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Sunday, September 14, 2014

A sad goodbye to a dear friend


borrowed from facebook ♥
About 2 1/2 years ago, I got an email in response to a blog post I had written. The email was from a sweet young lady named Danielle, who had some similar medical conditions to Raya's. Danielle was 24 years old and had been through some incredibly difficult struggles in her life. She was very open with me and with the world through her blog "Thriving Anyway" about her struggles early on in her teenage years with eating disorders, which led to gastroparesis. Combined with other chronic illnesses & conditions that she was diagnosed with along the way (Ehlers-Danlos, mitochondrial disease, autonomic autoimmune ganglionopathy, developmental disorders, and sensory processing disorder), she had the deck stacked against her in a big way, but she never let those things overtake who she really was.

From my first interactions with her, I knew Danielle was special and I felt a deep connection with her. I have not met many people as articulate, passionate, hopeful, and intelligent as Danielle. I have always felt like a pretty smart person but I admit that there were times when Danielle emailed me to tell me about her latest medical emergency, and I had to google some of the things she wrote about. I don't think too many twentysomethings can explain the importance of adequate albumin and prealbumin levels, or what happens when they dip too low, but Danielle could. She taught me what it means to take control of your life and medical care. No decision was taken lightly. She researched every treatment, every alternative, every option, and put a great deal of thought and prayer into every aspect of her medical care. After going down a dark road through her eating disorder journey, she had turned the corner and become fully invested in preserving everything she had left.

I know Danielle would say that she looked up to me. She often told me that. Really though, I looked up to her. Although we never had the privilege of meeting in person, she became enamored with Raya through the stories I shared on my blog, and because of things she had been through in her life & childhood, she felt a connection to Raya and a kinship with her. I received many kind, heartfelt emails from her in response to blog posts I wrote on days when I was having a hard time with different aspects of Raya's care. She was always able to offer me insights from a different perspective, as someone who had been through many of those things herself. Her emails always ended with things like "I always have little Raya in my prayers!" This summer, she wrote a blog post on her blog about "quiet heroes" and included a paragraph about Raya that warmed my heart and made me smile. (here's a link to that)

As an adult with gastroparesis, Danielle was a wealth of information for me. We exchanged many emails about food, and how to work around gastroparesis. The limited amount of information that I have been able to get from Raya about how foods make her feel has always made it difficult for me to guess what to do next for her, but Danielle was able on many occasions to give me more of that firsthand insight into how Raya might be affected by eating certain things. She was able to offer advice and suggest foods that might work better for her than what we had tried, and I deeply appreciated that. We were also able to exchange experiences with formulas and various medical supplies, and ideas for "tubie hacks," meaning ways to use medical supplies creatively in order to meet our needs. She even sent Raya a cute new feeding pump backpack once because she said that she had felt the Holy Spirit tugging at her heart and wanted to do something special for Raya.

Beyond the simple sharing of information though, we shared each others joys and sadnesses. I was brought to tears many times by sweet messages she would send at just the right times, and I know that I was prompted by the spirit on many occasions to send her my love and support on her dark days too. She was a woman of faith, and she shared with me often the conversations she had with God, and what she felt His responses to her were. She was so kind in encouraging me to keep sharing Raya's story on my blog. After she had read one particular blog post, she wrote to me about how seeing a picture of Raya on a bad stomach night holding a Farrell bag that was full of her stomach contents had triggered a flood of emotion for her. This is what she said:

Brandis, I have to be honest with you. This wasn't a time that I could laugh. It very well could have been! Raya is all sorts of resilient, and there is just something very special about her...I cannot describe. But I just started weeping."
I really prayed about this last night but I still don't understand WHY this had me eruping in tears. I don't even think in that moment she even felt sick! But I don't want this to be her "new normal".
I am amused. As well as angry. If these peculiar subset of odd, inexplicable symptoms were to happen to any child, it would be strong willed and determined little Raya.
But it shouldn't have to be...
God is very interesting in the way he chooses to teach us life long lessons. And by that token, he also takes these weird high roads and SOMEHOW uses them to teach lessons not just to you, or your family, your friends or your church...
After the launching of the internet, all of us that have needed to see this: a mother and her human-ness, a little girl who again and again proves with tooth, nail, and claw that maybe just by the SHEER Grace of God that she will overcome anything that has been thrust in her way.
Maybe the tears began in the name of sadness...but I will tell you this: they ended in the name of victory.


And THAT is Danielle Nicole in a nutshell. The tone of that message was a common theme in all of the heartfelt messages she sent me over the last 2 1/2 years.  A beautiful mind and incredible soul in a broken body. An encourager. A giver. An inspiration. A breath of fresh air. Although Danielle's fragile medical state in the past couple of years prevented her from doing many of the things she had once dreamed of doing, they did not break her spirit or her mind. It was nothing short of a miracle that even during the many times that her body started to shut down due to extreme malnutrition (a complication of her illnesses), her mind was still intact and she was still able to form her jumbled thoughts into eloquent works of art.

She emailed me early in August to share with me some very exciting progress she had made with eating orally and her overall health. She said that she hadn't told anyone outside her family yet but that she was feeling optimistic that things were turning a good way for her. Before I even had a chance to respond to her email, she sent me another message letting me know that she was sitting in the hospital at 4 am with an obstruction, and that she was heartbroken and devastated. She said, "I don't know how much longer I can keep doing the food trials. I try them over and over... But I'm stubborn and cannot believe this is my forever. I am not saying there is no hope after all. Far from that." As per her usual, she ended the message on a positive note and said, "But somehow everything is really OK in the end. I at least know, if nothing else at all, that much."

That was the last message I got from her. Her final blog post explained that she had come to a place of peace an acceptance that her body was failing her for good. It is a beautifully written post, and a perfect example of how Danielle was never a victim to her illnesses.  She stated, "I won the war. I am whole. I don't have to constantly fight against a body trying very hard to die while I insist I would like to stay a moment longer. I do not have to devote another second to research regarding my conditions, no longer in and out of clinic and hospital...
...this illness didn't take me, and it never could."



And it didn't. Danielle fought harder than I have seen anyone fight, and when she knew the fight was futile, SHE made the decision to stop fighting. She has changed my life and I am eternally grateful for her.

Friday, September 12, 2014

No news is good news

I haven't updated in a while but it's because I didn't want to jinx anything. Raya has been feeling really good for about the last 10 days. When she feels good, it carries into every aspect of her life and everything is just better for her and easier for her (and for all of us).

Last Tuesday's therapy appointment went much better than the previous week's appointment. (the one where she puked because she was having major anxiety over knowing we were about to go in for a blood draw) She was a little reluctant and insisted on bringing her blanket and holding it while she did her therapy program, but she was cooperative and in a pretty good mood.
(her therapist asked her a question & she was trying to think of an answer)

Wednesday (9-3) was a pretty amazing day, and was the day that she really turned a corner. She went to school in underwear for the first time ever, and went the entire day from 8am to 7pm with no accidents. It was the first time she had ever worn them all day, and the first time she'd ever left the house for that long without a pull-up on. Potty training has been very difficult and slow going for her because of the digestive issues she has, but she had...um...emptied her bowels first thing in the morning and only ever goes once a day so I decided to throw caution to the wind and it worked out great. Not only did she wear undies all day, but she also ate food 3 times that day. She hadn't really been eating at all since she got the GJ tube in July, so it was exciting to hear her ask for food again.

Thursday (9-4) was our visit with the sleep specialist. Raya had a lovely time playing with a little boy she met in the waiting room who shared his cars with her.

 It was not as helpful as I had hoped and was a bit disappointing, but the good news was that she handled the appointment really well. She didn't hide in the stroller like she often does (probably because I made her walk since she was feeling good that day, so Piper was in the stroller) and she was chatty and friendly to the doctor. She also made it difficult for him to understand how she was ever diagnosed with cerebral palsy, which he commented on more than once, but thankfully I was in a good frame of mind and found those comments to be mildly annoying instead of sending me into a defensive panic like usual. The gist of that appointment is that while pharmaceuticals can make just about anybody fall asleep, they can't make them stay asleep. She has problems with both of those things, so pretty much what he was saying is that we're lucky the meds we're using work for getting her to go to sleep but there's nothing he can do to make her stay asleep. He also said that a sleep study would not give us any insight into why she can't fall asleep or stay asleep, unless there is apnea involved. Because she sometimes snores, we are going to do a sleep study anyway. Eventually. If they ever call me to schedule it. I was glad that I had talked to some other moms about this doctor before we went there because his personality and style can be a little hard to take. Knowing what I was walking into before I went in made it MUCH easier for me to keep up with the flow of the appointment and be able to swallow what he was saying and not take anything personally. One thing that he said that I greatly appreciated was that he could see that we were really up against a wall when we decided to start Raya on sleep meds, and that he absolutely did not judge us for that decision. It's always good to hear things like that from a doctor.

Friday was another great day. She didn't wear a pull-up to school that day and did great with using the potty all day long. In the past week, she has eaten dinner with us, meaning the same food we're eating, 4 or 5 times. It kind of came out of nowhere but it's been great to have her feeling good and doing so well. I should clarify that when I say she ate dinner with us, I mean that she took small nibbles of whatever food we were having for dinner and swallowed most of what she put in her mouth. It probably totaled about a tablespoon each time, but that's a tablespoon more than what she's been having!


One night, we ate sweet Italian turkey sausage, cooked and sliced, with zucchini and mushrooms. We also had pasta so Raya had some of her quinoa pasta, and some pasta sauce that is okay for her. She asked for food but I admit that I didn't really expect that she would eat it. I know that sounds cynical but for my own mental and emotional health, I have to find a balance between hope and reality, and a large part of that is accepting that she doesn't eat. On that night though, she was ready for food. I cringed a bit when she kept eating more food because I was afraid it would come back to haunt her (and me) later that night but she was fine! She was absolutely delightful during dinner too. It was a running commentary peppered with movie quotes and belly laughter.

The next night, she ate pork loin (it was the most tender, juicy pork loin ever, if I don't say so myself) along with a few black beans, some corn, and a few pieces of raw onion. Yep, girlfriend ate raw onion and then even though she told me it hurt her mouth & throat, she picked up another chunk and ate it too. Equally as important as the fact that she ate was that she was happy while she ate, and seemed to really enjoy dinnertime with us. She likes eating the same food everybody else is eating, so I try to make things as Raya-friendly as possible, or at least have part of the meal that she can have.



This week has gone about as well as it possibly could have, considering how busy it has been. Monday was a wild day in Phoenix. This area got about half of the annual rainfall averages in 6-8 hours on Monday morning. I woke up at 2:00 and it was pouring outside, which is not unusual for this time of year. What WAS unusual was that when I got up 4 hours later, it was STILL pouring, and the standing water was rising everywhere. We are lucky that our area has been planned well and all of the retention basins and drainage systems did their jobs, but a lot of parts of the valley were not so lucky and had flooding that caused a lot of damage. All of the parks in our neighborhood filled up with water and looked like lakes. As a result, it's been hot & muggy all week but sometimes even that is a nice break from the usual dry heat.

Tuesday, Raya had OT but her feeding therapist was still out of town. There was still standing water everywhere so driving on certain roads was a pain. Later that night, we had the viewing for Raya's 102 year old great-grandfather, who passed away last Wednesday. It had been almost exactly 3 years since his sweet wife had passed away, and although we miss them both, it was sweet to think of them being reunited. They were married for 64 years when she passed away. The day of her viewing, Raya was going through withdrawals from a medication she had discontinued. It was a stark contrast to how good she felt the night of Grandpa's viewing, and we were grateful!

Wednesday was a LOOOOONG day but also a really good day. There was a viewing at 9 and the funeral was at 10, so we got there shortly after 9. (The amount of stuff we had to pack for the 2 youngest to leave the house for the day was rather ridiculous.) The funeral was about as nice as a funeral can possibly be. Grandpa & Grandma had 5 daughters, 30 grandchildren, and 83 (and counting) great-grandchildren. Including spouses (i.e. me & all the other in-laws) there are 160 people in my mother-in-law's family. Pretty incredible! Grandma was 92 when she passed away 3 years ago, and Grandpa turned 102 in April. This is one of my favorite pictures from his birthday party:


Although there were quite a few spouses and great-grandchildren missing from the funeral, there was only 1 of Donny's cousins that wasn't able to be there. It was a beautiful thing to see so many of Grandpa's family members gathered to celebrate his life. It was the largest family gathering we've had, and probably the largest one that will ever happen. It is always sad to see a loved one pass away, even if they have lived for 102 years. The loss of the family patriarch changes things, and it's sad knowing that the family won't ever be the same without him.

The funeral service was a beautiful tribute to him. Each of his daughters shared a portion of his life story. I think one of the favorite moments was when one of the aunts played a recording of Grandpa telling a story about his childhood. The faces of all of his grandchildren lit up when his voice filled the room. He was quite the storyteller. Another favorite moment was when all of the grandchildren & their spouses, and all of the great-grandchildren got up to sing his favorite song, "I Am a Child of God". Grandpa would have loved it! One of the sweetest memories I have of Grandpa was the morning that my sister passed away. She was in a car accident in the pre-dawn hours on a Sunday morning. It happened to be the same day that my niece was being blessed, so there was a family gathering at my in-laws' house after the baby blessing. Donny and I had not made it to the blessing after getting the news of my sister's death, so we met them at the house later. I don't remember what Grandpa said to me, but he gave me a hug and handed me a $50 bill. It was a kind gesture at a time when nobody really knew what to say or do, and I really appreciated it. I've joked that I'm pretty sure he never knew my name. He always just called me "Red" or "Ol' Red" and I loved it. :)

When the funeral service was over, we all got in our cars and drove 25 miles to the cemetery where they had bought burial plots back in 1951. They were planners. :) This was the first funeral I had ever been to where there were military honors, and it really added to the experience. It was a hot, muggy day and Raya was feeling it. Poor kid was soaked with sweat and pretty exhausted. She's also been really sensitive to light lately so she insisted on wearing her Hello Kitty sunglasses. I thought she looked adorable. :)



After the graveside service, we all went back to the church for a late lunch that was provided by Grandpa & Grandma's ward members. On the way back to the church, she let out a big sigh and said, "Why do we have to keep going all these places?! Can't we just go HOME?" Everybody was pretty worn out by then. She changed her tune when we got back to the church though. It happened that most of the food was okay for Raya to eat, so she shared a plate with me and was really excited about it. 
We had tostada shells with ground beef, beans, and salsa. Her favorite thing was the salsa. After I had finished eating, she ended up sitting down next to Donny's cousin & his wife and chatted them up while eating salsa with a spoon.

After everyone was finished eating, Raya helped stack the chairs. I guess she was craving some sensory input in the form of heavy work by then because that was one of her favorite activities of the day.

 When things were all cleaned up, we said our goodbyes to the out-of-town cousins and headed home. For a couple hours. Then we all loaded up and went to our oldest nephew's JV football game. It blows my mind that he's old enough to be a sophomore in high school but it was really fun watching him play. Most of the kids enjoyed the game too. Kaida was a little bored and asked at the end of the 1st quarter if it was almost over, but other than that it went well. The weather had cooled a bit by then too and it was a nice evening for football. Raya was zapped by then and I think any other kid would have been passed out before the game was over. She would have if her mind & body would let her!
It was after 10pm when we got home, and all the kids were in desperate need of showers. They were all in bed around 10:30, which is pretty late for kids who usually go to bed between 7 and 7:30. Everybody was exhausted the next morning and I was glad Raya didn't have to go to school. Piper slept most of the day with occasional food breaks, and everybody went to bed early Thursday night.

OOH, and speaking of sleep, that has been another huge development in the past week. Raya has slept through the night for several nights in a row. She hasn't even gotten out of bed to bring me her beeping pump in the middle of the night! It has been awesome for her and for me. (well, except that I'm still pumping & bottle feeding breastmilk for Piper so I'm still up, but it's a huge improvement!)


I wish I could pinpoint something we did that caused her to turn this corner but I really don't know. She got over the cold she'd had for the couple of weeks before, and I know that helped. My only other theory is that the J portion of her GJ tube has settled into a comfortable position in her intestine and she's finally feeling good. Feeling good leads to better sleep, which leads to a happier, more cooperative, more focused child, and feeling good also leads to eating. I cringe every time I flush her J port because it is still very sluggish and even flushing with "magic water" (i.e. seltzer water) doesn't completely clear it, but I am hoping & praying that it will hold out as long as possible so that we can keep her feeling good.






Sunday, August 31, 2014

Pictures from the week

I'm a little behind on things so I'll just catch up with some pictures. :)

Last Friday (8-22) after school, I decided to make a trip to Ikea with the two little girls. I've been doing some rearranging and organizing around the house and I needed some square bins to go in a shelving unit, so I loaded them up and we headed out. Since I actually planned on buying stuff, I knew I would need space in the cart for stuff and wouldn't be able to put a car seat in it, and I also knew that I wouldn't be able to push a stroller and get the things we needed, so I put Piper in the wrap and crossed my fingers that Raya would have the energy to walk the whole time.

I love Ikea. It's one of my favorite stores to just walk around in and look at everything. Raya seemed to enjoy it too. She didn't want to ride in the cart for most of the time we were there. She just wanted to walk around and touch EVERYTHING. It took us forEVER to walk through the store because every time I turned around, she had disappeared and was off touching something. I turned around at one point after realizing she wasn't next to me anymore, and found her snuggling with a rug that was on display. She said she liked it because it was soft.
This was actually the second rug she snuggled with. It's a far cry from the 1 year old who cried when soft things touched her hands. It was an exhausting Ikea trip. Between carrying Piper the whole time and keeping Raya out of things, and then convincing her to ride in the cart when she got too tired to walk, I was worn out by the time we left. We got what we needed though.

Saturday started off all nice & peachy until I tried to give Raya her meds through the J port of her GJ. It was clogged. Thankfully, it was not clogged in the same concrete-like manner that her G port had been clogged a couple weeks earlier, and I was able to get it functional again. Not completely cleared, but functional. I love how there are so many differing opinions about how to unclog a feeding tube. Do this, don't do this, blah blah blah. You ask one person and they'll tell you to use Coke and then you ask another person (or the warning in the manufacturer's literature that comes with the tube) and they say absolutely NOT to use Coke. Well guess what. Sometimes you just gotta do what you gotta do to stay out of the hospital. Having a jejunal feeding tube, whether GJ or NJ, means that if you have a problem with it on an evening or weekend, you have no choice but to get admitted because interventional radiology works normal business hours and that's it. They don't come in during their off time for feeding tube kids. When you know that hospitalization with a tube change is the alternative, using Coke doesn't seem like such a horrible thing. Anyway, I went out and bought a bottle of Coke to see if I could get the sluggish J port running better. Since there wasn't a bottle that said "Share a Coke with your kid's clogged feeding tube," I got this one:

To make a long story short, a week later, we're still limping along with a partially clogged tube and using seltzer water to flush it instead of regular water. Seltzer water has the bubbles without the sugar (which can make clogged tubes worse) or the acid (which can damage the material the tube is made out of) or the caffeine, and seems to be helping. The longer we can avoid putting her under anesthesia again, the better.

Monday, we had an appointment with the developmental pediatrician. I normally avoid scheduling appointments in conflict with Raya's school schedule, but this is one of those doctors that you just take whatever appointment they give you because if you don't, you won't get in for another 6 months. When I called them 2 weeks earlier, they had an opening for us and so I took it, even though it meant skipping school. It takes us an hour to get there, so we grabbed some of my old CDs from the cabinet we had been cleaning out a few days earlier and listened to some good ol' retro music from my freshman year of high school. Raya LOVED it. I am amazed by how quickly she learns song lyrics. I suppose if we ever want her to learn something and she's having a hard time with it, we could just make up a song and she'd learn it in no time.

We got there a few minutes early and Raya didn't waste any time finding toys to play with.
She has been really sensitive to sunlight lately and has been wearing her sunglasses a lot. It's rather adorable.

She has had really bad doctor/medical appointment anxiety lately. After her experience the week before with vomiting at OT just because she knew she was going to get blood drawn afterward, I dreaded having to tell her we were going to another appointment. I explained that this was a doctor she had seen before, and that she is a really fun doctor that wouldn't do anything that hurt her. I reassured her several times on the drive there that it would be a fun appointment and she'd get to play with toys and just talk with the doctor. I'm so thankful that she is getting to a point of being able to understand that dialogue and that for the most part, she believes me.

And thankfully, the doctor didn't make a liar out of me. :) Raya loves one-on-one attention from adults, and that's what she got. Because of the concerns we've had the past couple months about her attention span, constant motion, and ability to focus, she did some testing with Raya to determine whether or not she has ADHD. For part of that, she asked Raya to draw a picture of a girl, and then asked her a bunch of questions about her drawing.

After a nice visit and a lot of discussion, she concluded that Raya's problems with attention and being fidgety are more likely a combination of anxiety, lack of good quality sleep on a consistent basis, and GI discomfort and that she doesn't have ADHD. This is a good thing, and eliminating that as a possibility helps to narrow our focus moving forward.

When we were leaving, Raya told me that she loved that doctor and asked me if we could go back to see her again. Unfortunately for Raya, we probably won't need to go back to see her. Go figure. I got the report from our appointment in the mail and there was one line that made me laugh out loud. It said, "Raya is a slightly small-appearing girl who is quite chatty." Yes, yes she is. :)


I took this picture Monday evening when the kids were cleaning up after dinner. Sometimes I look at Raya and little moments like this just strike me. Even with her feeding pump and Farrell bag connected to her, and the tubes dangling and in the way, she still managed to sweep up the crumbs around the table. She is so used to the tubes being there that it didn't bother her that they were in her way, she just worked around them. I know it's hard for her sometimes and that she gets frustrated by having to be "plugged in" as much as she is, but she makes the best of it and rarely complains. I love that about her.

Tuesday wasn't a great day for Raya. We were still having trouble with her partially clogged J port and the extra flushing I was having to do made her feel yucky. Her OT was out of town so we just had feeding therapy, and she really wasn't in the mood. She had asked me for a potato and bacon, so I made her some bacon and a small, white potato, but when we sat down in the therapy room, she wanted nothing to do with her food.
We tried really hard to encourage her to eat. Then we tried really hard to encourage her to have a taste. Then we begged her to just kiss the bacon. It got us nowhere, and at one point, she got out of her chair and pouted by the door. (terrible picture but I didn't want her to see me taking it)
She wasn't feeling well. Her stomach was bothering her, and she just flat out didn't feel like eating, and who can argue with that. If you feel nauseated or your stomach hurts, the last thing you want to do is eat. She played games on her therapist's iPad while I ate her potato and bacon, and then we left.

We had to stop at Lowe's on the way home, and it was almost as exhausting as taking her to Ikea but for a different reason. As much as she liked Ikea, that's how much she didn't like Lowe's. She wasn't interested in lumber or plumbing supplies, although she did strike up a nice conversation with a gentleman in the garbage disposal aisle. And pretty much everybody else we passed. When we got to the checkstand, I had to laugh a little. Most kids are drawn in by the display of candy at the register. Raya could care less about the candy. She's allergic to most of it anyway. Those clever merchandisers still got her though. I looked over at her as the guy was ringing up our purchases and she was playing with the display of little flashlights, and begging me to buy her one. Flashlights are her new fascination lately so I'm glad her birthday is only a couple months away because now I know what to get her.

She didn't have school Wednesday because it was teacher development day, so we spent the whole day at home. I didn't so much as walk outside the entire day and it was fabulous. Thursday was pretty much the same. She got bored so she made Piper a picture with stickers. We hung it on the wall above Piper's bed and she loves to look at it while she's laying in her bed.

Saturday was Kaida's birthday, so after school on Friday, the little girls and I went to the store to get what we needed to make her cake. When I picked Raya up from school, she was chattering away and then she suddenly got sad and told me that one of the kids in her class was going to Idaho and SHE wanted to go to Idaho too {*cue sad pouty face and crocodile tears*}. She was sweating buckets, she was tired, and her stomach was bothering her, so it was a sad sight to behold. I asked her what would make her feel better and all she could come up with was going to Idaho.

We were walking down the baking aisle and all of a sudden, she yelled, "MOMMY! OVER THERE! BACK UP!" I asked her what she was talking about and she said, "MARSHMALLOWS! *hee hee hee* I love marshmallows!" I backed the cart up and we went across the aisle to look at the marshmallows. They had about 10 different kinds, but all she wanted was the bag of plain miniature marshmallows. We went back across the aisle to look at frosting and sprinkles, and found the PERFECT frosting for Kaida's cake. She had requested purple vanilla flavored frosting, and they actually had some. It had a package of sprinkles in the lid so she asked me if she could have frosting and sprinkles too. The frosting didn't have anything in it that she couldn't have but the sprinkles were made out of rice flour, so I let her pick out other sprinkles that were okay for her. Marshmallows and sprinkles made her happy.

We went home and I made her a special lunch of marshmallows, non-dairy whipped topping with sprinkles, and potato chips. She was really excited but only ate about 2 marshmallows and that was enough for her. She likes the crunch of the sprinkles.

Yesterday, Raya had her first chance to feed Piper. I suppose I could have let myself get all sappy and emotional about it but I really didn't feel like it. It was actually really cute to watch her, and amusing to hear her tell Piper how to eat. "No, Pipes, you have to open your mouth! Don't stick your tongue out, you silly angel bug sweetie pie! Mommy, she swallowed it! Good job, Pipes, my little angel sweetie cutie pie!"

Friday, August 29, 2014

Heavy stuff

(This is one of those keepin' it real posts, and I can tell you right now that it's not going to be all warm and fuzzy. I'm not complaining or looking for sympathy or attention, I just need to get things off my chest and talk my way through what I've been dealing with lately.)

When Raya was a baby and then a toddler, her medical issues were always at the forefront of whatever was going on with her. Managing her feeding, therapies, medications, appointments, vomiting, and all the other day-to-day things was all-consuming for me and I have recently realized that I have not spent much time in the last 4 years thinking about anything beyond the nitty gritty medical care. All of our focus has been on working towards what has always been the ultimate goal of resolving her GI issues and getting her to eat orally and eventually remove the feeding tube. When you have a child with a feeding tube and not much in the way of a diagnosis, that is the easiest and most obvious thing to focus on. I had never put a timeline on when I thought that would happen because without a diagnosis, it's more difficult to make any kind of prediction.

When she first came home from the hospital with an NG tube, I thought we would use it for a week or two until she got back to where she was drinking enough formula on her own and then we wouldn't need it anymore. After a week or two, I thought maybe we'd need it for a month or two, but no more than that. She hadn't been diagnosed with anything and nobody could figure out why she was throwing up so much and not eating, so it wasn't like anybody could tell us what an expected time frame was for her to get back to "normal". After about 4 months, we started to have to look down the road a little farther as we started talking seriously about getting a G tube. When we got the G tube, I thought maybe it would take a year or two. Then when I'd get asked how long she'd have her tube, I'd tell people that we had no idea but that we thought she may be off of it by the time she started kindergarten. With kindergarten coming in less than a year now, I can honestly say that there is no way Raya will be off of her feeding tube when she starts kindergarten, and probably not even by the time kindergarten is over either. 

I have always done my best to be optimistic and to spew optimism to anyone who asked me questions. I don't know why it is so easy to feel obligated to put a positive spin on whatever I tell other people. I'm sure part of it is my own need to hear myself keep it positive, and it also comes from a place of hope that what I'm saying will be the case, but that's not the whole reason. It is also because many times in the past 4 years, when I have gotten brave enough to tell it like it really is to a few of the people closest to me, I have been told that I'm thinking negative and need to be positive about things. I know people don't mean harm when they say things like that, but the sad truth of it is that reality is not always positive, and being realistic does not equate to being a pessimist.  People don't want to hear the truth if it isn't pretty. You know what though? I don't either, but I don't have a choice because this is my life. Our life. It is what it is, and whether it is okay with anybody else or not is not supposed to be my highest priority.

What most people don't realize or understand is that admitting that things are not going to happen on the timeline I would like them to happen on means accepting and grieving a loss. It means accepting the reality that I have spent the last 4 1/2 years fighting against. (and yes, this involves Donny and our whole family but right now I'm just speaking for myself) Beyond accepting the fact that we have no idea when she'll be off her tube and that it will likely be a few more years, it is also hard to accept that there may not ever be a cure for what ails her and she may struggle with digestive difficulties her whole life. Up until the last week or two, I have been operating under the assumption that over time, and with all of the effort that her medical team and her family put into helping her, all of her digestive issues would improve and she would get to the point of being able to eat a relatively normal diet and not need a tube. I don't know what changed or why it happened, but I have come to the realization that there is a flip side to that assumption, and that there is a possibility that she may never be able to eat enough to not need support from a feeding tube, specialized diet, and goodness knows what else in the years to come. Her digestive problems might not be fixable. There. I said it.

And I'm not going to let anyone accuse me of being negative or pessimistic or overly dramatic just because I said that things might never get better than they are right now. Acknowledging the possibilities, both positive AND negative, does not mean that I am giving up on her or giving up on myself or giving up on the situation either. It's just that I owe it to myself to be honest, and the ugly side of the honest truth is that it is possible that the way things are right now could be as good as they ever get for her, and it could even get worse. Having a medically complex child means having layers of heartbreak. They don't come all at once, and for us, there was no diagnosis made to tip me off to the fact that we would be facing years of this. We've had ups and downs along the way, and some of them have been really difficult to handle, but I've always gotten myself past them by reminding myself that things will get better. Living her whole life believing and assuming that things would happen one way and then suddenly realizing that they may NEVER be the way you've always envisioned is heartbreaking. I don't know why it took me so long to get to the point of realizing and really internalizing all of this, but it has been quite a blow to me these past couple of weeks.

Now, all that being said, I still have hope and I believe that things will get better as she gets older. I just think that it will take longer than we have ever thought it would take. I am realizing more and more that as much as I want to fix things for her, that is not in my power to do. My biggest roles moving forward will be to keep doing research and looking for ways to treat her symptoms as they evolve and change, and to help her learn how to manage her own health and medical conditions. Obviously at this point and up until this point, we have had to do pretty much everything for her. She helps with things like putting her monthly supply shipments away and bringing me a new pump bag every morning. Over the next few years though, she is going to have to learn to listen to her body and work with what her imperfect digestive system can do. Recently, she has started to be more able to tell me when her belly hurts. She is not quite able to discern between intestinal pain and stomach pain, but I doubt that most adults could either and she's 4, so I think she's doing pretty awesome. We have to give meds through her J port if we want them to be absorbed in any reasonable amount of time and if we don't want them to end up getting drained back out of her G port. By the time we do her meds and flush the J with enough water to not clog it, we've pushed in about 20 minutes' worth of fluid within a couple minutes. I go as slowly as I can, but I can only go so slow. It usually makes her not feel good for a few minutes. As crappy as the situation is, she has gotten a lot better at telling me when she is having visceral pain. It's horrible to high five my 4 year old for telling me that her stomach hurts and she needs a Farrell bag plugged into her G port, but I have been so proud of her for learning how to express that she is feeling pain, and ask for something that she thinks will make her feel better. She is also starting to use more phrases than just "my tummy hurts" to tell us how she's feeling. She will now tell us that she's full, that her tummy hurts because she's hungry, and that her tummy just hurts. Just those breakthroughs in communication alone are huge, and we can continue to build on that to help her get better at expressing how she is really feeling, both physically and emotionally. So yes, I still believe that things will get better and she will eventually not need a feeding tube anymore, but I have realized and am working on accepting the reality that she may not. Acceptance is a good thing.


 Part 2:
We are now fast approaching Raya's elementary school years, and although the medical issues are still significant (and worse than I had once thought they'd be by this point) they are not the only thing we are dealing with. There are other problems that I have occasionally mentioned briefly, but have mostly kept private. It's a lot easier to talk about things that are purely medical in nature because there is less room for judgement and stigmas. Behavioral and mental health issues are a different ballgame. (for the record, I hate the word "behavioral" because it implies misbehavior, but that's not what "behavioral health" means) There are stigmas attached to mental & behavioral health issues, whether the world wants to agree with me on that or not. I also don't want Raya to look back and be embarrassed by what I have shared. Not that she has a reason to be. Nothing she has been through, whether physical, emotional, behavioral, or anything else, has been her fault, nor is it the result of a naughty child or bad parenting. So no matter what I say, do not judge my daughter, and do not judge us as parents. Period. The other thing that makes sharing some of this difficult is that nearly every time I have tried to talk about it with anyone, my concerns are brushed off as typical age-appropriate behavior and either they don't understand or aren't willing to acknowledge that it is not. It is frustrating and disheartening and makes it difficult to want to talk about certain things when you feel like the people you are going to for support are downplaying the concerns you have. I have been deeply grateful for the select few that have not done that to me, and I have learned a valuable lesson from the experience.

So the next chapter of our story is that we are to a point of needing to address the source of Raya's sleep difficulties, and the source of her difficulty with attention span, focus, and self-distraction. I should say sources, not source, because as with everything else, there are multiple factors involved. Shortly after she turned 3, I took her to see a developmental pediatrician. I really had no idea why we were sent there, I just took her because her other doctors told me I should. What came of that appointment was that Raya was having anxiety that was affecting her ability to function in other areas of her life, like going to sleep on her own for naps or at night. She suggested a few things and told me that if I ever felt like I needed to come back for any reason, that we were welcome to come see her again. I really didn't think we'd ever need to go back but some things have changed for the worse over the summer and when we saw the neurologist a couple weeks ago, she suggested seeing the developmental pediatrician again.

Raya has a hard time focusing. She has a hard time sitting still. She finds ways to distract herself whenever she's faced with anything she doesn't want to deal with, big or small, and she takes selective hearing to a whole new level. She's fidgety. She's constantly on the go. She gets more and more wound up as the day goes on, and by about 4:00 in the evening, she is bouncing off the walls. Her body gets worn out and exhausted but her mind just gets more and more alert and won't stop. And while many of these things are common among 4 year olds, the degree to which they affect her is not. (Let's not forget that I have had 3 other 4 year olds, and I know what typical 4 year old behavior looks like.) It's not normal or acceptable for a 4 year old to be able to stay awake until 4:30 in the morning. It's not even normal or acceptable for a 4 year old to willingly go to bed at 7:00 and then lay in bed for 2 or 3 hours, unable to fall asleep. (and no, melatonin doesn't work for her) When we go to any doctor's office other than her GI doctor, she gets anxiety. Last week, she had such awful anxiety over knowing that we were going in for a blood draw after her therapy appointment that she threw up during therapy for the first time in probably 3 1/2 years. When we go to some appointments, she pulls the shade on the stroller down as far as it will go and curls up in a ball in the stroller, and sometimes even refuses to come out during the appointment. All of those things are becoming greater concerns as she gets older and we are not seeing improvement. If she is going to be successful in school as she starts full-day kindergarten next year and beyond, we really need to address all of these issues.

The reason we went back to the developmental ped this week is because we have seen a decrease in Raya's ability to focus and pay attention to things. (I hate to use the word "regression" but basically yeah.) We used to be able to give her 3 part instructions and she would follow them. Now we give her a single task to do and have to remind her several times of what she's supposed to be doing. These are not complex tasks either. They're things like putting her shoes on the shoe shelf after we get home from school. When I say she has a hard time holding still or sitting still, I mean she can NOT hold still for more than a few seconds at a time. She is constantly in motion. After discussing all of my concerns with the developmental ped and going through some testing with Raya, she has concluded that Raya does not have ADHD. It is more likely that her issues are related to anxiety and GI discomfort, and the lack of good quality sleep on a consistent basis. She was happy to hear that we have an appointment coming up next week with the sleep specialist, and also suggested that we get in touch with a counselor or psychologist to evaluate Raya and help us address her anxiety. I am still playing phone tag with people about the behavioral health part but I am looking forward to the sleep specialist appointment. It's something we probably should have done sooner. I feel like at the moment, we have a great band-aid solution in the sleep medication we're using, but if there is another way to address whatever is causing her to have difficulty going to sleep and difficulty staying asleep, then by all means, bring it on.

Now I feel like I'm just rambling, but the point is that there has been a lot of heavy stuff weighing on my mind & heart lately. Being a parent is hard. Being the parent of a child with so many complex issues is hard in a different way. And now, before I fall asleep at the computer, it's time to go pulse some seltzer water through her partially clogged J port, pump another bottle for Piper, give Raya her night meds, watch her sleep for a few minutes so I can marvel at how relaxed and still she is, get some decorations up for Kaida's birthday tomorrow, and then take a 2-3 hour nap until the feeding pump beeps. Hard or not, I love my life and I am grateful for every one of our kids and all of the lessons they each have taught me, and the ways that each of them enrich my life.

Saturday, August 23, 2014

A miracle we all take for granted

I tried to think of some grand way to preface this post that would do justice to how I'm feeling but I'm drawing a blank. Instead, I will just show you a picture of the everyday, ordinary, but still extraordinary miracle that happened at our house this week.
First solid food, 8-22-14



This was how my last 2 babies felt about eating solid food:

Kaida:
video

And Raya:
video

Piper is completely and totally the opposite. She could not WAIT for me to put that spoon in her mouth! It was a momentous occasion for both of us. I waited until the kids were all at school so that it was nice and quiet with no distractions. One reason for that was that I wanted it to go well and start off on the right foot, and I knew having the other kids around would make it harder. The other reason was that I really wanted to have the experience of feeding her her first solid food to myself. I admit, that was a little selfish of me, but having been robbed of the joy that I now realize can be found in having a baby willingly and successfully eat baby food, I needed that. I also didn't want anybody else to see me cry over my baby eating food. :)



As is the case on most occasions, I took a lot of pictures. It might just be because it has been SO many years since I have fed a baby that didn't have any problems with eating, but I thought Piper did amazingly well. I expected it to be much more messy. I also realized that we own a grand total of 2 bibs. Either that or I have managed to misplace all of our bibs, which is also quite possible since it's been so long since we've needed them. Anyway, here are a few of the pictures I took:
 
 
 
 






Wednesday, August 20, 2014

lots of updates. and some late-night emotional ramblings.

I didn't mean to go this long without updating but it's been a really busy couple of weeks. The kind of busy where as soon as I wake up in the morning, all I can think about is the fact that I already want a nap and I know I'm not going to get one.

So we've had a lot of appointments and we have more coming up. Last Wednesday, we saw Raya's neuro. But first, we waited for a long time. While we waited, Raya's anxiety level got higher and higher and higher. I ran out of tricks to amuse her with so I let her take selfies with my phone. There are about 75 of these gems on my memory card now:
Each time she took a picture and it popped up on the screen, she let out a loud, cackling belly laugh. She has the best laugh!

To put it briefly, the appointment went fine but wasn't the most feel-good, validating appointment. It's resident season. We've had residents shadowing specialists & I've felt like a lot of the attention is focused on explaining things to the resident rather than discussing things with me. That sounds so self-absorbed but really, the point of taking her to specialist appointments is so that I can tell the doctors what's going on, they can examine her, and then give me feedback. Suffice it to say, I miss our old neuro. I like the new one, but there is just something comforting about seeing a doctor that you've seen for your child's whole life.

This time, Raya actually got out of the stroller during the appointment. She still didn't really want much to do with the doctor but she was happy and friendly as opposed to being frowny and hiding all curled up in a ball in the stroller. She did that for a little while too, but that was before the selfie session that got her all giddy & silly.

She is getting too big for that stroller, which is a bummer. I'm not sure what we're going to do because we need to have a stroller she can fit in, but she's getting to the upper limits of what most strollers are made for. We're also getting to the point where people look at my 4 1/2 year old sitting in a stroller while I'm wearing the 6 month old and wondering why my able-bodied daughter isn't walking. When we walked back to get Raya's vitals, the MA (who we've known since Raya was a baby) said, "Raya, why are you in that stroller? Why aren't you walking?" She didn't mean anything by it but the walk from the 3rd floor of the parking garage, through one building, and to the 3rd floor of another building when it's over 100 degrees outside and she's wearing a 5 pound feeding pump backpack is a little much.


Back to neuro. The neuro that diagnosed her with CP at the age of 11 mos was right when she predicted that by the time Raya was about 7 or 8, it would be hard to see any visible signs of CP. The muscle tone issues she had then are pretty much resolved. Her hyperreflexia is not what it used to be either. (that's a good thing) She still has weakness in her trunk but she's doing great overall.

The best thing that came out of the appointment was a referral to a different neuro in the same practice who is also a sleep specialist. Raya NEEEEEEEDS a sleep specialist. Right now we have an awesome band-aid solution to her problem but I want to dig deeper and find out why she can't sleep without sleep meds, and why she can't stay asleep at night. I can count on one or two hands the number of times in her life that she's slept through an entire night without getting out of her bed and without waking up. When they called me to schedule the sleep specialist appointment, they also emailed me a 10 page intake questionnaire. I haven't filled it out yet but just reading over it, I am feeling completely validated in taking her to see a sleep specialist based on how many questions I'm going to have to mark "yes" to. She's a hot mess on paper.


Friday was Piper's turn for an appointment. She turned 6 months old last week (don't even get me started on how fast her babyhood is flying by or I will cry) so she had her 6 month well-check. I have to say that after having Raya and Kaida (who didn't see specialists but had weight checks every 2-4 weeks her first 18-ish months) it is the strangest feeling to have only taken her to the doctor 4 times in 6 months. She's been to more of Raya's doctor appointments than she's been to for herself.

We picked Raya up from school and went straight to the ped's office for Piper's appointment. It was hot and Raya was feeling pretty blah. She had worn a little backpack with a Farrell bag in it to drain her stomach while she was at school because she was having a bad stomach day. While we sat in the exam room, I got her pump set up and started her feed and she passed the time by having her doctor anxiety. She was crabby anyway but the anxiety of being in a doctor's office made it even worse, as evidenced by this picture, which is undoubtedly the best stink face picture I've ever gotten of her:

Words cannot explain how much I love that picture, and that little stink face. While I do expect her to be respectful when we're at appointments, I also understand that having to go to the doctor as often as she does is kind of sucky and not at all what a 4 year old wants to do, and I'm okay with her expressing her disdain. Here's the thing. She has major doctor's office anxiety, but then at the same time she gets all jealous when the appointment is not for her and the doctor is talking to somebody else. She has a hard time understanding that not all appointments are about her.

Piper is doing great. (I can finally say that without feeling like the other shoe is going to drop once it's out of my mouth.) Just for kicks, I looked up what all of the kids weighed at their 6 month well-checks. Ashtyn and Cole both weighed 15 lbs 4 oz. and Raya was right behind them at 15 lbs 3 oz. Piper weighed 14 lbs 15 oz, so she's the smallest out of the 4 of them by a few ounces. I find that amusing since every time somebody looks at her, they comment on how big she is. She's in the 25th percentile just like the rest of them and is still in some of her 0-3 month clothes and comfortably into 3-6 month clothes. Kaida was our little outlier and weighed a whopping 11 lbs 2 oz at her 6 month check-up. Bless her heart, she was just itty bitty.

Piper handled her shots like a champ and took a nice nap when we got home. She's pretty awesome like that. I am so incredibly thankful for that sweet girl. I'd be going insane if I had to deal with Raya AND Piper waking up. She's such a good-natured, calm baby and I just love her!
I don't remember exact timelines with all of the kids but I'm pretty sure she's going to be our latest crawler. She's just not in any hurry to get mobile, which is totally fine with me. She's not really delayed, but she's on the low end of normal as far as meeting her developmental milestones. She has recently discovered how much fun her feet are to play with and I think the fact that she's so good natured and such a content baby is the reason she's not in any hurry to move around.


This week's appointments have been pretty exhausting so far. We had 3 on Tuesday, starting with OT. I had told Raya that morning that we were going to OT, then we were going to get labs drawn (i.e. get a poke), and then to an appointment for me. Halfway through OT, she started to look a little queasy and then she vomited fluorescent yellow bile into the garbage can even though she was plugged into a drain bag. That was a bummer. It kind of freaked out her OT and that was the end of her session.

After that, we went over to the clinic to do bloodwork for both neuro and allergy. That wasn't fun. Because of what the neuro labs were, the phlebotomist couldn't use a tourniquet on her arm since that can damage blood cells. (it was carnitine, lactic acid, and one other one that I can't remember at the moment) Then there were the 4 vials for the CBC and immunoglobulin labs, so 6 vials total.  Raya tried really hard to be calm and brave but it was just too hard. She was on my lap like we always do for blood draws and at first, it seemed like we were going to be okay without an extra person helping hold her still but we had to bring somebody else in. That little girl is insanely strong. She's a tough stick and the lady was afraid she wasn't going to be able to get a good vein without a tourniquet but she got it in perfectly on the first stick. Once the needle was in, I got Raya to take some deep breaths and relax and the ladies were able to distract her and get her to talk to them. Before they were even halfway through, she was laughing and joking with them and told us that the poke didn't even hurt. She is such an awesome kid. When she got done, the lady put a pretty bow made out of coban on top of the coban wrapped around her arm and her GI nurse took her to the special secret prize box. She got over it pretty quickly and was delightful the rest of the afternoon.

Interestingly enough, once the labs were done, her stomach felt a lot better. I am convinced that it was anxiety over knowing she was getting a poke that made her vomit at therapy. I don't know how to help her with that but we are seeing the developmental pediatrician on Monday and hopefully she can give me some suggestions.

After the lab work was done, we headed outside into the windy, stormy weather and drove across town to my ENT appointment. Raya chatted up everybody in the waiting room while I changed Piper's blowout (thank heavens for a stroller that's big enough to do that in!). We didn't have to wait very long for the doctor to come in, and that was much appreciated. The girls were behaving well, thanks to a full bottle and the iPad.

The appointment was pretty disappointing but it went smoothly. It's super fun to go to an appointment and be told that there's nothing anybody can do and you're just going to have to live with the problem. The good news is that I'm not losing my hearing. I liked the doctor, I just wish she could have done something for me. The best part of the whole thing was 10 minutes of sitting in a glorious little soundproof booth by myself with headphones on doing hearing tests & ear pressure tests. If they would have let me curl up in that booth with a pillow and blanket, I would have been a happy girl. I couldn't help but laugh because the whole time I was sitting in the booth, Raya was chattering away at the audiologist. I could hear her through the soundproof booth. I wish I had a picture!


Kaida has had a rough couple of weeks too. She's struggled with her own GI issues since she was about a year old, and stressful things like starting a new school year always seem to throw her for a loop. We were working on cleaning her out over the weekend and when she's not feeling great, she gets emotional & moody. We had a family birthday party for Kaida and my niece on Sunday and within about 10 minutes of being there, my sister-in-law had surprised Kaida by popping out her first loose tooth. There were lots of tears but eventually she was happy about it and the tooth fairy brought her $2 in quarters.


Today's appointment was kind of a downer for me. It was kind of the perfect storm. I was up way too many times last night between having Piper wake up, the feeding pump beep, and then having Kaida get all croupy and work herself into a vomiting panic. I felt really bad for her because it was a scary feeling for her. Ashtyn got her into the bathroom at 1:30 and got things cleaned up while I took care of Kaida. Ashtyn really is a gem. I would be lost without her. She went back to bed and I set up a breathing treatment for Kaida. She and I slept in the living room so I could keep an eye on her and hear her to make sure she was still breathing and all. Go figure, the one time I loan out my pulse ox.

This morning, she had absolutely zero voice and was pretty exhausted so I couldn't send her to school like that. I really didn't want to take her with me to Raya's GI appointment but I couldn't find anybody that could either come and sit with her for an hour between when I needed to leave and when the big kids came home from school or else have her come to their house, so she had to come with us. I hate having to ask for help, and I realized today that part of the reason I don't like asking people to help is that when I can't find someone to help me, it feels like rejection. I shouldn't feel that way, I know, but that makes it even harder to want to ask anybody to do anything for me. It's easier to just figure out a way to do things myself, so that's what I usually end up doing. Thankfully she was feeling good this afternoon, she just couldn't speak above a quiet whisper.

Anyway, this appointment was kind of sucky. First of all, I usually do GI appointments in the morning because doctors tend to be running on schedule in the morning and not so much in the afternoon. We weren't supposed to see her until next week but she's going to be out of the office the day we were scheduled for so they called me and moved it to today at 2:40pm. We got there at 2:25, checked in, and waited. I don't remember how long we were in the waiting room before we got taken back to an exam room, but our scheduled appointment time was 2:40 and the doctor walked into the room at 3:45. 'Nuff said. I am surprisingly patient when it comes to doctors running late. Or maybe just too tired to care today. Kaida had brought the portable DVD player and was watching Annie. Piper was in the car seat drinking a bottle, then playing with her feet and her moose toy that she loves so much and just being happy. Gosh I love her. Raya was being Raya. Busy, loud, rowdy, whiny, silly, and just Raya. By the time the doctor came in, I really just wanted to lock someone else in a tiny room with my kids for an hour and see how they felt. Not that my kids are naughty or anything. They were actually extremely well behaved considering, but it was still exhausting.

The good news is that she has gained weight. She's FINALLY up from 16.1 kg (35 lbs 8 oz) to 16.5 kg (36 lbs 6 oz). She has also grown 1.5cm since her last visit about 6 weeks ago. We're pretty excited about both of those numbers. The other good news is that she is tolerating the J feeds really well. Her doctor was pretty shocked when I told her that we're up to 97ml/hour. We had been stuck at 75ml/hour into her stomach for about 3 1/2 months when we switched back to the GJ tube so having her all the way to 97ml/hour is a huge improvement.

The bad news is that aside from buying her a little extra time off the pump each day, the GJ isn't doing her a lot of favors. We're keeping it for now because she's doing so well with the J feeds, but the way things are going now is not what I had hoped (or wishfully thought) that it would do for her. We talked again about traveling out of state for repeat motility testing. We had hoped to go to Denver but the guy we were hoping to see there is leaving so he's not taking on any new motility cases. Our next options are Boston and CHLA in Los Angeles. Either place would be fine with me. Her GI is going to contact the motility specialist she knows at Boston and see if she thinks it would be worth the effort & expense for us to come out there for testing. At this point, I'm torn about that.

On one hand, it's been almost 4 years since she had motility testing done. Maybe now that she's older, the test results would show more of what's going on with her and give us a better understanding of how her body is working. Or not. It could turn out to be a complete waste of time and tell us nothing. Last time I flew across the country with her for testing, all we came away with was the knowledge that even though we KNEW something was wrong, the testing showed us that her body was capable of functioning in "near normal range". Even though she was forcefully vomiting anywhere from 4-10 times a day every single day even with a GJ tube and her G port on constant drainage and we knew she could vomit things several hours after they shouldn't have been in her stomach anymore, the testing showed near normal function and the specialist's only advice was to try Periactin and to get her off the GJ tube. Emotionally and mentally, I'm not sure if I can handle going through all of the testing (which is exhausting in every way) and then face the enormous let-down of being told things are normal even though we know they are not. Like I told the GI today though, I am at a point where I just want to know if things are as good as they're going to get. Is this her status quo now? At what point do I just accept that her stomach sucks and she's going to be tube fed indefinitely instead of holding out what seems more and more like unrealistic hope that she'll be off the tube within a couple years? I don't know if a motility specialist can answer those questions for me. Probably not, but it might be worth a try again.

The mental and emotional exhaustion of all of this is one aspect of having a medically complex child that is extremely difficult to explain to people. It's easy enough for people to imagine that having a feeding tube comes along with physical challenges, but the emotional side of it is not something that occurs to people unless they have some reason to see it. (meaning I unload on them, which I rarely ever do and it's usually only to select people that I know will understand) Other parents of 4 year old girls are agonizing over what school they're going to send their daughters to for kindergarten next year. I'm agonizing over whether or not to drag her across the country and subject her to a lot of tests that quite frankly really suck and will undoubtedly add to her anxiety about medical procedures & doctors. I'm agonizing over how I'm going to be able to trust the staff at her school next year to handle her tube feeds at school without being power trippy about it or screwing anything up. I know I shouldn't be, but I'm agonizing already about which teacher she will end up with, and if I'm going to have to butt heads with anybody to keep her out of the class that I am afraid she will end up in. I'm agonizing over whether I should be feeding my child into her stomach or skipping it and feeding her into her intestine, even though it seems to mean causing her stomach issues to get worse. That is a horrible thing to have to worry about! Sometimes I just want to be her mom, not her doctor, therapist, nurse, chauffeur, secretary, advocate, and all that other stuff! Just for one freaking day, can I not have to mix up 45 ounces of special medical formula, pour it into a pump, squirt medications into her intestine at 4 different times, plug her in to the pump, drain bile out of her stomach, measure the bile so I know how much fluids to replace, beg her to lick a peach or kiss a potato chip just so I can console myself with the knowledge that she at least interacted with food that day, and wash her bedding when diapers can't hold in all the pee because of how much fluids she's getting at night? Can she just have a one day pass from her food allergies, gastroparesis, abdominal pain, and aversion to eating and have one whole day where she can run around and play like a normal kid without having to wear a feeding pump all day? Where I can just make her a PB & J for lunch and have her sit at the table and eat a big ol' plateful of whatever the rest of us are eating and then not wake up miserable in the middle of the night because of it? I am just so sick of all of this right now. I try not to complain because I know that things could be so much worse, and I have so many friends whose kids DO have it so much worse, but this still sucks. I am normally at peace with all of it. This is what we've been doing since she was 2 months old so we are most definitely used to it, but today I'm just done.

I don't know why it is hitting me so hard today but I think it's because while we were sitting in the exam room today, I had plenty of time to let my mind wander. She was sitting on the bench in her hospital gown (aka the blue astronaut girl dress. we have to call it that or she won't put it on) and I noticed a scar on her ankle. I told her it was a scar from an IV and then pointed to one on the other foot that was also an IV scar. That got me thinking about her scars, and how someday she will have a big fat G tube scar on her belly. But then I had a thought that I haven't entertained before. I pictured her as an adult. It's strange to picture your children as adults. I have always operated on the assumption that all of these issues will resolve at some point and she will eventually have a GI tract that functions normally and grow up to lead a normal life. But what if she doesn't. That's the thought I had today that I realized I'd never entertained. I've heard a lot of my friends talk about not allowing themselves to think too far into the future, but their kids have been diagnosed with serious, long-term conditions. Raya hasn't. She's really not been diagnosed with anything. The things she's been diagnosed with are just symptoms. Until today, I had never thought about the possibility that she may not ever get off the G tube and could struggle her whole life with the same issues she struggles with now. As a teenager, when there is so much emphasis on appearance, will she be able to have a healthy relationship with food? Will having a feeding tube (or optimistically, a feeding tube scar) affect her body image or her ability to have her own family someday? I won't get into detail about all the thoughts that have flooded my mind all afternoon & evening, but suffice it to say that it's been an emotionally draining day for me. Lest anyone should think I'm being negative or pessimistic about her future, don't even go there. I'm not. My heart is just hurting today as I'm realizing that a "normal" body with "normal" digestion may never be in her future. It was easy to ignore that when she was a baby, but she's turning 5 in a couple months. She will be in elementary school next year. She's not a baby anymore. This is not going to just go away.

So there's another glimpse into the mind of a medically complex child's mom. I actually feel a little bit better now. Anyway, between having a frank discussion with the GI about the fact that there may not be anything that anybody can do for Raya and having the appointment be really rushed because she was an hour behind schedule and had a resident tagging along with her, I left that appointment feeling kind of crappy and with a headache. Then I came home and we scrambled to get dinner thrown at everybody and get the house cleaned up before the cub scouts came over, and then I went to the church to take all the old stuff off the bulletin board (which I should have done months ago but haven't) and went to the grocery store for eggs & almond milk. On my way home, I picked up some food for Donny and myself and got a big fat cherry-vanilla Coke. I rarely ever drink pop and I never buy drinks when I get food, but I had a headache that only a caffeinated beverage would fix. I am so happy that tomorrow is Thursday and we don't have any more appointments until Monday.












Monday, August 11, 2014

Floundering

Floundering. I like that word. Mostly because it's a kind of fish, and I like fish, but also because it's a pretty good description of how I feel about trying to deal with Raya's medical issues. In the last 4 1/2 years of tube feeding, I have become somewhat of an expert on feeding Raya. I have learned what to expect from her body and I've gotten pretty good at managing the day-to-day stuff. What I have not yet figured out how to do is align my expectations with reality. It's hard to do that when you have no idea what reality is going to be on a long-term basis.

How long do we continue to do the same things we've been doing? I have always hoped and believed that we will at some point be able to get Raya to a point where she can eat and drink enough to not need the tube anymore. What if that's not what her body is capable of though? And how long do we wait? At what point do we accept that tube feeding will be a long-term thing for her, and how long is long-term anyway?

*sigh* I just don't know what to think anymore. We do things for a while and may or may not see positive changes. Things stagnate so we try something new. Sometimes it makes me feel like we're making progress. In some ways, she's made huge progress. The most notable thing on that list is that she doesn't vomit a few times a day anymore. In the grand scheme of things though, we still have a child who does not eat more than a few calories a day (and usually zero), doesn't care if she ever eats or not, is allergic to a lot of difficult to avoid foods, can't tolerate more than a couple ounces per hour of food or formula in her stomach, and would starve to death pretty quickly without the feeding tube. (yeah, that's the harsh reality of it) How long will it be before things start to work better and/or she learns how to work around her body's physical limitations?

So I'm floundering. Do we bother with another round of out-of-state motility testing? When we did it before, I had such high hopes going into it and although I am glad we did the testing, the results did not give me what I wanted. Answers. What I got was someone telling me that her digestive system was functioning in "near-normal range". They said that even though her symptoms said otherwise, the test results said that her stomach worked fine and we should get her off the GJ tube and back to gastric feeds, which we did. They pretty much told us there was nothing they could do for us. Does that mean that we just keep managing the day-to-day stuff and hope for some day in the future when her digestive system will work better? Now that we're 3 1/2 years down the road and not really much better off, would it be worth the trouble, the expense, the time, and the physical and emotional exhaustion of traveling somewhere else in the country just to do some tests that might give us results that are as disappointing as the last ones? Or maybe this time around, things would be different. Now that we've seen her body at its best and then seen things go backwards to where we are now, do we have enough information to help a motility specialist better identify where her problems lie and maybe come up with new ideas of how to help her? I don't know. Even if we do motility testing and they do actually identify the location or source of her problems, what is there for anybody to do about it?

We thought we had a new place to go for motility testing, but now we've found out that the doctor we wanted to see is not accepting any new motility cases and is leaving his current location this fall. It's not the end of the world but it means that instead of a 6-8 hour drive or a 1 or 2 hour flight, we may have to hop a plane and fly clear to the east coast instead. Just thinking about it makes me tired.

Maybe I'm not doing enough praying and studying. Maybe I'm being too stubborn to see things differently. Maybe the timing isn't right, or maybe we're on the right track and we just need to be patient for a few more years. Usually I'm fine with the way things are, but right now I'm just having a hard time with not knowing what to expect in the long term. If this is as good as things will ever get for her, I can live with that, but if there's something that can be done to improve her quality of life, I would do it in a heartbeat. The problem is that I just don't know. Not only do I not know, but I have not even the slightest guess. I have hope that things will get better for her, and I believe that it's possible that she might someday be able to eat & drink enough on her own to not need to use her tube anymore, but I just want to know how to fix this for her. This is harder than cleaning up puke & poop. I just wish I could get some answers to my unanswered questions.

In the mean time, I will just keep doing what I can and counting my blessings that she is mine.



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