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Saturday, September 29, 2012

The rest of our busy week

I was totally right when I predicted at this time last week that this week would be rather hellish. Now it seems like a bit of a blur but it was a hellish blur. Thankfully, Wednesday was a much better day than Tuesday. As frustrated and down as I felt on Tuesday, I knew that I wasn't alone in my feelings. I was able to blubber on the phone to my wonderful husband, blubber via text & email to dear friends who have been through meetings just like the one we had, and blubber in person to two other dear friends who hugged me, which was what I needed. Every one of them had different things to say and I needed to hear all of it. One of the most important things I've learned that has made the biggest difference for me through this special needs journey is that I am not meant to go through any of it alone. NOBODY needs to go through it alone. I couldn't do this without the understanding and support from people who are doing it too.

Moving on. So Wednesday I woke up feeling much more calm & collected about Tuesday's meeting. I talked to our support coordinator and discussed what we need to do next if the evaluators did not find Raya in qualification for preschool so that helped. Raya had an allergist appointment that morning so we dropped the kids off at school and headed to the appointment. Allergy testing frustrates the heck out of me. At her last appointment, we did skin testing with the major food allergens and some additional foods that she eats and that we've seen reactions to in the past. She was very mildly positive for milk, peanuts, most of the tree nuts, wheat, oats, rice, chicken, and shellfish. Because there were some reactions, we did blood tests. They all came back negative. That really frustrated me because we KNOW she has allergic reactions to some of the foods we tested.

At her follow-up, we saw the nurse practitioner. I have nothing against her but I was hoping to see the actual allergist since he's the one that's been following Raya since she first saw him. The NP is nice but she moves really fast through the appointments and I feel rushed and like she's not really hearing me. I was telling her that Raya has had this dotty rash around her mouth & under her nose for about 2 months now. At first we thought it was heat rash but if that was the case, it would have gone away by now. Incidentally, in the last 2 months her two most consistent foods other than ice cubes (if that counts as food) have been Wheat Thins and Nutrigrain bars. Because wheat was her highest reaction on the skin testing, I thought maybe the rash is related to the fact that she's been consistently taking in wheat orally. The NP said that it could be related and suggested taking her off of wheat for 2 weeks to see if we notice any changes.

She also wanted to do skin testing for environmental allergens to see if maybe that could give us some answers. Raya was ticked. She hates skin testing. I felt bad for springing it on her like that but that was better than having to schedule another appointment for it. The results were completely underwhelming. She was ever-so-mildly positive for cat & grass but that was it.
So that didn't get us any helpful information other than we don't really need to be concerned about any environmental allergies. One more test to check off of the very long list. :)

After that, we hurried home so I could throw some stuff into boxes since we were moving the next day. All I have to say is thank goodness for wonderful friends who are willing to help out when I need help (even if I don't think I do & don't want to need help) because there's no way I could have gotten everything packed in time. We got home from the allergist at 10:30 and had to pick the kids up from school at 1:00 and then pick up my phone from the place that fixed my broken screen from when I dropped it in the zoo parking lot 6 months ago. THEN we went home and hurried to throw more stuff in boxes.

Thursday was the big day. We have been looking forward to this move with equal parts anticipation and dread. We've been SO excited to move into the new house (which is smaller but MUCH nicer than the old one) and SO excited to be back "home" but sad to leave the friends we've made and dreading the actual process of moving. HATE that part. Two of the kids were at school and the girls were at home. Thankfully, a friend took Kaida to her house for a few hours and Raya's wonderful respite provider was able to come and keep her occupied and then take her to therapy. I love her dearly but it's hard to load a moving truck with this sweet girl around. She was climbing on things, unpacking things that had been packed, putting random stuff in boxes, and getting herself stuck between the window and the toy shelves.


All that excitement wore her out and she fell asleep on the way to OT. Megan sent me this picture when she got to the clinic.

Such a pity to have to wake a sleeping 2 year old! Her OT texted me when they were done and said that Raya had a great session and that they're tweaking her program and adding in some new things that they learned at a workshop a couple weeks ago. I absolutely LOVE that we have such great OTs who care so much about their patients that they seek out ways to improve upon what they're doing, which is already pretty awesome. We are truly blessed with great therapists.

While they were at therapy, we (Donny, his dad, me and a friend) were back at home playing real-life Tetris with boxes in the moving truck. When it was full, we headed over to the new home {sweet} home and started unloading. Megan brought Raya over after therapy and then Raya spent the rest of the day "helping" us move.
(that box weighs about 6 ounces, by the way) After she got the box of Farrell bags onto the shelf, she decided it needed to go on top of everything else. I was carrying things into the house and walked back in a few minutes later and found her like this:
Somehow she had managed to get a gallon jug of water on top of the box of formula & Pedialyte. When I took the picture she was yelling, "Ta-da!" 

We had to go back for another load and the girls just couldn't stay out of the middle of things. They had so much fun going up & down the ramp in the truck and Raya took it upon herself to tell everybody else what to do the whole time. She biffed it SO many times going down the ramp of the truck. The new house has a back yard with GRASS in it, as opposed to the house we've been living in where the whole thing was rock except for the small area where there used to be grass and we planted our garden there. The kids were so excited to have a nice yard to play in and stayed outside for a long time while we finished unloading.


When it was almost bedtime, we made the little girls come in and have a bath because they were SO filthy from "helping" all day:

Raya had a whole bunch of new bruises & scrapes (including that nasty one above her right knee. not sure how that happened) and they were both just filthy. By the time they had scrubbed the dirt off, the water was gray. Blech.

Thursday night was a momentous occasion for Raya (and us). She is no longer in our room. YAY! We've had her in our room since she was a tiny little baby because she just needed to be, but she's ready (and WE're ready) to share a room with one of the big kids. I don't want her formula to mess up the carpet in this house so I bought a tarp yesterday to put under her crib (classy, I know) and I'm going to find a cute rug to put over it. That way it won't look ridiculous but it will still save the carpet. We don't have nearly as many leaks/spills/drips as we used to but it's still inevitable so hopefully this will work.

Friday was also a momentous but bittersweet day. After 2 years and 9 months, Raya has officially graduated from physical therapy. She started when she was 8 weeks old because she had congenital muscular torticollis with a left tilt and right rotation. This is how she looked after about 1 year of PT:

She had PT at one of the children's hospitals for about 11 months before switching to home therapy through early intervention/DDD. Since December 2010, she's been seeing Miss Jessica. It took Raya a couple of months of working with her before she could tolerate most of a session but she warmed up to her and started having OT to address sensory issues, she loves Miss Jessica.

On Friday, we walked to the park in the neighborhood (since there was no room in the house with piles of boxes everywhere) to re-assess some of Raya's skills and make sure she's meeting her PT goals.
(Checking range of motion in her neck)
Not catching the soccer ball :)

We greatly appreciate everything Jessica has done for Raya and will really miss having our PT sessions with her. This kind of progress is exciting though. A kid with cerebral palsy to "graduate" from PT is something to be excited about. :)

And that brings us to today. We had to do what is possibly the most awful part of moving: clean the old house. My wonderful mother-in-law and another friend came over and helped but even so, it took us about 5 hours to get it REALLY clean. Nothing makes you feel like an awful housekeeper like having to deep clean your house after you move out. Donny worked today so the kids were stuck helping. They were tired, hungry, and bored about an hour into it so by the time we left, everybody (including the adults) needed lunch and a nap.

Raya fell asleep in the car on the way home and stayed asleep when I laid her on the couch. I hooked her up to the pump for a feed and she slept for a little over 2 hours. When she first woke up, she was smiling. Then less than a minute later, she was writhing around on the couch crying and screaming. At first I thought it was just a meltdown from the total lack of normalcy this week. I sat down on the couch and put her on my lap and instead of bristling and not wanting me to touch her like normal, she leaned up against my shoulder and was hunched over grabbing at her stomach. I asked her if her tummy hurt and if she wanted me to burp her tummy but she was beyond being able to communicate with me. (Again, where was this child during the preschool evaluation...) I got the tube & syringe to vent her with but she grabbed her tube and screamed at me when I tried to pull her shirt up. I could hear her refluxing and swallowing a lot of air so Donny helped me get her hands out of the way so I couuld vent her. At that point, it had been well over 2 hours since her last 250ml bolus so I didn't expect anything but air. The second I unclamped the tube, yellow liquid started filling the syringe. She was squirming around crying and grabbing at her stomach and I had to clamp the tube because I only had a 35ml syringe and we were up to 20. Her breath smelled like bile and what was coming out of her stomach was formula mixed with bright yellow bile and mucus. I decided we'd better empty her stomach to make sure she didn't throw up and because I wanted to see how much was in her stomach. She shouldn't have had much of anything in her stomach by then but I drained out over 180ml followed by a LOT of air. She kept crying the whole time, and kept crying off & on for the next 3-ish hours.

We went to Costco and she cried most of the time we were there. She cried because I didn't let her have a chicken nugget like the other kids got to (the breading had wheat in it and she wouldn't have eaten it anyway). She cried because someone looked at her. She cried because the cashier talked to her. Then the cashier said, "Oh, must be naptime!" and I wanted to explain to him that she wasn't tired, she was hurting and her little world was in upheaval but I didn't. Sometimes you just have to smile and nod. Or ignore.

We came home and she was still a hot mess. I offered her one of the new crackers (gluten-free) that we got at Costco but all she wanted was the gluten-free animal crackers that I got her at the grocery store yesterday. And ice. Thank goodness for ice. I mixed the rest of her formula for the day with Pedialyte and hopefully that will move through her a little better.

Well, that's the rest of our week. Busy and exhausting but we are SO happy to be done with the move and be in a house & neighborhood that we love. Hopefully Raya will adjust soon and start feeling better. Moving is rough on a little kid who doesn't deal well with change & interruptions to her routine!

Tuesday, September 25, 2012

Long and exhausting day, part 2

If you missed Part 1 of our incredibly long & emotionally exhausting day, click here to read it.


After I had a chance to collect myself a little, it was time to go to her next appointment. This one was her annual CP screening clinic at a clinic WAY downtown that I really don't like going to. One of our worst doctor's appointment experiences ever happened at that clinic and after that, I never wanted to go back but we have to once or twice a year. It takes us about an hour to drive there so I always leave 90 minutes early just to account for traffic. It was the middle of the day so Raya snoozed most of the way there with her "blue blanket" which is really pink plaid. No matter how many times I tell her it's pink, she still insists that it's blue. Whatever.

I was still replaying the events of the preschool evaluation in my mind (much more calmly than the drive from the school to home) and flipped the radio station. I caught the end of the song that I used in Raya's Feeding Tube Awareness Week video and the tears came flooding back as I heard the words, "I won't give up on us, even when the skies get rough. I'm giving you all my love, I'm still looking up." Sometimes I just need to hear those words to remind me that things will be okay however it all works out. I understand that Heavenly Father has a plan for Raya and that He is aware of her needs. The human in me struggles with the frustration of not being able to see what that plan is or know how it will work out. When I pulled into the parking lot of the clinic, Raya was still out cold and looking very uncomfortable:
It makes your neck hurt just looking at her, doesn't it. I hated to wake her up but I was glad she'd gotten a little bit of a nap. I hadn't had time to get her formula ready before we left so I brought it in with us and hooked her up to a bolus feed while we waited for the NP. She was very excited to put on her "lion dress" (aka hospital gown with tigers on it) and was still really sleepy so she was fairly calm for a change.



The NP that we see for the CP screening appointments is absolutely delightful. I was so grateful that the appointment was with her or I might have been a complete basketcase the whole time. :) We went over everything that's in her chart from previous visits to that clinic, her current status on anything significant, any concerns either of us had, and the future appointments I need to schedule. We had talked before about having a developmental pediatrician follow Raya but I feel like right now, I'm maxed out on appointments and there aren't any blaring deficits that aren't already being dealt with. She said that if the concerns we're working on now don't improve or become more of a problem, that a developmental ped would be a good person to consult with so I'm filing that away for future use. :)

One of the things we talked about was potty training. Those two words strike fear into the hearts of parents of toddlers everywhere. Factor in trying to get a kid to eat on top of that, and it's completely overwhelming. This is one area where people who have been around Raya don't really understand that she's not ready to potty train. Potty training a tube-fed child is not the same as potty training a child who eats. Tube fed kids get 100% of their fluids on a daily basis because they don't really have a choice in the matter. :) Tube fed kids are also on a liquid diet. Right now, at least 75-90% of Raya's calories are from liquid and she also drinks water and eats ice cubes all day long too so there's a lot of fluids flowing through that little body. She never tells us when she needs her diaper changed. If somebody asks her if she has a poopy diaper, she'll sniff the air and say, "I fehw sumpeen!" (I smell something!) but she never tells us when she's wet or poopy. Her diaper is always soaked to the limit in the morning and she's not even getting overnight feeds anymore. Given what we know about her GI tract and the way that her brain interprets sensory input, it's also possible that Raya's brain doesn't register the feelings of needing to go to the bathroom just like she doesn't register hunger or fullness and feels exaggerated pain sensations in her gut. And let's not forget that Raya moves at her own pace and doesn't do things until she's good and ready. The reason I'm explaining all this is because recently, some comments have been made to me about it being time to potty train Raya since she's almost 3, and I want people to understand that some children just are not ready to potty train when the general public thinks they should be. In other words, don't judge me (or anybody else) for not potty training a child who is not ready to potty train just because she's "old enough" to be potty trained. There's a lot more to it than meets the eye. Anyway, the NP told me that with Raya's long term care insurance, when she turns 3, diapers will be a covered expense. That was the best news I got all day. :)

She told me that I needed to schedule our 1 year follow-up with the geneticist for January. They were supposed to have checked with our insurance about having some blood tests done on Donny and me and then call to schedule that appointment, but they never did. When I talked to the scheduler, she said that the geneticist doesn't have anything open until next June so I have to call them tomorrow and see if they can get both of those issues taken care of. Things are going well with Raya CP-wise so we don't need to go back to the screening clinic for another 18 months.

The highlight of my day (and Raya's) was that there was a whole ice cream buffet set up in the lobby of the clinic. I don't know what the occasion was but I really didn't care. Ice cream was totally what I needed right then. Raya had been a very patient and good girl during the appointment so I let her pick out toppings for her ice cream. She picked crushed Oreos, mini M&Ms, and colored sprinkles with chocolate, vanilla and strawberry ice cream. I must have looked as haggard as I felt at that point because the lady said, "Mom have ice cream too?" and then she loaded me up with chocolate ice cream. I smothered it in Oreos and carmel sauce and we sat outside on a bench and ate it. I fully expect her to have a tummy ache at midnight but we both needed some ice cream so I let her eat it anyway.
As you can see in the pictures, she didn't eat much of it. She mostly scooped up the ice cream that had M&Ms on it, picked off the M&Ms, and flung the ice cream back into the bowl. Then she stirred it all together and at that point, I decided it was time for her to be done. We got in the car and drove an hour to pick up Kaida from the friend who graciously kept her for me all day long, and then went straight to the school to pick up the kids, THEN went home. I used a quarter of a tank of gas today.

When we got home, there was a UPS slip taped to the door saying that they'd attempted to deliver 2 packages from our home health company but couldn't leave them because one of the insurance companies requires a signature. (SO annoying) The time on the slip was only 30 minutes before we got home so I called to see if they could come back. The lady told me they wouldn't do that. I told her that on the slip, it said they'd try again tomorrow between 2 and 5 pm but that we wouldn't be home then either and we're moving on Thursday. She said I'd have to just go to their depot and pick them up between 7:45 and 9:00 pm tonight. The floodgates opened again and I sniffled when I asked her for the address. She said to make sure I brought my driver's license and I told her that the name & address on my license wouldn't match the name & address on the packages because they were being shipped from our home health company to a 2 year old. She said I'd have to bring a utility bill that matched the address and proof that I was Raya's mother in order to pick the packages up. Ridiculous. If it had just been extension tubes, I would have said to forget it but one of the boxes was the spare button kit that I begged for and we need that. The Lord must have known that having to drag 4 kids to the UPS depot 45 minutes after bedtime after the day I've had today would have pushed me over the edge because the UPS guy did end up having time to come back. Whew. Lucky for the kids, a very nice woman from church was kind enough to bring dinner over to us tonight so they actually got to eat something other than burritos.

Last but not least, I called the surgeon's office and scheduled an appointment for him to take a look at Raya's scar tissue. It's getting bigger and causing higher-than-necessary risk of having to go to the ER when the tube gets pulled out. I don't know if he'll want to do anything to remove the scar tissue or not but I think we need to at least discuss it.

Today has been a really emotionally exhausting day. I am so grateful that we've gotten to the point where Raya's doing well enough to even consider preschool and that she's made so much progress in the 2 years and 9 months that she's been getting therapies. That gratitude doesn't take away from the fact that we are still dealing with hard things. They are not the life-or-death hard things that many of our friends are dealing with, but they still affect her future and her quality of life and they are still hard. Hopefully tomorrow's allergist appointment will go smoothly and be productive and I'll be able to get everything that's not packed yet ready to move on Thursday. I said it yesterday morning and I'll say it again, if we make it through this week in one piece, it will be something to celebrate. :)

The much anticipated/dreaded preschool evaluation

The short version of this post is that Raya had her preschool evaluation today, it totally sucked and I will be amazed if they scored her so that she qualifies for preschool, we had a lovely visit with the nurse practitioner at her annual cerebral palsy screening clinic, and the ice cream they gave us on our way out of the clinic was the high point of my day and Raya's. If you want more details, here's the long version. It's really, really long, it's not pretty and I'm not asking for sympathy or pity, I'm just documenting our life and keeping it real.


Back when Raya was diagnosed with cerebral palsy and subsequently approved for therapy services through DDD, I breathed a huge sigh of relief. That diagnosis meant that she qualified to receive the therapy services, supplemental insurance, and respite care that we knew would provide her with better quality of life and allow her to reach her maximum developmental potential. I did not realize at the time, however, that she would still have to be evaluated to qualify to transition from the state's early intervention program to special needs preschool. In the beginning, everyone referred to "when Raya transitions to preschool" and never mentioned that it was IF, not WHEN. I don't remember when it was first brought up that she'd have to qualify but I've had anxiety about it ever since.

Finally a couple months ago, we got the meeting scheduled with the district we're currently living in the boundaries for, which we'll call district A. Then we decided to move back to district B where the other kids are attending school. As it has worked out, our move date ended up being 2 days after our scheduled eval date. I called our support coordinator last week and told her when we were moving and asked her what we should do. She emailed me back and said that district B said to go ahead and do the eval with district A since it was already scheduled and B couldn't eval her until late October. I assumed she had talked to both districts but found out at the evaluation today that district A had no idea that we were moving at all, much less this week. The speech pathologist made no efforts to hide the fact that she was mad that we had done the evaluation. She said she understood why our SC did it this way but flat out told me that if they'd known, they never would have done the evaluation. That made me feel like crap. It wasn't my fault but now I worry that it will affect the results.

I'm getting ahead of myself. So this morning, Raya was a mess. She was stubborn, crabby, crying over little things, fighting me on getting dressed, fighting me on putting her shoes on, and we had a wrestling match trying to get her buckled into her carseat. For once in her little life, I was thrilled to see her acting that way and thought she'd do a great job showing the evaluators all the reasons why she needs preschool. When we sat down in the school office to wait (for 20+ minutes) for her appointment, she was much more calm but still crabby. Had the school psychologist been the one to come fetch us from the office, she would have seen Raya like this:


But no, someone else sent us back to the room for the evaluation. When we walked in, it was like someone cast a spell on her. She suddenly became agreeable, happy, cooperative, and communicative. I knew as soon as we walked in that it wasn't going to go well. To sum it up, she was the absolute best version of herself through the whole evaluation. That may sound like a good thing but when they need to see why she needs to have preschool, it's bad. The first thing they said to me was, "So tell us about Raya." I honestly didn't know where to start. How do you summarize almost 3 years of medical problems, developmental issues, therapies, and concerns? I had expected it to be a somewhat structured assessment. What it was had no semblance of structure. The two therapists in attendance and the school psychologist all asked me a few questions in between watching Raya play. The occupational therapist was gone today. When they told me that, I told them that that was really unfortunate because Raya's biggest deficits are things that we work on with the occupational therapists that she's been seeing twice a week for the last 19-ish months.

The speech pathologist asked me questions about her communication and I tried to emphasize the fact that even though Raya HAS had a language explosion recently and has a lot of words, it doesn't mean that she is capable of expressing herself. I explained that unless Raya is at her absolute most calm and collected state (which is not often) she can't find the words she needs and throws fits and cries. She asked me more questions and I answered them the best that I could. It's harder than you'd think to answer questions about your child. On one hand, as the proud parent, you want everyone to know how wonderful your child is and how smart they are. On the other hand, the purpose of these meetings is so that they can see what deficits there are and if the deficits aren't significant enough, they won't qualify for the services they're being evaluated for. What it boils down to is that if you say the wrong thing, your child might not get what they need. It's scary. I've always been told that if the child isn't doing whatever they ask you 100% of the time, then the answer is no, and that's what I tried to stick to today. It's just hard when some of the questions aren't a clear cut yes or no answer. I know Raya's language skills are good, especially when she's in such an angelic mood as she was during her evaluation, but other than an hour or two a day, she's difficult to understand. When she's tired, excited, talking fast, mad, fatigued, or distracted (which makes up about 90% of the time), her letter sounds get soft, she slurs words together, and she's difficult to understand. Whether or not the speech pathologist heard & understood me correctly when I explained that is yet to be seen.

The physical therapist sat on the floor by Raya while she played with toys. She completely ignored the PT, which made me smile on the inside. (That was about the only thing that made me smile on the inside.)  There were exciting new toys to play with so why would she pay attention to some adult asking her questions and telling her to do things. She always W sits (that position that some little kids do that hurts your knees to look at it) so the PT said, "Raya, fix your legs." After she'd said it 2-3 times, she asked me what verbal cue I usually give her to get her to fix her legs. I chuckled and said, "I tell her to fix her legs. She just doesn't do it. If Raya doesn't want to do something, she's not going to do it." And that's the truth. The PT took her outside for a few minutes while the speech therapist went over the results of her assessment and the psychologist asked me more questions. The speech therapist told me that she's scoring around 100 and in order to qualify on speech, she'd have to be at 76 or below. I knew she wouldn't qualify on speech alone, so that wasn't a surprise. She did say that she would put Raya's articulation deficits in the report but honestly I don't think it will matter.

The psychologist's role in the evaluation was to observe social, emotional and behavioral components and ask me questions from a standardized testing instrument. That was the only part of the evaluation that I felt somewhat good about because Raya has some definite issues with those areas. The unfortunate thing was that the SLP and PT's portions of it took up so much time that I don't feel like I got a chance to give the psychologist an accurate picture of how Raya really is. The child that was in that room was NOT my usual Raya and I hope I said that enough times for them to get it. Right when I felt like we were going to dive into the nitty gritty of Raya's sensory issues that I think will influence her ability to learn when she gets into a classroom setting, the evaluation was over. The SLP said, "We'll need to have another meeting to go over the results." I said, "Um, you are aware that we're moving out of the district, right?" She had been walking towards a shelf to put a toy away and when I said that, she stopped dead in her tracks, turned around and looked at me and said, "No, nobody told us that." She was clearly irritated. I explained the situation and why we had gone ahead with the evaluation and that was when she said, "Well, I can understand why she did it that way but if we had known, we never would have done this evaluation." Her entire demeanor changed as soon as the words "we're moving" came out of my mouth. I had assumed that they knew that already. The tone in the room changed at that point. Two of the ladies were still nice, but they all shot looks to each other that didn't require words for me to understand how they were feeling.

And just like that, it was over. Everybody closed their notebooks and the psychologist escorted us out of the room. A feeling of slight panic set in when I realized they were done asking me questions because we barely scratched the surface of what the real issues are. In a last-ditch effort to get my point across, I said, "Just so you know, the girl you've seen for the last 45 minutes is not who she really is. This was not the typical Raya. Every activity she's done for all of you are things that she initiated. If she initiates the activity, she's fine but the second you try to get her to do something she doesn't want to do, she's a different kid. This was not the real Raya." They all smiled and nodded so who knows what they were thinking. As we walked out, Raya didn't want to hold my hand. She wanted me to carry her so she stood in front of me and held her hands up and whimpered at me. I told her I wasn't carrying her and that she needed to walk like a big girl. She kept doing it all the way out of the library and halfway down the sidewalk. Finally I picked her up because I could feel my emotions coming to the surface and just wanted to get out of there. As we walked through the gate, I said to the psychologist, "Why don't they ever do what you need them to do when you need them to do it?" Once the gate closed, I couldn't hold back the tears anymore. It's a horrible feeling to feel like you've probably just cost your child the help that she needs. I won't know anything for sure until the next meeting on October 25th, but I'm expecting them to say that she doesn't qualify and that's not just me being pessimistic. Anyone who had been in that room would understand why I'm afraid that that's what the outcome will be.

I'd like to say that I dabbed my eyes, blew my nose and pulled myself together to go about the rest of my day but the truth is far from that. I cried my ugly cry all the way home. I gave Raya her morning doses of meds, plopped her on the couch, and turned on Backyardigans for her while I laid down on my bed for a while. I've been anticipating that evaluation for over a year and I feel like I completely failed her. I don't feel like I gave them a clear enough picture of the difficulties she has and I don't feel like they saw enough to make a good judgement about her. I should have prepared differently. Things I should have said have been running through my mind all afternoon. If they could only see what she's like outside of that fun little room full of new, exciting toys, they would see why I'm even going to the effort of pursuing preschool at all.

So that's the first part of our incredibly long & emotionally exhausting day. Part 2 will follow...

Monday, September 24, 2012

The GI visit I forgot to write about

Raya saw her GI doctor last Wednesday. That morning when I told her we were going, she was SO excited. She loves her GI and loves to say her name too. We had to take Kaida with us this time and that always adds a little excitement. Of course the first thing she does when we walk through the door is kick off her flip flops. That kid does not like wearing shoes! Not sure what we're going to do when the flip flop weather ends. We did measurements and vitals. Raya makes me so proud with the way she handles all of that. She's definitely an old pro. :) I usually sit in the chair with her in my lap for vitals but she wanted to do it by herself this time. She looks so grown up sitting there all by herself with her little blood pressure cuff on! :) I couldn't help but smile. I'm so proud of my big girl. :) She was excited to see her doctor right up until she walked into the room. Raya had been playing and jabbering up a storm, not paying any attention to me and then the second her doctor walked into the room, she stopped talking and climbed up on my lap. Only for a quarter of a second and then she was off and running again but she didn't even say hi. If that's how she greets her favorite doctor, then I cringe to see how she'll do with the 3 appointments she has this week! We discussed the previous week's debacle with the AMT Mini One button coming out & being extremely difficult to get back in. I did what I felt was right in a difficult situation and we agreed that it was fortunate that the outcome was good in spite of the risks. We discussed what can be done differently should a similar situation arise again. I thought we were heading to the ER this afternoon because her tube got pulled out again. (I swear I'm really not careless with her, the water in the balloon was low and she caught the tubing on the IV pole) Thankfully it went in much more easily this time aside from her covering it with one hand and yelling, "No, Mommy! Don't hurt me!" She used to lay really still but she's afraid to have her tube put back in now. Anyway, her doctor was pleased with her growth over the last 2 months. She weighed 13.88kg (30 lbs, 9.6oz) and was 93.9 cm (36.85") tall. She gained about half a pound and grew 2cm since July. No wonder her pants are too short. :) She's had problems for a while now with intermittent bleeding from her stoma. Every few weeks, we have to put her on Carafate for a few days to clear up the irritation that's causing the bleeding. It hasn't been a big deal so far but there's never any rhyme or reason to the bleeding and we don't know if it's coming from inside her stomach or from the tract of her stoma. I worry that having an open source of bleeding like that is going to make her more susceptible to infections in her stoma. It hasn't caused problems yet but I'd rather keep it that way. She suggested putting Raya back on the twice daily dose of Prilosec to see if it helps. 5 days later, the bleeding has stopped but time will tell if the increased Prilosec had anything to do with it. Another reason we went back up on the Prilosec is because she's been spitting up again. It doesn't sound funny until you remember that she'll be 3 years old in November. She had also had a stuffy nose, been coughing in her sleep, and we could hear occasional reflux swallow/hiccups. If those things diminish once the Prilosec has been increased, then we know she's not ready for a lower dose. It's a bummer to have to go back up on it but for the time being, it's just what we need to do. It had been a while since Raya had gotten routine bloodwork done so she ordered labs too. Raya does about as good as anybody could ask of a 2 year old but she's also smart enough to know that it's going to hurt. She held totally still but cried the whole time. The girls got Dum Dums and stickers and we left. So back to the tube coming out today. I happened to come across a picture of another child's G tube stoma this attention right after I had put her tube back in and was shocked by how small and neat his stoma looked in comparison to Raya's. His stoma was obviously a hole and had nice, thin edges. Her scar tissue is so thick and raised that when there isn't a tube in, you can't even see a hole in the middle. I'm worried that the scar tissue is creating a dangerous situation for her. Up until last week, I had never worried about being able to get the tube back in. I had been able to let go of my fear that the people I've left her with wouldn't be able to get the tube back in if it came out, but now I'm not so sure. If someone that's timid about hurting her had to try and get the tube in, I don't think it would happen. So the point to my ramblings is that I've decided to consult the surgeon about doing an excision of her scar tissue. I'm not sure if it's something he could/would do on her, if it would even help, or if the benefits would outweigh the consequences. She's had such a healthy, problem-free stoma for over a year nowand I hate to mess with that but the risks of sending her to school when it's so difficult to get the tube back in are scary too. I have no idea when they'll be able to get her in but I think it's worth discussing.

Friday, September 21, 2012

Moving

I hate moving. In a lot of ways, moving a long distance is much easier than moving across town, which is what we're doing next week. We've done both and although both were stressful, everyday life doesn't pause while you pick up and move a few miles. I feel like today has been the calm before the storm. It was the first day this week that we didn't have some kind of appointment or somewhere that we had to be other than taking the kids to school. Next week is going to be downright insane. We have 3 appointments, one of which is a huge deal, one will take an hour of driving both ways and be at the clinic I hate the most, and the other will determine whether or not we have to make some big changes with food. Donny will be working late into the evening until moving day and somewhere in there, I have to remember to feed everybody. We're really excited about the move, just not excited to do it. I really hope she'll start taking naps again when we move because she hasn't had one the whole week and I REEEEEEALLLLY miss her taking naps.
Last night I woke up to the sounds of the IV pole clanking against things as Raya tried to escape from the bedroom. I got up and asked her what she was doing and she started crying and said, "You need to unplug me!" meaning that she wanted me to disconnect her from the feeding pump so she wasn't tethered to the IV pole. Donny put her back in bed but a little while later, I woke up again when she flung her 2 fleece blankets onto my pillow and bounced into bed with us. I never thought that would happen. She's not generally a snuggler. She still wasn't though. If I touched her, she got mad. It's an unspoken rule with her that physical contact is on her terms or not at all. She's a restless sleeper and it was NOT a restful night for any of us but I didn't want to put her back in bed because I didn't want her waking everybody else up screaming.
Speaking of screaming and moving, I don't think the rest of the neighborhood will miss us when we go if for no other reason than the animalistic screams that come out of Raya when I'm buckling her into her carseat against her will. Today she hit pitches I've never heard her hit before and kicked my seat halfway to school to pick the kids up. Kaida plugged her ears the whole time we were driving. It was bad. If we'd been in a parking lot somewhere, passers by would have thought I was trying to abduct her with the way she was kicking and screaming and trying to get away from me. And it was all over the fact that I wouldn't let her bring Legos in the car. Whenever it's time to go somewhere or for her to go to bed, she suddenly HAS to find the perfect toys to bring with her and if we don't let her take her time and do what she wants, she throws a fit. (she throws a lot of fits because children don't rule this house :) She wanted to bring Legos and I didn't let her for 2 reasons: 1. that would have put her in control, and 2. she would have had them in her mouth the whole time because lately, everything small goes in her mouth.
Everything is a power struggle with her these days. And yes, that's fairly typical of a child her age but she is not my first almost 3 year old and she takes it to a whole new level. This morning she wanted something to eat so Donny offered her a Nutrigrain bar. He reminded her to say "please" and then held her food for her for the next 10 minutes while she refused to make eye contact with him. Finally she said it. He handed it to her and asked her again, "What do you say?" but she wouldn't say "thank you" either. He couldn't back down at that point or she would have gotten her way, so it turned into a standoff that eventually resulted in Raya going to bed but not going to sleep. I really hope she starts napping again once we move.

Thursday, September 20, 2012

What I should have done differently

This is follow-up post #2 in the saga of Raya's AMT MiniOne button getting pulled out & not going back in. You know, the part where hindsight is 20/20 and I acknowledge that I should have done things differently?

In case you missed it, here's a recap. Thursday night, Raya's MiniOne button accidentally got pulled out. Even though it was out for less than 5 minutes and I've NEVER had a problem getting it back in, I could NOT get it back in no matter what tricks I employed. (which included a ridiculous amount of surgi-lube and a Q tip stuck through the G tube to keep it straight) Fortunately, we had an old yucky MicKey button in the emergency kit that went in just fine. (The tip on the AMT balloon is wider & more blunt than the MicKey, which is more pointed and narrower.) I called the on-call GI at the hospital who told me that since we had a tube in, not to bother with the germ-filled ER and that I should just call the surgeon's office the next day.

I tried again to get the MiniOne back in on Friday morning and it still wouldn't go in so I called the surgeon's office. The medical assistant I spoke to was snippy and rude and insisted that the surgeon would be able to get it in without any trouble because "she's been doing this for 20 years and she puts a Q tip in the G tube to keep the stem straight." I've since been informed that 20 years was an exaggeration and I was using a Q tip too. It didn't work, which was why I was calling. She also told me that if we came into the office, they would not use any pain medication or sedatives to make the process easier or more comfortable for Raya and I was not okay with that. When she transferred me to the scheduler, I was told that the next available appointment with the only surgeon they would allow us to see was 18 days later. Again, not okay with that. After being passed off from one doctor to another I felt like nobody took me seriously or cared what happened to my child, I decided that it was up to me to put the correct tube back in. I had to use more force than I liked to in order to get it back in but finally was able to do it.

So here's the problem. Forcefully inserting G tubes can cause a separation of the stomach from the abdominal wall. Instead of the end of the tube being in the stomach, it could potentially end up in the abdominal cavity instead, which would have serious repercussions. I felt like the risk of that happening with Raya's stomach was very low or I wouldn't have taken the chance, but nevertheless, the risk was there. At the very least, I should have taken her in to get an x-ray after I got the tube back in to make sure it was in the correct position.

Here is what I will do if/when this situation arises again. First, I should have told the on-call GI and the surgeon's office that I had a "temporary tube" in her stoma to hold it open rather than telling them that I had a MicKey button in it. If I had said TEMPORARY tube rather than old, disgusting, worn out MicKey button, they would have taken the situation more seriously because technically, we did have a functioning button in even if it was worn out and not trustworthy. Next time I order supplies from home health, I will be begging them to send us a Foley catheter for emergency purposes.

Second, I will still keep old buttons in our emergency kits but only for use if someone else is watching her and they're unable to get the AMT button back in. I've always felt like it was better to have a used MicKey button in the emergency kits than to have nothing or have a Foley catheter, but this experience has shown me otherwise. If we run into this same situation again where the AMT won't go back in, I will either push it back in myself like I did this time and then go to the ER and ask for an x-ray to confirm position, or else I will put the MicKey or Foley catheter in, drive to the ER, take the MicKey out if that's what we have in, and then go inside. If I had taken her to the ER with a gross but functional MicKey button in, I suspect that they would have sent us home and told us to call the surgeon's office during business hours. Maybe not, but if I was an ER doc and had a lot of patients to attend to, I wouldn't want to waste time on a button change if there was a functioning button in place. However, if there was only a temporary Foley catheter in, ER staff would HAVE to attend to it.

Third, if I EVER have to call the surgeon's office again and those same know-it-all medical assistants talk to me like I'm just some clueless parent, I won't settle for speaking to them and will insist on speaking to an RN/NP or having the surgeon call me. They acted like I was wasting their time and didn't take anything I said seriously. My daughter deserves better treatment than that and I should have put my foot down. There are 10 surgeons at that practice so if ours was unavailable, there had to have been SOMEBODY that could have seen her.

So in summary, if the tube comes out again and I can't get it back in, I'll put in a Foley (if we can ever get one) and take her to the ER, put a MicKey in and take her to the ER but remove the MicKey before I take her in, or get the MiniOne back in and then take her to the ER for an x-ray to confirm position.

After being a "tubie momma" for over 2 1/2 years, I feel like I have a lot of things figured out. We've had a lot of experiences that have taught me a lot, and while I know that I don't know it all, sometimes I think I know more than I really do. The truth is, NOBODY will ever know everything there is to know about tube feeding because it is so unique to every individual and every family. There are hundreds of different medical conditions that can lead to tube feeding. What works for one patient and one family may not work for another. The viewpoint of a medical provider is drastically different from the viewpoint of a parent or caregiver. Medical care is different from country to country, state to state, town to town, and hospital to hospital. We all do the very best that we know how to do and sometimes we make decisions under pressure based on what we feel is best and then later, we come to see what other options we may have had. This has been one of those learning experiences for me. I hope we never have this same problem again with not being able to get her tube back in but now that we have, I know what to do better next time and that's the most anybody can hope for out of a negative experience.

Sunday, September 16, 2012

Powder



We are still on our "sugar powder" kick. If it in any way, shape or form resembles sugar, Raya will eat it. Even if it's flour or berry flavored protein+creatine powder (what she's eating in the picture). I always thought that when she finally started eating I'd be so excited that I wouldn't care what she ate but I didn't realize she would be drawn to bizarre things like powders and Crisco. I guess beggers can't be choosy.
Honestly, I'm surprised that she likes the texture of powdered sugar because it's so light and has very little sensory input. Typically she can't stand things that don't have during sensory input. I wasn't surprised that she ate lemonade mix because it's gritty and has a strong flavor, but I don't get why she likes the fine powders. I suppose that nutritionally, protein powder is a little better for her than lemonade mix or sugar, but it scares me a bit because she doesn't care what the powder is. If she thinks something might be edible, she'll try it unless it's something she knows is food that somebody wants her to eat. Most kids can readily discern between good tastes and harmful or non-food tastes but Raya doesn't always get it. I just keep telling myself that this is another phase of oral sensory exploration and she'll get tired of it at some point and move on to something else. Hopefully the next thing will be something more normal and food-like. :)

Friday, September 14, 2012

Who needs surgeons anyway

Part 2 of the AMT MiniOne button won't go back in saga:

Recap: last night she accidentally pulled her G tube out (16fr 1.7cm AMT MiniOne button) and I tried repeatedly with every trick I could think of and couldn't get it back in. To avoid hospitalization & emergency surgery, I put an old yucky but mostly functional MicKey button in to keep the stoma open. I called the on-call GI after trying again unsuccessfully to get it back in and she said to wait & call the surgeon's office in the morning.

We used the gross old MicKey button for her last feed of the night & her night meds and then this morning I decided to give it one more try before I called the surgeon's office. I remembered that I had a tiny tube of lidocaine cream from one of our hospital stays so I decided to pull the MicKey out, slather the scar tissue & surrounding skin with lidocaine cream, and put the tube back for 20 minutes while the cream took effect. I had Raya lay down and told her I was going to take out her tubie and put medicine on her tummy and then put the tube back in. She was okay when I took it out and okay when I put the medicine on it, but she had a meltdown when I tried to put it back in. It slips right in but she was freaked out from all the drama last night. When I finally got the MicKey back in, I decided to forget about trying to get the MiniOne back in and just called the surgeon's office.

The person who answered transferred me to the medical assistant that works with the two surgeons that have seen Raya before, Dr. G and Dr. A. We had our initial G tube consult with Dr. G but then she was out of town so Dr. A ended up doing the surgery. I explained to the MA that I've never had a problem getting the AMT button back in before but that no matter what I try, it would NOT go in. She said, "Ok, let me see what Dr. G has available on her schedule and you can bring the button in and she'll put it back in." I told her that unless Dr. G could dilate the stoma (you know, with the ridiculously thick scar tissue around it) it wasn't going to go in. She was rather snippy with me and told me that Dr. G had been doing this for a long time and she can always get them back in. I told her that I had been doing this with my daughter's stoma for 2 years now and that if I can't get it in, she won't be able to either unless she can dilate the stoma, which was the whole reason I was even calling the surgeon's office. She said, "Well, Dr. G has been doing this for 20 years and she can ALWAYS get them back in. She uses a Q tip to keep the tube straight and she always gets them in. That's why she prefers the MicKey over the MiniOne, the MicKey is tapered and it's easier to get it in." Oh, you mean like I have done every friggin' time I tried to get it in? I'm not stupid, I've done all the same things the doctor will do to get it in.

I asked her if they would be able to use any kind of sedative or pain meds in the office to help Raya relax and help with the pain (because HELLO, we're stretching the hole in her stomach) and she said they won't do any of that in the office and that they would probably either force the tube in or put in a smaller French size. I told her I don't WANT a smaller French size, nor do I want to go back to a MicKey (because, after all, that's what the SURGEON prefers, who cares what's better for Raya.) She said if I wante Raya to get pain killers or sedatives, that I'd need to just take her to the ER and have them put the old tube back in. If I had wanted to spend hours in the ER, I could have done that last night but the hospital doesn't stock AMT buttons and I didn't know whether or not they could even legally put a used tube back in anyway, so I didn't. At that point, I knew it was pointless to try and have an intelligent dicussion with this person so I just said, "Whatever. What does she have available next week?" She said, "Um, nothing. I'm going to put you on hold while I get authorization from the scheduler to add you to the schedule."


SO I waited for about 5 minutes and then the scheduler (who was MUCH nicer and not rude and snippy like the MA) picked up. This is where it gets even more fun. She started talking about Dr. A's schedule and how he doesn't have anything available until October 2nd (as in 18 days from now) because he's away at conferences. I asked her if we could just see Dr. G instead since that's what the MA had been yapping talking about anyway but she said that technically, Raya is Dr. A's patient since he's the one that did her surgery. I DON'T CARE who did her surgery 2 years ago! I care who can see her NOW! When she said October 2nd, I laughed. I explained again that at the time being, we were getting by with an old, dirty, used MicKey button from our emergency kit but sure, we'll wait 3 weeks to be seen by a surgeon who isn't going to do anything any different than I've already been doing and won't use anything to numb her or relax her while he does it. I tried to keep the snark out of my voice but I was really feeling frustrated and angry at that point. She said that rather than schedule us that far out, she would put us on the cancellation list in case he has any cancellations next week. I told her that was fine and we hung up. Then I cried for a few minutes because I knew that I had 2 choices:
1. Wait 3 weeks and let the surgeon force the tube back in by whatever means necessary with no pain meds or sedation.
2. Be the bad guy and do it myself.

(and because we're moving in 13 days and someone was coming to look at the house at noon and it's like a nuclear disaster area right now) Both choices sucked. I hate having to do things to her that I know hurt her, but even more than that, I hate the idea of having to let people who don't know her and obviously don't care about her (given the conversation with the surgeon's office) do it. At least I know I love her, and so does she. I emailed the GI doctor (because I was in no shape to talk to anybody at her office & she's out of the office on Fridays anyway) and explained what had happened and asked her what I should do. Then I waited a little while until I had cooled off a bit and my sad frustration had morphed into pissed off Tubie Momma on a warpath kind of energy instead. 

I told her that we were going to try one more time to get her good tubie back in. She grabbed her stomach and said, "No, Mommy! No take it out! Don't hurt me!" I explained to her the best I could that we needed to try again because if Mommy couldn't get it in, then a doctor would have to get it in and that would hurt too. She wouldn't even let me touch the MicKey to pull it out after I had deflated the balloon so I grabbed her hand that was holding onto it, counted to 3, and pulled it out with her hand. She started squirming and crying and saying, "Owie! Don't hurt me! Don't hurt me!" and covering the hole so I couldn't get the KY jelly on it. I gooped up the tube really well and grabbed both of her hands with one of mine. Then she started kicking me and twisted over onto her side, so I had to straddle her and hold her body still with my knees while I used my other arm to hold her hands out of the way while she kept screaming. Then I gave the G tube a good hard push, then another, and another, and finally it popped in. I hurried to reinflate the balloon so she wouldn't make it come out again and then cleaned off her tummy, hugged her, and told her I was sorry for hurting her tummy. Then we both got over it and went on with our day.

I'm glad I got it to go back in but that was ridiculous. Don't get me wrong, there's nothing wrong with MicKey buttons, but the AMT Mini One just works better for Raya so we need to stick to that button. We canNOT do this again though. I can't help but wonder how things would have been different if I hadn't told them that I had a MicKey button in the stoma. They sure as heck wouldn't have told me they couldn't get us in until October 2nd.

I sure do love this girl but some days I really hate feeding tube drama.

(And to be clear, I'm not suggesting that anybody else do things the way I did.)

Unwanted button change...

Ugh. So Raya's tube got pulled out this evening. Normally, pull-outs are no big deal around here. It's as routine as a diaper change, just a LOT less frequent. We switched from a MicKey to an AMT Mini One back in April and I love it, but today has been a bad Mini One day. I tried, and tried, and tried to get it in. I used a RIDICULOUS amount of surgi-lube, the little golf tee-looking thing that came in the kit (which is worthless, btw) and a Q tip inserted in the stem. None of it worked. Want to know why? It might have something to do with her scar tissue.


Yeah. It's big. The AMT button is harder to get in anyway and that scar tissue complicates things. When I had pushed as hard as I could and her stomach was all red and she was screaming at me to stop hurting her and it wouldn't go in, I ended up getting a cruddy old MicKey button out of the emergency kit and putting that in instead. Raya NEVER cries when she gets her button put back in. Not even the times when the ballon popped while she was sleeping and it fell out for goodness knows how long. It was out for less than 10 minutes this time. I've NEVER not ben able to get it back in. I'm okay with inflicting some necessary pain if it keeps us from having to go to the ER where complete strangers who don't love her do the same thing only scarier. It didn't matter though, it just wouldn't go in. We cleaned everything up, let her calm down, and had dinner. After that, I decided I'd try one more time. I had her lay down with her blankets and tried again. I used more lube and tried a couple more times. I reinflated the balloon and deflated it again but pulled it up from the end so the tip of it was narrower but it didn't work. Still wouldn't go in. That time, she cried before I even started trying to get the tube in her stomach. It sucks to have your kid laying thee crying and saying, "No take it out!" Good thing I was having an emotionally stable day or that would have gotten to me. So for now, we're stuck with a cruddy old MicKey button that I'm sure will leak when the extension tube isn't connected.


Here's the dilemma. I knew going to the ER would be pointless. They don't keep AMT buttons in stock there, I don't have a spare kit to take with us, and they can't put her used button back in. In order to get the AMT in, she'll most likely need to have her stoma stretched. (And yes, that procedure is as awful as it sounds, especially if they try to do it without any sedation.) If we had gone to the ER, all they could have done is put a new MicKey in which would not solve the problem of the AMT not going in. (By the way, the AMT and MicKey are both the same size but the diameter of the tips is different. The MicKey is narrower and tapered and the AMT is wider and blunt.) I called the GI on call and explained everything to her and she told me to call the surgeon's office in the morning and see what they want to do. I also thought about calling home health and having them send us a new AMT but if the old one won't go in, I don't know that a new one will either without dilating her stoma. I hope it doesn't get ugly because I've heard way too many horror stories about stoma dilations. I know it could be worse and I really can't complain. We've had a good, long run of not having any problems to speak of do I guess our number just came up. We'll see what the surgeon has to say tomorrow.

Wednesday, September 12, 2012

Dentist visit and lab results

The kids had checkups with the dentist yesterday. I was pretty much dreading it because last time we went, the hygienist felt the need to lecture me about not brushing Raya's teeth enough. I had to bite my tongue because I felt like she was judging me unfairly. She had no idea how far we had already come just to be able to get her in a dentist's office and let a complete stranger brush her teeth while she laid flat on her back without vomiting (either from crying or gagging). It was really aggravating so I was prepping myself for a repeat and had my "don't tell me how to do my job and I won't tell you how to do yours" speech all prepared but it went much better this time. Other than Raya not having a nap on Monday or Tuesday. Or today. She's wearing me out with this no nap nonsense.
The appointment was at 2:00 so by then, she was at the point of knowing she was tired and doing whatever she had to in order to stay awake. Like removing her shoes 10 times in as many minutes and insisting that I turn in the only non-functioning video game console in the while waiting room.


The dental assistant took the two big kids back first and it gave me a few more minutes to keep Raya from climbing on things like the receptionist's desk. No lie. Finally it was the little girls' turn. Kaida went first (more Raya wrangling for me) and THEN it was Raya's turn. Something has been brewing lately with Raya, and when that happens she can NOT be still. Not even for half a second. She was getting a feed while we were there so I got her to wiggle out of her backpack and gave heer a boost so she could wiggle up onto the table thingy. Then I stood right by heer to keep her from wiggling off of it.

I talked to the hygienist about how Raya's been doing with brushing, changes to her meds since her last appt, and what she's eating now. I told her flat out that the only brushing is what Raya does herself because that's a battle that would do more harm than good but that I do help her maybe once a week. I also told her that Raya mostly eats ice cubes right now and that it seems to actually help clean her teeth. Since not much food goes in, the hygienist said there's not much of anything building up on her teeth anyway. She was going to try using the cleaning tool that they normally use to polish teeth but Raya was really antsy and anxious at the moment so she used a toothbrush with a tiny bit of toothpaste on it instead.


She never gagged but she was working really hard not to. She wasn't too sure about the toothpaste either. After that, the hygienist wiped the toothpaste off of her teeth with a piece of gauze. That didn't go over well either and Raya was done at that point. She stood up and hugged me like a baby koala until we told her she was done. Then she got down and played video games with Bubba while we waited for the dentist to come in.


That went fairly well too. The whole staff there is SO good with kids. Raya kept biting the mirror and closing her lips tight so he couldn't get it out. She didn't gag though and he got a quick glimpse of her teeth. We didn't attempt xrays because, let's face it, don't we all gag with dental xrays? When we were all done, they all got their tokens for the prize machines and picked out what they wanted. I wish they had all gotten the same thing because they've been fighting over each other's prizes ever since. :)
Raya's favorite thing in her goodie bag was the floss. All the way home she was jabbering about toothpaste and I was afraid I'd have a big mess to clean up when we got home. Thankfully, she was calling the dental floss toothpaste. She had unrolled the while thing in the time it took us to drive home.


Overall it was a successful trip to the dentist. :) She puked today. I don't know why other than she was being really rowdy. It is nice having her be able to yell, Mommy, puke!" And point to it so I can clean it up while it's still wet. Hopefully it was a fluke. I'd say that I hope she'll get a map tomorrow but she has therapy do she won't. Such is the life of an overscheduled kid from the suburbs! Oh and the labs we did for her magnesium and phosphorus came back normal, which is good. That means the prilosec she's been on for 2 years and 7 months isn't inhibiting her body's absorption of those things. The allergy labs also came back normal. I don't have any specifics yet but that isn't necessarily good news. It's actually very frustrating news because we know she has problems with at least a couple of the 7-8 things her skin tests were positive for. I'm trying to not think about it until we see the allergist in 2 weeks.

Monday, September 10, 2012

SUCH a Monday

Alternative use for cases of formula & Pedialyte:


Soaking up apple juice (that nobody asked if they could have) out of the rug (in the living room where food & liquids are off limits). To make things even more fun, I discovered when I got the carpet shampooer out of the garage that the last time it got used, the yucky water got left in it. I won't even say what it smelled like. I'm pretty sure it was me that left it. I think it was the last time someone (not me) unhooked Raya without turning off the pump and fed 8oz of vanilla flavored Peptamen to the backpack and carpet. Ironically, that was the original reason I was going to get it out today. There was another formula mishap on Saturday and the whole room has a yucky vanilla-ish smell. And we're moving in 2 weeks and 4 days. And the house is supposed to be ready for people to look at. Eek. Yeah, today is such a Monday.

Wednesday, September 5, 2012

Dear Nestle'


Dear Nestle',

For the love of Pete (that's Raya's nickname, by the way), PLEASE get rid of these awful "tetra pak" cartons and change the formulation back to the way it was before you ditched the cans. I'm tired of spilling formula everywhere when I try ever-so-carefully to pour it into the 1.5 inch wide opening on the feeding pump bags and Raya is tired of being constipated. And don't bother trying to tell me that the formula is the same and the packaging is better. The poop changed when the packaging changed, she's not the only kid that's having this problem and I'm not the only parent who hates the cartons.

Sincerely,
The mom.

Monday, September 3, 2012

Public service announcement about meltdowns

This picture was NOT taken between 5:45 and 6:15 this evening...
This is not my first post about meltdowns and it probably won't be my last. Meltdown is an ugly word. Watching a meltdown is ugly. Watching YOUR child have a meltdown is scary, sad, disturbing, frustrating, and embarrassing. Scary because there's very little you can do about it. Sad because you know your child is a good kid who doesn't mean to "behave" like that, although sensory-related meltdowns have little or nothing to do with behavior. Disturbing because your child who 5 minutes ago was happy and playing has suddenly transformed into a screaming, thrashing, wild little creature that barely even resembles your child. Frustrating because it always happens at inopportune moments like when you've spent 2 minutes too long in the grocery store and he/she is ready to leave NOW. And yes, it's embarrassing no matter how secure you are with yourself as a parent and how little you value the opinions of total strangers. Because let's face it, in the general public, nobody cares why your child is kicking and screaming and hyperventilating and burying their face in their shirt while snot runs out of their nose and they gag and cough. All people see is a kid throwing a fit. You can see the looks of disgust on their faces and feel their judgemental stares, as if they just KNOW that you must be a terrible, weak, permissive parent to allow your child to act like that in public. But the worst part of watching your child have a meltdown is wondering how it will impact their future if they don't learn to cope with the things that evoke those fight-or-flight responses from their nervous system.

Did you know that a sensory-related meltdown is a fight-or-flight response? It's true. The same instinctive reaction that kicks into action when our lives are threatened can evoke what may look like a temper tantrum in a child with sensory processing disorder (or sensory integration dysfunction, whatever you like to call it). According to Angie Voss, OTR/L who has a FABULOUS website about sensory processing disorder, this is what fight-or-flight can look like in a child:

What Does “Fight or Flight” Look Like?There are many different manifestations of “fight or flight” but some common responses may be:
  • Hitting, kicking, biting, spitting, pushing (especially while standing in line or in new challenging/overwhelming situations or activities)
  • Trying to run or escape from the situation
  • Trying to hide under something like a desk, table, or chair
  • Burying themselves in a teacher’s arms, avoiding all eye contact, or trying to curl up in a ball on the floor or at their desk
  • Covering ears or eyes
  • Crying or screaming
  • Hiding in the closet, under couch cushions, or under covers in bed
  • Shutting down completely and not speaking or responding
  • Even falling asleep unexpectedly
(For more information, visit www.understandingspd.com; material copied from here.)

This evening, Raya had what was probably one of her worst meltdowns yet. It started out when I got home from the store and the 3 kids I had left home were sitting at the table eating. When I walked in the door, Raya immediately started whining to me because she was unhappy with Daddy about something. The big kids were eating dinner and Raya wanted a "big chip" because she had already eaten half of her tortilla chip. She started crying when Donny reminded her to say please, and it went downhill from there. First she was crying about that. Then she was crying because she wanted cheese on her chip. Then she was crying because Donny took the chip out of her hand so that I could wrestle her out of the poofy dress-up dress she was wearing over her clothes and an apron. Then she was crying even harder (almost to the point of hyperventilating) because she wanted sour cream on her chip, which she's not allowed to have for the time being. At that point, she had gotten into the high chair and I could see that this was not going to end well, so I got her down and took her into our room where it was dark and quiet to lay down on our bed with her. All the way there, she kicked and screamed and tried to get away from me. She was yelling things that I couldn't understand & didn't make any sense. When I laid on the bed with her and her blanket, the screaming turned into a high-pitched scream that I don't think I've ever heard come out of her. I'm pretty sure all the neighbors could hear it too. She laid there and kicked, yelled at me to let go, and screamed while trying to get away from me. (I wasn't restraining her, I just had my arms around her waist so that she wouldn't get off of the bed.) I turned on the relaxing music that usually helps her calm down but it did nothing for her. Well, except that she started screaming that she wanted to watch Backyardigans on my phone, which I was not about to let her do. I didn't even try to communicate with her because she was well beyond communication at that point. She gagged and coughed several times and luckily didn't have anything in her stomach to vomit or she probably would have. She threw a pillow to the other end of the bed, buried her face in her blanket, and continued to kick, thrash around, and scream as loud as she could make it come out. After several minutes of screaming, Donny came in and picked her up and sat her on his lap. She was somewhat calmer but still crying uncontrollably and breathing rapidly and unevenly. At that point, I left the room because me (and my phone) being there didn't seem to be helping at all. He ended up putting her in the shower and a few minutes later she was feeling much more calm and relaxed and had pretty much pulled out of the meltdown. The whole thing lasted about 30 minutes.

So my public service announcement is this. Sometimes kids have meltdowns. They have nothing to do with the character of the child or the parenting skills of the parents. Some kids' brains don't regulate emotion correctly. They turn a simple disappointment or frustration into an overwhelming emotional obstacle. Meltdowns are not just a child throwing a fit because they didn't get what they wanted. In this case, what triggered the meltdown may have been the fact that she didn't get to have cheese or sour cream on a chip, but there are plenty of times when I don't give her something she wants and she doesn't have a meltdown. The real underlying issue here was that for the last 2 days, she hasn't had a nap and last night she stayed up until 9:00 because of Kaida's birthday party when she usually goes to bed at 6:30 or 7. She was overly tired and she just couldn't cope with how she was feeling.

Thankfully, this doesn't happen too often and it's usually when we're at home. It's almost always related to lack of sleep, disruptions to her schedule, and feeding. We do what we can to prevent them. We do our best to keep her bedtime, nap schedule, and feeding schedule consistent but I can't always do that because we have appointments to go to and 2 older siblings (and Mommy) in school. I'm grateful that this one was at home because watching her in that state of complete chaos is hard enough for me emotionally without having to deal with strangers staring at her and judging both of us. She's a good girl and I'm a good mom, but to see her like she was tonight you'd think the exact opposite. She just got a little too tired. Hopefully tonight she will get the sleep she needs to recharge her body. And thank heavens we have OT tomorrow!

And to end on a positive note, Raya had a nice little snuggle with her grandpa last night. Usually he's chasing the kids (because they love it) and making them scream but she just wanted to "suddle" with him. She climbed up on the couch next to him and they pretended to snore together. :)
And THAT is the Raya that we know and love. :)

Sunday, September 2, 2012

Can she dress herself?

I've been filling out Raya's preschool evaluation paperwork. One of the questions on one questionnaire was, "Can your child dress him or herself?"


Judging by the blue plaid dress she's wearing around her waist on top of her hot pink skirt, I'm going with no.
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