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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.**

Wednesday, March 30, 2011

We're worn out!

We've had a long day, much of which is probably my fault but that's just part of being the mom, right? :) We started out pretty good. And by that, I mean that I didn't wake up this morning to the overpowering stench of Raya's poopy diaper like I do most mornings. We took the big kids to school and then I had to go back to our old house and make one last-ditch effort to clean up the garage a little and get rid of garbage. I was cruising along with that when I suddenly realized Raya's PT would be showing up any minute so we hurried home and got there the same time she did.
We really pushed Raya today with PT. We made her walk to the park (5 houses down) WITH shoes on, which she rarely ever wears. Let's just say the girl is not a fan of uneven surfaces of any kind, starting with the slope of the driveways we walked across. It really threw off her balance walking on that sideways slant. When we got to the park, her PT made her walk down a hill of grass (which needed to be mowed) and once again, she got stressed and bent over to touch the ground, which turned out to be wet tickly grass. That stressed her out even more. She made it to the bottom and then had to be carried to the sidewalk. Then her PT took her to the middle of the sand and got her to walk out. I always assumed it was the feel of the sand on her bare feet that kept her out of it but even with shoes on she really didn't like walking in it. We worked her at the park for about 20 minutes and then started walking home. She only made it halfway across one slanted driveway and she was DONE. Bless her little heart, she just started bawling and that was IT. I carried her the rest of the way home but after that she wasn't interested in doing any more PT. :)
Right after that, I attempted to put her in bed for a nap since her feeding therapist was coming at 1:00. I decided to do the pump feed in the morning while she was napping and the bolus feeds in the afternoon while she was awake, so I picked up the backpack and was surprised to feel how heavy it was. I looked inside and the stupid pump bag was completely full. We're not sure what happened because Donny filled it up and checked all the settings and started the overnight feed before he went to bed last night. It never beeped during the night and this morning when I looked at it, the pump said 485ml had been fed which is normal. I don't know how it was possible for it to run all night and say that the right amount was delivered but have the bag still be completely full. Irritating to say the least, and that was just the start of the downhill part of the day.
I hooked up her feed and put her in bed and started on laundry. Then I peeked in to check on her a little while later and found this:
It's become pretty much routine for her to open up the backpack and dismantle everything inside, but when I got closer, I realized she had also opened the medicine port on her J tube extension tube. There were little puddles of formula and fluorescent yellow bile everywhere and she was having a lovely time playing with the frozen solid ice pack and washcloth it was wrapped in.
The girl evidently has zero sensitivity to cold because she is obsessed with ice packs and cold things. I told myself that a premeditated bile/formula leak was still better than having to clean up a poop mess but it's still gross. Since she had it all over her legs I had to give her a shower. Then I stripped everything but the waterproof mattress pad out of her bed (which, by the way, I had JUST put clean bedding on).
I gave her a 30 minute snooze before feeding therapy so she was nice and grumpy when her FT came. She was super grabby and didn't want anybody touching her. It was fun. yeah. fun. On a positive note though, for whatever reason, her aversion to food touching her lips seems to be lessening. In other words, instead of gagging and/or pressing her lips & turning her head, she has started to let food touch her lips and even go in far enough that she can bite down on it. She's doing really well with wiping the food out of her mouth when she's ready for it to go away too instead of gagging and throwing up to get it out. One small step but it feels like a HUGE leap in the right direction.
Today she tried a popsicle:

She looks excited about it, doesn't she? :)
This is Raya yanking the popsicle away from her FT's hand, i.e. expressing her opinion about the FT trying to help her. :)
During FT we noticed that she was feeling a little warmer than normal so I'm crossing my fingers that her ear infection isn't coming back again. After her FT left I put her back in bed so I could quickly try to get some things done and the little stinkpot had opened the medicine port again so there were HUGE puddles of formula and bright yellow bile coming out again. It was pretty gross and I was just grateful that I had been smart enough to leave the waterproof pad in her bed and just throw another blanket over it. I cleaned her up and she just threw fits the whole time until I gave her a wet washcloth to chew on. That's one of her new favorite things.
The rest of the evening, she was whiny, clingy, fussy and really refluxy. That's probably my fault because I didn't make it to the pharmacy to pick up her refills of prilosec & amitryptiline until tonight and the prilosec expired a couple days ago so that may be partly to blame for her crazy reflux this week. We kind of snuggled on the couch tonight. I say kind of because she would lay there for a few seconds at a time and then move to a new position while whining/crying. For 2 hours. We had finally settled into a good snuggle when Daddy got home. As soon as she heard the key in the lock, she popped up off the couch and said, "DADDA!!" and that was the end of the snuggle. Hopefully tomorrow will be a LOT less messy and she'll get the right amount of calories & hydration.

An exciting moment

Today we had to go to a title agency about 45 miles from home to sign papers on the house we're selling. First I took Raya to her OT appointment, which was a pretty average session for her. She was all over the place today. I realize a 16 month old can't be expected to have much of an attention span but holy smokes, the girl couldn't do something for more than 5 seconds before she was moving on to the next thing. It was worse because if she happened to notice Kaida doing something, it didn't matter what it was, Raya immediately wanted to do it too.
Finally, after a month or more of trying, Raya actually LIKES bouncing on the huge exercise ball. I say it's been a month, but that's just because for the last month we've actually been pushing her to let her OT put her on it. We tried putting her on it at PT probably a year ago and she hated it. Every time after that (including a month ago when her PT brought one with her) she has hated it. She finally likes it though so that was exciting. Any time she gets over an aversion to something, it's exciting. That's not the exciting moment that I was referring to with the title of this post though.
Back to the house signing appointment. After OT we picked up Donny from work and started driving to Timbuktu for the appointment. I was yapping away in a Mountain Dew-induced yap-a-thon when I changed freeways and came around a corner. Then instead of staying in the right lane like I did SOOOOO many times last year, I changed lanes and kept driving. Do you know what I drove past? Phoenix Children's Hospital. Do you know how exciting it was for me to drive PAST it instead of pulling off the freeway exit and turning that screwy corner under the overpass to go into the parking garage? I actually had to count how many months it had been since we had been there. 5, in case you were wondering. 5 whole months that we haven't gone to the hospital. (granted we did go to the hospital in Ohio but that was different. I didn't feel like I was being held hostage there. :)
When we were driving back and we passed it again, I wondered how many cars I had watched drive by from Raya's room at the hospital on that exact stretch of freeway during the 2 weeks we were there the last time. We had a really nice view from one of her rooms but I have to say that nothing beat the view of flying by the hospital from the freeway. Having Raya has taught me to be better at celebrating the positives so I decided that even if, heaven forbid, she had to go back to the hospital tomorrow, I would still be excited about the fact that she stayed away for 5 months. The end.

Monday, March 28, 2011

Power shift

I was sitting at the kitchen counter a couple days ago and Raya & her big sister Kaida were playing in the living room. Since Kaida pretty much talks all day long (mostly to herself or in conversation with toys), I've gotten to where I tune her out unless she's talking to me. I realized that she was saying the same thing over & over again (in a calm voice) and then I heard that she was saying, "I tan't dit up. I tan't dit up. I tan't dit up." (I can't get up) I turned around to see what was going on and saw this:

I laughed pretty hard when I saw them. Kaida's going to have to step up her game if she doesn't want to lose her throne. :) Or at least stop laying on the floor. Raya loves to find things that are the right height to sit on and Kaida laying on the floor is apparently the perfect height. I was surprised that Raya didn't hurt her. They're only about 4 or 5 pounds apart in weight but Raya is a lot stronger than Kaida. We keep joking that Raya is going to be an Olympic power lifter when she grows up because she loves to find the heaviest thing she can pick up and then carry it around. (that would fall under the "heavy work" category of sensory processing disorder :)
She's been doing some funny things lately. She learned to say the word that every parent dreads having their child learn: "NO!" but she has no idea what it means yet so it's still funny. Last night when we were sitting at the dinner table she started saying "Nooooooo!" The big kids thought it was hilarious, so of course she just kept doing it. They waved their fingers at her and said it back to her, so then she would wave her finger at them and say, "No, no, NOOOOO!" I tried to get them to just eat their dinner & ignore her but she was cute & funny and they couldn't help it. :)
We've been doing better with putting her in her high chair while we're eating. She's shown more interest in pretending to eat so we're giving her more opportunities to do it. We always give her a plate or bowl, spoon and cup to play with. She usually lasts 2 or 3 minutes before they're on the floor but sometimes she takes pretend bites and drinks and says "Mmmmmm!" and I think to myself, "How would YOU know?!?" :) She has actually surprised me several times lately though and let me give her tiny tastes of things. I gave her a tiny little drop of her formula this morning (she put her mouth on the can) and then she smiled and smacked her lips. I have no idea if she can even taste it or if she just liked the strong metallic taste of the can but it's exciting whenever she lets something into her mouth. If she's in the right mood and we offer something hard or crunchy, she'll bite into it. She doesn't bite it off but I think she likes the way it feels to have something scratch her teeth. (another sensory seeking behavior)
And speaking of sensory seeking behaviors, how's this one. I took her to the grocery store and put a couple bags of frozen vegetables in the cart next to her and she picked one up and held it the rest of the time we were at the store. She LOVES cold things! She likes to take the ice packs out of her backpack when we're not watching her and play with them too.
Oh, and she learned this too:
She walked around like that for several minutes. Nice.

Thursday, March 24, 2011

Why we got Raya a G tube

This afternoon I took Raya in for a weight check. (Since she had lost a few ounces between her last 2 GI appointments, they had us come back.) Today she weighed 10.76kg, or to those of us who don't speak metric, 23 lbs 11.6 oz. That's 5 oz more than she weighed exactly a month ago today so not a great month for weight gain, but at least it was a gain & not another loss, right? :)
Anyway, when I was sitting in the waiting room, there was a lady there that I had chatted with a little bit last month. Her son is almost 2 and has had an NG tube for the last 10 months. He has been diagnosed as failure to thrive (FTT) like Raya was and refuses to eat & drink. His symptoms are a little different than hers but still a pretty similar story. When I talked to her last month, she asked me a few questions about Raya getting a G tube (when, how long we waited, if we're glad we did it, etc.). Today, we had a pretty similar conversation but she was asking more questions, like whether Raya can lay on her stomach or not and things like that. Reading between the lines, I could tell that she is in the same position that I was in a few months ago.
I didn't get to talk to her for very long but the questions she was asking got me thinking about the reasons we decided to go ahead and get Raya a G tube and get rid of the NG tube. It was a decision that we thought about, talked about, prayed about and agonized over for months. Deciding whether or not to cut a hole in your kid's stomach isn't something to take lightly and we definitely didn't. Since I never really went in-depth into why we decided to go ahead with the G tube, I'll try to remember and do it now. :)

 Why we didn't want it:
*we didn't think she'd need the feeding tube much longer, and maybe more than that, we were clinging to the hope that she wouldn't need it much longer
*we didn't want to jump into it too quickly
*we were hung up on words like "permanent" and "invasive"
*one of the commonly reported side effects is vomiting, and she was having plenty of that on her own
*we were used to and comfortable with the NG tube and knew how to handle it
*we felt sorry for Raya because she was already being poked & prodded enough & didn't want to put her through a painful surgery and recovery

Why we ended up doing it:
*we needed to see if her oral aversion and vomiting would improve without the NG tube in her throat
*we finally started to realize that we were dealing with something that would be longer term than just a few months
*I couldn't handle sitting on my baby and shoving a tube up her nose anymore, and my dislike for that process finally overpowered my reasons for not doing the G tube
*I was afraid she would grow up resenting me for the aforementioned tube up nose shoving (irrational, perhaps, but that's how I felt)
*we only got 1 NG tube every 30 days (that's all our insurance would pay for) and the ports would stretch out after a few days and they'd pop open and leak everywhere
*she had problems with skin breakdown from the adhesives on her cheeks
* I absolutely HATED the little pink adaptor tip on the NG tubes because it was always in the way and it poked her when she rolled over on it
*people stared at her & asked what was wrong with her. Not really a problem for a baby, but I didn't want it to affect her self-esteem as she got older. People can be cruel.
* we (us and her doctor) wanted to try jejunal feeds and I knew there was no way we could do an NJ (nasojejunal) tube (if it were to get pulled out, I'd have to take Raya to the hospital to get it put back in by the interventional radiologist and since she was pulling the NG tube out multiple times a week, it wasn't a good option) Putting in a G tube would prepare her for a GJ tube.
*she may eventually still need to have a fundoplication surgery (where the top of the stomach is wrapped around the lower end of the esophagus to prevent reflux) and if she does, she'll have to have a G tube anyway to allow her stomach to be vented since the surgery can make burping and vomiting impossible
*we realized that it wasn't "permanent" & can be taken out someday when she doesn't need it anymore. Then she'll just look like she has 2 belly buttons. :)
*I was tired of carrying a stethoscope in my diaper bag
*We prayed about it
*We realized it was something we needed to do in order to rule out more possible causes for her relentless vomiting
*I really wanted to spend another week living on a plastic couch at the hospital. (sarcasm intended)
*Bottom line, we started to see it as a tool in her diagnosis & recovery process rather than another roadblock. The NG tube vs the G tube is kind of like a screwdriver vs a power drill. They both serve the same purpose but one is more heavy-duty than the other. And did I mention how much we grew to HATE the NG tube? We were grateful for it but really hated it.

*Recovery was faster than I expected (after her complications had been resolved) You can read about her surgery & recovery here
*Less stuffy/runny noses
*Her original G tube (Bard button) leaked profusely if we didn't have 4 layers of gauze packed under it. Annoying!! Once we got it changed to the mickey button it pretty much stopped leaking.
*No real noticeable change in gag reflex, vomiting or oral aversion but at least now we know that
*Less leakage from the tube popping open when not in use
*The G tube (which she had for 2 1/2 months) only got pulled out once and it went right back in with no problems. The GJ tube (which she's had for 5 months) has never been pulled out, knock on wood.
*The G tube doesn't get in her way like the NG tube did.

Overall, we are completely sure we did the right thing by getting the G tube and I don't think we would change a thing about how we did it. We listened to the people who actually had experience with feeding tubes and tuned out the well-meaning people who gave us their opinions about a subject they weren't really knowledgable in. We kept the NG tube long enough to convince ourselves that we had tried as hard as we could to avoid something long-term/invasive. We felt like we had done her justice, given her enough time to try and get rid of the NG tube on her own, and put enough thought & prayer into our decision. We have never second guessed ourselves or wondered if it was a mistake (except perhaps a few times during the initial recovery when we were still getting used to it :) and we absolutely do NOT miss that NG tube! (Here's a list of the top 10 things I don't miss about it :)

Monday, March 21, 2011

A very long rundown of our week

This hasn't been Raya's best week/weekend. Last Tuesday when Donny put Raya to bed, he noticed that she felt a little warm. She did a lot of coughing/sputtering (like when you accidentally inhale water) overnight & in the early morning. Wednesday morning when I got her up, she had a fever of 101.5. I don't give my kids motrin/tylenol for a fever until I know what's causing the fever so I just watched her for the day and switched her formula out for pedialyte that day (with approval of her GI dr, of course). Her PT came Wednesday morning & Raya was pretty cooperative in spite of the fact that you could tell she didn't feel good. Most of the times she's had fevers before, they're gone the next day so I decided we'd wait until Thursday & if she still had the fever, I'd take her to the doctor. She was pretty happy all afternoon, especially since the big kids all went to a friend's house so she had my undivided attention. :)

She's singing to me :)
 She sat next to me and sang along to the music I had playing and we "chatted". Our chats consist of me saying "Ray-a" and then she echoes it back to me. She can say her name but she doesn't quite know what she's supposed to do with her tongue so this is what it looks like when she says her name:
 She was pretty happy the rest of the day even though I could tell she didn't feel good.
On Thursday morning I got her up and she still had a fever. I took her in the shower and instead of causing all kinds of havoc like she normally does, she stood in one place and hugged a shampoo bottle and that was it. Then she started sucking on a wet washcloth (which made me happy since she doesn't suck on things). I picked her up (still holding the shampoo bottle and washcloth) and she laid her head on my shoulder and fell asleep in the shower. SO not normal for her. I got her out and wrapped her in a towel & laid her on the floor and she just stayed there sucking on the washcloth & hugging the shampoo bottle while I got dressed. It was cute but sad at the same time.
When I got her dressed and then all she wanted to do was sit on my lap & cuddle, I KNEW she was sick & called the pediatrician's office. Of course that was the one time that they could get her in an hour later, so I had to rush everybody (the kids were home on spring break) and take her to the doctor. I had Cole hold her for me while I got ready to go, and she just sat on his lap (sort of), which was another clue that she REALLY didn't feel good. She NEVER just sits on someone's lap, let alone one of her siblings!

Luckily they behaved really well for being bored to death and having to wait longer than people should have to wait when they have 4 kids in a tiny exam room. Finally the doctor came in and confirmed what I suspected: another ear infection. It was in her left ear, same as last time, so either the azithromycin we used last time didn't work or she just happened to get another one in the same ear. Either way, we decided to try something different this time so she prescribed Omnicef (cefdinir?). On the way out the door, she said, "Oh, and don't freak out if it makes her poop red. It can do that." And boy was she not kidding! I'll spare the details but, wow it was gross. Shockingly, Raya let the doctor feel around in her mouth and she said there are a couple of big fat molars working their way in. I had noticed the tooth on the top right side (next to her front tooth) had just popped through but she doesn't usually let fingers into her mouth.
That afternoon, my mom flew in for a weekend visit and the nice thing about Raya not feeling good was that she lost some of her energy to care about who was holding her, just as long as someone was holding her. They got in some good snuggle time.
Friday she was feeling a little better (no more fever) and was happy & pleasant while we ran a whole bunch of errands all morning & afternoon. She even shocked me by letting me give her little tiny bits of milk out of my cereal!! Of course it was just a game to her and she was teasing me but she swallowed a little bit. I think the cold metal spoon helped. The girl loves cold stuff.

I got a little choked up the first time I looked at this picture.
 In the evening, we left all 4 of the kids with my mom and went out to dinner at a Mexican restaurant which turned out to be really gross. (Seriously, who puts zucchini in fajitas??) It was one of very few times we have been able to leave the house together without any kids because I'm just not comfortable getting very far away from Raya in case something happens. I need to start using that respite care she's been approved for. :)

Everything was fine while we were gone, of course. :) Raya has decided that she really likes sitting on the bottom stair. Or boxes & toys that are about that height. She'll locate her target, turn around, slowly back up, and then sit. She's getting better at hitting her target. :)

Saturday was a really busy day for us. Raya's oldest sister Ashtyn just turned 8 and got baptized on Saturday morning. We got everyone dressed up, squirted Raya's meds in her tube, got her water+formula mixture ready, and headed out the door. She and Kaida wore matching dresses that GramE brought them and they looked so pretty!
I noticed on Saturday that Raya's forehead looked a little splotchy but it was really tiny so I didn't think it was anything. BUT...
Sunday morning we got everybody ready and went to church and while we were sitting there (and I use the term sitting loosely because Raya doesn't allow whoever is holding her to sit and we don't allow her to run all over church), I noticed that her neck, chest, back and upper arms were covered with a splotchy rash. Fabulous. As the 3 hours of church went on, her rash spread to her stomach & legs and the spots on her upper arms turned into bumps. I made an executive decision to discontinue the Omincef and crossed my fingers that the rash would go away and not get worse. Luckily it started to fade pretty much as soon as we got past the time of day when she would have been due for her next dose of Omnicef. She started to feel worse again and had about 8-10 retching episodes. She would cough a little, then inhale, then cough until she gagged, then vomit & eventually get something to come out. During those episodes and in between some of them, she was really subdued and didn't move much. You could tell when she felt better because she'd get all happy & start playing again or want to get down off your lap. That went on all afternoon & evening yesterday.
I called the ped's office this morning and the doctor called in another prescription for azithromycin so hopefully this time it will do the trick. I think there may have been an issue the last time she was on it with the spacing between that and her other meds. Nobody bothered to tell me that she had to have 2 hours between the zithromax and the prilosec or else the prilosec would bind to the zithromax and prevent it from being absorbed. Minor detail that would have been good to know. Hopefully things will go better this time around and hopefully the antibiotics won't throw off her GI tract.
And that's our week. :)

Monday, March 14, 2011

My 16 month old vanilla-scented child :)

Miss Raya is 16 months old now. She's getting to be such a big girl, literally and figuratively. :) I don't know how much she weighs now but 3 weeks ago, she was 23 lbs 6 oz (down 8 oz from the week before). Carrying her feels just like carrying her 3 year old sister, and I just pulled a bunch of dresses out of Kaida's closet and put them straight into Raya's. I've never done that before. :)
Here's a few more things about Raya at 16 months:
  • She can say backpack (her first real word, uh-oh and mama/dada don't count), and she mimics a lot of other sounds/words
  • She can say her name
  • She barks at dogs and birds
  • She loves dogs and calls them "wa-wa"
  • She sometimes yells "GO!" when we're in the car. No idea where she learned that.
  • She LOVES when the big kids play with her
  • She has learned that she's big enough to push Kaida around and take toys away from her if she wants to.
  • Sometimes we lovingly refer to her as our little bull in the china shop. Or tornado in a trailer park. Either way, you get the point.
  • She likes to push chairs all the way across the kitchen because she likes the noise it makes. (pushing heavy things is also a sensory-seeking behavior, just FYI)
  • She's also learned that if the pushing around and taking toys away fails, she can make Kaida cry by screaming at her.
  • She still hates/fears food and has no interest in it. Although we did get her to bite and spit out cheetos once.
  • She enjoys having water put into her mouth but doesn't know how to swallow it yet.
  • She can't quite climb up onto the couch by herself yet (knock on wood) but she loves to get on the couch, lay on the pillow, and cover up her lap with a blanket. It's adorable, even if it does only last for 2.3 seconds at a time.
  • Now that she changed to a new formula, she is vanilla-scented. I'm not kidding. Her head smells like vanilla. So does her pee. (but let's not talk about #2. Nothing even remotely vanilla about that.)
  • She likes to brush her own hair and she likes when the big kids brush/comb her hair (what little there is of it).
  • She's learning to pretend to eat. We put her in the high chair at meal time and give her utensils & a cup and she pretends to take bites/drinks and says "mmmmmm".
  • She likes to find things that are at the right height for her to sit on (boxes, toys, stools, etc) and then she'll turn around and back up and sit down. Sometimes she hits her target and sometimes she doesn't. :)
  • She has a fascination with belly buttons. She scares me a little bit because sometimes she goes to poke at her belly button and gets distracted by the big ol' feeding tube and plays with that instead.
  • Since she changed formulas, she hasn't had that horrible, blistering diaper rash. Hopefully it will stay that way.
  • She loves all of her therapies/therapists and I'm SOOO glad.
  • She LOVES music and LOVES to dance but still isn't interested in tv/movies at all unless there's a catchy song to dance to.
  • She still has 4 teeth, and the dentist said they look surprisingly good considering all the vomiting and tooth-grinding she's done in her little lifetime.
  • She makes church a very long 3 hours.
  • Her favorite toy is a syringe with a cap on it. She'll practice putting the cap on & taking it off for 15 minutes and not get bored.
  • She loves to put her fingers in the end of her extension tubes.

Tuesday, March 1, 2011

A word about congenital torticollis and plagiocephaly

I was going through some pictures today from when Raya was born and came across one that made me stop and stare for a minute. I could tell when she was in utero that once we got to a certain point in the pregnancy, her position (which was the exact same position her older sister had been in) didn't change at all. Except for the stretching out of the long legs into my rib cage. Other than that, she grew until she couldn't flip around anymore and then she just stayed put until it was time to make her exit. I remember even in the hospital the day after she was born looking at her from the back and thinking, "Oh dear, look at her poor little squished head & neck." I thought I had a picture but evidently it exists only in my head. Here's one from the front though:
The way she was laying may have made it look worse in the picture but holy smokes, look how much higher her left shoulder is and the complete absence of her neck on that side. (ps this picture just makes me want to smooch those little cheeks)

The 2 reasons I decided to post about this are:
1. Sometimes I need to be reminded that even though I still look at Raya and see a cute little girl with lingering torticollis, she has come a VERY long way since we started working on it.
2. Even though we started treatment at 2 months old, I wish I hadn't even waited THAT long to see if it would resolve on its own and I wish I had been a little more prepared for the whole plagiocephaly helmet (DOC Band) experience. (completely worth it but HUGE commitment and a lot of work)

Congenital torticollis is the shortening of the sternocleidomastoid muscle, which results in the head tilting to one side with the chin rotating to the opposite side. In Raya's case, her head tilts to the left and rotates to the right. It can result from in utero positioning and/or birth trauma and limits range of motion. If left untreated, it can cause facial and cervical spine deformity. Torticollis is often accompanied by plagiocephaly (deformity of the head) because the baby's head has a strong tendency to stay in the same position and cause flat spots. Raya's torticollis and plagiocephaly were further aggravated by the fact that in order to try to keep her reflux symptoms at bay, she had to sleep in a semi-upright position, so her head was fighting torticollis AND gravity.
So this is what congenital torticollis with plagiocephaly looks like:
This is the picture that made me stop & stare. I can't believe how squished her poor little head was, bless her heart. The misshapen features of her head in this picture aren't even related to the torticollis (that flat spot came later) so when she had her DOC Band and people would stare at her, I just wanted to tell them that it wasn't my fault her head was crooked, I didn't leave her flat on her back all the time and she was just born that way. And they probably weren't thinking accusing thoughts at all, except for the people who asked me if the helmet was because I had dropped her on her head or if she fell down a lot. (seriously??)
Here's a picture of her from the front from her doctor's appointment last week. Despite her seemingly non-existent neck in this picture, you can tell that there has been a great deal of improvement:

And here's one from the back:

I didn't mean for this to get so long & rambly (is that a word?) but here's my public service announcement statement of the day. If your child's head is tilted to one side, if your child has a preference for which side he/she turns his/her head, if your child has flat spots or a protruding forehead, if there is no bump (occiput) on the back of your child's head right above the neck, for heaven's sake don't just wait for it to fix itself because it won't happen. Do something about it while they're still young and pliable. Medical intervention is completely worth the cost when it can make as much of a difference as it has for Raya and save your child from being teased about it for the rest of his/her life.The end.
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