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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.**

Monday, October 31, 2011

Happy Halloween Indeed!

Last year, Raya spent her first Halloween as a little caged turtle at Phoenix Children's Hospital:
She was on contact precaution and she wasn't even allowed to leave her room, so only about 5 people even SAW her Halloween costume last year.

This year, she's our little blue Angry Bird. :)
Life is MUCH better on the outside! :) Happy Halloween!!

Thursday, October 27, 2011

Lab results & feeding changes

We made another trip to the "red and purple doctor office" today, AKA the GI clinic. Any time my 4 year old would come with us to the doctor, she HAD to know which doctor's office we were going to, so we identify which is which by things like the colors of the outside of the building, the one with the red table that has movies on, the one with the germ room, etc. :) Anyway, today we were at the red and purple office so Raya could have a visit with her GI doctor. We hadn't seen her in 2 months and I was crossing my fingers that she'd had some weight gain this time since she only gained a couple ounces between her last GI visit and her weight check a month later.

The whole visit just started off on the wrong foot. Last time Raya did great and was friendly & happy to see everyone and did everything the doctor wanted her to, so I thought we'd be fine today. Raya got really mad at me when I started trying to take her clothes off. Usually she can't wait to strip down to her diaper & run out in the hallway to the scale, but this time she kept yelling, "No wannih shuh off!" (translation: I don't want my shirt off!) She kicked & screamed the whole time we were trying to measure her height (34" give or take a little, kind of hard to be accurate with all the kicking & screaming). She enjoyed having her head measured and getting her blood pressure taken though. Her temperature was 99 for some reason.

Thankfully today, her weight was up to 12.1kg, or in American, 26 lbs 10.81 oz. :) That means she gained almost exactly 1 pound since her weight check a month ago. Good enough for her doctor and good enough for me. I was just glad she didn't lose any or stay the same this time. :)

So once the doctor came in, the crap really hit the fan (no GI pun intended :). She needed to examine Raya, but Raya was playing with a giant toy that was in the way, so the doctor took it and set it aside so she could do what she needed to. That's all it took for all h-e-double hockey sticks to break loose. Raya screamed and cried the rest of the time we were there. She and Kaida were fighting over the aforementioned problem toy and running around making all kinds of noise, the doctor seemed tired and stressed (I swear she's lost weight too and I think it's because she misses her nurse so much :), and the whole thing was just ridiculous. We were sitting 2 feet away from each other and could hardly hear each other. (did I mention I'd had to wake Raya up from her nap to go to the doctor? no more 1pm appointments for us!)

So here's the good and bad of it. Bad first. Raya's allergy labs came back normal. Just as I had pessimistically predicted. Really, I knew they probably wouldn't come back positive because she's had absolutely no rice in her diet and her exposure to milk has been very limited, so everything came back a zero. Very frustrating. I was actually a little angry when she read me the results because I have SEEN the reactions her body has when she ingests rice & dairy. (you should see the eczema on her legs right now)

Oh, and BTW, the little pill learned how to open the refrigerator door. Yesterday, I had my back turned and Donny walked in just in time to see Raya standing with the fridge open and drinking out of the milk jug. Nice, huh?

Anyway, I told the doctor about the times that Raya has woken me up at 4-ish in the morning crying and squirming around in her bed like something's wrong with her and then gone back to sleep and the eczema getting worse and she said she didn't know about the crying in her sleep but the eczema is definitely typical of an allergic response. The only thing we can really do is continue to avoid the things we know she has adverse reactions to even though the stupid allergy tests keep coming back negative.

Now here's the good. If she tolerates it well, then it will be REALLY good. We are officially tapering off the night feed. We will be shifting the formula she gets overnight to her daytime feeds so she'll still get 4 feeds during the day but they'll be higher in volume. That's the tricky part. Giving her feeds higher in volume puts her at risk of 2 things: vomiting and/or spitting up due to not being able to handle that much in her stomach at a time, and having even less desire to eat because she's more full from the larger feeds.

Enter Periactin, generically known as cyproheptidine. It's an antihistimine that is also known to stimulate appetite and may or may not help with slow motility. Since Raya doesn't seem to give a hoot about food and there's no rhyme or reason to when, what or how much she eats, we've decided to give her a trial run on periactin to try and increase her appetite (or give her one, period). She may get drowsy (which wouldn't be an entirely terrible thing :) and she might get really hungry but still not associate eating food with alleviating hunger, so she might just get really crabby instead. The only catch now is that the doctor says we have to wait until her 2nd birthday to start the periactin because the American Academy of Pediatrics is adamant about children not being on antihistimines until the age of 2. I'm not in a rush and really don't mind waiting another 2 weeks.

BUT the really really good news that I briefly mentioned & then changed subjects is that we will be getting rid of the night feed. That is HUGE. That means that there is a chance that in the near future, Donny and I will both get to sleep all night long without being woken up by "NEE-ner NEE-ner NEE-ner..." In case you need an interpretation of what the sounds like in real life, listen to the first 5 seconds of this video:
My only complaint about the sound in that video is that the actual alarm is MUCH louder and more obnoxious. :) So yes, we are both VERY excited about the prospect of not having to wake up to turn the alarm off, and probably even more excited about not having to make sure one of us is awake to set up her night feed.

I'm trying not to get too excited yet because in order to get rid of the night feed, she has to increase her current volume from 180ml per feed (6 oz) to 225ml per feed (7.5 oz). That doesn't sound like a big increase but her body has never dealt with change well and that's a bigger change than it sounds like. So far, I have increased her feeds to 200ml and she spit up after the first one, so it may take some adjustment time.

The other major change her GI doctor wants us to make is to start putting some real food through her tube. I feel like we are very lucky because I've heard so many stories of doctors being completely opposed to that sort of thing. She wants us to work up to the point where Raya is getting 350 calories from real food (180 of it to be eaten orally), and the other 600 from formula so that she's getting the complete nutrition that it provides. (mainly calcium and protein since milk/yogurt/cheese products are still not an option) I'm pretty excited about this because it will allow Raya's body to start adjusting to real foods even though at the moment she's unwilling and not completely able to eat them. And because I can start to use some of the ridiculously huge supply of syringes that we have stockpiled for months. :) It's going to be a LOT more work than what we're doing now (popping open cans & pouring them in the feeding pump) but it will be worth it.

So those were the good parts. They are very good and very exciting, but it was hard to feel excited when I was literally wrestling with my very strong almost 2 year old who wanted nothing more than to get away from her doctor. All the doctor wanted to do was feel Raya's belly to make sure everything was normal, but Raya was not having it. It was the worst fit she's ever thrown at that doctor's office (which is always embarrassing) and the only time(s) I can think of when she's gotten that worked up about ANYTHING are the times when she had to get IVs and it took multiple sticks and multiple people and much more time than it should have. I know the doctor likes us, but I think she was just as relieved as we were when our appointment was over this time.

We're still waiting to hear if there was anything abnormal in the results of the labs we had done for neuro, but I'm not really worried about those anyway since she's had them all done before and doesn't really fit the profile of having any of them be abnormal.

And last but not least, this evening we took Raya outside into the beautiful weather and I did her 2 year pictures. I'm saving them for her birthday post, but I'm excited with how they're turning out so I thought I'd post one. :) She is a busy, busy girl but we had a good time and it was a fun way to end a rough day. :)

Wednesday, October 26, 2011

Stress over unknowns and other ramblings

Every now and then, things just pile up and you just have to let it all out, so here's what's stewing right now. Since this is mostly for my own cathartic purposes, feel free to skip reading this. :)

Being Raya's mother has changed who I am. Well, really each of my 4 kids has changed me in different ways, but Raya has changed the way that I deal with the things that life puts in front of me. I can look back on so many situations before she was born that stressed me out, frustrated me, made me angry, or scared me and realize that even though my feelings were valid, those situations probably weren't as significant as they felt at the time. I think we can always look back and see how things would be different if we'd only known then what we know now. :)

Several months before Raya was born, we entered the awful process of trying to modify our mortgage loan. Anyone who has done that will understand why I used the word AWFUL. It was months upon months of phone calls to the bank, paperwork, more paperwork, waiting, and all the while wondering if we were doing the right thing. Without going into further detail, I will say that the process of applying for a modification, receiving a ridiculous response from the bank, deciding to reject the bank's "offer", and then deciding to sell the house (followed by going through the grueling short sale process :) helped me to let go of some of the stress and anxiety that I'd always had concerning mortgage and credit (as in maintaining our perfect payment history & high credit score). The REASON I was able to let go of that stress was because during that process, a little bitty girl named Raya was born. (no seriously, one of the banks sent me another packet of paperwork to fill out and called us WHILE I was in the hospital just after having Raya saying they needed it back within 5 days) They were lucky that Donny was the one they talked to that time because my inhibitions were low and I would have said naughty words.

At first, things weren't too out of the ordinary with Raya and all the loan stuff was just an annoyance that took up time that I could have been snuggling with my tiny new baby, but I still felt a lot of pressure to jump through every hoop they threw at us. All of that changed after Raya's first hospitalization. All of a sudden, I was so overwhelmed with trying to keep her on her complicated feeding and medication schedule and keeping myself to a strict diet so that maybe she could go back on the breastmilk I was pumping 6 times a day religiously that I literally did not have time or energy left to care think about the loan modification. Or anything else that I had previously thought was a big deal.
Instead, my thoughts were consumed by things that I had been blissfully ignorant to before, like if my baby was going to need the different surgical procedures that were brought up, if I would ever be able to breastfeed her again (and we know how that turned out :), if there was something seriously wrong with her digestive system, if she had any of the degenerative and eventually fatal diseases that were discussed as possibilities, why she wasn't meeting certain milestones, if her body would ever tolerate real food, if she would ever eat (jury's still out on that one :), if we would EVER figure out what was wrong with her, and just what devastating surprise might be lurking around the corner. Once your world has been rocked by something traumatic, you realize that you are not immune to the bad things that you thought only happened to other people.

On top of that, there are 3 other kids and a husband who have undoubtedly felt neglected from time to time since Raya was born. It is a sick feeling to have to ask other people to take your other 3 kids for you while you stay at the hospital for goodness knows how long with the 4th kid. It is even more disheartening to actually have no choice but to LEAVE your kids with someone else as often as mine have had to be left during all of Raya's appointments & hospital stays. I've heard a lot of moms of babies in the NICU say that no matter what you do, you feel guilty because either way, you're leaving part of your family behind to be with the other part and you feel like they all need you. We've never done the NICU, but I can certainly identify with that. We've been so blessed to have friends and family that our kids were comfortable staying with but even so, it didn't make me feel any better about inconveniencing them or leaving the kids.

While I feel like I've done the best I could to manage everything in the past 21 months since all this started, and I feel like I've done a pretty decent job with Raya, so many things have fallen through the cracks. My house is always a mess and I was pretty much completely absent in the kids' schooling last year. Raya had surgery 6 days before school started, and what was supposed to be a 24 hour hospital stay turned into 5 days of unexplained fevers, intense vomiting episodes, and intolerance to feeds (because the dumb resident wouldn't listen to me and I wasn't insistent enough, which also didn't make me feel very good about my role as Raya's advocate. lesson learned though.). During that 5 days, I missed Meet the Teacher Night and a baby shower I had been really looking forward to. School started and most nights, I felt like I was doing pretty good just to get everybody fed, cleaned (sometimes :), and in bed because we were adjusting to life with a brand new and very leaky G tube and new feeding schedule, so homework didn't always happen. I was oblivious to the lack of support that my oldest daughter was getting from her teacher, and because I was never able to be present in her classroom and her teacher never expressed that there were any concerns, I had no idea there was a problem until some of her grades (and her self-confidence) suddenly plummeted.

Then Raya got admitted to the hospital again in October. Again, we thought it would only be 24-48 hours, just long enough to give her gut a rest and place the GJ tube. Instead, I missed 15 days of my kids' lives, missed parent teacher conferences and another opportunity to discuss concerns with my daughter's teacher, missed another baby shower or two, had to humble myself to allow other people to take care of my family in my absence, missed Halloween with the kids, lost my cool with a couple of rude nurses (which I don't totally regret but am not proud of either), and just felt frustrated with not being able to be superwoman and be everywhere I needed to be.
Then when we came home, we had the post-GJ tube placement craziness that involved Raya coming home on 6 meds that had to be given at various (ridiculous) times around the clock along with her 20-ish hour a day feeds and continuous drainage and measuring of her gastric drainage into an awful little contraption that a nurse rigged up, all while trying to keep an active 11 month old from pulling out the GJ tube that would require a hospital trip to put back in. Try fitting things like cooking dinner and helping kids with homework into THAT schedule. Oh, and not to mention the PT & feeding therapy appointments and weight checks and follow-ups and whatever appointments the other 3 kids were going to. Then the 2 little girls and I missed Thanksgiving with the family last year because one of them was sick and we didn't want to share the germs.
Right after she came home from the hospital in November, we were notified that Raya would be having motility testing done in Ohio in the middle of December, so once again, I had to ask other people to take care of the other 3 kids while I deserted my family to take care of business with Raya. That time, I missed a few more small but important things like the holiday event at the kids' school and another friend's baby shower. In January, we added more therapies and upped our average to 3 appointments a week. I never once made it in to volunteer in the kids' classrooms last year like I wanted to and didn't go on any field trips like I wished I could have.

Even with all of those things (and everything else I didn't bother to mention), I never allowed myself to dwell on feeling guilty because I knew there was nothing we could have really done differently. However, being human, sometimes I can't not think about it sometimes, especially when certain comments are made that imply that I should feel indebted. I only WISH I could be everything to everyone, but I can't. Although time management is not my sharpest skill, having Raya has helped me to clarify what I'm willing and able to spend time on and what takes too much of my focus away from my family. I have had to let go of a lot of things that I used to spend time on because they just don't fit in anymore. There are other things that I've had to put a value on in order to continue doing them. I (and sometimes WE) have had to skip out on a lot of events, sometimes at the cost of hurting other people's feelings, because the effort required was just more than I had it in me to put forth. Traveling with Raya involves a lot of planning and packing, even just for a little overnighter. Anywhere without electricity is automatically out too since Raya's feeding pump battery only lasts so long. :) The amount of stuff we have to take with us just for her is more than what any of the rest of us need. Then there's the whole fear of what could or would happen if she caught a respiratory virus or the flu. And sometimes we opt out of things because it's just plain easier to stay home.
It's hard not to be somewhat pessimistic about everything. While I do fully acknowledge and am SO grateful for the huge progress she has made and for her overall health & strength, there is that constant, nagging thought in the back of my mind that wonders when the bottom will drop out. I remember one time when Raya was in the hospital I was talking to my mom and said something to the effect of, "Next time Raya's in the hospital..." and she said, "You can't think that way, you need to think positive!" and my reply was, "Mom, my child is being fed hypoallergenic formula through a tube in her small intestine. There will probably be a next time." It's sad that my mind works that way but it does. I don't mean to be negative, but like I said, when you've had that naivety yanked out from under you, you can't help but think that way. I feel like it's more being realistic than necessarily being negative.

Having met some of the kids we've met at the hospital and having seen some of the things we've seen other people go through, we can't help but feel so blessed that what we're dealing with is what it is. I count it as a huge blessing that we've never been faced with the reality of something imminently life-threatening like other people we know. We've never had to wonder if Raya would live or not, and for that we are very grateful. Things have gotten better as she's grown & her body has learned to cope with things. Even if she never eats and stays on the feeding tube her whole life (heaven forbid :), she could live a full and happy life that way.

At church last week (which I was happy to attend all 3 hours of for the first time in a long time, by the way), someone was talking about how faith and fear can't coexist. Maybe I don't know what I'm talking about, but I disagree. I have complete faith that no matter what happens in our lives, God will continue to provide for us as He always has. I have never felt deserted by God, even in the darkest moments of my life (like when my 18 year old sister was killed in an accident). Conversely, those are the times when my faith has been strengthened the most BECAUSE I know that God did not desert me during my times of greatest need. At the same time, my eyes have been opened to the fact that bad things do happen to good people no matter what kind of a life they're living. The scriptures are full of stories about good people who suffered horrible tragedies. Having experienced things that I had previously been blissfully ignorant to, I do live with a fear and even an understanding that tragedy can strike anyone at any time, but that doesn't change or lessen my faith in God.

Blah, blah, blah, where am I going with all this? Nowhere, really. Just getting it all out. There seems to be a cycle to the madness. Raya will do great for a while, then there will be a bump in the road followed by tests to try and identify the cause of the bump, followed by waiting for results from the test, during which there is the inevitable period of me trying not to drive myself crazy wondering what the results will be and what we'll have to do about it while also trying not to google anything and trying to discern between "symptoms" and normal quirks. Tomorrow, Raya will see her GI doctor that we haven't seen in 2 very long and tiring months. We will confirm whether or not she's gained weight in the last month, I will ask about trying a medication to stimulate appetite, she will probably say no again, I will probably be fine with that since the side effects might not be very pleasant anyway, we will hopefully have results from all or at least some of the labs she had done 3 weeks ago, then depending on what the allergy results are I might beg her to do another endoscopy with biopsies but probably not, then we'll probably adjust feeding schedules and possibly meds again, she'll tell us to come back in 2 or 3 months unless Raya still hasn't gained weight, and life will go on. Evidently, until then, my mind will continue to race through possible scenarios of what could have caused some of the strange things that have been happening lately and my stress-related irregular heartbeat will keep being annoying and maybe I might get 3 straight hours of sleep tonight before the feeding pump alarm goes off for no good reason, followed by Raya crying and writhing in her sleep again for no good reason (except for maybe the milk and pudding I fed her yesterday to see if anything happened again). And the school carnival that I'm donating a photography session for is on Friday and I haven't made the gift certificate yet and the church Halloween party is on Saturday and I haven't made anyone's Halloween costumes yet. And there are 6 of us.

See, even people who like to think they appear to be perfectly normal and have it all together can be totally whiny and a little crazy under the surface. :)

Sunday, October 23, 2011

First day of respite

A few more threads of the apron strings were cut today. We FINALLY started using the respite care that Raya's been eligible for since sometime earlier this year. We met Megan a couple weeks ago and Raya instantly loved her. We feel like she will be a good fit for Raya. 

It really shouldn't have taken that long to start making use of this great resource that we're blessed to have available to us. I'll admit that part of the reason it took so long was that I was having a hard time with the idea of leaving her with someone, especially when she still had the GJ tube. Her care was MUCH more complicated then. Another reason was that I was trying to find a family member or friend that was willing to do it and couldn't find anybody. I had called one agency a couple of times and they only returned my phone call once, and after a month of trying to get somewhere with their agency, I gave up on them.

A few weeks later, I happened to be at an event for Down Syndrome and there was a respite care agency with a booth there. I got their information & contacted them and the rest is history. :) I was told earlier in the week that we would have to wait (like everyone else in AZ that gets respite care) to get the hours authorized again because of changes to the program that went into effect on the 1st of October. We thought we'd have to wait another week or two, but the next day I got emails from the provider and our coordinator saying that the approval had gone through & we could start.

Another reason we hadn't started yet is because I wasn't sure what to use the hours for. I'm used to having my schedule dictated by Raya's appointments and whatever the other 3 kids are doing, so I really didn't have anything specific in mind. Then Raya went to nursery at church, and after 4 weeks, she caught a cold. Not that nursery was definitely where she picked it up, but it was pretty likely that it was. We've always felt really lucky that Raya has been as healthy as she's been (as in free of illness healthy :). Then when she got a stuffy nose, she instantly lost interest in the little bit of food that she had been eating. It was our first real taste of how quickly & easily the progress we've worked hard for towards Raya eating can be reversed, and we decided that we'd be well to use some of our respite hours to keep her at home instead of taking her to church. Our decision has been met with mixed reactions, so not that I really need to explain myself, but I thought I'd explain a little more about that decision.

After seeing how much she was affected by a mild little cold, we realized that we had no idea what the effects might be if she were to catch something more serious, like the flu. Nobody can say for sure, but to me it just seems logical that if it was so incredibly difficult to resolve her months of uncontrollable vomiting and regulate the hypersensitivity in her gut, a stomach flu could send her body right back to where it was before. We have seen over and over again that her body doesn't react well to changes with her digestive system, and a flu virus could possibly wreak havoc on her GI tract. After 18 solid months of vomit and everything that goes with it, I have no desire to see Raya go back to that life. I don't think my washing machine or my heart could deal with it.

Overreacting? Perhaps. I've always been slightly on the germophobe side, especially since Raya came along. She might get the flu anyway. She might get the flu and handle it like a typical child. But she might not. After having all of the experiences that I've had in taking care of her; experiences that most people will never even know about or understand, I'm not willing to take that risk. We are blessed enough to have this resource available to us and we feel like keeping her home for a while is the best thing for her. For the next few months, she won't be going too many places, especially if there are sick people.

Being at church with Donny and the other 3 kids but not Raya was very strange. I realized that it will take some time for me to get used to sitting all the way through church again. It's been a very long time since that's happened. I was always walking the halls with Raya or taking her in the mothers' room to change her diaper or set up a feed or something. She was always a restless baby and I haven't heard many of the lessons or talks at church since she was born so I'm looking forward to that. Megan is also coming for a couple hours tomorrow so that I can go grocery shopping and run some other errands (like figure out Halloween costumes) with 1 kid instead of 2. :)

Friday, October 21, 2011


Raya had a strange thing happen this week that I thought was worth documenting, so here it is. On Wednesday morning, Raya helped me make some Jell-O Oreo pudding. I would have taken a picture but I was too busy trying to keep her hands out of the bowl. I'm sure it probably wasn't the most sanitary process and there was definitely some double dipping involved.
Anyway, we made pudding, which I didn't expect her to want since lately she doesn't want much of anything. I dished out some for Kaida and some for myself and we sat down at the table to eat it. Raya climbed up on my lap and begged for bites, so I fed her as much as she wanted. After mine was gone, she still wanted more so I gave her some of her own, which promptly ended up smeared all over her hair. She had eaten about 1/4 cup total, which was the most she'd ever had of a milk product (except for maybe yogurt but that's a little different). I hosed her down and the day went on as usual.
At 10:30 that night, she woke up and had a fever of about 100.6. This is where it starts to get strange. The fever was the ONLY symptom. She didn't have a runny nose, no vomiting, no funny breathing sounds, no cough, no diarrhea, no rash, no tugging at ears, or anything else to indicate what was causing the fever. Since it was only 100, we decided to still give her formula overnight & see how she was in the morning. When she woke up yesterday, she still had a low-grade fever right around 100 but still had no other symptoms at all. I had decided to run pedialyte for a while instead of formula just in case things were going to get worse before they got better, but I wasn't sure what rate to run it at. I left the new nurse a voice mail at 8:15 asking whether I should run the pedialyte at her overnight rate (85ml/hour) or at the rate we do her bolus feeds during the day.
She called me back a couple hours later and said that since her temperature was only 99 or 100, pedialyte wasn't necessary and that I should schedule an appointment with the pediatrician. I didn't. (Then I realized that this nurse now probably thinks that I'm the helicopter parent that freaks out and calls the specialist when her kid runs a tiny fever.) I meant no disrespect by not doing what she recommended but taking her to a germy pediatrician's office for a 99.9 degree fever didn't seem like a good idea to me.
By noon-ish, the fever was gone but I noticed that the eczema on her legs was MUCH worse than normal. The fever never came back and by this morning, the eczema was back to the way it normally is. (she's had it since she switched from Neocate to Peptamen but the improvement in GI symptoms was worth the eczema)
I had asked the nurse if the lab results had come in yet but she said they were really busy because they were short a couple of nurses and she didn't know. I called the allergist's office and asked them but they said they didn't have them yet because it takes at least 2-3 weeks to get them back. Then of course, I called or texted friends whose kids have eosinophilic esophagitis to see if this sounded remotely like what their kids experience when they eat something they're not able to eat. Raya's been tested for EE before with endoscopies & biopsies and they've always come back clean, but she's always been on nothing but hypoallergenic formula when she's had them done.
This afternoon, I emailed my whole little story to the nurse and asked her to let the doctor know since nothing like this had ever happened before. She called me back a few hours later and said that the doctor thought it would be very strange for a food allergy to cause a fever but not impossible. She said to wait 5 days and then give Raya a teaspoon of milk & see what happens. If she tolerates it, we can go up by a teaspoon at a time & see if she continues to tolerate it or not. Bless her heart, sometimes I think she just tells me things like that to pacify me because we have an appointment with her in 6 days anyway and the lab results should be in by then so we'll know whether or not Raya's allergic to milk. Until then, I will continue to overanalyze what could have possibly caused a 12 hour fever of 99.9 degrees with no other symptoms except for aggravated eczema (oh, and one diaper that than normal) and will continue to wonder whether or not the 1/4 cup of milk in the pudding she ate could have been the culprit.
See, this is what having a mysterious child does to a mother. One little thing happens and you spend the next several days completely driving yourself crazy trying to find answers to the same old questions that may never have answers.

Wednesday, October 19, 2011

What a difference a year makes

This morning as we sat in the little exam room waiting for Kaida's GI doctor to come in (yes, big sister has digestive issues too), I realized that it was exactly a year ago today that Raya was admitted to PCH for "the big one". It was a Monday, and Donny had flown out of town the day before and wasn't coming back until the following Sunday. It was the kids' last day of fall break and we had gotten up that morning and decided to do some serious cleaning. I had gotten tired of the smell of Raya's pack & play that she had been vomiting in several times a day for many, many months. I took the smelly bed out of my smelly room and put it in the kitchen on some towels so I could clean it. I got a tub of hot, soapy water and a scrub brush and soaked that thing down. When I had scrubbed all that I could scrub, I turned it upside down to dry.
While I was cleaning Raya's bed, I had made her a makeshift "cage" out of the baby gate and some waterproof mattress pads & blankets on the floor in my room. I went to check on her when I heard her throwing up, and saw that she was still vomiting old blood. Not a surprise since she had been for over a month. This was a little more than she had been doing, and I had realized over the past few days before that that her vomiting was increasing in intensity and overall, she just wasn't feeling well. Just for kicks, I took a picture of what she had thrown up onto her blanket and emailed it to the nurse so she could show the doctor what we were dealing with. Sorry, but here's what it looked like:
All of the dark-colored flecks are blood.
 After I finished with the pack & play, we moved on to cleaning & organizing the play area. As soon as I had torn everything apart to give it a good thorough cleaning, the nurse called. She said that the doctor had seen the picture & read my email and had called the hospital to let them know that Raya was being admitted. She said that she'd call me back when they had a room ready. The next task was farming out the kids since Donny was out of town. I panicked a little at first because the kids had school and I didn't know who I was going to be able to talk into staying with them or taking them for me. I called my friend Robyn, and the conversation went a little something like this, "So Robyn, I know we've only known each other for about 2 months, but would you mind letting my 2 school-age kids sleep over at your house for an indefinite amount of time while I camp out at the hospital with Raya?" Luckily, Robyn is a saint and gladly took the kids for me, and reassured me that it would be no big deal at all. I had to abandon the soaking wet, upside down pack & play in the kitchen and the torn apart play area & living room and scramble to pack up what they would need for the week. As soon as the hospital called, I dropped them off at Robyn's house. On the way to the hospital, I dropped Kaida off at my sister-in-law's house and called to cancel Raya's feeding therapy appointment for the next day.
The first few hours were rather unpleasant. Raya was no dummy and it wasn't her first time at the hospital. The reason her doctor admitted her was so that she could get IV fluids and go on gut rest for 24 hours and then get a GJ tube placed. She estimated that we'd be there for 2 days or so. I had packed an extra bag of clothes in my car just in case. Once we got checked in and into her room, the next item of business was the IV. She has tiny veins that roll easily and have a lot of valves in them, so she rarely gets away with less than 3 pokes.
I'd have to look and see what the exact time line was on everything but either Monday or Tuesday we went down to IR (interventional radiology) for the GJ placement. Since their first attempt in September had failed miserably and she happened to have an IV in, they gave her versed through her IV to relax her. The GJ tube went in with no problem and we headed back to her room with high hopes that the vomiting would stop, or at least slow down since there was nothing going into her stomach.
It didn't. She puked and puked and puked. Instead of puking formula, she vomited bile. It was awful to watch (and smell). To alleviate the vomiting, they wrapped a preemie size diaper around the G extension tube and allowed her stomach to drain and vent. For the next few days,
I changed her diaper and I changed her G tube diaper, and the G tube diaper smelled 10x worse than the other diaper. The closest comparison I can think of is a skunk. It's pretty sad when your child smells so bad that you don't want to get too close to her.
After she started losing so much fluid from her stomach and continued to vomit several times a day, the whole game changed. I knew we weren't going home until things were under control, but nobody had any idea how long that would be or how exactly to get there. Our roommates changed every couple of days for the first week. We ended up having a miserable experience with one roommate that just happened to be at the same time that Raya's nurse (who is the ONLY one out of 17 that I REALLY didn't like) decided that Raya needed to be tested for c. diff (a really awful illness that causes diarrhea and is highly contagious & isn't killed by hand sanitizer). Since she was being tested for it, she was quarantined to her room until the test results came back, but since the nurse had dilly-dallied around in doing the test, the results wouldn't be back until the next day.

That was probably the most miserable day of the whole thing because we were essentially quarantined to our room with a roommate who had been brought into our room in the middle of the night suffering from an unknown illness that caused her to have diarrhea & vomit. I was furious when I found out because she had NO business being in the room with my GI-compromised but otherwise healthy child. The roommate's parents spent the day arguing with every doctor and nurse they could find to argue with, and just made the day miserable for everyone. Our tech violated the protocol for contact precautions right in front of me, so once I complained to the charge nurse about my concerns, they moved us into a new room with a teenage boy that had MRSA. The next couple of days pretty much sucked too, but we got a really nice roommate and I told them not to assign that nurse or tech to us again. I got visits from a couple of friends that really lifted my spirits and Donny came to visit a couple of times so I could go home and take a shower & get clean clothes.
For several days, all we did was monitor her fluid loss and keep checking her weight and changing her sheets every time she puked. We adjusted her medications and waited to see if it helped. Halloween got closer & closer and then it came & went and we were still there. Finally, the day after Halloween, the doctor that had been doing rounds for the week decided that she would be better off at home and we were discharged. She came home on 6 medications and a crazy contraption a nurse rigged up to catch and measure Raya's stomach drainage.
One year later, we are in a completely different place. A lot of good came out of that hospital stay. Because things escalated to that point, she was accepted for motility testing and scheduled a few weeks later rather than the 4-6 months they had told me we'd have to wait. The changes we made during that miserable hospital stay eventually worked for Raya. 6 or 7 months later, she finally stopped vomiting. She's back to being fed into her stomach and for a while, she was eating 100-200 calories a day. She went from this:

October 2010
to this:
She's bigger, stronger and healthier than she was a year ago and life is much less hectic and stressful. Today, I'm counting my blessings.

Monday, October 17, 2011

Surviving the weekend & bumps in the gov't road

Well, everyone survived Mommy's weekend away. Not that there were any doubts about that since SuperDaddy was on duty. :) When we got home, the kitchen was clean and everyone was happy. As far as I heard, there was only one minor incident of Raya taking apart her feeding tube when she was supposed to be taking a nap but she didn't break anything so no real harm done. Perhaps I should leave more often. :)
Speaking of leaving, we have hit an inevitable bump in the road to getting respite care. I really try not to complain about Raya's state-provided long term care insurance since it really is a huge blessing to us and we feel lucky that she was able to get it, but the fact of the matter is that it's still insurance and there are still road blocks and red tape involved. Evidently, because there were changes made to the allowances for respite care that went into effect on Oct. 1st of this year, everyone is now waiting for approval for their respite care services.
I'm a little unclear as to why we have to wait for approval for something that we've already been approved for. At the last meeting I had with our support coordinator, she told me that changes were coming and she approved us for the maximum allowable hours for the NEW regulations, which I thought she was doing to avoid this exact issue. Apparently that did nothing except let us know what the new regulations would be. I don't know how it would have affected us if we had started using the respite care before October 1st either. Well, whatever the reason, it's looking like we will not be starting with respite care this Sunday like we had thought. Bummer, but oh well. We've waited this long so what's another week or two (or 4), right? :)

Saturday, October 15, 2011

Dear Raya

Dear Raya,
Mommy misses you. However. Mommy really REALLY enjoyed sleeping in today until 10:15. Mommy is feeling very refreshed for the first time in about 2 years. 
See you tomorrow, my little vanilla-scented stinkerpot!
A very rested Mommy :)

Wednesday, October 12, 2011

The anxiety is mounting...

I think the longest I've been away from her was about 6 hours during the day, and she was at home with Donny during that time. As is probably the case with a lot of moms of kids with special medical needs, I have not been away from Raya overnight since she was born. That was 702 nights ago. (except for the 3 nights that I slept at the Ronald McDonald House across the street from the hospital but that SO doesn't count!)  702 nights of waking up to either a crying baby or a beeping feeding pump or both. Or kicking Donny so he'd wake up and silence whatever was making noise.
Lest you should feel sorry for us, there have been plenty of nights with several hours of sleep in a row, but there has not been a solid, full night's sleep without having to get up at least once since the girl was born. Thanks to Raya's overnight activities, I've never felt like I could leave her overnight. I've had a hard time asking anybody to watch her for an hour, let alone overnight.  It's a LOT to ask of someone and I just never felt like I could do that to anybody, not that people were lining up to volunteer for the job. :) Heck, I hardly even made Donny do any of the middle-of-the-night medications or anything like that just because I was afraid that we'd end up screwing it up if one of us wasn't specifically "assigned" to do it. This is not to say that he never helps because he does take care of her night feeds quite often when I fall asleep on the couch at 9:30. He has saved my bacon plenty of times.
The 702 night streak is about to come to an end though. Tomorrow morning, I'm surprising Ashtyn with a weekend trip to Idaho for her cousins' baptisms. She has NO idea (neither do her cousins) and I'm really excited about the trip. The excitement is very much mixed with anxiety though. I've never had a problem leaving the other kids, but Raya is a whole other ballgame. There are a lot of things that could go wrong with Raya that you don't have to even think about for a non-tube fed kid. She will be with Donny all weekend, which is great (for her :). He is totally capable of handling her and I'm not worried about that at all. As long as the feeding pump doesn't give him trouble. The other 2 kids will be very helpful at keeping her entertained & out of trouble. He gets to experience OT for the first time too. :) I'm sure he'll be really excited to go back to work on Monday, but they'll survive just fine without me. Even so, I'm having separation anxiety.
However. I am SO looking forward to getting a full night's sleep (3, actually) with no "NEE-ner NEE-ner NEE-ner" of the feeding pump alarm at 2am!!! Best of luck, Donny. :)
In other news, I have FINALLY gotten a respite provider. Hopefully she will be able to start in 2 weeks. She'll be staying with Raya for about 3 1/2 hours on Sunday while we go to church and for another 4 hours on Monday or Wednesday mornings so I can run errands & spend some much needed alone time with Kaida.

Tuesday, October 11, 2011

Walking a fine line

Some days I feel like I'm walking a fine line between being at peace with Raya having a feeding tube and being TOO comfortable with the simplicity of feeding her through the tube. (note: simplicity is not the same thing as ease :) Today is definitely one of those days.
Her lack of willingness and/or ability to eat makes it really easy for me to not feel like it's worth bothering to try to give her food. What's the point if it's just going to get thrown/smashed/smeared instead of eaten? She swallows some of it but lately, more gets spit out than goes down. Or it doesn't go in her mouth at all. Even things she's done great with in the past are getting spit out now, like crackers. Then there's the yogurt. Who really wants to clean up a mess like THIS multiple times a day:
 Lucky for me, she's totally lost interest in yogurt now so all she does is make a mess and say, "Yuck! No wannit!" when I give it to her. She's been saying that with pretty much everything lately. She asks for some of what we're eating and then when I put it on her tray, she tells me "Here, Mommy, nowannit." So then I think, why waste food when she has no interest in eating it and is just going to throw it on the floor or smear it into her hair?
The list of things she will eat & won't eat changes constantly. One day she's chowing down on cream of wheat and the next day (and every day after that) she wants nothing to do with it. There seems to be a complete lack of consistency with the way she reacts to things from one day (or minute) of the next. If she asks for something or seems interested in it, we let her have some, but just because she eats something once doesn't mean she'll want to eat it again.
She likes peanut butter now. At first, I gave her a biter biscuit to dip in the peanut butter. She loved it, but it kind of backfired on me because now she won't eat whatever the peanut butter is on. She licks it off and then puts it down and uses her fingers to scoop up the rest of the PB. I'm sure she'd prefer that I just give her a little cup of peanut butter to eat and not try to give her any crackers or anything with it. All she really needs are her fingers. :)
*Sigh* I just don't know sometimes. Eventually she'll get it but right now I feel like we're running around in circles.

Saturday, October 8, 2011

"It was just frozen pee from a jet-airplane!"

Can anybody name that movie? :) It's one of our favorites but nobody else seems to appreciate it. :)
So yeah, collecting urine from a 22 month old who isn't potty trained is a bit of a challenge. I ended up standing Raya in the bathtub and letting the water run until she gave me what the lab needed. Then we froze it since they need it frozen upon collection. Fun.

Friday was a heck of a day. We dropped Kaida off at a friend's house so she didn't have to be there for the blood draws. Next time I want to go to a friend's house too so I don't have to be there for it. :) We went to OT and Raya got to play with Jello. That was a new one for her. She's never had Jello before. She wasn't much interested in tasting it. Her OT gave her a little baggie of Froot Loops and they squished the cereal into the Jello. Raya made all kinds of amusing faces ranging from shocked to amused to thoroughly disgusted. The disgusted face came mostly when a Jello-coated Froot Loop was placed in her mouth. I can't say that I blamed her though, that sounds pretty gross to me too. :)
When OT was over, we drove through the pharmacy to pick up Raya's new increased dosage of Prilosec. I'm pretty sure that the next time she gets the dose increased, they'll just give it to us in a gallon jug. :) Next we hopped on over to the clinic to turn in the frozen pee and get blood drawn. Ironically, we had to wait longer just for blood draws than we've EVER had to wait for an actual doctor's appointment there. Luckily, Raya thinks she owns the place and is quite comfortable & content to just roam around the waiting room chatting it up with random strangers and all of the ladies that work there when they come out to call patients back. Her flirtation of choice yesterday was a sweet boy that showed her pictures of his dogs on his cell phone:

When it was finally our turn, Raya was ready for a nap. She's no dummy either. As soon as she walked into the drawing station, she knew what we were there for. The only thing missing was our awesome lab tech who is one of 2 people to ever get blood out of Raya on the first stick. She apparently no longer works there. Bummer! Then I asked if the allergist's office had sent over the orders that I asked them to fax over and they hadn't, so we had to wait a few minutes for that to come in.
By the time we actually sat down to draw Raya's blood, she was DONE. She had enough and wanted out of there. The lab tech went to see if she could find someone to help hold Raya still but everybody was busy so it was just the two of us. I did the best I could but dang if that girl isn't the strongest little 22 month old I've ever tried to hold down for bloodwork! She has very uncooperative veins too. The lady stuck her left arm, dug around with the needle for a minute, and decided she'd better get the charge nurse to come help. Raya sat on the floor and threw a fit while she was gone. She wasn't a fan of the co-band on her arm.
The charge nurse came in and while I was holding a screaming Raya still, the nurse said something like, "Aww, Mommy, you're supposed to protect me, not let them hurt me!" I kind of wanted to kick her. My baby doesn't trust me because I've tortured her repeatedly and held her down for other people to torture her repeatedly for the past 20 months. Please rub salt in the wound.
Anyway, after a little digging in her right arm, she finally got the 10ml of blood that she needed and we were done. Here's a list of the labs the neurologist & allergist ordered:
  • Urine Organic Acid (indicates whether the body's cellular activity is functioning normally or not) 
  • Pyruvate (checks level of the enzyme Pyruvate Kinase, which helps metabolize glucose in the blood)
  • Lactic Acid (high levels of lactic acid in the blood indicate that body tissues are not getting enough oxygen)
  • Plasma Amino Acid (shows levels of amino acids available to perform their proper functions within the body)
  • Chromosomal Microarray (detects subtle chromosomal abnormalities)
  • Allergy panel- Milk
  • Allergy panel- Rice

Honestly, I will be completely surprised if any of it comes back abnormal. Cynical of me, I know, but I've just come to terms with the idea that we may never get an abnormal test result that gives us any kind of useful information. At this point, the only ones I'm even interested in are the allergy panels. Even if they come back negative, it still doesn't change the fact that she's shown sensitivity to both dairy and rice.
The rest of Raya's afternoon & evening were pretty uneventful. We rushed home from her appointment so I could do a newborn photo session for a friend and since she had fallen asleep in the car on the way home, she skipped her nap for the day. We are FINALLY enjoying some gorgeous fall-like weather (meaning the temperature has dropped below 90) so she has LOVED being able to play outside while we wait for the big kids to get off the school bus. I talked to the new GI nurse on the phone for a couple minutes. She called to see how Raya was doing & if we needed to move her appointment to a closer date. I told her that Raya had been having a great week & that the appointment in 3 weeks should be fine. (famous last words. Remember this for later.) We had a lovely evening with friends and then came home and put the kids to bed.

As I was crawling into bed at 10:15, of COURSE Raya started crying and woke up. It wasn't anything unusual, she usually does wake up crying around that time of night. The unusual part was that we couldn't get her to stop. She kept crying and nothing made her happy. I gave her the night doses of her meds and Donny took her for a drive and got her to go to sleep while I got her night feed set up. The second he laid her in her crib, she woke up and started crying again. For about 15 minutes, she sat on my lap on the bed squirming, crying, and trying to get comfortable but couldn't. I finally gave her Maalox and took her out onto the couch. I tried to lay down propped up on pillows against the arm of the couch but she wouldn't have it. She would get comfortable and then I'd accidentally touch something she didn't want me to touch (hand, foot, leg, head, etc.) and she's throw a fit and start crying again.
By this time it was about 11:45 and I found myself sitting up straight on the couch trying to hold completely still so I didn't make her mad and have to start the whole settling in process over again. She had a fit once and I got her to stop by playing Angry Birds on my phone. Then I tried to watch Deadliest Catch on Netflix but my phone was running too slow so it wasn't working.
Eventually we settled in for the night & went to sleep. It was frequently interrupted by her squirming & crying, but it was sleep. Then the pump went off at 2:15 so I turned it off and unhooked her. Since she was out cold to the point of being floppy, I thought it was safe to put her back in bed. WRONG-O. The instant I laid her down, she freaked out and started crying and screaming all over again. We ended up back on the couch where I got small snatches of sleep for the rest of the night until the other kids came down for breakfast. She's been really moody all morning too. I checked her teeth to see if there's anything new happening in there but it's just the same old molars peeking through that she's had for a month or two now so they shouldn't be bothering her. I don't know what's wrong with her but I'm pretty sure I can't take another night like last night!

PS The movie reference from the title of the post was Chicken Little. :)

Thursday, October 6, 2011

Neurology update

Raya had her annual visit with the neurologist today. I have to say that it feels REALLY good to say "annual" since we've seen all her other doctors MUCH more frequently than that. :) Overall, things went really well and it was a good visit.
For starters, Raya's hyperreflexivity has decreased significantly since her last visit, meaning that when the doctor taps her knees with the little hammer, the reflex response is not as overly reactive as it was a year ago. She also evaluated Raya's gait while walking and "running," i.e. walking fast, she's impressed with how well Raya walks. She said that her stance is still wider than it should be and she still has her arms in high guard position (raised to shoulder level with her hands up)
but that she is SO much improved since our last visit. She does still show increased tone in her legs but that has improved since the last visit as well. (THANK YOU, THERAPISTS! :)
We talked about the labs that had been done before and had come back with abnormal results. Raya's lactic acid has been abnormal every time they've checked it. Her pyruvates were abnormal a couple of times and the urine organic acids have always been abnormal too, but they thought that one or both of those might have been as a result of the MCT oil in the Neocate formula that she was on so they didn't think too much of it. The lactic acid has always made everybody scratch their heads though. It's always been on the high side but she's never showed any signs of lactic acidosis or any other conditions that would be indicated by those lab results. Since it's been almost a year since any of that was checked last, we're going to do some blood work and send out for the urine organic acids again. That means collecting a urine sample from an almost 2 year old, which should be really fun, and then freezing it. Yep, more frozen pee. :) I was really REALLY disappointed to find out that our favorite lab tech is gone now too. She is the ONLY person other than one nurse at the hospital who has ever gotten blood out of Raya's arm in the first stick. Raya's veins are not very cooperative so I'm crossing my fingers that the new tech will be successful.
Overall, the neurologist is happy with Raya's progress. She is very optimistic about Raya's future and her potential to overcome the symptoms that she currently experiences. She wants Raya to continue receiving therapy services until at least kindergarten or 1st grade but she thinks that by the time she's 6 or 7 years old, we may not be able to see any traces of CP at all. I think she's probably right. We've seen so much improvement in the past year, and especially since we started PT in December and OT in February. We'll get the labs done and should have the results back in 2-3 weeks since some of them have to get sent out to a lab in another state. If there's anything to be concerned about, we'll see her when the results come back but otherwise, we don't have to go back for a year.
On a GI note, I got a phone call from one of the nurses yesterday because the doctor finally got my note from last Tuesday about Raya's increased reflux and only gaining 2 oz in a month. (The communication isn't what it used to be. The new nurse is still learning the ropes, I guess. :) She said to increase the Prilosec and come see her in the next couple of weeks. We have an appointment scheduled in 3 weeks anyway and the nurse never called back to say that we needed to come sooner so I guess we have 3 weeks to get back on the right track. :)

Wednesday, October 5, 2011

Tuesday, October 4, 2011

PT Gymnastics

Last week for PT, we met up with Miss Jessica at a local gymnastics gym. It was a GREAT change of pace from being at our boring ol' house. :) The girls were in HEAVEN, especially Kaida.
She was SO excited to have an excuse to wear her hand-me-down gymnastics outfit out of the house. :)

Raya was a bit hesitant at first. Jessica & I weren't sure how she would do sensory-wise in such a busy environment. There were so many soft, squishy, uneven and unstable surfaces to walk on and those are the things she has always had more difficulty with. Since there were a lot of other kids there that were running around and having fun, she knew she should be having fun too and that helped. Peer modeling can be a huge blessing!
She was really funny when we put her on the tumble track. It's a long skinny trampoline with big mats at each end, and even for me it felt funny to walk on it. It feels very different than a normal trampoline because the shape is so much different. Anyway, we put Raya on it and she just stood there and stared at her feet.
Don't her legs look juicy in those leggings? We've worked hard for every little ripple! :)
Her first few steps were pretty normal. After a couple of steps, she grabbed my hand in a death grip and wouldn't let go. I kept walking, so she kept following me but she got closer and closer to the side of the tumble track, and instead of walking forward, she started walking sideways just like she does when she's walking across a sloped surface. Then she just stopped completely. It was definitely sending her little vestibular system for a loop! Since all she wanted to do after that was cling to me, I left and watched Kaida for a few minutes while she played in the big foam pit. If Raya's having a hard time with whatever her PT wants to do with her, she generally does better if I'm not within her sight. While I was out of the way, Jessica worked with Raya on jumping with both feet (one of her new PT goals):
Why do kids do that? They always do better for somebody other than Mom. :)
We did all kinds of fun things to torture poor Raya. We made her walk on all the different trampolines, including the one that's not a solid surface (it's woven & the holes are about 1/2" or maybe bigger) and boy did that throw her for a loop. She couldn't get off that thing fast enough the first time I stuck her on it. Then I took her on it again and bounced us up the slope and onto the big mat at the other end. Then all the moms that were sitting 4 or 5 feet away at the other end of the mat all turned around and looked at me like I had done something wrong by disturbing their resting place. Annoying.
I got Raya to chase me around the tumbling floor for a while too. She loved that. It's easier for her to move fast on that floor since it's so bouncy. They had all kinds of different shaped mats on the floor. We tried unsuccessfully to put Raya on the one that's shaped like a wheel of cheese that's missing a wedge, but she wouldn't have it. She can't handle being tipped backwards, so that's what we wanted to work on with her since the theme for the day was to upset Raya's vestibular system. :) Once again, we were grateful for the power of peer modeling because as soon as Raya saw Kaida and Jessica's 2 girls get on the mats, she wanted on too. We stuck her in the middle of Jessica's girls and she eventually got to where she liked it (as long as we didn't tip her back too far).
She and Kaida LOVE Jessica's girls and they get really excited to have their friends come over once a week to play. :) They had a great time at the gymnastics gym too and Kaida has been bugging me ever since to take her back. :)

Today we had our regular session at home. Raya has definitely evolved in the way that she refuses to let Jessica touch her when she's tight & sore. There used to be a LOT of screaming, crying, kicking, and resisting in whatever way she could. Now she just does her best to ignore Jessica. She finds something to play with to distract herself and I think she really tries to let Jessica work on her. These days, when Jessica is working on a muscle that's really tight and Raya gets to the point where she can't take it anymore, she just wiggles to get Jessica's hand off of her. It's kind of funny to watch. It's like watching a horse flick its tail at a fly that's bothering it without looking up from whatever it's doing. :)
Today, Raya was really tight in her right calf. She pretty much refused to let Jessica touch it. She was having a little flare-up of her torticollis today too and didn't want Jessica to touch her neck either. Since there was no chance of getting her to cooperate with any of that, she just worked on other things like going up & down the stairs safely, reaching up above her head to grab things, and jumping. Not her best therapy day, but definitely not her worst either!
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