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**Disclaimer**

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


Tuesday, July 30, 2013

Last week of summer break

Our summer break is winding down. Wish I could say the same for summer but that will be hanging around until late October. :) Towards the end of the school year I saw an article online by a tired mom who talked about feeling like she was limping across the school year finish line. Sadly, that's how I feel about summer break. We have a short summer break here but we've been at home all summer and it's to got to play outside. We have the same kind of cabin fever that people in other climates have in the winter. We all love each other dearly but I think we're all ready for school to start. (except I've really enjoyed not having to get out of bed by any particular time in the morning...) We have a busy couple of days ahead of us. We have a meeting with Raya's teacher tomorrow to go over all of her medical needs. The theme of the meeting will lean heavily on emphasizing the importance of not having her do crafts or activities with food and not letting her eat anything I haven't sent in with her. I don't anticipate trouble with her G tube feeds at school because they won't have to touch her pump at all unless it beeps. (infinity pumps never beep at inconvenient times, right??) My biggest classroom concerns are Raya coming in contact with food she's allergic to and how they will handle an accidental g tube pull-out if it ever happens. As long as we see eye to eye on those two things, I think we'll have a good year. On Thursday, we're meeting with the new health aide from the new school, and some other members of the district health office. I'm not sure who all will be attending other than the district health supervisor and their respiratory tech. As a patent, you never know exactly what to expect from meetings like this and all you can do is be ridiculously, overly prepared. I will have handouts for everybody. I also picked up the stack of medical forms that they want filled out & signed by doctors and returned on Monday so we'll see if I can pull that off. There has to be a better way to get all this paperwork done than parents having to chase it down and scramble to get busy specialists to sign it by the first day of school but nobody has thought of one yet. We took what is probably our last swim of summer break today. The kids love swimming and we had the pool to ourselves.


This girl got worn out and had to try hard to stay awake long enough to eat her French fries. It was her first fries since January so she was really excited about them. She was so tired that she fell asleep with her backpack on while the kids watched Pink Panther cartons. (they think it's the funniest show ever. I don't get it.)
 

Tuesday, July 23, 2013

An insurance vent.

I will preface this by saying something that I've said countless times before. I am beyond grateful for health insurance and for the very generous coverage we have been blessed with in the past 3+ years since Raya was born. In her first year of life, she racked up about a quarter of a million in insurance claims and goodness knows how much the last 2 1/2 years have tacked onto that amount. For the first 15 months (before she was able to get secondary insurance) we had a sizeable amount of out-of-pocket expenses that kind of sealed the deal with us having to sell our house that year, but even so, we have been incredibly blessed with good insurance coverage and we are very, very, very grateful for that.

That being said, insurance red tape is so unbelievably frustrating sometimes. I had kind of moved on from our unpleasant experience at the hospital with Raya's pyloric botox injections getting canceled at the very last second (and very early in the morning). Then we got the official denial letter in the mail from the insurance company and now I'm mad again. Here's what the official letter says:

After review, _______ has made a decision about coverage for the following health care services for the member named above. ______ uses nationally recognized clinical guidelines and resources...(website reference to clinical bulletins) to support these coverage decisions.

Coverage decision for: 07/12/13-07/12/14: J0585 Injection, onabotulinumtoxina, 1 unit 6 times

Coverage for this service has been denied for the following reason: We have reviewed information received about the member's condition and specific circumstances using _____'s clinical policy bulletin: Botulinum Toxin. Based on this review, coverage for botulinum toxin for injection into the pylorus is denied because there is not sufficient outcome data available from controlled clinical trials published in peer-reviewed medical literature to substantiate its safety and effectiveness in the treatment of the member's condition. Therefore, this service is considered experimental or investigational and not covered under the terms of the plan.

(Experimental/Investigational Denial) This coverage denial was based on the terms of your benefit plan. Your plan does not cover experimental or investigational services except under certain conditions. Please see the reference to experimental or investigational services listed in the Exclusions section of your benefit booklet/handbook.

*DEEP BREATH* Ok. This makes me angry for many reasons. First and foremost, I don't feel like the insurance company asked enough questions. Of course I have no idea what really went on behind the scenes when the decision was made. I went to the website referenced in the letter and looked up their clinical policy bulletin on botulinum toxin, which says that it's considered experimental for pylorospasm. To my knowledge (which may not necessarily be the case) Raya has never been given the diagnosis code of pylorospasm, but I suppose that may have been how the procedure was coded. (I do need to call the insurance company and ask for the codes that were used for everything.) In fairness, going down the list of approved uses for botox, I really don't see anything that fits Raya's circumstances, but all they had to do was talk to the GI doctor or talk to the GI nurse and actually get someone to explain the treatment to them. Just because it's not on their current approved list doesn't mean that the treatment is not potentially safe or effective. Sheesh, all they had to do was call ME and I could have explained to them why botox would be a beneficial treatment, especially as opposed to doing a surgery instead!

This is another reason why it really bothers me that it was denied. We have a little friend who sees another GI at the same practice and has the same insurance company. A few weeks ago, she had the SAME procedure done and the SAME insurance company authorized the pyloric botox injections for her. How can it not be deemed experimental or investigational for one child with delayed gastric emptying but then denied for another child with delayed gastric emptying with the same insurance company?? I don't understand it. (and for the record, it seems to have been very helpful for the other child...)

And another reason why their denial bothers me. Assuming they actually HAVE paid attention to her medical history, as they claim to when they say they've "reviewed information received about the member's condition and specific circumstances," they must know that it's costing them a lot of money every month for her to be 75-90% dependent on a feeding tube and hypoallergenic formula. They must know that we have done many, many other things to try and help her, and yet they must know that she is still very much dependent on her feeding tube. Doesn't it make more sense to TRY to do something that would potentially allow her stomach to handle a larger volume of food and function more normally and MAYBE get her on the road to getting off of her very expensive feeding tube supplies at a FRACTION of the cost of continuing to have her dependent on those supplies?

Along those same lines, we basically have 3 options at this point. First was the botox and we now know how that worked out for us. Second is to do a surgical pyloroplasty to enlarge the opening of her pylorus so that food would pass quickly and easily from her stomach to her small intestine. It is much more invasive and (in my opinion) carries more risk than at least TRYING the botox. It is not reversible and could cause dumping syndrome. The third option is to do nothing. Sit around and wait some more to see if her stomach just fixes itself someday. I know I have somewhat of a pessimistic view when it comes to the idea of waiting for her to "grow out of it" but I have watched her at feeding therapy (where she does her best eating) and I have seen her reflux, spit up, and vomit because she ate too much or drank too much too fast. Until last fall, she wasn't as bad as she is now so based on seeing her regress physiologically with how much her stomach can handle, I don't feel very optimistic about her body just fixing itself. It has NEVER just fixed itself and she has never just grown out of anything. Every bit of progress she has made has been worked for, medicated, tube fed, and therapied for, so yeah, it's hard for me to see how it can just magically change and hard for me to feel good about just sitting by and watching her struggle with food that her body has a hard time processing. And let's not forget that she does carry a diagnosis of cerebral palsy, which is a muscle/movement disorder. Who's to say that her gut problems don't at least have SOME root in that diagnosis??

It bothers me that an insurance company would rather pay for an invasive surgery that may have expensive long-term effects or continue to pay for enteral feeding supplies indefinitely than pay for a treatment that could potentially be helpful with less side effects and move us towards reducing the tube dependency. It also bothers me that unless her doctor can convince them to cover it, I am put in the position of either having to spend hours doing research, gathering records, making phone calls, and writing letters to fight through an appeals process or give up and go with one of the other {crappy} options. And how would that make me feel about myself as a mother to not go through the appeals process because it's too hard and I don't want to do it? I think anyone who has ever been through an insurance appeals process can understand that feeling. 

Appeals take a minimum of 30 days but can take a minimum of 60 depending on the claim, which is 30-60 days that Raya gets to keep experiencing belly pain when she eats or drinks too much, not eat after 5 or 6pm without waking up in pain later at night, and not have progress towards being less dependent on the feeding tube. Insurance companies make it SO HARD to argue with them. You can't just call the company and explain your position and expect for anything to happen. There are hoops upon hoops upon hoops to jump through. You can't ever talk to the same person twice, and every person you talk to will give you a slightly different story. You file your appeal and then twiddle your thumbs for a month or two while it sits on somebody's desk, and if you happen to catch them on the right day, maybe your appeal gets accepted. I've never been so lucky with appeals though. {this is not my first denial/appeals rodeo}

Part of me thinks, what's the big deal with waiting another month or two for an appeal when we've already gotten 3 1/2 years into tube feeding. The other part of me gets very impatient and bothered by the feeling that we are not important to them, my daughter's health & quality of life are not important to them, and the insurance company is the all-powerful being that has the final say in whatever happens with her (unless we want to pay out-of-pocket). That is not a good feeling. Common sense and compassion do not seem to exist within the walls of insurance companies and sometimes even the IDEA of fighting with them is exhausting. But I'm a medical mom and that was probably written somewhere in the microscopic fine print of my job description. Tomorrow I will call the pharmacy to refill her prescriptions, call the home health company to order her supplies, and call both of her insurance companies to get as many details about their denials as I can, try to get in touch with the nurse and see if anything has happened between the doctor and insurance, and we'll go from there.

(And I might take another crack at giving her Periactin for increased gastric emptying & appetite stimulation. We haven't used it for a while and I'm curious how she might do with it now that she's a little older.)

And on a little side note, when I was reading through the list of approved and non-approved uses for botulinum toxin, I was absolutely blown away by all of the amazing medical applications for BOTULISM. Who would have guessed that a toxin could be so beneficial? God put that toxin on this earth and put it in front of brilliant scientists who saw its potential for good and developed it into something USEFUL. God is amazing, Botox is amazing, and I only hope that someday insurance companies will see its potential and let people like Raya at least try it.

And now I will go eat ice cream.

Saturday, July 20, 2013

Applesauce

Another week has come and gone and summer break is slowly winding down. The first time I ever saw that Office Max commercial (or is it Staples??) with the parents doing the back-to-school shopping while the song "It's the most wonderful time of the year" plays in the background, I thought it was kind of mean. I get it now. Don't get me wrong, I love my kids and I love having them home and I love not having to get up and get everybody ready for school in the morning, but yeah, I get it.

Therapy appointments are a little harder when everybody has to tag along. For Raya's OT appointment on Tuesday, she went back with her therapist by herself and the rest of us sat in the waiting room until she was done. It wasn't pleasant thanks to one darling but crabby child. For feeding therapy, I can't stay in the waiting room so all the kids got to come to the teeny tiny little feeding room with us. In the hustle and bustle of getting everybody ready and out the door on time, I walked off without Raya's food for her appointment. Thankfully, the clinic has a cupboard full of applesauce and so we decided that Raya could add apples for her new food this week.

I'm really not sure that she has ever had applesauce before. I vaguely remember trying it with her but if I remember correctly, she didn't like the feel of the texture in her mouth and refused to eat it so we had to switch to stage 2 baby food purees because they're smoother. That was probably at least a year ago, so it was a good time to give it another go. She insisted on opening it herself, which she wasn't really able to do but if you ask her, she'll probably say she did it by herself. :)

I didn't have my expectations very high for the applesauce (because it wasn't a tortilla chip, haha) but she did great! She made yuck faces for the first few bites but she still kept eating and didn't spit anything out.
When she slowed down, we had her eat another bite and then she got to play a little bit of a game on the iPad. She kept eating slowly but steadily in between playing games for a minute or two at a time until she had finished the whole cup of applesauce.

Yay! :) So far, we haven't seen any adverse effects from the applesauce and hopefully she will want to eat it again. As of today, she's not at all interested in it. Apples are another really versatile food so it would be great to have that as one of her safe foods, at least to use in baking.

She's had kind of an off week in a lot of ways this week. She's been having some stomach pain and I'm really not sure why. Yesterday morning I asked her how her stomach felt. She said, "Well, it hurts a little. Not a lot, just a little bit. Can I have a pink Tum?" I asked her if her stomach hurt enough to have minty Maalox instead, and she said yes. She hasn't been sleeping as well this week and her energy levels aren't quite what they normally are. Nothing extreme but just a little off. We haven't heard anything back from the doctor's office about rescheduling the botox injections yet so no news there.



Thursday, July 18, 2013

What to do when your child can't eat

I've been asked many times in the past several months how we handled the whole unpleasant task of taking all food away from a child who is used to eating. There are a lot of reasons why a child who is used to eating at least some food could suddenly need to stop eating and drinking. Kids who are diagnosed with eosinophilic disorders often need to go on an elemental diet, meaning no food or drinks other than an elemental formula. Elemental formulas do not have any whole or partial food proteins in them. The proteins have been broken down into free amino acids, which makes it nearly impossible for the immune system to recognize the formula as something it should react to. Many kids on elemental diets because of eosinophilic disorders are able to eat Dum Dums, as they are manufactured in a way that prevents cross contamination with allergens, and most flavors don't contain any natural ingredients. Eosinophilic disorders aren't the only immune system-related reason to stop eating. For us, it was multiple confirmed food allergies and the suspicion that there may have been more that we didn't know about. Other kids have to stop taking in anything orally because of the risk of aspirating food or liquids into the lungs. Obviously this can have serious consequences, and often, it's not worth the risk.

So what do you do when your child who is used to having at least SOME food and liquids suddenly can only have formula that really doesn't taste good? Depending on the age of the child and the reason for taking oral eating/drinking away, some things that I will suggest may have to be adapted or just plain won't apply, but here are a few things that might help.

1. Take the focus off of mealtime for a while.
At our house, the adjustment phase took about 6 weeks. When I say "adjustment phase" I'm talking about the time it took for Raya to no longer cry every time somebody else was eating something or throw fits every time she asked for a specific food and was told no, or insist on sitting at the table with us and crying all the way through dinner while begging for food that she had never had any previous interest in. It was a pretty rough 6 weeks. We felt like gathering everybody together at the table was basically just teasing her. We tried taking turns sitting in another room with her and letting her play special games on the iPad or watch movies, but she knew that everybody else was in the kitchen eating and she wanted to be there too. For some kids, going to a different room might work but for us, it didn't. Making mealtimes a very casual thing helped. I didn't spend very much time cooking during those first few weeks and the kids ate a lot of burritos. We didn't all eat at the same time either. The weather is pretty nice in February where we live, so sometimes that meant that the kids took their food outside and ate. I usually waited until the kids were in bed before I ate dinner because if I tried to eat while Raya was awake, she cried and whined and climbed all over me. During the day, I ate when she was distracted or in another room. I may or may not have had to hide in the bathroom or my closet on more than one occasion to wolf down a PB&J...

Some people may criticize this approach with the argument that the child will have to learn to deal with other people eating, but I don't have any doubt that eating in front of her during the time when she was having the hardest time emotionally would have been cruel and would not have helped her adjust. This is not to say that I made EVERYONE hide their food from her, but when it bothered her that someone in the family was eating, we quietly removed her from their presence or had them take their food elsewhere. We also missed out on a couple of events that revolved around food that would have been very difficult for her to handle (and in turn, difficult for ME to handle).

For older kids, make family time something that doesn't involve food. Play games together, go for a walk, play at a park, or even just watch a movie together. Taking the focus off of mealtime doesn't mean giving up family time, it just means redefining it.

2. Find something else to do during mealtime.
I know I said that this technique didn't really help us much, but for some kids it makes a world of difference to know that when everybody else is enjoying food, they get to do something else that they don't normally get to do. A couple times when Raya was having a really bad day, rather than have her sit at the table and cry like she often insisted on doing, I put her in the stroller and took her for a long walk while everyone else ate dinner. She loves being outside and the weather was beautiful, so she was happy. For other kids, going to another room and having one-on-one time with different family members can be a fun distraction from missing out on dinner. Take turns being the one that plays with the child who isn't able to eat. Go for a bike ride, play board games, card games, video games, toy cars, Barbies, or just snuggle and watch a movie.

3. Find things they CAN have and offer as many choices as possible.
For kids who are unable to eat because of aspiration or choking risk, this part will probably not apply, but for kids who have other reasons (like food allergies) to stop eating/drinking, this is what we were able to do. Her GI and I had discussed the fact that since she was going elemental because of food allergies, it would be okay for her to have Dum Dums (suckers) and Smarties since both of them are manufactured in facilities that are free of the top 8 most common food allergens. We wanted her to have SOMETHING she could eat.


She was also fortunate that since she had passed her last swallow study on all thicknesses of liquids, she was still able to have ice and water. She LOVES ice, so we let her eat ice during meals when she wanted to be at the table with us. If she had not passed her swallow study on ultra thin liquids, we could have thickened water and then frozen it into ice cubes so that she could have safely eaten the ice cubes. (even though ice is a solid, it melts into a very thin liquid so it would still be off limits for a child that did not pass a swallow study) We offered her as many choices as we could with the limited number of things she could have. You wouldn't believe how many different ways there are to serve ice to a 3 year old. Crushed, cubed, wet, dry, in a bowl with water, in a bowl without water, on a plate, in a cup, with a spoon, with a "spork", ice soup, slushy ice, etc. We let her choose what dish she had her ice in and what kind she wanted. Even that little detail made a huge difference to her. After she had gotten to a point of being okay with the rest of us eating food, we went out to dinner and would order her a cup of ice and a plate. It was priceless to see how excited she got when the waitress would bring out a big cup full of ice and set it in front of her because it was exactly what she had asked for.

Aside from the ice, we learned that there's more to Smarties and Dum Dums than meets the eye. Did you know that you can melt down Dum Dums into a simple syrup and use it to flavor popsicles? Raya was pretty excited about that one. We also were able to use thickener to make Dum Dum syrup into "soup". If she wanted to add Smarties to it, we added Smarties to it. The thickener was at the suggestion of my clever sister, who is a nurse. (Some thickeners may not be appropriate for kids with eosinophilic disorders.) Here are a few different types of thickeners:

We use packets of Simply Thick (honey consistency) mixed a little thicker than the directions say so that it's scoopable. After my sister suggested thickening water into "soup," I took the idea and ran with it. First, we tried making "Smartie soup" by thickening water and putting Smarties in it but she didn't like that. I couldn't blame her. Thickened water is just plain weird. Since Neocate comes in vanilla and chocolate, we used thickener to make her flavored formula into pudding. It was AWESOME. We had one more thing we could give her, she was thrilled to have something else to eat, and this actually had some nutritive value to it. When she wanted a special treat on Easter while we were eating our dessert, I let her choose a color of food coloring and dyed her pudding blue. She was SO excited! We also made popsicles out of her thickened Neocate. Then we were able to branch out to EO28 Splash because it's also an elemental product. That gave her 3 flavors of "juice boxes" to choose from, and we made popsicles out of those too. Get creative with what you do have available!

4. For kids who are not able or allowed to swallow, find non-food items to work with.
Feeding therapy with no food was kind of funny. We didn't want to lose our spot at the clinic we love, so we kept going and just worked on oral motor skills, drinking water without choking on it, and speech (since our feeding therapist is technically a speech therapist.) Feeding therapy doesn't always have to involve food in order to be productive. You'd be amazed by how many flavored non-food items you can find for kids. Some have to be ordered through certain websites (like www.chewytubes.com) but there are a lot of things available on Amazon. Having something flavored to chew on, suck on, lick, etc. can help with cravings for something with flavor if things like Dum Dums are not an option. Here are a few examples.

Flavored Chewy Tubes:


Unflavored Chewy Tubes:
Some kids may not necessarily care about having something flavored but may just enjoy the sensory input of having something to chew on. It's also important to keep working on oral motor skills, so chewy tubes (flavored or not) are a great tool to have. They come in a wide variety of shapes, colors, and textures. Here are a few:


Flavored Tongue Depressors:
These were something that we first saw several months before Raya went elemental. Her feeding therapist brought one with her and Raya loved it. These would give a child who isn't able to eat an opportunity to have exposure to new flavors. The great thing is that you can get regular old wooden tongue depressors or more durable plastic ones with cute little animal faces printed at one end.


Oral Care Toothettes and Glycerin Swabs:
Toothettes are a nice option for a child that doesn't like hard or chewy things like the chewy tubes and tongue depressors. They also come in flavored and unflavored, as well as with or without an oral cleansing solution. Glycerin swabs help moisturize a dry mouth, which can be a problem for children who are unable to eat or drink, and come in a lemon flavor.

Other chewables:
One thing that Raya really liked chewing on was a damp washcloth. It sounds gross and yeah, it was pretty gross when she'd drop it on the floor and then stick it back in her mouth before I could stop her, but it was a really good thing for her. For a child that has safety issues with swallowing liquids, caution would have to be taken to make sure that there was no risk of aspirating liquid from the washcloth.

5. Blame the doctor but do it in the nicest way possible.
I'm only halfway being funny about that. I definitely don't mean throw the doctor under the bus, but don't be afraid to let the child know that their new dietary restrictions aren't something you're imposing on them just for the heck of it. For kids who are old enough to understand even a little bit that eating or drinking will make them sick, it's important to talk about it. Explain on whatever level they are able to understand the reasons why they are no longer allowed to eat or drink. Remind them how they felt the last time food or liquids made them sick. Sometimes it means dragging the doctor into it or even having the doctor explain to the child what their new dietary restrictions will be and why, and if possible, a time frame on how long it will be before they can try eating or drinking something again. I feel like it's really important in the long run for kids to be included in those conversations as much as possible. Yes, they are difficult conversations to have and the instinct as the parent is to protect the child from them, but some of these kids will be dealing with life long medical conditions and the sooner they become a part of their own medical team, the more equipped they will be as they get older to help manage their own care. (my opinion, of course...)

In our case, Raya had recently turned 3 years old at the time and had gotten to a point where she looked forward to seeing her GI doctor, even if she did still have some anxiety when the doctor walked in the room. The best we could do in explaining it to Raya was to tell her that Dr. S said she needed to stop eating food for a while because lots of different foods were making her tummy sick. She was able to understand already that sometimes we had to do things that Dr. S said whether she liked it or not, so that explanation made sense to her. I have always talked very positively to her about her doctor and made frequent comments about how much her doctor cares about her and wants her to feel good, so she trusts her (as much as a 3 year old can trust a doctor, I suppose). That is not to say that she was HAPPY about the restrictions we were imposing on her, but being able to say, "I'm sorry that we can't let you eat that but Dr. S doesn't want you eat it right now" did help because then it wasn't just mean Mommy saying no. At first, there was still a lot of crying and I said a lot of, "I'm sorry, sweetheart, I know you're sad but if I let you eat that, it will make your tummy sick." After 3 or 4 months of not eating anything but the aforementioned ice, Smarties and Dum Dums, she got to the point where she would say things like, "When Dr. S says I can eat grapes, can I eat grapes?"

6. Enlist the help of siblings
I can only speak for my own family, but having to take food away from Raya after 3+ years of trying to get her to eat was hard on everybody. It wasn't easy for the other kids to temporarily give up our peaceful family dinnertimes or feel like they had to sneak food from their sister, or listen to her cry about food all the time. They got jealous of the fact that she got to have Smarties and Dum Dums when they were eating boring old food. Even Raya's preschool teacher commented a few times about the other kids being jealous that she was eating Smarties and they were stuck with goldfish crackers. That was frustrating for me because I really didn't feel bad that my child was eating Smarties when her other option was to sit and eat nothing while watching all her friends eat a snack. I wish I had a dime for every time I had to say (to my own kids or to other people), "Well, if she had a choice right now she'd probably rather have the goldfish crackers!" Or whatever the food of the moment was. I had several talks with our other kids about being supportive of Raya and what they could do to help her not be so sad about not getting to have food. Sometimes when Raya would start to get upset about not getting whatever somebody else was eating, one of them would say, "Wow, Raya, you're so lucky you get to have chocolate pudding for dinner!" (pudding made out of Neocate + thickener) A little bit of sibling rivalry goes a long way. Knowing that somebody else thought SHE was lucky for having whatever she was having helped perk her back up.

I saw a story on NBC a year or two ago about a teenage girl who was suddenly struck with gastroparesis (paralysis of the stomach) after an illness and couldn't eat anything. She talked about how it was sometimes physically painful for her to smell the scents of cooking food because of the physiological reactions that are triggered (i.e. salivation, release of stomach acid, etc.) to prepare the body for digestion. Because of how difficult it was for her physically, mentally, and emotionally, her family decided that they would close their kitchen and not cook at home anymore for as long as she was unable to eat. That story really struck me for many reasons, one of the biggest being what a sweet sacrifice her family made in order to support her in her illness. I have remembered that example and tried to keep it in mind as we've gone through different phases with food.

By contrast, I know of a few adults and teens who are unable to eat for various reasons, and cooking for other people makes them feel good. It makes them feel like they are still an important part of their family and are providing a helpful service for other people. My sweet friend Rachel LOVES to cook but is unable to eat most foods due to her disease. She and a couple other friends and I all went up to the hospital to visit friends whose baby was in the hospital one Sunday afternoon, and Rachel volunteered to make us all dinner. She made the BEST steak quesadillas and then nibbled on some plain potatoes while we ate her delicious creations. It felt a little awkward to eat in front of her but she reassured us that cooking made her happy and she was just happy to be able to eat her potatoes and not get sick. I learned a valuable lesson from her that day about not assuming that it must be hard for people who can't eat to watch other people eat. While that is probably true in many cases, some people are happy to not feel sick and if not eating is what it takes to not feel sick, then so be it. Older children may still want to be involved in meal preparation and family dinners even if there's nothing on the table that they can eat. It's important to be attentive to your child's feelings and follow their lead as to how they want to be included in meals.

It's difficult to know how much things like the smells of cooking food or the sounds of food packaging rustling may or may not bother a child who is too young to express their feelings about not being able to eat, and I think sometimes it's easy to overlook the need to make accommodations for them. We don't want to spoil our children by catering to their every emotional whim, but I personally feel that in situations like having to take away food and liquids by mouth, those lines are blurred and you have to do what feels right for your child regardless of what society tells you. Society in general doesn't have a clue what it's like to have to take all food away from a child. It's just unfathomable for most people. You do what you and your family need in order to get through a difficult adjustment. Things won't always be the way they are right at the beginning, and changes can be made as you go along. In the end, all you can do is do your best, and hopefully these suggestions will be helpful.

Saturday, July 13, 2013

No-go on the Botox

In what was an amusingly fitting end to a really crappy week, Raya's botox procedure did not happen yesterday as planned. I had been told on Thursday evening at 4:45pm that we still did not have authorization for the botox from the insurance. I was told that we could sign a waiver saying we would pay the $1200 for the injections if the insurance company ended up denying the claim and go ahead with the procedure. I told the scheduler that we would not be willing to do that. She reminded me more than once that Raya's doctor had opened her schedule specifically for Raya and doesn't normally do procedures at the main hospital or on Fridays, (i.e. guilt tripped me) and said that since our insurance company is in a different time zone, there was a chance that we could have the authorization by the time the procedure was scheduled to start at 8:30. She said it was completely up to us what we decided to do, whether we rescheduled or went ahead with it, or just went to the hospital in the morning to see if the auth had come in yet or not. In hindsight, she should have just told me to reschedule since I said we weren't willing to sign the non coverage waiver, but she didn't. I knew the doctor had made special arrangements to do the procedure and we had already arranged for Donny to take the day off and for the 3 older kids to spend the night at friends' houses, so we figured we might as well show up.

We dragged ourselves out of bed at 5:30 and left for the hospital. I tried calling admitting on the way there to find out if they had by chance gotten the auth but the lady talked to me like I was an idiot for thinking that something might have actually happened before 7am Pacific time. Raya had been wide awake when we got there and chattering up a storm when she got into her stroller in the parking garage. As soon as we started walking toward the entrance, she laid back in the stroller and hugged her blanket and didn't make a peep. To passers by, she probably just looked like a tired kid that got dragged out of bed too early, but that wasn't it. This is what hospital anxiety looked like yesterday:
Normally, she wants out of the stroller and she fusses and whines and cries while we wait in admitting. This time, she just sat there and played quietly with the half dozen hair barrettes she had stuffed in her pocket before we left the house. Goodness knows how she would have been if we had actually done the procedure and had to go into the endoscopy suite where she had her last torturous hospital experience in May. That's why I wanted Donny to come with me this time. So yeah, girlfriend isn't a fan of the hospital.

We checked in and filled out the paperwork and they called us back to the admitting desk. The lady (who was rather crabby and snippy, I might add) started going through everything and then said something about the waiver we had agreed to sign saying that we'd pay for the injections if the insurance denied it. I put the pen down and told her that was the exact OPPOSITE of what I had told the scheduler the day before. I said that we had been told the Botox injections would cost $1200, and that it was more than we could risk being stuck with if the insurance denied it. I explained to her that the scheduler had told me that we could come down in the morning and have admitting check again to see if the insurance company had made a decision yet or not. She was not happy to hear that but finally conceded that she understood why we might not want to sign the waiver. She told us (rather rudely) to go sit in the waiting area while she called the insurance company. About 20 minutes later, she came out and listed off the 4 or 5 people she had spoken to before finally being told that it was still in review, and then told us we'd have to go home and reschedule. Have I mentioned that she was rude? I've dealt with the same lady many times before and she's never been overly friendly but she must have been having a bad day or something because she was just plain rude. Ugh. So we went home. Raya fell asleep in the car on the way home and Donny and I were both ready for naps when we got home.


I tried not to be mad because we went there knowing that it was pretty likely that the auth wouldn't be there, but it was still really frustrating. Once we got home I emailed the scheduler (because I didn't know if I'd be able to have a polite phone conversation at that point) and let her know that we would need to reschedule, that I understood rescheduling meant that we'd be having a different GI and told her which ones I would be okay with, that I was aware that her doctor had gone to some trouble to get us that appointment & I was sorry to inconvenience her but that we had also gone to a great deal of trouble to make arrangements to be there, and that I did not want anything scheduled until we had the authorization from the insurance company so that this situation did not come up again. I also emailed the doctor to let her know the whole story because I didn't know what she had been told about why we canceled at the last second. We have a good relationship with her and I want to keep it that way.

Later in the afternoon, the scheduler called me and said that the insurance company had ended up denying the botox and was requesting a peer-to-peer review, meaning that their medical director wants to talk to Raya's GI doctor about why we're trying to get approval on botox. Hopefully that conversation will take place next week and we can try and get it scheduled again with the other GI that I absolutely love.

Now that all of that has happened, I find myself wondering if the botox injections will really be worth all of this trouble. It is clear that we need to do something if she's ever going to progress past where she is right now. I liked the pyloric botox option because it's less invasive and less permanent than a surgical procedure to enlarge the opening between her stomach and intestine, but the difficulty we're having with getting insurance to approve it just one time makes me wonder how sustainable of an option it will be (if we ever get it to happen at all). Botox doesn't last forever, so she would likely need repeated injections in the future. We've also been told that it can have diminishing effects with each subsequent injection, so even if it works great once or twice, it may not work as well after that. I'm not one to rush into surgery, so I hope that we at least get one shot at the botox so we can see if relaxing that muscle will help or hurt before we end up doing something more permanent.


In other news, Raya has now branched out to "normal" popsicles, as long as they don't have any natural ingredients in them. Amusing, eh? Other moms scour the freezer section looking for popsicles without high fructose corn syrup and with only natural ingredients and I'm looking for the ones that DON'T have anything "real" in them. (it's because we're slowly adding foods back into her diet & don't want to mess it up by having her eat something we're not ready to add yet) Anyway, she LOVES popsicles! The stronger the flavor, the more she likes it. I wish popsicles weren't brightly colored though because then she ends up looking like Joker from Batman. Yesterday's popsicle was orange so it wasn't as Joker-esque as when she eats a red one.

We had a pretty quiet day for the rest of the day. It was BEAUTIFUL for being the middle of July in AZ. The temperature hovered around 100 degrees and it was overcast and breezy all day. In the middle of the afternoon, a huge dust storm blew in and although they're messy and not fun to drive in, they break up the monotony of a summer full of bright sunshine and extreme high temperatures. We finally got some rain too. It's been a slow and boring monsoon season so it was nice to finally get a good one. The friends that Cole stayed with brought him home in the morning after swimming and I picked the girls up in the afternoon. They had all stayed up later than they usually do here so they were all tired and crabby by bedtime. (that's why we don't do sleepovers unless an emergency or hospital visit is involved.)


In the evening, Donny and the big kids went to karate class and Raya and I had a nice visit from some friends. Raya hasn't had many opportunities to play with kids that are younger than she is so she had a great time with little Miss E.

She is a darling 1 year old who is working really hard (along with her awesome parents) to eat and drink enough that she won't need her NG tube anymore. I don't know how we got so lucky (or how so many people around us got so unlucky, haha) but we have so many little buddies close by us who have feeding tubes and it's so nice!

After they left, I got a phone call telling me that my car was already finished at the body shop (HOORAY!!) and we could pick it up today. While I was on the phone, Miss Mischief decided to get into the fridge, take out a 2 pound bag of shredded cheese, and dump the entire thing into a plastic Easter bucket in the corner of the living room (where all food and liquids are prohibited) behind her dollhouse. The floor was still covered in Build-A-Bear fuzz from the previous day's Tubie Friend making marathon, so I had decided to vacuum and discovered the cheese when I got to that corner of the room.

Such a stinker! The carpet is long and fluffy and the cheese had been there just long enough to start getting warm & soft, so vacuuming it up was not easy. And of course she ate some, and she's allergic to dairy. She complained later that her tummy hurt but that was probably because of the whole wheat Ritz crackers that she had gotten into the day before. She's on a food stealing kick this week. Hopefully it will end soon before she makes herself sick. After the cheese was cleaned up, I decided I'd better not let her out of my sight until she went to sleep so we played Guess Who until she was ready for bed. Have you ever played Guess Who with a 3 year old? It's comical. She chattered up a storm the whole time we were playing. One of these days, I'll get a good video of the conversations she has with us. Sure do love this little ball of energy!

Thursday, July 11, 2013

Conversations that sting

Raya has become quite the conversationalist. Most of her recent conversations are one sided and probably fit more into the lecture or diatribe categories than the conversation category. It amazes me sometimes how many words she can get out in a single breath of air. Of course the facial expressions and hand gestures just put the whole thing over the top and none of us can really help but laugh when she gets like that, no matter what the subject is. She also likes to contradict everything I say. The other night she asked me if I wanted to do something and I said I would after I was done with my dinner. She said, "Um, that's not dinner, that's pizza." I said, "Kid, I'm eating pizza for dinner. The pizza is my dinner. Stop arguing with me and eat your tortilla chip and ice." ha ha. She really is a hoot.

Today I had a different conversation with her. It was probably the deepest conversation that I've ever had with her, and as deep as it can really get with a flighty 3 year old. We were making some Tubie Friends this afternoon. There were 5 of them, so each of the kids was responsible for pulling the stuffing out of a bear (or bunny or puppy) and putting it in a plastic bag and then stuffing it all back in once I finished putting the medical devices in (NG, G, and GJ tubes, nasal cannulas, and trachs). While Raya was slowly putting the stuffing back into her bear, for some reason, I decided to ask her a question. I said, "Raya, do you think someday you would like to not have a tubie in your tummy anymore?"

I don't know what possessed me to ask her. Before that moment, it had never occurred to me that she might actually want to not have a G tube someday. For all I've assumed, she views it as a part of her body, and how would it even occur to a little kid that the tube that's always been there even COULD be removed. To my shock, her face lit up, she looked down at her tube, put her hand on it and said, "You mean I could have no tubie?!" Ouch. I tried not to visibly react the way I was feeling, and said, "Well, if you eat lots of food and drink lots of water and swallow all your medicines in your mouth every day, then we could take your tube out. Do you think you would like that?" To which she replied, "And I wouldn't have a hole in my tummy anymore?" And I'm thinking to myself, Oh.My.Word, my daughter is consciously aware of the fact that there is a hole in her stomach and has positive reactions to the mention of removing the tube and not having the hole there anymore. I don't know exactly why, but that hit me hard and kind of made me feel like crap. It has never even crossed my mind that she would even have an opinion about the fact that she has a G tube. She has had it for longer than she can remember, and it's never been a choice for her, nor does it seem to bother her that she has it. I really don't think that she has the type of personality that would allow her to give a crap what anybody else thinks about the hole in her tummy, but until today I hadn't even thought about the possibility that she might ever not like that it's there.

I'm still trying to decide how I feel about that whole conversation. Of course being the funny girl that she is, after I told her what she'd have to do in order to not need the tube anymore she said something about how she was already full so she'd have to eat more on a different day. Sort of like, well yeah that's a nice idea but I don't feel like it today.

That made me laugh but kind of feel like crying a little bit too because I've seen the current limits of her stomach capacity and it's SO HARD to imagine her actually being able to eat enough to not need the tube without having about 8 meals a day and only IF her stomach would empty. She gets full fast when she eats solid food. Her lunch at therapy yesterday was a good example of that. She had about 3/4 of half of a red potato, 1 1/2 slices of a peach, and MAYBE 2 ounces of her box of Splash. It took her about 40 minutes, and she was FULL. If she had eaten another bite or had another sip of Splash, she would have been hurting. She didn't want anything but a popsicle the rest of the day. Today has been quite a different story. She's been sneaking food that she knows she's allergic to today, like Honey Nut Cheerios (allergic to oats and almonds...) and whole wheat Ritz crackers. She's been pushing the limits today but so has everybody else. They REEEEEEEALLY tried my patience today. This is the point in summer break where I start to really look forward to school starting and then feel guilty for wishing away their summer break. But yeah, we're counting down... :)

Speaking of counting down, the big EGD and botox procedure is tomorrow morning. Maybe. Gosh I love me a good insurance drama. I emailed the GI office on Tuesday to ask for verification on the prep instructions for Raya's procedure on Friday morning. Yesterday I got an email back from the scheduler with the instructions, and at the very end of the email it said, "Just to let you know, we still have not secured authorization for the Botox injections. I will keep you posted as soon as I hear from the authorization team." Um, wow, nothing like waiting until the last minute, eh? By about noon today I still hadn't heard anything so I emailed her and asked if they had heard anything yet. She replied that they hadn't but that she would let me know. Since we're down to one car and it's not big enough for all of us, I made arrangements for the other kids to go to friends' houses to spend the night. They were thrilled since we have a no sleepover rule. The only exception to the rule is for hospital stuff and emergencies, so since this fit the rule. :) I figured that even if the insurance didn't auth it in time, I would at least have one night of peace and quiet which I definitely deserved after the wild and crazy crap they pulled on me all afternoon.

At 4:45, the scheduler called me and said that Raya's secondary insurance denied the botox and the primary insurance hasn't said yes or no yet and it's waiting to be reviewed by their medical director. I wasn't sure how to respond to that. Nothing like this has ever happened. I asked her if that meant we needed to reschedule and she said, "Well, it's completely up to you. You can still go in at 6:30 and see if they've gotten the auth yet. The insurance company is in a different time zone so they might have it done by the time you get there. You can also sign a non coverage waiver saying that if the insurance denies it, you'll pay the cost of the botox out of pocket. It's $1200." Oh sure, because if we're going to pay $1200 out of pocket for BOTOX, it's going in MY FACE to fix all the lines & wrinkles I've accumulated over the past 3 1/2 years from stress over stupid insurance crap like this! When I mentioned rescheduling, she said that it's up to us and we could reschedule but that it would be with one of the other GI doctors because "Dr. S only opened up her schedule tomorrow for certain kids because she's not normally at the main hospital anymore." I'm aware of that, and I am deeply grateful that she would do that for us, but it doesn't solve the insurance issue. Since I was completely on the spot about what to do and had already made arrangements for the kids, we will go in at the time we're scheduled for but I will NOT be signing any waiver for non coverage, and if that means we have to sit in admitting until they hear back from insurance then so be it. It wasn't our screw up so if the auth doesn't come by the time the procedure is scheduled to start, then I guess we'll be rescheduling it for another day. I'm glad they're keeping me in suspense about it. It almost makes me forget about the suspense of seeing how the botox will actually affect Raya's digestion and whether it will do nothing or make her have dumping episodes or somewhere in between. ha ha.

>To end on a positive note, here's some pictures that she wanted me to take of her last night when she was being silly. I asked her who taught her to do that with her fingers and she said, "*sigh* Mommy, nobody teach-ed me, I teach-ed mySELF!"

And here's Sleeping Beauty all passed out on the living room floor tonight. She fell asleep just in time for me to not have to listen to the mariachi episode of Backyardigans again. ♥

Wednesday, July 10, 2013

Having a better day...

My apologies to anyone who was unfortunate enough to read yesterday's emotional vomit episode. Things are much better today. My car still isn't fixed and nothing else has really changed either except that we were able to figure out how we could make some adjustments so that things will work out better for us and I'm just feeling better. Sometimes you just have to have a good meltdown. :)

We've had kind of a funny day today. Last night I could NOT figure out why Raya wasn't going to sleep. It was almost 10:30 before she fell asleep and she was SO fidgety that she literally could not be still for even 5 seconds right up until she fell asleep. It's sad to see how hard it is for her to calm and relax herself even when she's really tired. This morning, I walked into the kitchen and saw that the syringe of her "nigh-night medicine" on the counter. I was actually relieved because I was worried last night that it had suddenly stopped working for her or that I hadn't shaken the bottle good enough before I drew up the syringe full of it. This afternoon I realized that what had happened was that I had the medicine and water flush all ready to go and when she walked into the kitchen for me to give it to her, she pointed to her backpack and said, "Mommy, something's leaking." and her pump bag had popped. She said, "Well Mommy, I jee-YUST wanted to lay down!" So we had a discussion about how it's not a good idea to use the backpack as a pillow and I got completely distracted by cleaning that mess up and totally forgot to give her the medicine. All it takes is one night of missing the dose for us to be reminded just how much this medicine helps her and take away all feelings of guilt associated with using medicine to help her sleep. The up side was that this afternoon, she fell asleep on the way home from feeding therapy and ended up sleeping for about 90 minutes after we got home. (My very sweet friend was able to give us a ride since we are car-less for another week or so.) She even slept through the entire visit from her grandparents, including when Grandpa was deliberately trying to wake her up by rubbing his scruff on her cheek. :)

She did great at feeding therapy today. We packed her lunch in a paper bag (from the pharmacy, ha ha) and she was very excited to carry her lunch to therapy. She brought 1/2 of a medium sized red potato, half of a peach, and a box of grape Splash. She ended up eating about 3/4 of the half potato and ate about 1 1/2 slices of peach, and drank about 2 ounces of Splash and then she was FULL. We could see it in her face and by her body language that she needed to be done. She did really well with the peaches. I didn't expect her to eat much of it since the last time we gave it to her kind of went that way, but she really wanted to eat the potato so she had to eat bites of peach before she could get bites of potato. That worked pretty well. After the first couple of bites of peach, she decided they weren't so bad. She still prefers the potato though. :) I just realized that I forgot to check her stomach for residuals before I started her pump. Oops. I got an email today saying that insurance still hasn't authorized the botox injections for Friday so we may be postponing that. I hope not.

Well anyway, just wanted to say that things are going better today and I haven't completely lost my mind. :)

Tuesday, July 9, 2013

I'm having a sucky week.

This entire blog post will pretty much be nothing but me venting and complaining about things that I usually don't even discuss publicly so if you don't want to read it, now is your chance to stop. So far my week has really stunk. We seem to have really crappy luck with our cars every July. Yesterday started off great. I finished up some things that had been hanging over my head, which always feels nice. Raya's respite provider came and since she was here and I didn't have anything pressing to do, I decided to take the big kids to the library. The library is about 5 miles away and I made it about 2 1/2 miles and then got in a fender bender. Everybody in both cars was fine but it still sucks. My car was still drivable and I left it running the whole time we were there so the kids wouldn't overheat. Cole had to get out of the car after a while and dry heave in the shade of a tree for a few minutes because he had taken his pain medicine before we left and it upset his stomach. We were outside in the 108-ish weather for probably 45 minutes so I was glad that the kids could at least stay in the car with the AC on. It was the first ticket I've gotten in about 15 years so hopefully the insurance company will be merciful and not jack up our insurance rate. I'll pay the insurance deductible and mine will get fixed, and I'll pay the fee to do driving school so the ticket won't go on my record, but it still sucks. We have no rental car coverage on our insurance policy so we're stuck with one car while mine gets fixed, and PRAYING that they get all the parts they need very quickly. All the damage was to the right front fender, headlight & bumper so hopefully it won't take them too long. They said probably the middle of next week unless it takes longer to order parts. To make matters worse, the car that Donny has had for almost 7 years has been giving us trouble all summer. It's been in the shop 3 times since the week after school got out, which means that during that time, I've been stuck at home without a car since Donny works too far away for me to give him rides to work. Yesterday when he was driving home from work, the temperature gauge kept going up and down erratically and the engine light came on yet again. When we have my car, we don't worry as much if his is in the shop because at least we still have one reliable vehicle. (FYI there is really nothing within walking distance and no public transportation near us so we really need both vehicles) Anyway, when he came home and said that he was afraid to drive it all the way to work and back today because of what it was doing on his way home, we decided enough was enough and went car shopping. Car shopping sucks too. We've been free of car payments for over 3 years now. I'd be lying if I said that I'm not completely stressed out over the fact that we will now have a car payment and probably higher insurance costs for the new car than for his 11 year old Honda. I may or may not have woken up at 4:45 this morning having somewhat of a panic attack about it. It's a nice car but not extravagant, and it has low mileage and is only 4 years old so we will get a lot of life out of it, but I absolutely HATE having to have a car payment again. I've said it before and I'll say it again, when it comes to dealing with stress, I am WAYYYYYYYY better at dealing with the stress of a child with medical problems than I am at dealing with financial and car-related stress. (and for the record, I'm not wishing medical problems on any of my children and I understand that we are very, very lucky that everyone is okay and the car is fixable. having lost a sibling in a car accident, I don't take any of that for granted, but it also doesn't take the rest of these problems away)  I feel like I sprouted a new ulcer overnight and my esophagus has been on fire all day. I've been sitting at the computer most of the day re-working our budget to figure out how to accommodate for the new but necessary expense of a car payment, which means that I didn't get any of the massive pile of laundry done or anything else cleaned up. I've gone through my usual panicked routine that I go through whenever something like this happens, which involves futile job hunting for both of us, calculating and re-calculating the student loan payment, thinking about moving somewhere else that's cheaper, and trying to find as many expenses to cut as I can (there aren't many, we're frugal people). There are a million "ifs" running through my head. IF I was done with school and could get a decent paying job. IF we had done this or that differently. IF I had just stayed home from the friggin library. IF we weren't stuck here because of Raya's medical care & insurance. IF we didn't have student loans. IF we'd just gotten rid of Donny's car last fall before we started having to put money into it. IF IF IF. Of course none of that does any good and there have been many small emotional breakdowns, moments of panic, moments of questioning how things will work out while trying to remind myself that they always do, and desperate prayers throughout the day, and I've accomplished pretty much nothing other than becoming more and more frustrated by the whole situation. I just want to run away and hide. It's been hard enough for me to imagine how I'm going to accomplish going to nursing school but now we've added debt and stretched our budget and it's back to feeling impossible again. I even tried to make myself feel better by doing something nice for someone else. I was going to make the Tubie Friends that have been assigned to me so I can ship them off tomorrow (since the post office IS within walking distance...sort of). Some of them are for boys and I only have girly bears left, so I checked online to see when the shipment of bears that TF had sent to me is due to arrive. I was hit with nauseating panic once again when I realized that they had shipped them to the house we moved out of in September. The order was shipped 8 days ago so there was no chance of fixing it. Fortunately, I was able to get the new tenant's phone number from the landlord and he said he'll let me know if/when the package shows up. I felt better but I won't feel completely better until I have the box of bears. I had a headache this afternoon and tried to take a nap but kept getting interrupted by fighting kids or my phone, which I had to keep with me in case the insurance agent called me back, which he has not done yet.

I am normally a pretty upbeat and optimistic person, and whatever I lack in optimism I try to make up for in humor. I think I'm pretty good at that. Right now though, I just don't even feel like it. I have a very sweet friend who ordered us pizza for dinner last night and another one that is giving Raya and I a ride to feeding therapy tomorrow so that we don't have to cancel it, and I greatly appreciate both of them for helping out. Donny will probably be able to take Friday off so that I can take Raya to the hospital for her endoscopy & botox injections and not have to reschedule. The summer movie on Thursday is Charlotte's Web, so I won't feel too bad if the kids miss that one. I think we have it on DVD so if they really want to watch it, we'll pop some popcorn and put blankets over the windows so it's dark. The girl that was driving the other car was probably about 20 and after she got off the phone with her mom while we were waiting for the police, she told me that the car was registered to her mom but that her parents had kicked her out and that was the first time she and her mom had talked since she'd moved out. Her car wasn't drivable like mine was, so her dad had to come pick her and her friend up. As they were getting the last of her things out of the car, I gave her a hug and told her that I hoped she could work things out with her parents. She said that she hoped so too, and that at least the accident would give them a reason to have to talk to each other. As crazy as this sounds, I'm glad that the accident wasn't her fault because her parents really can't be mad at her about it and I really do hope that they can work things out. I would have preferred for them to do it on their own without a car accident being involved, but whatever. (there, sense of humor slowly returning...)

Ok, I'm done venting. I actually feel a little bit better. So yeah, if you're the praying type and would like something to pray for, please pray for my sanity to return so I can have a little peace and get some sleep at night. I would greatly appreciate it. Or, you know, if somebody happens to have a big fat wad of extra money laying around, I'd be happy to accept it. Money may not solve everything but there are a heck of a lot of problems in the world that CAN be solved with money.

Thursday, July 4, 2013

Another new food

Raya added another new food to her diet last night. I hadn't really planned on it but we had some fresh peaches and I thought she might like them so I let her try some. I think it was the first time in her life that she's ever had peaches because I don't think we ever tried giving her baby food peaches during our brief and pathetic attempts at baby food.
She was not overly impressed. She ate a couple of pieces but it didn't really do anything for her. All she wanted to eat was the corn. She ended up eating about 2 tablespoons of corn so that was good. The jury's still out on whether or not peaches agree with her body. To put it mildly, there is some funk coming from her today and I'm not sure what else it could possibly be coming from, but it could definitely be the peaches.



Showing off their cute shirts from Grandma & the Idaho cousins!

Her oral intake has really gone down lately. She'll do well one day and then not want anything the next day. This morning we went to the Independence Day breakfast at church. Usually by 8:00 in the morning, she's either begging for something or she's already eating/drinking something but this morning she wasn't. I took a bag of Corn Chex and a box of Splash for her to have while we ate our {terribly unhealthy but delicious} breakfast but she really wasn't interested at all. She ate about 3 pieces of cereal and drank an ounce or two out of the 8 ounce box of Splash, and it took her about 20 sips to drink that much. 
The heat may have been part of the problem this morning. She doesn't really do well with heat. Clearly we live in the wrong state. :) On days like this, I just want to leave her tube in forever so we can help her out when she feels crappy from the heat. I've also decided that prepping a child with a G tube for surgery is MUCH easier than prepping a child without a tube for surgery. Raya will be having her endoscopy with botox injections next Friday (not surgery but still requires anesthesia) and her big brother is having an adenoidectomy tomorrow. I'm already dreading having to either wake him up at 11:00 tonight so he can eat something before his midnight cutoff or live with him when he's gone without food for almost 12 hours before his surgery (which is stupid, he doesn't need to go that long but whatever). With Raya I can just run formula into her until whatever time she can't have formula anymore and then run clear liquids until it's time to turn that off too. Piece-o-cake. Feeding tubes are awesome.


And on a side note, I hung up the phone yesterday after talking to the GI scheduler and thought to myself, "Did I really just schedule my 3 year old for BOTOX injections?? Really??" It was another one of those "is this really my life" moments. It wasn't about the botox though. More like just a moment of, this is not AT ALL what I pictured when I was holding her the day she was born. Kind of a "how did we get here" moment. I sat in feeding therapy yesterday and watched her ever-so-slowly eat a grand total of about 2 cubic inches of potato and drink less than half a box of Splash. It took her a good solid 40 minutes and she was FULL. She is so sweet. Her feeding therapist and I both could see that she was full, but her therapist told her to have another sip of Splash. Raya looked at her and she might as well have said, "Miss Heidi, I will smile politely and take another sip because you asked me to but I really REALLY don't feel like I can fit another drop in my stomach and I can't promise that I won't puke." so we stopped there. (and she still had potato in her stomach 3+ hours later)

As I watched her slowly pick her way through her tiny amount of food, I couldn't help but think about how I don't even remember anymore what it's like to watch a 3 year old eat a whole meal, or even what a full meal for a 3 year old consists of. I know it's a whole heck of a lot more food than she can fit in her stomach right now. I tried to picture her eating a whole PB & J (which will never happen thanks to her food allergies) and just couldn't even imagine her eating something that big, let alone eating it in the 25-30 minutes she'll get for lunch when she's in school. Can't even imagine. This is why we're trying the botox. If injecting botox into her pyloric sphincter will relax it enough to allow food to leave her stomach at a more normal rate and make it possible for her to eat more food at a time, then maybe that pipe dream of watching her eat a whole meal won't seem so farfetched. If it works, we'll keep doing it until it doesn't work anymore. If it doesn't work................. yeah I haven't gotten that far yet but if it doesn't work, then we'll move on to the next thing. If someone had told me 3.5 years ago that I would someday be scheduling my preschooler for botox injections, I would have laughed at the ridiculousness of it, but now I just hope it helps her. Who would have ever thought that there would be so many practical applications in medicine for botulism. :)

Monday, July 1, 2013

GI and Botox

Sometime very soon, I will get around to blogging about my wonderful week in Hyannis, Massachusetts at the Oley conference but I need to do it when I have a little more time so I can do it justice. 

I got home LATE Friday night and bummed around trying to catch up on sleep all weekend but we hit the ground running this morning. Raya had an appointment with her wonderful GI doctor at 8:30. She was SO excited to go see Dr. S! She has come a very, very long way from the days when she cried through the whole appointment and we felt good getting out of the clinic with just one vomit. She's even getting to the point now where she doesn't get hit with major anxiety when we walk into an exam room and she'll talk to Dr. S and be her usual silly self during the appointment. It's a huge relief to see her so comfortable in these appointments that are so important. I know that sounds strange and yes, it's kind of a sad statement but the fact is that these frequent doctor visits are going to be a part of her life for years to come so it's great that she's handling it better.

She is getting pretty good at cooperating for vitals. I totally didn't pay attention to how tall she is but I think it was about 96cm, and the doctor said something about her growing about an inch in the last 2 months. She's also still on an upward trend with weight. She's now at 14.6kg (32 lbs 3 oz) which puts her in the 41st percentile. In January she was 31 lbs 12.7 oz so that puts the last 6 months' worth of weight gain/loss/lack of gain into perspective a little bit. I'm glad we're moving in the right direction again. I had my doubts about the Duocal but it seems to be helping and she's tolerating it fine now.

While we waited a couple minutes for the doctor to come in, Raya colored a rainbow for me on the table. She chattered the whole time about what she was doing. I should have done a video. She cracks me up when she gets on a roll like that.


 In the last picture, she was explaining to me that even though the cheetah was in the front of the line and the dinosaur was in the back, the dinosaur was the line leader because it was faster than the pony. There is no shortage of imagination with this kiddo.

The main thing that came out of this appointment was that we are going to move forward with trying botox injections in Raya's pylorus to see if it will help with her delayed gastric emptying. If we had to pick a biggest problem out of the 3 main problems she has, it would be the delayed gastric emptying right now. Most food that she eats ends up sitting in her stomach for several hours. The impact over time is that she eats less and less because eating once again becomes uncomfortable for her. We want to keep encouraging her to eat, but we don't want to be pushing her to do something that makes her feel yucky either, and if she's ever going to be able to eat enough orally to not need the G tube anymore, we have to address this problem somehow. Dysmotility is not really something that kids just miraculously grow out of. It has definitely gotten better over time but it can also reappear at the drop of a hat, as we have seen over the past 9 months. 

The goal of the botox injections is to relax the pyloric sphincter, which is the muscle that opens and closes to release stomach contents into the small intestine. We are hoping that doing something to the pylorus will allow solid food to leave her stomach at a more typical rate so that she'll be able to eat more food at a time and not wake up late at night with stomach full of food and feeling lousy. It's not a complicated procedure by any means, just an endoscopy during which they will inject the botox into the muscle. Once it's all cleared through insurance, they'll call and schedule the procedure. I'm a bit of a pessimist when it comes to Raya's medical care. I don't ever allow myself to expect drastic improvements because of past experiences (like the GJ tube experience), but I will admit that I'm feeling very hopeful about this. We anticipate that the effects of the botox will last for several weeks. If we see good results from it, then once it wears off we will either repeat the procedure or else we will move forward with a pyloroplasty, which is a surgical procedure involving the pylorus. It has similar effects to the botox but is more permanent, which is why we are trying the botox first. I'm keeping my fingers crossed that good ol' botulism will do the trick. :)
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