up feeding most of mine to Piper because the dairy-free flavors were lame. If I'm going to eat frozen yogurt, I want the cake batter flavor and the salted caramel flavor, not the fruity sorbets. *sigh* It's okay though, my dairy abstinence is for a good cause and Piper is a much healthier baby because of it so it's a small price to pay.

It was a whirlwind of a weekend but it was a really nice weekend. I sure do love and appreciate my little family!















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