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**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.**

Friday, December 30, 2011

A facial expression is worth a thousand words

Fun story to share. So we went out to dinner for Cole's 7th birthday tonight. We went through the usual, "No, we don't need to order anything for her, she doesn't know how to eat yet." conversation, and then Raya started to get impatient. She had been a little testy this evening due to the runny nose that hit her today and got a little upset that I wouldn't just hand my glass of water over to her. In order to keep her happy until our food came and we could give her a french fry to stuff in her mouth, I gave her a 60 ml syringe with a little bit of water in it. She's pretty good at drinking out of it but we had to work to keep her from accidentally unloading it all over everybody around us. :)

And if you're looking at this picture and thinking, "What's wrong with that??" or "Good job!" then you must be a tubie parent too. :)

She'd been playing with it for a few minutes when she accidentally dropped it on the floor. Right then, a lady who was walking by saw her drop something and was kind enough to pick it up. As she reached out to hand it to me, it suddenly dawned on her that she was holding a giant syringe that a baby had just been sucking on. Her facial expression instantly changed from that of a happy nice person picking up what the baby dropped to equal parts shock, fear and disgust. Her face froze that way and she cocked her head to the side and opened her mouth a little, as if she was going to say something but nothing came out. She was completely dumbstruck. I smiled and thanked her and she turned and scurried back to her table. As soon as she was gone, Donny and I looked at each other and erupted into uncontrollable laughter. I still laugh every time I think about it. I wish I could have gotten a picture of her face and goodness knows what the poor woman must have been thinking! If I knew who she was, I would send her a thank you note because I think that was the best laugh we've had since all this feeding tube business started. Every time something like that happens, it helps to smooth over some of the rough patches we've been through. Laughter really is the best medicine.

So to the dear lady in the black and blue sweater who was traumatized by a syringe-wielding toddler at Applebee's tonight, I would like to both apologize to you and thank you for making us laugh and adding some humor into a part of our lives that's not always funny. :)

Shaving cream for sensory processing disorder

We got a rare opportunity to go to Raya's OT appointment without Kaida today. Sometimes I wonder if Kaida is getting in the way of Raya's therapy because she is right there playing with Raya & Miss Elizabeth the whole time, but then on days like today when she's not there with us, I can see how it can be beneficial to have Kaida there.
Elizabeth started out with doing Raya's "rubs and squishes", which is part of the sensory protocol. It involves doing long rubbing strokes down the arms & legs and then doing joint compressions to help increase body awareness. There's more to it than that, but that's the gist of it. :)
Then she got out the platform swing, and this was one thing that is much better done when Kaida is there. Usually when the platform swing is out, the girls race to see who can get on it first and they spend 15 minutes just swinging. Today, I was really surprised by how reserved and cautious Raya was when the swing came out. She sat down carefully on the edge of the swing with her feet hanging down so her toes would touch the floor, but wasn't really interested in having the swing move much. When Elizabeth got out some toys for her to sit on the swing & play with, Raya just wanted to stand on the floor and use the swing as a table for the toys. I guess Kaida brings out the daredevil in her. :)

After minimal success with the swing, Elizabeth set up a little obstacle course for Raya with the big mat. She had a box of animal blocks that Raya was very interested in and put the blocks at one end of the mat and the box at the other end. She had a big bolster under one part of the mat so that Raya would have to grab a block, climb over the "mountain," crawl to the end of the mat, get down, and then put the block in the correct shaped hole in the box. She seemed to enjoy it and this was one time where it was better not to have Kaida there. Kaida likes to do things like this FOR Raya instead of letting her do it herself.

After she was done with the blocks, we decided to get messy and brought out the shaving cream. A lot of kids with sensory processing disorder (and in Raya's case, feeding issues) don't like getting their hands messy. Raya is kind of hit and miss with getting messy. She's ok with certain textures of messy food and sand doesn't bother her, but light fluffy textures don't give strong sensory input and she's never quite sure how to handle them. Shaving cream at OT has never been Raya's favorite thing, but there was no crying this time so that's good. :)

I decided to just take her jeans off and let her play with the shaving cream in her diaper, which turned out to be a good decision since the first step she took in the shaving cream landed her flat on her rear right in the middle of it. :) Once she stood up, she backed herself all the way to the edge of the mat trying to get as far away from the shaving cream as she could.
Elizabeth kept reaching a hand out to her trying to coax her into it but she just looked at her as if to say, "Are you crazy, lady? I'm not TOUCHING that stuff!"
Eventually she did walk around a little bit and she used her finger to draw in it a little. Then she got fixated on trying to get it off of her feet and totally ignored Elizabeth and me. :)
She was patient with the whole experience and seemed to be "present" with it. Most of the time if a therapist is doing something with her that she doesn't like, she kind of tunes out and does whatever she has to in order to ignore what's happening. This time she obviously didn't like what we were doing, but she still responded to us most of the time and just took a more reserved and quiet approach to it.
In calorie intake news, She dropped down to 73 calories yesterday, which is kind of a bummer. Today she shouldn't have any trouble beating that because she's already had 60. It just depends on how much sour cream she wants to eat. If she follows the same pattern next week, then maybe we'll increase the dose of periactin and see if it helps her stay more consistent through the week.
And speaking of increasing the dose, Raya still seems to be doing very well with her increased dose of Neurontin. I mentioned before that I'd been thinking of taking her off of it since she'd been on the same dose for almost a year, but I'm so glad that we tried increasing the dose first to see if it helped. She is so much more content and seems to just be more comfortable overall, which carries over into mood & behavior. The biggest and best change I've seen though is that she's much more willing to give hugs and let me hold her. I don't think I have to explain why that makes me happy. :)

Wednesday, December 28, 2011

Anticipated decrease

Kids are so predictably unpredictable, aren't they? Here's how Raya's calorie consumption has gone this week:
Monday: 260 calories
Tuesday: 170 calories
Wednesday: 129 calories
I don't know if it's realism or pessimism but I had expected her to have a decrease after her big 260 calorie day on Monday. I was a bit disappointed with how little interest she had in eating a Nutrigrain bar this morning after doing well with them 2 days in a row. Thanks to my handy little digital kitchen scale that I bought yesterday, I discovered that she only made about 6 calories out of 120 disappear, and I'm not sure that they actually made it into her mouth. Such if the life of a tube-fed kid. Some days are great and some, not so much. Today her calories came from Chicken In A Biskit crackers and Greek yogurt and a tiny nibble of Nutrigrain bar.
BUT. I did do pretty well with the real food through the tube part today though. :) I made my grandma's minestrone soup for dinner and plugged the recipe into a website that allows you to calculate nutrition information, so I was able to put some of that in the ol' Vitamix to feed to my Raya girl. It was actually kind of cool. This year I'm making my first attempt at growing a winter garden. Some of what I planted has failed miserably (i.e. butternut & acorn squash, cabbage, pumpkin, & some of the lettuce) but some of it is doing really well. For the soup today, I used spinach, a turnip, and green beans out of the garden. There is just something cool about walking out the back door and picking something that's ready to eat. :)
Anyway, I put some of the soup in the Vitamix with some Gerber mixed grain baby cereal for added nutrients and calories and ended up with a thick orange goo that smelled good enough to eat. :) Here's what it takes to feed her when we do blenderized food:

I thinned it out with formula (for additional calories) and fed it to her. For as sensitive as her stomach used to be to volume and feed rate, she sure seems to have an iron stomach now. We syringe the food in rather than using the pump or gravity, and she throws a fit if I don't let her help, so sometimes it goes in pretty fast. (side note, I'm not one to give in to fit throwing but when it involves syringes full of liquified food that you don't want being squirted all over the kitchen or vomited back at you, it's a bad idea to fight back. :) When I give Raya blenderized food, I use a bolus extension because the tube is a bigger diameter than a regular extension so it's easier to get thick pureed food through it. The one in the picture is a 24" tube which makes it easier to keep it away from grabby little hands, but the 12"ones work fine for us too. After all the food is in, I flush the tube with an ounce or two of water. That's the part that makes me nervous because I'm always afraid I'm going to overflow her. :)
After all was said and done, she had 129 oral calories, 195-ish from the blenderized food, and the rest from formula. Not too shabby. We're getting closer to the goal we set in October of having 350 calories from food. Hopefully tomorrow she'll eat a little more of something. I need to find something else that she'll eat!
One of the questions I get asked quite often is how long Raya will have her G tube for. My response is usually a half-joking, "We'll be happy if she gets it out by the time she goes to kindergarten." Sometimes on days when she's having bites of a lot of food and eating her sour cream, etc, I start to think there's a light at the end of this feeding tube tunnel. Then on other days when she's not letting anything in her mouth, I can't help but wonder if my semi-joking kindergarten response will be attainable or not. It's hard to imagine yourself on top of the mountain when you're standing at the bottom of it. Raya is a little firecracker though, and I think that someday she will decide she likes to eat food and the rest will be history. :)
**Morning update: let's just say the vegetable-laden soup plowed through her like a freight train and there will be a couple extra loads of laundry today. Oh well, at least she didn't puke, right?

Tuesday, December 27, 2011

In which Brandis rambles about decisions and blenderized diet

I am happy to report that after 5.5 days on the new dosage of neurontin, there has been a notably positive change in Raya's mood and disposition. Whew. :) I had been really conflicted about where to go next with it but I think increasing the dose was the right thing to do.
I struggle more with some decisions than others when it comes to medical care and nutrition for my children. Some obviously have more potential for impact than others, and I feel like decisions about medications and feeding are the most significant decisions we have to make. It's hard for me to explain the reasoning behind some of our medication decisions. Sometimes all I can say is that we made the decision we made because we felt that we had exhausted our options, a doctor thought it might help, and we hoped he or she was right.
I'm learning that there are people that I can't talk about those things with because their own personal convictions about medication and vaccinations, especially in children, are so strong that they are unwilling and/or unable to see any viewpoint but their own. They will never understand the journey that has led us to the decisions we have made because it has not been their journey, and that's ok. I'm also learning to bite my tongue and take things with a grain of salt, and also to be humble in my own opinions as well. What works for one person/family may not be right for another.
Personally, I don't believe that there is anything inherently evil about the medications we use to control Raya's symptoms or the canned formula that has helped her to reach and maintain a healthy weight after such a turbulent first 18 months of life. I feel like we have done the best that anybody could have done for her. That being said, I also believe that there is a time and place for everything and that you can't keep doing the same things all the time and expect different results. Over time as things with Raya improve, we are able to set new goals and then make the changes that need to be made in order to reach them. Case in point: formula and food.
I never wanted to give her formula at all. I had breastfed my other 3 kids exclusively until around a year and had planned to do the same with Raya. I went to great lengths to avoid having to give Raya formula (i.e. eliminating all possible allergenic foods from my diet which left me with about 8 things I could eat). Even when formula became necessary to prevent her from starving, I kept my diet heavily restricted for 3 months while I kept pumping in hopes that she'd be able to tolerate breastmilk again at some point. That never happened and eventually I came to terms with it and was able to let go of the feelings of disappointment and failure that came with having a child who needed formula and a feeding tube in order to survive and thrive.
I don't remember exactly what that turning point was for me, but I think it was about the point where she started to climb the percentiles on the weight chart and caught up with some of the developmental milestones that had been a concern to us. When I realized that she was indeed thriving on formula, I stopped seeing it as the enemy and started seeing it as our ally.
Last February we made a long and difficult but ultimately successful transition from her amino acid-based elemental formula (Neocate) to a less broken-down peptide-based formula (Peptamen Jr.). We learned early on that any changes involving food had to be done very gradually or Raya's body would have a hard time handling them. Because we also had concerns about food allergies and intolerances, we proceeded cautiously with the introduction of "real food" into her diet. We started out small with a teaspoon or two of baby food through her tube.
Everyone has their own reasons for doing blenderized diets (real food liquified by a high powered blender and fed through the feeding tube) instead of commercially produced formulas. Some people do it because they like the idea if knowing exactly what their child is being fed and having complete control over it. Some kids that have had problems with vomiting and diarrhea seem to do better on the right mix of blenderized food instead of formula. Like I said before, I have no problems with formula and it truly did save Raya's life, but for a long time, I was curious about how Raya would do on a blenderized diet. However, after discussing it with her doctor, reading everything I could find about it and asking some other moms about how they do things with their tube fed kids, I realized that the time wasn't right for BD yet. At the time, she was still J tube fed, and the general consensus is that the intestine is not the best place to send real food if it's not being broken down in the stomach first, and Raya's formula was bypassing her stomach and going straight to her small intestine then.
Fast forward a few months and Raya is at a much better place. She's tolerating gastric feeds like a champ, experimenting with food, and doing great with bolus feeds (larger amt in a shorter period of time) instead of needing continuous feeds. She's introduced herself to a variety of foods either by asking for tastes of our food or having bites of things we offer her. The concerns over allergies have subsided since she's had negative allergy tests, so it's pretty much fair game now.

So where I'm going with all this is that while we aren't ready for a fully blenderized diet yet, we are moving in that direction at the pace we're comfortable with. For the past few weeks, we have been replacing one of Raya's 4 bolus feeds with real food. It's been a combination of counting every calorie she eats (a fun little challenge :) and filling in the remaining calories with concoctions of real food that I put through her feeding tube. For the most part, it hasn't been too difficult and is actually kind of fun, albeit more difficult than opening up a can of formula. :)
So far I've been doing it the easy way by using things like store-bought baby food and kefir but I've also put pureed turnip and beet greens in as well as pureed soup and vegetables. I'm happy about giving her food that we would eventually like her to eat anyway and equally happy that I can still give her the nutritionally complete formula that her body has grown so well with in addition to the blenderized food. Eventually maybe we will transition to a fully blenderized diet but for now at this point, doing a combination of food and formula is something that I am comfortable with and that gives us a lot of options and direction for the future.

And here's Raya's latest bit of mischief. She's a fast one, that's for sure. In the 30 seconds that it took for me to finish putting her pants on her and walk into the kitchen, she ended up back in the bathtub fully clothed. Such a stinker! :)

Monday, December 26, 2011

A Beautiful Christmas Indeed

I love Christmas. I can't say it enough, I just love everything about Christmas. We are so blessed to have 4 sweet children for whom the magic of Christmas is alive and real. They love to talk and learn about baby Jesus, and they get excited about Santa Claus. This year, Raya is old enough to get excited about everything too. We spent Christmas Eve with Donny's family and Raya spent quite a bit of time riding on a wooden rocking horse. Too bad she didn't ask Santa for one. :)
(I've been taking a vacation from the computer this week but hopefully I'll remember to add in pictures.) She wasn't interested in the cookies we decorated for Santa but I did look over at her once just in time to see her put a handful of strawberry frosting in her mouth. She liked it enough to have another scoop after that too. We stopped her just as she was putting some in her sister's hair though. :)
Christmas morning with a 2 year old is so much fun! She kept saying, "Wow!" to everything she saw. When we opened presents, she caught on pretty quickly to what it was all about and more than once I had to pull her out from under the tree and stop her from unwrapping other people's things. She'd pick something up and excitedly shout, "Waya pwesent!" All of the kids were excited about what they received but more importantly, they were excited about what they had picked out to give to each other. Cole had Raya's name this year so he made her a little game out of a formula can and some milk jug lids. It was small and simple and she loved it. Santa brought her a scooter so she can work on evening out her leg strength. Christmas morning was beautiful.
After the gifts were opened, it was time to get ready for church. Since it was Christmas, we gave Megan the day off and took Raya to church with us. Instead of the usual 3 hours, it was only 1 hour with no classes so we felt like it would be ok. Raya is not used to sitting through anything, let alone church. This is how she entertained herself:

You can't quite tell in the picture but her feet are tucked up in front of her and she's swinging from the back of the chair by her fingertips, WITH a fully-loaded backpack. Silly girl! :) There were some beautiful musical numbers during Sacrament meeting and she seemed to like them, but there was no way she was sitting still for anything so she and Donny spent a good part of the hour standing in the back of the room.
After church, Raya took a nap and we had our traditional Christmas dinner of various appetizers, sparkling cider, and Shirley Temples for the kids. Raya didn't eat much of anything yesterday. She had a couple of crackers but that was pretty much it. She wasn't interested in food yesterday and that's ok. Since we cycle her appetite stimulant (periactin/cyproheptadine), Saturday and Sunday are her 2 days off of it. We are definitely seeing a difference in her eating patterns when she's on it vs. when she's off of it so I'm feeling cautiously optimistic about periactin.
She started the next cycle of it today and I gave it to her in the morning to see if it would help with the insomnia & restlessness. She spent 2 hours and 45 minutes in her crib this afternoon but never went to sleep. Right as I was going in to get her up, she had disconnected her feed from the extension tube so whatever was left of her morning feed drained out if her stomach into her bed. In the rush of cleaning that mess up, someone (named Mommy) forgot to turn off the pump so when the next feed interval started, the pump fed the crib 225 ml of formula. Luckily I had left the waterproof pads in the bed when I took the first messy load of laundry out.
She's eaten pretty well today. She ate a strawberry Nutrigrain bar for breakfast, 5 tablespoons of Greek yogurt for lunch, and another 5 tablespoons of Greek yogurt for dinner. That adds up to 260 calories, which is a new PR (personal record) for her by 35 calories. We could very well be back to zero tomorrow, but for today, we are happy. That's a pretty good Christmas present for me. :) The very best Christmas present I've gotten though, aside from seeing the kids so happy and having such a great day together yesterday is this:

For the second time in a week, I've gotten to snuggle with a lightly vanilla scented sleeping toddler, and that is the best present ever! :)

Thursday, December 22, 2011

December GI Update

I must be getting soft in my old age or something because today wore me out. The big kids are still in school and Donny is off today and tomorrow for Christmas, so he took them to school while I tried to get Raya to eat another Nutrigrain bar. Tried being the operative word. This time she just wanted to smash it and throw sticky crumbs all over the floor I swept AND mopped yesterday. The nerve. :) She did eventually come back and eat half of it though.

After I ran a couple errands, we went to order Donny's glasses and then went to watch Ashtyn in her little class play. Raya lasted all of 10 minutes before she was drawing too much attention and I decided to leave. It was almost time to go to her GI appointment anyway so it was fine.

When we got to the clinic, Raya's insomnia had finally caught up to her and she was asleep. Since we were early we say in the car for a few minutes. I expected her to wake up any time but she didn't. She slept through me unbuckling the carseat, pulling her out, walking down the sidewalk with the cold wind on her, checking in, and sitting down to wait. I was shocked because this kind of thing NEVER happens with Raya anymore. When we checked in, the lady told me that Raya's doctor was running late, but the longer I sat there with my warm, sweet-smelling, soft-haired, sleeping Raya snuggled up on my lap, the more grateful I was that the doctor was behind schedule.

At one point I couldn't help but get tears in my eyes because Raya almost never falls asleep anywhere but in her bed or sometimes the car, and it's even more rare for her to stay asleep when we get her out of the car. On top of that, our doctor is rarely behind schedule. We're usually in the waiting room for 10 minutes or less. The stars aligned and it was a little Christmas miracle just for me. :) We snuggled for about 30 minutes, even when a herd of rowdy boys came in and were racing each other around the waiting room and climbing all over the benches.

Once we were in the room, she woke up and we got her weighed & measured. While we waited for the doctor, Raya colored and read books.

It was a pretty good visit. Her weight only went up by about 9 oz since her last visit in October, which isn't great. She's got a cushion though and it was still a gain and not a loss, but I had hoped it would be more. In my opinion, I think it's because we're now counting whatever calories she eats whether there's any nutritional value to them or not and subtracting them from her formula calories for the day. I've struggled a bit with feeling like it's ok to replace nutritionally complete calories with whatever she feels like eating that day plus some kind of oil or fatty calorie booster to get her up to her goal for the day. I get that there are reasons for it but it's something I have a hard time with, and that's another post for another day. :)

We went through our usual list of topics (meds, feeding schedule, poop, etc.) and she asked if there was anything out of the ordinary going on. I told her about when I checked to see how much was left in her stomach one day this week and 3.5 hours after the only feed she'd had that day, there was still 50% or more of the volume in her stomach. Motility is so... I don't even know what word I'm looking for. It can be slow one day and really fast the next. I think it's been on the slow side lately. Three and a half HOURS should be more than enough time for 7.5 ounces of easy-to-digest peptide based liquid formula to leave Raya's stomach. We've also been seeing more leakage (formula/liquefied food) from her stoma, which other moms have told me happens to their kids when motility is slow. We also need to change her Mic-key button soon and that might have something to do with the leakage too.

The problem is that there's really not much we can do about it. The 2 drugs we would most likely use to help her motility are
Reglan and Eryped (EES). Reglan is a "black box warning" drug with all kinds of nasty possible side effects, and EES is an antibiotic. She's been on both of them before with no visible results. Her doctor and I both agreed that unless she starts vomiting again, the motility drugs aren't worth the risks associated.
She also reminded me that motility can be affected by viruses, and that Raya could have had something without us realizing it, and that could have slowed things down. That just reaffirmed to me how important it is for Raya to stay healthy. I know it sounds dramatic but a stomach virus that would make a healthy kids sick for a couple days could be far more serious for a kid with Raya's medical history. Her vomiting could start again and not stop when the virus is gone, or it could cause her gut to shut down altogether, or she could be totally fine. There's no telling what could happen. This is why we aren't taking her anywhere we don't absolutely have to. It's not personal, we're just trying to do what's best for Raya.

One of the other things we talked about is Neurontin. It's a medication Raya's been on for a long time and because she's been on it so long, I've been wondering if keeping her on it is the right thing to do. She was diagnosed last year with "visceral hyperalgesia," which is fancy medical talk for hypersensitive gut. The motility specialist that evaluated her last year felt was responsible for at least some of the vomiting she experienced for such a long time. Neurontin is an anti-convulsant and is used for nerve pain, and it has been a good med for her.
Parrt of me feels like if she's been on it for over 18 months and we haven't increased her dosage since January, maybe she doesn't need it anymore. On the other hand, the dose she's on is still considered a moderate dose for her weight, so that could be the thing that's keeping her body from overreacting to sensations in her gut and keeping her from vomiting. It's a tough call. Ultimately, and in light of some of the symptoms she's had lately, we decided to keep her on it, and we're going to increase her dose to see if things improve. If there isn't any change, we'll reconsider taking her off of it. The prospect of weaning heer off of another heavy med isn't very appealing to me after the way it was the last time but it has to happen sometime. We'll see what the next few days bring.
We plan on continuing the periactin but I'm going to try giving it to her in the morning instead of in the evening to see if it helps with the insomnia. She was surprised to hear that it was having that effect on Raya but it doesn't really surprise methat much. Raya doesn't like to follow the rules. :)
That was pretty much it for this visit. Oh, but we did talk about how much we both miss our favorite nurse. :( We love you, Rebekah! :) A couple of the other nurses have been really sick and the new ones haven't been able to get all of the training they need so things are kind of a mess right now. I'm glad things have been calm enough with Raya that we haven't needed any special attention.
In other news, I've decided that we don't need to see the genetics specialist next month like we're scheduled to. Long story short, I don't feel like there is any indication that any of Raya's health problems have been caused by anything genetic, and none of her labs have ever been abnormal enough to indicate a metabolic disorder. The neurologist is out until after the new year but if I don't hear from her that there's any reason to see genetics, we'll save ourselves the trip.
She looks pretty perfect to me! :)

Wednesday, December 21, 2011

Fun with Periactin

Before Raya broke her arm on Thanksgiving, we had started her on a medication called periactin (cyproheptadine). It's an antihistamine but it's also used in children with feeding disturbances to help simulate appetite. When it was first prescribed to her, I was told that it would cause drowsiness. (Is it terrible of me to admit that I was totally ok with that?) I didn't think much or expect to see any real side effects though, and we didn't notice any on the first course of it. It did seem to give her a little more desire or capacity to eat a little more at a time though.
Then she broke her arm. She wanted to eat her precious "ta-TEEM" (aka plain greek yogurt/sour cream) but she lacked the ability to hold the spoon or feed herself, let alone do it without getting smelly sour cream/yogurt on her cast. Since she wouldn't let me help her, I decided to stop giving her periactin until after the cast was off. The whole 4 weeks she had it, she didn't eat much of anything. She would eat one or two tablespoons of greek yogurt and maybe a couple of crackers but that wa it.
The cast came off Monday and I gave her the first dose of it that night. On Monday she ate 5 tablespoons of the yogurt and 1/4 cup of dry cereal. On Tuesday, she ate a little more of the dry cereal and a whopping 8 tablespoons of greek yogurt, i.e. 1/2 cup!! I was rather excited about that. She didn't take a nap yesterday but lately that's not totally abnormal. But... Did I mention that the other possible side effects of periactin are insomnia and restlessness?
She went to bed at her normal bedtime and was asleep by about 6:30. Then she woke up around 10:30 and was up until at least 1am when I finally fell asleep. When Donny left for work at 5:30, she was laying in her bed talking so who knows how long she actually slept. It was definitely less than her typical 11 or 12 hours.
This morning she ate 1/4 cup dry cereal for breakfast and then was so crabby and tired that I put her in bed for her nap at 10:00 instead of 10:30. At 11:00, she was still singing and talking so I changed her diaper and tucked her in again. A few minutes later I had to go in the room to get something and she had taken the pump out of the backpack and twisted it around the bars of the crib. Oh and she ripped the voice box and some wires out of the talking baby doll that was in her bed. I tucked her in again but she still didn't go to sleep. Finally at 1:00 she started yelling "MOMMY!" and when I went to get her, this is what I saw as I walked through the door:

She was stuck. She was hooked to the pump, she had the cord tangled all around her, and she had a huge pile of blankets blocking her from being able to drag the IV pole out of the room. It was kind of funny side from the fact that she needed a nap. :)
The good news is that she ate an entire NutriGrain bar this evening, which is 120 calories in one sitting. She's done that a couple of times before but then had lost interest in them so I'm excited that she ate it. I hope that the periactin will be a positive thing for her and keep her interested in food.
Every time I turned around today she was climbing on something, getting into something, or dumping something out. This evening she was running around like a wild woman again and disappeared into our room. When she came out, she had my makeup brush in one hand and Donny's bo in the other:

So silly and such a pill!

Monday, December 19, 2011

It's gone!!

The cast is GONE!! Hooray! :) My computer is only semi-functioning at the moment so cell phone pictures are all I have but here's the events of the day:
In the parking lot of the doctor's office

If only the picture showed just how beat up and dirty it really was. :)

Dr. Raya reviewing her own chart while we waited for Dr. K. :)
And the inside of the cast was pretty disgusting, just as I had suspected. There was a lot of sand, dirt, and other unidentifiable nastiness in there.

Her poor little arm & hand had so much dead dry skin on them and it must have been really itchy because she had scratched all the way home from the doctor's office and it was all red & puffy when we got home.

More dry dead skin & you can also kind of see the little blistery spot on her thumb. She had those on 3 or 4 of her fingers so it was definitely time for the cast to come off.

The first thing I did when we got home was take off the shirt with the tight long sleeves that I put on her yesterday & then couldn't get off again because the sleeve was too tight to get over the cast. :) THEN she got to take a nice, warm bath and get BOTH arms wet. When she first got her right arm wet, she turned and looked at me like, "Oh, no! I did something naughty!" but then I asked her if it felt nice and she smiled and said, "Yeah!" She was in heaven!
After the bath, I ended up putting the dirty shirt back on her so she could have some of her precious "Tah-TEEM!" (sour cream, i.e. plain Greek yogurt) She may have been converted to left-handedness because she wouldn't use her right hand to hold the spoon. :) The first thing she did though was put the spoon down, pick up some yogurt, and smear it ALL over her right arm. She must have been making up for lost time. :) Then she ate 5 tablespoons of it!

All in all, it was a lovely day. I LOVE the clinic that we got the cast taken off at. It's the same place we see her GI and neuro doctors so we're very at home there. Everybody is nice, it's clean, and we just love it. We hadn't met this ortho doctor before but I liked him, and here's why. He was looking at the paperwork I had filled out and asked me to clarify why we had gotten it x-rayed and casted at 2 different places & then were having the cast removed at a 3rd. I told him that we'd had it x-rayed at the urgent care in that clinic, then we had an appointment with the ortho at the CP clinic so they just casted it there. As I was telling him that she has CP, she was more or less dancing on a chair, so that statement was followed up by me saying, "I know it's hard to believe, but she DOES have the diagnosis." She sat back down and he took her shoes off and tested some of her reflexes & tone in her legs, and as he was doing that, I again was feeling the need to explain & justify everything. I told him that she's had increased tone & reflexes in her legs & that she gets some tightness in her hip flexors, calves & feet. To my pleasant surprise, his reply was, "Yeah, I can tell that there's definitely some tightness and her reflexes are a little immature." THANK YOU, Dr. K, for validating my daughter's diagnosis and not making me feel like I have to try to convince you! To make me feel even better, after we had looked at the x-rays of her beautifully healed fractures and were walking out, he watched her walk and said, "You know, she does look really good." And when he said it, instead of making me feel like he was saying it out of doubt, he said it like it was a compliment. I told him that we've worked really hard in therapy and that she's had really good results. So once again, I left THAT clinic feeling good about everything. I am SO very grateful for doctors who make you feel good about what you have done and make you feel like you're doing something right with your complex child.
Back to her arm, she was so cute when we went to the x-ray room. When they had x-rayed it the first time after she broke it, they had me hold her on my lap & hold her arm still and that was what we were going to do this time, but before we could pull the chair over, she had walked right up to the x-ray table and laid her arm right across it. The x-ray tech said, "Well, I guess we can do it that way instead." so all I had to do was squat down next to her and make sure her arm didn't move. She held perfectly still and was such a big girl during her x-rays and I was proud of her. She is such a tough little girl and the older she gets, the more I can see how the experiences she's had in her first 2 years of life are going to make her so much stronger and help her to become a better person than she would have been otherwise. Sometimes I look at each of my kids in situations like that and I get so excited to see what great things they will do as they grow up.

This Thursday, Raya has an appointment with her GI doctor. Since we missed her weight check right after she broke her arm, this is the longest we've ever gone without seeing her or having a weight check. It's been 2 months since our last visit with her and I'm a little scared to see what the number on the scale will be. We shall see. :) I've been curious lately about Raya's gastric emptying & whether her stomach is emptying as quickly as it should so today I did a little experiment. I gave her the first feed of the day and then 3 1/2 hours later, I unclamped the tube & let her stomach drain into a bottle to see how much was there. I had fed her 225ml (about 7 1/2 oz) and drained out 110ml, so almost half. Granted there was some stomach fluid mixed in there, but it was definitely a lot of formula too. I don't know if it's necessarily bad that half of the volume of her feed was still there 3 1/2 hours later, but that seems like a lot to me, especially since it was a liquid formula feed with no solid food in it. It's been a year since she had a gastric emptying scan and that was normal, but both times she's had those done, they only used one and then 2 oz of formula for the scan and I felt like that wasn't enought to give an accurate representation of her typical gastric motility, but what do I know. :) Anyway, it's something I'm putting on my list of things to talk to the doctor about. On the bright side, she's not puking so at least if the formula's hanging out in her stomach too long, it's not making her puke. And on that note, it's time to go give her the night doses of her meds, including the appetite stimulant that we had started shortly before she broke her arm and then stopped until the cast came off. Now it's off & we can make her hungry again (hopefully! :).

Sunday, December 18, 2011

T minus 15 hours

In 15 hours, the cute little purple cast will be gone and Raya will be getting a good scrub in the shower!

(outfit compliments of Ashtyn :)

Wednesday, December 14, 2011

Clean cast, yeah right!

Asking a 2 year old (or their mother) to keep a cast clean is ridiculous.
It's dirty all the time whether she's eating sour cream:

Or sand:

Only 5 more days until it comes off! :)

Tuesday, December 13, 2011

Never ask what's next

There are certain questions you just don't ask, like "What's next?" I never ask what's next. It's like saying, "I don't see how this could possibly get worse" which inevitably precedes finding out how it could get worse. I learned a long time ago that praying for patience always leads to opportunities to develop patience, so I don't do that anymore. :) I also never ask what Raya will do next, in part because I don't want to know, and mostly out of fear that she will continue to outdo herself.
She seems to be on a mission to outdo herself this week. Hopefully she won't because I'm already tired. :) We always say that she's lucky she's cute because it's hard to get upset with her when she smiles at me and says, "Hi Mommy!" as I'm plucking her off the kitchen counter. Here she is chewing a piece of gum she found in the cupboard:

Last time I took a shower, I didn't dare leave her running amok in the house while I couldn't do anything about it so I bagged her casted arm and let her join me so she couldn't get into trouble. That resulted in the cast getting wet so today, I decided to chance it and leave her in the living room with Kaida. When I got out of the shower, Raya was emptying the contents of the bathroom linen closet (which ironically contains no linens) and had just finished dumping out a baggie of Q-tips, two of which were sticking out of her ears. She excitedly exclaimed, "See, Mommy! See! Ah-EARS!"

Yesterday she surprised me by taking a nice long nap/rest in her crib for about 2 1/2 hours. It was heavenly. :) Then I heard her screaming my name in a panicky sort of way and when I went to get her, she was rubbing at her nose. It was kind of dark in the room so it looked to me like one nostril had crusted over & was a little bit bloody so I got her out so I could see it better. Upon further examination, I realized that it was not, in fact, crusty or bloody. Nope, she had stuck something up her nose. I don't know where she got it or how she smuggled it into her bed, but she had one of these up her nose:
At least it was something easy to remove. :)

Speaking of removal, I decided that I REALLY didn't want to go back to the clinic that casted her arm when it's time to take it off next week so I called the clinic we like and had the appointment moved to their clinic instead. Whew. 6 more days and we'll be done!

And last but not least, I realized this morning that it was one year ago today that Raya and I flew to Ohio to have motility testing done. That was her last hospitalization and I can't believe we've gone a whole year without her having to be admitted. I'm not naive enough to believe that my child, who is still 90% tube fed, will never have to be admitted again (not cynical, just realistic) but I am SO grateful to have closed the door on that chapter of our lives and moved on to a much less stressful, frustrating, and confusing chapter. (well, not to say that trying to teach a 2 year old to eat isn't frustrating, but I digress) Anyway, SO grateful to be where we are now instead of where we were a year ago, literally and figuratively!

Saturday, December 10, 2011

A smile in the ball pit

When we first started talking about OT at Raya's first neuro appointment, I totally didn't get it. I vaguely remember the neurologist mentioning that she thought Raya would benefit from OT, but she didn't write anything down or make a referral or anything, and I was trying really hard to remember the BIG things we'd talked about so that kind of went out the window. Not to mention that at the time, Raya wasn't on her secondary insurance through the state and didn't have OT as part of her early intervention therapies (we hadn't even started the EI therapies yet at that point) so it would have been yet another out-of-pocket expense. There were a LOT of expenses then since we were seeing GI every couple of weeks & paying higher Rx copays. I didn't understand how much of a difference OT could make and I felt like I was pretty much maxed out on appointments then so I didn't pursue OT for her.
Anyway, at the appointment when the official CP diagnosis was made, her neuro brought up OT again and kept talking about sensory processing disorder, which I didn't really know anything about. When her services moved over to the Department of Developmental Disabilities instead of Early Intervention, we started OT. I still didn't quite understand it then. It's taken me almost a year, but I am finally seeing the connections between some of the activities we do frequently and the issues Raya has.
Sometimes we play with toys as a distraction while we're doing things she doesn't like. This applies more to our PT appointments (during stretching & soft tissue work which she hates) but sometimes she needs a distraction in OT as well. Other times Raya plays with a certain toy because it motivates her to do things that are difficult for her and also offers a welcome distraction so she can focus on something she likes doing to take her mind off of whatever she's doing that's difficult or unpleasant. As she's focusing on things that she likes while doing things that are difficult or unpleasant, she's also learning to cope with the sensations that her brain doesn't process correctly.

For example, on Friday there was a toy that Raya had been playing with through most of her appointment. It was a plastic case with different shaped animal blocks in it, and since it kept her attention pretty well, Miss Elizabeth more or less set up an obstacle course for Raya and put the blocks at the end of it. Raya would climb over mats to get the block and then climb back over to bring them to me and put them in the case. The blocks were the motivator and at the same time, they gave her something to focus on to keep her from losing interest in climbing over the mats. After she had gotten really comfortable with that, we went to the ball pit.
I don't remember how long it's been since the first time we tried putting Raya in the ball pit but it's been several months. We've tried SO many times to get her in it but she's always been terrified of it. It's complete sensory overload for her. They surround her body, make noise when they move, make it hard for her to move, and it's just a really difficult situation for her. This time, she did really well with it. Elizabeth put the case at one end of the pit and the blocks on a chair at the other end and then helped Raya go back and forth to take the blocks to the case. And for an added sensory experience, Kaida was flopping around in the ball pit the whole time. It was very helpful. :)Raya stayed right at the edge and was hanging onto the rail for dear life the whole time, but she kept going. When you find the right motivators and have the patience to allow things to move on their schedule instead of trying to make them fit the timeline you have in mind, great things start happening. :) (now somebody please remind me of this in 6 months when all she wants to eat still is sour cream :)
I think having long pants, a shirt and a jacket on helped a little because the balls weren't really touching any skin except her hands & feet. She was still uneasy but she had a task to focus on so she did it. No sooner had she placed the last block in the case than she said, "Ah-out." and tried to climb over the side. :) She's been doing much better with telling me she's done with something instead of freaking out like she used to.
Well, that was long & rambly as usual, but my point is that OT is just plain amazing. We love OT & we love Miss Elizabeth and we love days like Friday when we see progress like getting in the ball pit without a meltdown!

Wednesday, December 7, 2011

Busy girl

It's amazing how a kid can change so much so fast. Raya has made all kinds of leaps & bounds with talking and just seems so grown up lately. She makes me laugh all the time, even when she's being a pill. :) She's a total parrot lately. She repeats EVERYTHING she hears. Last night at dinner, Donny said something to one of the kids not thinking that Raya was even paying attention, and she repeated it back word for word. You still can't understand most of what she says unless it's in context but she's working hard at it.
Some of my favorite Raya words lately are:
bebbit= blanket
tubie :)
I luh loo doo!= I love you!
Diddy= Ashtyn (we call her Tinney so that's how Raya says Tinney)
Bubba= Cole
Deeda= Kaida
foh-lah= formula
dah-TEEM!= sour cream (still her favorite food :)
bee-bee Dee-us= Baby Jesus
Be nice, Mommy!
You're mean, Mommy!
dammit= stomach (which is why we encourage her to say tummy instead of stomach :)

She's been pretty creative lately with entertaining herself. She loves to get into her formula cabinet and stack the cans up as high as she can reach:

Yesterday was a doozy of a day for me (see here for explanation) and I had to take care of some things upstairs that I didn't want the girls to get into (vomit, need I say more?) so I left them downstairs while I cleaned it up. When I came back downstairs, I found Raya like this:
She had pushed the chair ALL the way across the kitchen, climbed up onto the counter, opened up the cupboards, and found a bag of candy left over from a birthday party a couple months ago. She wasn't eating any of the candy but she was having a grand time unwrapping it all. She did, however, have a big wad of gum in her mouth. She seems to really like "chewing" gum. Too bad I don't believe in giving 2 year olds gum. :) (just ask my 8 year old who still rarely gets to chew gum :)

She's also had her little bouts of the "terrible twos". She's a little bit sassy lately and she sometimes pouts when I tell her no. Then she tells me, "You're mean!" or "Be nice!" and I try to keep a straight face. :) Yesterday we went to the craft store during naptime (Mommy HAD to get out of the house!) and Raya got mad at me for not letting her hold the things I was buying, so she cried and screamed the whole time we were at the store.
It was fun. Especially the part where every time we came around a corner, everyone simultaneously turned to stare at us. It was harder to ignore the stares than it was to ignore Raya's screaming. 
Then at one point, she was leaning over to yell at me and accidentally whacked her cast on the shopping cart and it made a really loud noise. She looked at me for a second and then started banging the cast against the cart over and over to spite me. Then a couple minutes later she held up her casted arm and said, "Arm hurt" *sniff sniff*. Sorry hun, no sympathy there.
Raya wasn't the only kid screaming though. We were standing in line to pay and another little girl behind us in line was screaming too. The lady a couple people ahead of me in line started talking to the cashier and with a snide look on her face said, "Sheesh, somebody's not happy. Sounds like it's naptime. Why do parents even bring their kids to stores when it's naptime??" AAAAAAAAHHHHH!!! I wanted to THROW my SHOE at her! Really, lady?!? Do you not get it that sometimes things have to be done whether your child is crying or not and that moms don't enjoy listening to their kid scream any more than anybody else does?? Lucky for her there was another customer in between us or else all of the pent up frustrations of my morning would have been unleashed on her judgemental self. :)
Right before we left the store, Kaida did something to Raya's broken arm that made Raya cry really hard and by the time we walked outside, Raya's whole face, head & neck were covered with awful-looking red spots:

Thankfully once we were in the car, she fell asleep and slept for over 2 hours. Whew. :)

I've been doing better on Raya's feeding plan that her doctor & I worked out at our last visit. You wouldn't think it would be that difficult to swap out 350 calories a day of formula for real food, but it takes a lot of planning and calculating. It can be tricky to come up with a blend of foods that's high enough in calories but low enough in volume that she can take it all in at once without throwing up. I've also been doing better with remembering to get all her extra fluids in. Now that we're not running the fluids through the pump, I have to actually think about it and remember to give it to her.
Bless her little heart, I sure do love this girl and all her mischief! :)
(climbing in the shelves to try and reach the plug for the Christmas lights)

Sunday, December 4, 2011

Getting on just fine

If it wasn't for the cute little purple cast on Raya's arm, you'd never guess that she's got a broken arm these days. The little turkey is doing all kinds of naughty things, like climbing on things, falling off of things (sometimes on purpose), hanging from things, putting sour cream on her cast, and so on. I'm SO thankful that it's not hot outside while she's casted. (We had our share of that kind of smelly back when she had her DOC Band! :) Here she is hanging from the table (with the splint, sling & her elbow at a 90 degree angle) about 5 minutes before we left to go to the orthopedic clinic last week:
(her feet are on the floor in the picture but they weren't half a second before I snapped it!)

A couple days before that, I had been talking to my grandpa on the phone and was telling him about Raya's arm being kept at a 90 degree angle in the splint and I jokingly said something to the effect of, "Well, on the bright side, at least she won't be swinging from the kitchen table for a while." and he said, "Oh, I wouldn't say things like that, Brandis. Before you know it, she'll be hanging like a monkey by one arm!" And wouldn't you know it, the next day I was just about to put dinner in the oven and as I turned to open the oven door (which was heated to 450 degrees), guess who was hanging by one arm from the oven door handle.

She is SO busy and active lately. I keep using the word "crazy" to describe her and I need to stop saying it in front of the other kids but she is SO all over the place non-stop ALL THE TIME lately. And yes, I realize that she is a 2 year old and 2 year olds aren't exactly known for being calm. She's not my first 2 year old and with Raya, it's different. She has no fear, no sense of danger, low pain response/high pain tolerance, and an energy level that would make one think we were pumping straight sugar through her tube. 
I have my theories about why Raya is SO busy these days but a lot of it has to do with sensory processing disorder. She craves strong sensory input and seems to feel the most comfortable when she is busy. She doesn't like to be still, although she is getting better at it in the right settings. Lately she likes to watch me play Angry Birds on my cell phone so if I ask her to lay down with me and play Angry Birds, she'll sit for a couple of minutes before she has to get down and run around again.
On Tuesday, right after we got done at the orthopedic clinic, the kids' school was having a fundraising night at a pizza place so we went straight there from her appointment. After we'd been there for a while, I needed to get something out of the car so I went to find Donny to get the keys, and what do I find but Raya standing on a skee-ball machine right next to Donny who was playing a basketball game. He turned around to hand me the keys and literally 3 seconds later, he turned back around and found Raya like this:
 INNNNNNNN the basketball game! That was an exhausting evening trying to keep her out of trouble. Then there was the obligatory dousing of all the children with hand sanitizer when we left. Places like that gross me out. Having Raya has kicked my germophobia up a notch. That's probably an understatement. :)

On another note, we've been decorating for Christmas this week. I can't get enough of Christmas decorations. One day Kaida and I were sorting out everybody's ornaments while the kids were at school and Raya was taking a rare but much needed nap, and I came across one that made me laugh out loud. It's the Baby's First Christmas ornament that I bought for Raya. What's so funny about it, you ask? See for yourself:
The girl who won't eat got a spoon ornament for her first Christmas. Both ironic AND amusing. Oh, if only I'd known what we were in for just a few short weeks after I bought this! I suppose sometimes it's best that we don't know exactly what's ahead of us. I've been thinking about this a lot today. I believe that God has a vision of what He wants us to become, and He knows what it will take for us to become that best version of ourselves. In order to help us achieve our potential, He allows trials to come into our lives that will shape specific facets of our character. Some of those trials will be small, and some of them will make you feel like you are being shaken to the core, but one thing will always remain the same: God is in control. He can see all things from beginning to end, and when we get to a point where we need a higher perspective to help calm us and see us through, all we have to do is ask for it.
In a way, it's like being in a maze where there are high walls that prevent us from seeing anything but what's in front of us. If we try to navigate our way through it alone, ALONE is exactly what we'll be. If we ask for help, God will guide us through it and help us to become what we are meant to become. Sometimes when we forget to ask for that help and perspective and we find ourselves feeling lost and frustrated and alone, which is exactly what Satan wants.
In the words of a good friend, some days, there will be sorrow and sadness but it's okay because tomorrow will be joyful. All of the difficulties of life are a part of life but they don't have to BE our life. As hard as it may be sometimes, finding joy in life is possible even when we are facing hard times. Easier said than done, but not impossible.

I've recently come into contact with a couple of other "tubie moms" who are still in the middle of their storms. They're still in search of that magic diagnosis and still reeling from the traumatic start they've gotten to parenthood. Life for them is uncertain and scary. Reading things that they've written throws me back to the way I felt at different points in Raya's life. Now that we're out of that phase of treating the symptoms and get her stable while trying to figure out what was causing all the problems, life has slowed down enough for me to realize that there are scars from some of the things I've had to see her go through and things I've had to allow to be done to her or put her through myself. In the moment, you can't worry about that, you just do what you have to to get through it but there comes a point when you have to make peace with the past and let things go. Now there are little moments that help me to let go of some of those things and I guess for lack of better word, heal some of the scars that I didn't realize were there. Tonight, I was laying on the couch and Raya climbed up next to me and laid down. Then she stuck her fingers in my ear and said, "Mommy ear?" and demanded that I play Angry Birds on my phone. And I did because it meant that she stayed snuggled up next to me. :) 

To all of you moms who are still in the middle, I hope you will have enough sweet moments to help you get through all the tough ones you're facing, and know that life won't always be the way it is right now.

Tuesday, November 29, 2011

Pretty purple cast and an ortho consult

(Note: if you don't want to read about a downer of a doctor's visit, feel free to skip ahead to the pictures at the end.)

Raya had her consultation with the orthopedic specialist today. We've had it scheduled for about 3 months now and I was glad to finally get it over with. It was at the clinic where she's seen for cerebral palsy, and for many reasons I dislike going there. It's really far away (like about an hour each way, longer if there's traffic) and the clinic is dirty and we don't really get to choose our appointment times. (at least not for the first visits with the different specialists.) They just mailed us appointment cards and we showed up when we were told.

Okay, so here's where the frustrating part comes in. Raya's CP is very mild. I get that. We've always known that. I've also said before that if she didn't actually have it, her doctor wouldn't have diagnosed it. Doctors can't just make up diagnoses for patients. We also know that she has made great progress with physical therapy and occupational therapy. The OT has greatly improved how well she tolerates PT, so the PT is more productive and she has made a lot of progress. I said going into this appointment that this would be another one of those doctor appointments where they walk in, look at her, and say, "Aaaaand why exactly are you here??" And that's pretty much how it went.

First, we went into the exam room and since it was our first visit to the ortho clinic, a physical therapist came in to ask some questions and look at Raya a little. The questions she asked didn't bug me as much as the way she asked them. She asked me if Raya can walk and when she started walking, and I told her I couldn't remember exactly but that it was around 1 year. Her reply was to grab Raya's foot (that Raya was sticking out at her) and say, "Well you're not a typical CP kid then, are you! Typical CP kids don't walk at a year." Then she asked me some more questions and had the same type of responses. Then we had to talk about the fact that Raya has very little chance of qualifying for preschool, which I am well aware of. 
As we talked, her demeanor kind of changed and then she said, "Who exactly diagnosed her with CP and on what basis was the diagnosis made?" She was filling out a form and asked me the names of Raya's therapists and then asked, "She's not with DDD, is she?" (DDD = the department of developmental disabilities) And then, "She doesn't have ALTCS, does she?" (ALTCS = state long term care insurance for people with developmental disabilities) Then when I replied that she does have both of those, she didn't make any effort to hide her surprise. It really irritated me because A. If she wasn't DDD/ALTCS, we wouldn't even BE at that clinic, B. If you want to know about her diagnosis, ask her neurologist instead of putting me on the spot with all kinds of questions that I don't know the answers to, and C. The child you're seeing right now is the child who has had a full YEAR of therapy since the diagnosis was first made, so yes, she does look great now but it's because we have all been working hard to help her improve. Oh, and when she asked me what therapies she gets & how often, I told her she has PT but we just decreased it to every other week and she said, "Why is she only getting it every other week?" Um, weren't you just the one telling me how perfect my kid is and that you don't even know why she was diagnosed with CP and now you're asking me why she's ONLY getting PT every other week?? I've always felt that Raya being approved for DDD/ALTCS was the answer to many prayers, so how am I supposed to justify a blessing from God?

 So basically, one doctor tells me my kid has CP and we start therapies (which she DOES need) and then we go through the grueling process of applying for & getting approved for ALTCS, and THEN when we show up to the appointments at the CP clinic that we didn't even ask for, suddenly I'm on trial having to justify to someone I just met why we deserve to be there. I felt like a deer in the headlights or like I had shown up to take a big exam without studying for it. Of course now that I've been home for a while, I can think of all kinds of brilliant answers & explanations for everything. We see things at home that might not be totally obvious in the 5 minutes that a total stranger spends with Raya in an exam room. I hate being put on the spot and it was kind of embarrassing. UGH!

Then after that, a nurse practicioner came in and it was a slightly less irritating version of the same conversation minus the part about acting shocked that she was DDD/ALTCS. She was more polite with the way she asked me questions & talked to me. She said she'd have to ask the doctor if they could do Raya's cast or not since it wasn't related to CP and at that point I didn't care if they did it or not, I just wanted out of there. She watched Raya walk a little and once again I stumbled through my explanation of what our observations have been with her legs & feet and then she said to wait and the doctor would be in.
That was the point at which Raya's meltdown started. Did I mention that Raya had decided to have a poopy diaper instead of taking a nap? Then she had a feeding therapy session and we had to book it to drop Kaida off at a friend's house and get to the appointment clear the heck in Phoenix, and she never went to sleep once. SO by 3:30 or so, she was done. Luckily when the doctor walked in, she put on her charm again.
And lucky for me, the doctor didn't make me feel self conscious about even being there. He asked what concerns we have and I told him that the only real effect we see of the CP is the increased tone in her legs and that she tends to get really tight in her hip flexors & in her lower legs, which ends up making her feet roll out a little so she walks bowlegged. We recently decreased her PT down to every other week instead of every week, so now after about 9 or 10 days of no PT, we start to see the tightness in her legs. It also gets worse when she has an increase in her GI symptoms for whatever reason, as does her torticollis.
His reply was pretty much that he doesn't think we'll need anything from the ortho clinic as far as bracing or orthotics or anything since her tightness improves with stretching & exercise. He said that they COULD do bracing, but that it would probably just annoy her and it doesn't do anything to improve the problem, it's just like putting a band-aid on it. I was totally fine with that response. I had already talked about that with her PT so that's what I was expecting. I appreciated him not talking to me like the other 2 did and not making me feel stupid for bringing her there.
I don't know if I should even be saying all this but I will anyway. Here's another reason why this is all frustrating for me. Every time Raya makes progress with her non-GI related issues, it puts me in a position where I feel like I have to beg and plead and justify the therapies she's getting. The scary part about it is that sometime, she will get to a point where they will no longer consider her as having cerebral palsy. Of course this is a good thing, but if they take away that diagnosis, she will no longer qualify for her long term care insurance. That means she won't get the OT or PT anymore, and she won't have her secondary insurance that picks up any costs that our primary insurance doesn't cover. I haven't added up how much that's been this year but our out-of-pocket costs last year were about $10,000. Next year, our primary insurance is reducing the really great coverage we've had. If we didn't have Raya's secondary insurance, our portion of her feeding supplies alone would be over $500/month. I don't care who you are or how much money you make, an EXTRA $500/month PLUS everybody else's expenses and all her copays & prescriptions is a lot of money. That's about how much we spend per month to feed the other 5 of us put together, and that doesn't include any prescriptions, copays, or anything else. So yes, there is a financial aspect to it and every time we have an appointment that has to do with CP, it stresses me out because I'm constanly afraid that somebody's going to yank the rug out from under us. Finances aside, losing OT would be horrible for us. It has made her a different kid. I don't know what it would do to her feeding therapy since she would still qualify for that through early intervention, but things have changed a lot with that too so I don't know if she'd even be able to get FT every week through early intervention. So now you know a lot of our personal business, but I think this is one aspect of having a child with "special needs" (if you want to call it that) that people don't talk much about so there you have it.

On a lighter note, the orthopedic doctor was extremely nice and went ahead and had them cast Raya's arm even though they weren't really supposed to do it since it's not related to CP. I had a feeling that's how it would be and I knew I should have just made a separate appointment but I was hoping to avoid an extra appointment. Well, anyway, they took off the splint and made her a cute little purple cast:
She's showing me her pretty purple cast and saying, "See?!"
She cried and screamed and tried to get away from me the whole time they were doing the cast. One girl was holding her elbow and fingers and Raya wouldn't hold still so it was hurting her. She had a big bruise on the inside of her wrist but the swelling was pretty much gone. Once they got done and it dried, she couldn't wait to get into her stroller (which she had been screaming at me for not letting her push around the hallway 10 minutes earlier) and said, "Ah-wah doe HOME!" (I want to go home!) And I told her I did too.
She's feeling better now though and she's very proud of her cast. And her G tube. She's been showing it to everybody lately. :) The splint and cast haven't slowed her down one little bit. Today I caught her hanging from the edge of the kitchen table again even though her arm was stuck at a 90 degree angle in the splint, and tonight at the kids' Chuck E Cheese school fundraiser, the stink pot even climbed up INTO the basketball game that Donny was playing.
We have to go back in 3 weeks to get the cast off & get it x-rayed again and I'm already dreading that appointment. After that, we don't have to go back to that clinic until January when we see the genetics specialist, which I'm seriously considering cancelling because I'm tired of appointments where I feel like I'm having to justify even being there. Then we don't have to go back until her annual CP screening in September. Hallelujah. Until then, we'll stick with our good ol' GI visits. At least those usually leave me feeling like we've accomplished something and everybody's nice to me there. :)

Monday, November 28, 2011


This weekend I saw a short documentary on YouTube called "Swallow". This documentary was made to bring light to a condition called dysphagia, which is the medical term for difficulty swallowing, and it can have many causes. Dysphagia is one of the many things that Raya has dealt with in the past. One of the reasons we had to stop her oral feeds at the age of 5 months was because she was not swallowing safely. Instead of the formula going directly down her esophagus, it was pooling over her airway before going down, which can lead to aspiration and pneumonia. Fortunately, she already had a feeding tube at that point and we were able to bypass her having to swallow the formula and reduce the risk of aspiration and upper respiratory infections that can be caused by aspiration.
I am sharing this video with the hope that it will help people to have a better understanding of dysphagia, which is just one of countless possible reasons that a child may need a feeding tube or have difficulty eating.

Saturday, November 26, 2011

Raya's Thanksgiving Feast (and other festivities)

This Thanksgiving beat the heck out of last year when I was stuck at home by myself with one sick 3 year old and a 1 year old with a fairly new GJ tube who was still vomiting a lot of bile, battling c. diff, and on a crazy around-the-clock feeding/med/G tube drainage schedule. It was quiet but pitiful. :) This year was much more eventful.
For starters, Raya enjoyed a lovely Thanksgiving meal that consisted of...drumroll please...
sour cream and wheat thins, just as I had predicted. :) She was offered a lot of other things by various people which she sometimes took little courtesy nibbles of, but when it comes down to it, she doesn't eat what she doesn't want to eat and it's just good that she's over her super duper gag reflex and knows how to spit things out now. :)

After her sour cream & wheat thins, she decided to play on all the fun things in Aunt Debbie's back yard:
I went in the house for a couple minutes and when I looked outside, my sister-in-law was holding Raya, who was laying her head down on her shoulder and crying a little. I went to see what happened & they said Raya had fallen off of the bouncy horse but nobody really saw it happen. She had a scrape on her forehead:
(don't mind the crusty sour cream face) and she said her arm hurt. It didn't look like anything was wrong with it at the time so we didn't really worry too much about it. She was acting extremely subdued compared to her usual supercharged self, but she was also really tired since dinner was during naptime. I sat down with her and then she let one of our cousins hold her and fell asleep. She slept on my lap for quite a while and aside from the fact that I knew she was only doing it because she was tired & had hurt herself, I enjoyed the snuggle.
After she woke up she was still acting funny. She didn't really want to get down and play like she had been before but she wanted to eat more sour cream so I put her in the high chair & gave her some.
I handed her the spoon and she took it with her right hand but she couldn't hold onto it tightly enough to eat her sour cream with it so she used her left one instead. We also noticed that she couldn't supinate (rotate her palm up) and that was when I started to suspect that she had possibly broken it. Since it was Thanksgiving and nothing but emergency rooms were open and she didn't seem to be in much pain, we decided to wait and see how she did with it on Friday.
I got up and went shopping around 7:30 on Friday (because, seriously, NOTHING is worth waiting in line all night for :) and when I got back around noon, her arm was definitely more swollen than it had been when I left. She couldn't grip hardly anything with it and didn't even try to use it. Most of the time, it was just dangling at her side which is not normal for her either.
I knew the pediatrician's office would be closed but I called to see if their after hours clinics were open. They were, but none of them have x-ray machines (SO ready to find a new peds office!!) and the urgent care we like wasn't open until 5 so we waited. I kind of laughed at the fact that instead of waiting in line for a store to open on black Friday, I was waiting in line on a sidewalk outside an urgent care waiting for it to open. :) These are the pictures I took just before we left to go to the urgent care:
We are really lucky that the clinic Raya goes to for a couple of her specialists is also an after-hours urgent care so they already have her very extensive medical history in their system and I don't have to fill out any intake paperwork (which is a HUGE pain with a complex kid) or explain everything from the beginning. We only sat in the waiting room for about 30 seconds before they took us back to a room. Raya marched right in like she owned the place, as usual. :) The doctor came in and looked at it and when he saw that she couldn't rotate palm up, he said that he would just about bet that it was broken. The x-ray tech got us all set up for the x-ray and when she turned Raya's arm for the side view of the radius, she said, "Well I can't tell you anything but I can already see what's going on here!"
While we waited for the doctor to come back in and tell us about the x-rays, Raya kept telling me where her arm hurt:
The doctor came back in and said that she had buckle fractures in both the radius and the ulna just above the wrist. The one in the radius is worse but they're both broken.
So they put a big fat splint on her arm, put a little bitty sling on her (which we now know it's a ridiculous task to keep a sling on a 2 year old who still holds her arms up and out when she walks) and after that we were on our way. The whole thing took just barely over an hour, which COMPLETELY justifies me not taking her to a germy emergency room earlier in the day.
Fortunately, we happen to already have an appointment scheduled for Tuesday with an orthopedic specialist at the CRS clinic (where she sees her CP doctors) so they should be able to look at the x-rays and her arm and decide what needs to be done next with it. This also means we'll be cancelling our weight check for Monday since we can't take the splint off to get an accurate clothing-less weight on her now. I'm slightly relieved about that because I'm a little nervous about how we've been doing calorie-wise since we changed her feeding schedule & added some real food.
Today, we went back to Aunt Debbie's for a baby shower and Raya got the door open and went outside, so while we were out there...
For the record, I tried to take the bracelet off but she insists on wearing it.
Whatever makes you happy, kid. :)
She got back in the saddle, splint/sling/feeding pump and all, and showed that wonder horse who's boss! :)
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