I recently had some questions asked about Jolie's torticollis and realized that after I shared our 'journey', if you will, with Jolie from months two to ten, I never gave an update as to how it all has come together, what steps we took to continue to work through this disorder she was born with and how its been since she was called 'cured'.
A picture popped up on my TimeHop feed last week, and I shared it with my sweet friend Sarah, and while we both reminisced about them being so teeny the one thing we noticed pretty quickly was that baby's tilted neck, hiked shoulder, and very apparent struggle with torticollis.
If you have followed this blog for some time, you know of our PT visits, the TOT collar, and the process that it was to overcome that tight neck of her's - but its clear now that she's got zero issues whatsoever, and her daddy and me are ever so grateful.
We started at 2 months with PT for Jolie and went consistently until she was 10 months.
Can we just talk about how LITTLE she was? This was her very first visit to therapy.
Time goes so quick. I tried my best not to blink.
We made it through 8 months of bi-weekly, weekly, bi-monthly.. and then finally monthly trips to physical therapy when we were released after her final visit. At that time she was 'cured' but remained with a pretty pronounced tilt, especially when she was tired, upset, or sleeping in her carseat. She would revert back to her comfort level and often times hike her shoulder up to compensate for the tilt she continued to have. At this point (10 months old) we were still stretching her many times a day, and continued to do the exercises we learned in PT, but she wasn't ever very tight anymore (the firststretch in the morning was usually pretty tight, but the rest of the day she was fairly flexible) and the tilt was more of a habit than lack of mobility. We asked about options for correcting the tilt, and our PT talked about the 'tot collar'.
10 months // hiked shoulder + head tilt
While our amazing therapist did everything she could to assist us, the eager parents, in educating ourselves and working with Jolie on a routine basis, she explained there want much left she could do with her in therapy or we could do with stretching to correct the tilt- and it might just be a 'Jolie thing'. We understood, but we were not okay with her having a tilt for the rest of her life (surgery will not fix it.. for Jolie is was a habit and laziness because she was 100% mobile and her range of motion was excellent), so we ordered the tot collar when she was 10 months old.
To be completely honest- I was VERY against the tot collar. I was tired of appointments, stretchingexercises and worrying about her lack of desire to hold her head up straight. I was tired of messing with a sleeping Jolie - arranging her so that the way she laid in her crib or slept in her carseat didn't exacerbate the tort more than it already was.
I was done with all of it.
I think we were both exhausted from dealing with it. But, Jordan persisted after reading and reading and learning more about the effects of long-term, untreated tilt/torticollis - we were not going to let this slide by as a 'Jolie thing'
10 months // hiked shoulder
10 months // side slouch + hiked shoulder
We started the tot collar at 10 months wearing it 5-6 times a day for 30-45 minutes at a time. Some friends and family were confused as to how often she was to wear the collar - and it isn't at all like a helmet, and we could put it on as often or as little as we like. She usually wore it while we were at home - but occasionally if we were out running errands we would always have it with us.
We did continue to stretch her about once a day in the morning just after she woke when she was the most tight. After her first year we didn't feel the need to stretch her at all, but continued therapy with the tot collar several times a day.
After 4 months of consistent wear, we finally decided it was time to move on from the collar.
This picture remains one of my proudest moments. It may seem so silly, but for the entire year we worked with her there were so many says when I thought we were seeing results and progress and out work with Jolie's tort was paying off.. and then she'd revert, regress, and fall into her habits of tilting her neck. The moment I realized what I was looking at in this picture- I sent it to Jo's therapist with proud mom words of thanks for all her help.
NOW, nearly a year to the day of her last wear of the tot collar, we have zero issues with tort or struggle with a tilt at all whatsoever. Jordan and I truly believe that the tot collar resolved the issue of the tilt completely and we are really glad we opted for her to wear it. The collar isn't something you have to get through your doctor or physical therapist, but if you are interested in using something like this, I would 100% recommended having fitted at the PT or chiropractor's office. It can be really confusing if you don't know what you are looking at or how to fit it.. I remember opening the box and looking hard with a ruffled brow at the tubing and straps- but after we took it to our physical therapist's office and she fit it to Jolie's neck it all came together for me.
While this tilt we battled is common and most often associated with torticollis, it is correctable, without surgery, and completely non-invasive.
The tot collar is optional and not a required thing (like the helmet), but I would seriously suggest and recommend the tot collar if you are going through an experience similar and have questions. After being left with little option for Jolie after her release from therapy with this continued shoulder hike and tilt to her weak side, I don't think it is something that a toddler will grow out of, but that's just my opinion:)
So thankful for this little girl. She has been a soldier from day one in the womb, and I am proud to say, once again, we have overcome.
Helloooo 10 Months (10/6/13)..which in fact means the month of {huge} milestones for these little girls.
We're 10 Months! Can you believe it?
No way.. really?! Thats what it says..
This month we weren't scheduled for a well visit, but we did plan to get the girls flu shots, and we made that appointment for part one of their shots last week (10/10). At their 9 month visit, Parker had dropped on the growth chart a little, so I was eager to do a weight check- especially with her. This month Parker weighs 18 pounds 4 ounces and Jolie is 17 pounds 7 ounces. They both gained nearly a pound over this last month! Good job my growing girls!
Both babies continue to wear size 2 diapers, size 6 months in onesies, rompers, shirts, and jammies- mostly for the length. Size 3 month dresses and shorts will still fit them comfortably. Last year when I purchased a bunch of size 3 month dresses for the cooler months, they were way to little to wear them. I'm happy to be able to get some wear out of them now as tunics with leggings:) I'll take what I can get. Even thought it seems like they are getting bigger by the day, they aren't making much leeway into size 9 month clothing just yet. I got some 9 month fleece jammies last weekend in hopes they will fit them by this winter, and my goodness- they are huge one them! They are growing so fast and before I know it they will be filling out those 9 month clothes without a problem. Slow down babies!
What's New
I'm still seeing new improvements in motor function and interaction on a daily basis! This month was another big one just like their 9th month. Last month we were singing praises about getting 2 teeth, and this month its all about the teeter todder all day of little baby feet. September 20th marked the day when the girls both started to take real steps toward momma and daddy. Parker and Jolie both were taking a step of two here and there, but only if we set them up and stood close for use to give them confidence. It was really one step, two step.. dive into mom/dad's lap.. yaay look at me walk! It took all of about a week for Parker to perfect this skill and then it was three steps to mom.. four, wait.. five steps to a toy on the ground.
Last week (10/9), Jordan sent me a video while I was at work of Parker going from sitting to standing unassisted. Insanity is what that is. You are only 10 months, baby girl! Jolie is getting there, and little more each day. She for sure feels better and can get somewhere faster while crawling. Give her a walker or a toy/box/bin to pull around the room- she's a pro. She finds it silly to run circles around the activity table and cruise along the sofa to get where she needs to go.
This month marked our first month ever to have sick babies. I say 10 months with little more than a stuffy head is pretty good in my book. At their nine month appointment, we came to find out that Jolie had an ear infection and it all seemed to spiral from there. Along with the terrible rash caused by the unknown, that poor girl was pumped with Benadryl and Zyrtec on a daily basis due to the suspicion that the rash was a result of an allergic reaction. Shortly after resolving Jolie's ear infection, Parker came down with something oh-so aggressive: fever, chills, sneezing, and a never ending snotty nose. For the first time, daddy and I experienced a fever above 99.0. Miss Parker spent the night on her daddy's chest and we worried until the wee hours of the morning in attempts to break her 102 degree fever. Thankfully it was short lived and she was back to normal temp the next day- but her stuffy head and sniffles lasted another week- but not without Jolie contracting whatever her sister had before it was over. 24 hours after Parker's feverish episode Jolie started with the snot and sickly cry- but never had the high fever- thankfully it stuck to a low grade at 99.0. These girls were champs through their first real experience with being 'sick'. No fun, but they handled it well.
These days the girls play very well alone and with one another. I seriously do not have a clue why we have SO many toys. They are fascinated by the most simplistic things on the planet. We may or may not keep empty plastic yogurt cups (makes a great microphone.. Jolie can show you..), empty water bottles, and the big produce boxes from Costco used to support and encourage our my {dry} cereal addiction. We have a basket of toys in the corner of the living room that we used to pull out random toys every morning for the girls to play with. We discovered that they plat better if they pick out their own toys. The living room goes from straight to shambles before Kelly and Michael cover the hot topics for the day. This month the love and joy in each other has really began to surface. They laugh and are so very sweet to one another throughout the day, playing solo and chatting it up like they are the only two in the world. I am obsessed with listening to their tiny voices carry on a conversation of baby babbles and raspberries.
As of last week Jolie officially graduated from physical therapy with Suzan for her torticollis. We are still wearing the collar up to three times a day, but she is holding her head so straight these days and we LOVE it. I think the TOT collar was well worth the try for correction of what little tilt we battled. She has some good days and some days were she tilts more than others, but overall she is 'looking great'
This was on October 9th- Jolie's last day of PT! (A little blurry but o-well!)
Sharing has become quite the touchy subject in our house. Shrilling squeals when one sister 'steals' from the other plays on repeat in the Massey house. Currently there are three toys things that they 'fight' over.. a stupid finger puppet, a plastic bath toy that is shaped like a turtle, and the lotion bottle. That lotion bottle caused serious competition between Parker and Jolie. I mean , really? The moment we come into the nursery from bath you can literally see the panic search in their little eyes looking for that bottle. Whoever happens to get that bottle first hangs on white knuckled and trembles with excitement. This warrants the other babe to meltdown with full blow cries and rolling tears. I'm serious. I can't make this up.. Jordan and I have started to hide the bottle so NO ONE gets it- ha! Where do they learn this from?
Eat
These girls continue to be super interested in everything that they see Momma and Daddy eat/taste. They pretty much expect us to offer them a taste, and they let us know it if we don't. I love watching the girls try new things and I especially love when they are eager to try for a second bite!
New Foods this month: Cheerios, goldfish, acorn squash (love), refried beans (love), pinto beans (without the skins), mashed potatoes (love), tamales (love), tortillas (love), pasta (love), bread (Jolie is not too sure about it), donut holes (Parker loves, Jolie is unsure), french fries- both regular and sweet potato- with ketchup (LOVE- Parker is totally a sauce girl), deli turkey (like), and pizza!
They have a mid-morning and evening solid meal and we continue to stretch the girls to 4 hours between feedings, giving them 4 liquid feedings each day. I dropped the dream feed for good this month and they are doing great and seem to be getting plenty. They both gained quite at their weight check, so I am a satisfied momma. Their typical feeding schedule at 10 months:
5:30-6am: breast feed
8am: wake for the day- snack (puffs, toast, yogurt melts)
9am: 7 ounce bottle (or breast feed when I'm home)
9:45am-10am: 5 ounces fruit/vegetable and 1/2 cup yogurt
10am-12pm: nap
1pm: 7 ounce bottle (or breastfeed when I’m home)
2-2:30pm: nap
5pm: breastfeed
6:30pm: (eaten between the two of them) 3/4-1 cup of oats mixed with 5 ounces breast milk and 5 ounces of veggies/fruit and about 1/2 cup yogurt
Getting the girls to finish their bottles at each feeding when mom is away continues to be hit or miss. Some days they scarf it down in minutes and other days it takes a little more work for them to get it all in. They seem to be the same way when nursing, too! They will nurse anywhere between 5-9 minutes- tops. This is okay by me, they act full and satisfied and are growing like weeds. After every feeding I always sit them up and say 'Let me see that belly- do you have a full belly?' Parker will pat her tummy and Jolie will give me that cheesy toothless grin.. ugh- I love it!
Sleep
These babies officially sleep. through. the. night! Can I get an AMEN? At 9 months they started to sleep more regularly through the night, but officially they will go down aroun7pm-7:15pm without a peep they'll sleep well until about 5:30am-6am. At that time they will wake to nurse (or I will wake them, depending on if I'm working that day or not) get a diaper change and then back to bed until 7:30a-8am.
Naptime is consistent for time, but off on the length. Naps are 10am and between 2-3pm. The last couple weeks their naps are only around 1 hour give or take 15 or 20 minutes. Some days Jolie will sleep a solid 2 hours, but those naps are few and far in between. Our once 1 1/2 to 2 hours nappers seem to have dwindled away. We have talked about transitioning them to just one nap a day but haven't braved to do that just yet. I don't think we are too far off and from what I've read about infant sleep, around 12 months is appropriate for moving towards one nap a day. I don't mind that they don't nap a ton, mainly because they are so much fun during their wake hours. They aren't super cranky and maintain great spirits throughout the day.
Big Sister {Jolie}
Look at how straight her neck is?
Your Favorites: music, singing the ABC's, anything that lights up and sings, smiling and laughing, conversations with momma and daddy, and sister, crawling, climbing, and exploring, rough housing (Your FAVORITE to play rough with daddy), bath time, momma's stuffed bear, hide and go seek, laughing at Daphnee through the back window.
Your Not-So-Favorites: being in your car seat for too long, finding a comfortable position to sleep in, getting dressed and changing your diaper (continues to be a never ending battle!)
Food: avocado, pasta, and banana- I think its a texture thing.
You are like a revolving door of change baby girl. It is SO hard to believe how much you've grown and evolved- even in just the last couple months. Your BB and I call you our little Tweety Bird- your eyes and smile are contagious and I absolutely adore that laugh of yours. You are so silly and even though you remain to be the littlest, you are quite dominate over your sister. If there is a toy, book, paci, food.. and you decide you want it- well, you will stop at nothing to get it. Miss sassy, silly, crazy haired little girl- I cannot get enough of you. You find humor in most things and can go from crying to giggling in about 7 seconds flat. You have a new thing for momma's stuffed teddy. We actually took you a couple weeks back to get your own stuffed doggie, and you were SO excited about it- giggling and laughing the entire time we were there. It makes me so happy to see you actually find joy in something like that because you are quite busy and carefree most of the time- and that is more of something Parker will find joy in. I don't get to snuggle you very often and even though this is the case- you are free to give out 'sugars' anytime me or your daddy ask, and when you are willing to be snuggled by this momma, you crawl into my lap and are just as sweet and gentle as can be. You can say Ma-Ma as clear as day, and I'd come to think that Ma-Ma was referring to both me and your daddy. I was proved wrong when you plainly and nonchalantly said 'Da-Da' the other day. You seriously floor me, little bit. Growing up too quick!
'Other fun things you are learning this month: 'Da' for dog and an increasing awareness of the train and it's horn that travels behind our house multiple times a day. We call it the 'choo-choo' and you know exactly what we are talking about. You are such a chatter box and I can just imagine our future conversations now- talking my ear off about anything and everything. I cannot wait! You are so smart- I can see you to be the book worm for sure. You will spend so much time in your own little world, studying and examining everything- from the button on my shirt to the smallest speck of dust/dirt on your little hand. You are a thinker- just like your daddy.
Your silly personality really comes out in your every move- these days you sing and dance to your own tune- literally. You love to sing the ABC's and laugh so hard at your BB when she snaps her fingers while she sings to you. You will hum along to the music and bee-bop your little head side to side. When you catch me watching you get a little more proud about it and wiggle your shoulders a little bit harder and more extravagant than before. Such a character, Little Miss.
I love you so much, sunshine
Little Sister {Parker}
Your Favorites: your monkey Wubanub, your paci (can't sleep without it!), chatting it up with momma, paper, the tags on anything, iPhone, the remote control, anything you can stack- blocks, cups, etc., NERF ball from BB, bath time, music and singing, and most of all- cuddling.
Food: You will pretty much try anything! Oatmeal, yogurt, sweet potatoes, bananas, and butternut squash, baby puffs, Cheerios, pancakes/bread.
Your Not-So-Favorites: Sitting and playing alone, being in your car seat for too long, loud noises,, the dark, being left out, getting dressed or diaper changes.
Food: There isn't one particular thing you wont eat!
Miss Parker Jane. I cannot express enough how much you light up my crazy world. You have the biggest heart on the planet and can put a smile on anyone's face with just a bat of those sweetest little eyes of yours. You have quite the personality, and even though Jolie is more dominate- you have a way about you that wraps me and your daddy around your finger like no other.
You are such a ham and totally crave the spotlight. If sister seems to be getting the attention at that moment you will never cease in attempts to get the attention back to you. Copy cat seems to be the name of the game with you these days- anything from laughing, to shaking your head, to slicking your tongue- you've got the talent of repeat and will play that game for hours, smiling at yourself with pride the entire way through. While your sisters laugh is contagious- yours is just as much. We don't get to hear it very often.. well, you have a 'fake' laugh for attention- but a real Parker laugh is almost rare. You are SO happy- but will show happiness through other forms of communication- like a squeal with excitement, or a grin from ear to ear causing your eyes to disappear under your rosy cheekies (just like your momma). You screech in silliness (as we speak, actually) and have become quiet the 'ring leader' of this house. Typically you wake up from sleep first and stand at your crib and holler for Jolie to wake up..the same goes for attempting to get sister to follow you around. You are passive in someways and more of a leader in others. I think your confidence changed once you began to walk and can move around more quickly on a daily basis.
You've always been a snuggler and love to sit in momma's lap, but recently you've been extra sweet around bed time and want only but about 3 minutes of cuddles in the rocking chair before drifting off to sleep. That is my favorite. You will rub my face or play with my hair while I rock you- such a special time. I will always cherish it.
You are more of the visual learner (again, just like your mother). We show you something one time and you pick it up in a snap. We recently purchased some stacking toys after watching you stack cousin Kendall's blocks one afternoon. I was floored because I don't recall ever showing you how to do that. Shortly after this we started noticing you putting toys into the boxes or cups and carrying them around- so we knew it was time for some more toys for your creative brain. The stacking rings, and stacking cups and blocks are your favorite toys this month- you can get enough of them!
How much I cherish you, your over the top personality, and your sweet demeanor Miss Parker Jane. I am so blessed to call you my daughter.
I blink and yet another month goes by. I might cry- but all the while it excites me to see what you two can throw at me next month. It is unreal watching you two grow up so quickly. Momma is already starting to plan your First Birthday!
Happy 10 months my beautiful littles!
The amazing custom hair bows Parker and Jolie are wearing in their 10 month pictures c/o fellow twin mom, Kari of Pink Cow Mootique! I am obsessing over how bright and colorful this ribbon is! I can totally see how these could be made into a fall favorite (thinking Thanksgiving?!) with reds, yellows, and orange! Follow PCM on Facebook, etsy, Twitter (@pinkcowmootique) and (my personal favorite- I get to see her sweet twin girls!) Instagram (@kldub25).
Kari has been so generous to offer my readers 20% off their order from PCM by using MASSEYTWINS as the coupon code- Just in time for Fall, ya'll ;)
Thanks, Kari! We love our bows.. Such a fun way to celebrate 10 months!
If you follow this blog regularly, you know about our little miss Jolie and the torticollis she was diagnosed with at her 2 months check up. I hardly remember those visits to the physical therapist, although my check book does.. started with weekly visits, then bi-weekly, then monthly. It had all flown by so quickly. But I do remember the day she was diagnosed- what she was wearing, what I was wearing.. Not because it was some insanely rare diagnosis- tort is really very common- but just the fact that I had fought for them so very hard throughout my entire pregnancy and won every battle we came across (premature funneling, shortened cervical lenght, bed rest, placenta declination, c-section, and delivering tiny babies avoiding the NICU) and this was unavoidable. Also- the feeling I had of defeat when the moment Dr. Butler picked her up from my arms she immeadiately stated the obvious that she had torticollis.
What? What is that? Why didn't I notice this tilt that is pretty noticeable now that you mention it? Am I a bad mom for failing to notice that? What do we do now? I had about a million and one questions running through my brain at that point and couldn't sum up the words in a good sentence. Thank goodness for Jordan and his own curiosity. He asked all the questions I couldn't. Dr. Butler proceeded to explain what this all meant and that she will need therapy and it will resolve with some help. Torticollis is the result of various circumstances, but in Jolie's case, it is due to her position in the womb. Come to find out that this is the case for many sets of twins due to the limited space in their mother's belly.
Whew... ok. So, we can do this! We left the appointment with a peace of mind and a referral to Our Children's House in hopes to get in sooner rather than later.
Jolie's shortened neck muscles on her right side caused her to 'tilt' and did not allow but about 30% range of motion. These pictures were taken (Valentine's Day 2013) just shortly after she was diagnosed with torticollis.
After starting therapy with Suzan, we learned so much about this treatable 'condition'. Torticollis, as well as the baby developing a flat head, can be caused by the shape of the mother’s uterus and the position of the baby in utero, which explains why miss Jolie developed tort and Parker did not. Jolie is Baby A, which means she was lower and very squished. I carried Parker right smack in the middle, while Jolie was very low and smooshed to the side of my uterus. Towards the end of my pregnancy, Dixie, our regular sonographer, was scanning my back and side to get images and measurements of Jolie. We also learned that untreated torticollis can result in a misshaped head and can later mean surgery for correction.
Being the proactive, Type A individuals that Jordan and I are, we took on therapy and stretching full force.
We started doing the stretching that Suzan taught us in therapy before every feeding. At that time, the girls were still eating 8 times a day, so we got a good amount of home PT in between our visits with Suzan. We went every Monday for about 2 months and finally once Jolie reached 100% range of motion we started going bi-weekly.
We continued to stretch her several times a day and she continued to improve every time we made a visit to Our Children's House.
One day we walked into therapy and I made the comment that Jo has been so straight the past couple weeks. Suzan pointed out that she noticed that Jolie had started to hike her shoulder to compensate for the straightening of her neck, so we learned some new stretches in therapy. We would encourage play with only her right hand and arm for 10 minutes at a time to prevent that hike as well as leaning Jolie to her weakened side while holding the opposite shoulder down. She loved watching herself in the mirror while we did this. We would sing to her and dance, and the silliness of momma and dad would be of distraction for what stretching and exercises we were actually doing.
Finally around 7 months we transitioned to monthly visits.
At this point Jolie has full range of motion and just a 5-7% tilt. Technically the baby is 'cured' with just a 5% tilt, but Jolie was never consistent with that 5%. She continued to revert back to the tilt she knows, like a sense of comfort. I can only imagine it is tough work to hold her head straight, so she gets especially 'tilty' when she is sleepy or doesn't feel good.
Attempting to cover all our options, Suzan mentioned that some find success in using a TOT collar. Suzan explained that she wasn't sure much therapy could cure Jolie's tilt- almost like she was being 'lazy' with her neck. We noticed that she was straight about 80% of the time.. and the other 20%, she would either tilt completely or hike her shoulder up. We decided on the TOT collar for further correction and to see if this would resolve her tilt and encourage Jolie to hold her head straight 100% of the time.
About 2 weeks ago we ordered the collar and once it came in we went for a fitting with Suzan.
Waiting for Suzan!
No so bad..
We learned that Jolie has an extremely tiny neck. Not only is it really short compared to Perfect Posture Parker, but it is really little. She gets that from her momma.
..by the way.. what is it my child is playing with.. looks like some kind of chain saw toy??
She did really well with her fitting and didn't seem to mind having it on for the most part.
Ove the last two weeks I feel like we've seen real improvement with her tilt. She wears the collar 3-4 times a day for about 15-20 minutes.
I was very fearful, and pretty skeptical that the collar would hinder her mobility and motor skills, but it hasn't slowed her down one bit! I do notice that she tolerates the collar better when she is in a good mood. We've learned not to do the collar when she is hungry, sleepy, or having just woke from a nap. She is less likely to wear it the full 15 minutes.
Some days dealing with Jolie's torticollis has felt like a lifetime and other days I'm impressed with how far we've come since her diagnosis.
What I do know is that all the stretching, physical therapy, and time spent working on her functionality has been well worth it to her daddy and me.
Next month is thought to be Jolie's last PT appointment with Suzan. Very bittersweet, as she has seen us through it all, but so exciting to think we could be finished and Jolie's teensy neck to be normal. I am so very thankful our proactive pediatrician that decided that we did not need to wait another month before dealing with torticollis. We got Jolie into therapy quickly and was able to tackle tort head on and aggressively from a very early age. I’m also so very grateful for the solution to this disorder to being so common and easy to fight against. Throughout this past year, Jordan and I have been blessed with passionate and talented medical professionals- from my OB/GYN and perinatologist that carefully walked me through pregnancy and delivery and now with our amazing pediatrician and physical therapist, Suzan. There have been many blessings along the way, and I am amazed to see God's hand in every single bit of it. I know He is always there- but there is something about the feeling you get when you can actually see His plan panning out just as he intended it. He is so so GOOD.
