Our Determined Daughter {Kylee Mae}

If you’re a regular follower of our blog, you know that Kylee was diagnosed with Hemiplegia Cerebral Palsy at 11 months/8 adjusted. If this is new information, you can learn more history here and here. As we’ve been told by many docs that it would, her conditions are slowly getting worse over time. Her left leg, ankle & foot are our main concerns at this point in time. Kylee’s left foot has always turned inward and unfortunately an AFO (brace) won’t help correct it’s positioning due to her entire leg/hip being involved. Below is a picture of the bottom of her feet to give you a close look. Her left foot is also slightly smaller than her right (very common with Cerebral Palsy) as the bones often develop and grow at different rates. Her left foot fits a size 10 shoe and her right is a 11.5.

More pics to show the inward turn of her left foot…

Not only is her foot turning inward more than it has in the past, she is now walking on the outside of her foot as well. It doesn’t seem to bother her at all but it looks awfully painful watching her run and it looks as though her little ankle could snap easily. As she runs, her body tenses up on the left side (arm and leg) causing that foot to turn inward even more. She ends up literally hopping over her left foot with her right.

(Click HERE to see a short clip of her run. Excuse the poor quality.)

Over a long period of time walking & running like this, her condition will likely worsen and could affect her overall posture, balance and spine as well. We recently met with a new neurologist, Dr. Acosta, at Cook Children’s in Fort Worth and plan on doing several more rounds of Botox on both Brody & Kylee, hoping to get deeper into the muscle in order to loosen things up to allow good stretching. Dr. Acosta also strongly believes Kylee has Tibial Torsion which is where the tibia/shinbone is rotated out of position. Kylee has also been referred to an orthopedic surgeon there at Cook Children’s to further discuss the severity of it all and possible treatments for her left foot. Surgery is sometimes an option to help correct a condition like Kylee’s but as always, it comes with risks. I’m trying not to stress the surgery option until we meet with the orthopedist next month.

Overall Kylee has a GREAT attitude and handles having a disability very well. Lately she’s been asking more questions about her left foot, her left hand, why she and Brody have to see so many doctors and why Korbin and B don’t. She sometimes asks why she can’t do certain things that Baxlyn can without falling and why she can’t walk in little princess heels and other cute shoes like Baxlyn. It hurts my heart as these are just some of the beginning realizations she will come to but yet I’m happy she handles it well. Sometimes it’s hard trying to explain such things to a not quite five year old, but I try. I desperately try to find that perfect balance between being honest and open with them about their birth and scaring them into thinking there is something “wrong” with them. I want them to know just how strong they were (and are). I want them to know that God has a plan for them. I want them to know that with determination they can do anything, despite a disability or diagnosis . I want them to understand some day just how PROUD we are of them…and I want them to be proud of themselves as well. For now they can understand that “they were very little and sick when they were born. The nurses and doctors helped them feel better and now lots of doctors try to help make sure they are healthy and strong.”

For the time being, we’ve had Kylee fitted for a new brace. We’re aware that the brace will not help the inward turning of her foot but we are hoping it will help the “rolling” of her foot causing her to walk on the outside of it. This will be Kylee’s 4th brace, the 3rd on her left foot. She’s become a pro at being fitted and it doesn’t bother her a bit these days!

Kylee being fitted for the first time in June of 2010

 Kylee today :]

After anxiously waiting for a couple of weeks, we went to pick up her new brace yesterday. She was so excited to see how it turned out with the butterfly pattern she chose along with pink straps.

Here she was this morning ready to head off to pre-k and show off her brace. She insisted I roll her pants up so that all of her friends could see – melts my heart. I LOVE that she is proud of her brace and that it doesn’t affect her confidence. I can only pray she can keep that spirit as she continues to grow.

I’ll end by saying as Brody, Baxlyn, Kylee & Korbin get older I find myself questioning how much I should put out there for all the world to see. While I blogged just about everything when they were babies I find myself pulling back just a little now days. One day I know they’ll look back to read all I have written and I don’t want them to feel as if I’ve put their entire lives on display for the world. That being said there are SO many families who can learn from our experiences. I’ve received countless emails from parents who delivered premature babies, found our blog and saw a glimpse of hope for their little one. Whether potty training, trying to keep clothes on your kid who likes to be naked or seeking possible treatment options for cerebral palsy, sometimes another mother’s point of view can be helpful! It’s for that reason, for now, that I continue to share what I do!

Developmental Check Up: Braces Round 2

Brody & Kylee had their 6 month check up with their developmental pediatrician a couple of weeks ago. Both are a bit behind in most areas but are making tremendous progress in getting where they need to be and “catching up” after their rough beginning. I always love these long appointments with our developmental ped. as we get a great, thorough examination and look at exactly where they fall developmentally and best of all, I always walk away with a renewed sense of pride knowing how far they’ve come! They both weighed in at about 31lbs and great news, Kylee’s head circumference is not only staying consistent with her own growth curve, but it’s on the charts!

This appointment Brody was “officially” diagnosed with Diplegia Cerebral Palsy, a form of CP affecting the legs. He’s always been a bit off when it comes to balance, coordination and such but lately he’s getting worse. His case is mild, thank goodness, but affects his daily life nonetheless. He has trouble with motor planning which makes little things like stepping up and down curbs or different surfaces, running & jumping hard to do. Despite stretching his legs on a regular basis he is becoming tighter and tends to tiptoe more than we’d like.

Sweet Kylee still battles her Hemiplegia CP as she continues to grow as well. Unlike Brody, she has started to jump and is able to get both feet off the ground – huge deal!! She’s started to run too! You can really see the way her CP affects her when she does her little run. The left side of her body gets pretty tense, her left arm comes in and fisted towards her side and her left foot turns in quite a bit, as she hops with her right foot over it. I’ll admit I think it’s adorable and I love watching her. The best part is she’s got a HUGE smile on her face any time she’s running and is clearly very proud of herself!

Brody & Kylee both are being fitted for leg braces to try to help them with their CP. This will be round 2 for Kylee and Brody’s first time in them. If you’re a long time follower you might remember Kylee wearing both an AFO & an SMO when she was 17 months old. Although she wasn’t walking at that point, she did well with the braces and they didn’t seem to bother her at all. She and Brody will both be getting AFO’s this time, Brody on both legs helping to hold his feet flat and giving him a good stretch and Kylee just on her left, guiding her foot to a natural position when she walks/runs. 

They were both fitted last week for their braces and did great during their appointment. Although painless, in order to make their braces, they have to have molds made of their little legs . Kylee was NOT A FAN during her last casting, so I was a bit nervous at how they’d do this time. It was nice this time around, being able to explain what would happen before we got there. I had showed Kylee and Brody pictures from when Kylee was little and told them “yay, you get to get braces!”…which of course led Korbin & Miss B wondering why they don’t get to have braces…ugh, can’t win! Anyways, I told them both that Mr. Spencer was going to put mud on their legs and it was going to be SO SILLY!

Once we got in the room, we asked who wanted to go first and Kylee was ready and willing. She plopped up on Daddy’s lap with a smile on her face and was excited about the “silly mud”!

Brody sat close by keeping an eye on everything that was happening and Kylee sat and stole the heart of Spencer as he casted her little leg. She carried on a sweet little conversation with him the entire time…

Here she’s helping him by holding the “noodle” in place…

My sweet girl and I!    Brody was up next and did great as well. He wasn’t stoked about the process but managed his way through it. We were cracking up the entire time over this look on his face…

Again, Kylee right in on the action, helping hold the noodle as Brody’s cast was cut off…

Once all was said and done he was all smiles and told Spencer “I fink I need a sticker now.” LOL!

 

I can only hope they do as well with the actual braces as they did with getting fitted for them. They should be receiving them in another week or so and of course, we’ll update you!

Developmental Check Up - Brody & Kylee - Advice? Anyone?

First, I apologize for being distant the past week or two. Between doctors appointments, busy toddlers and 5am workouts I'm exhausted to say the least! I've deprived the poor things from play dates and all the regular outings we usually go on. Our near future surely consists of pumpkin patches, walks around the neighborhood and the zoo....gosh that zoo has been calling my name! One thing that business cannot get in the way of is our beloved doctor's appointments! This week Brody and Kylee had a check up with their developmental pediatrician. Unlike our "regular" pediatrician, our developmental ped evaluates them thoroughly and addresses developmental issues due to their prematurity.

Both Brody and Kylee did well, as always, and impressed Dr. Roberts with the remarkable progress they've made since their discharge from NICU. There were times we would have been THRILLED to know they would EVER reach the point where they are now...walking, talking, learning...thriving. They are both still a tad bit behind in some areas according to their adjusted age (28months) but are making progress we are all happy with! Brody's motor skills at this point are those of an 18-24 month old. Cognitive level was 27months, Receptive Language 30months, Expressive Language 30months and Fine Motor 27months. He weighed in at a whoppin 28lbs 4oz (25%) and is 36inches tall (50% - and to think a neuro said he would always be on the short side ;).

Kylee like Brody scored at 18-24months for Gross Motor, 28-29months Cognitive, Receptive & Expressive Language she's ahead of the game (no surprise there for those of you who know her) at 34months and Fine Motor she was also right at 28-29months. Our big girl weighed in at 27lbs (23-50%) and is 37inches tall (50%). Her head is still pretty low on the charts sitting in the 3rd percentile but Dr. Roberts isn't too worried and will just keep a close eye on her development. We've been faced with another therapy option for Kylee and I gotta tell you I'm stumped :( For those of you who remember our "on the fence" feelings about Brody getting a cranial helmet we're now feeling a little iffy on the new therapy the docs have mentioned to us on several occasions.

For those of you who don't know, Kylee suffered a bilateral brain bleed, grades 1 and 4, the 4 being on the right side of her brain. This brain injury has affected the left side of her body, her hand in particular, and has resulted in hemiparesis (a type of Cerebral Palsy). The therapists and doctors have asked us to consider Constraint Induced Therapy. The therapy would consist of constraining her right arm to where she is not able to use it, at all, for a long period of time (weeks) in hopes to strengthen and encourage use of her left hand. I've heard of this kind of therapy before and about how effective it is, however, most of what I hear is how well it did for adults after brain injuries such as stroke. The difference between an adult and a child, an adult can understand the point to the therapy, a two year old, not so much. I personally don't know of anyone who has been through Constraint Induced Therapy with a toddler. Obviously it would frustrate the crap out of her, not being able to use her one and only "good" arm/hand. I'm just having a hard time thinking about weather or not the frustration will outweigh the benefit. Who knows, maybe it won't be as bad as I'm imagining?? On the other hand I am fully aware that the sooner and more aggressive we tackle the problem the better the outcome we'll have as her brain is still "plastic" as the docs have always said. So I know it's a long shot but if any of you readers have been through this, please give us your advice on the matter. We'll be doing research of course, but to hear from someone whose been through it would be great. Thanks!

What's up Docs?

We've had several doctors appointments within the past month or so and I've yet to blog about any of them. Let's play catch up, shall we? Brody & Kylee had their annual follow up with the pediatric eye doctor. It was just the three of us and it was so fun! I love getting out with just one or two of them by myself, it's special bonding time as well as a feeling of independence for me not having to use a stroller. Nobody takes pictures of us, we don't get many questions, nothing. It's nice to have that feeling of being normal every once in a while.

Kylee, Dudu & Brody

I used to absolutely DREAD going to this particular doctor. They had to be seen several times within weeks of being released from NICU. I'll never ever forget those early days and having to wait in the waiting room with my 5lb preemies and being absolutely terrified of the germs surrounding us... if a fear of germs would have given me a heart attack, I would have dropped right then and there (I know you other preemie moms know what I'm talking about!). I had their seats covered with blankets and was literally afraid of them breathing the same air as the "big kids" around them for fear they could catch something. Now that they're older and my germaphobia disorder (haha) has subsided a bit I let them actually play in the waiting room with the other kids! After 2 hours of dilating and sitting and being examined they both checked out fine and don't have to be seen for another year! Here's a pic of Brody and Kylee checking out the cool tools before the doc came in.

Our next two patients were Korbin and Baxlyn. They were seen by Dr. Roberts, the developmental pediatrician, and impressed her, like always. This was the longest they had gone since being born without seeing her, 6 months. Korbin is right on track for actual age and Baxlyn was above, scoring at 30months on most areas!!! They don't have to be seen for another YEAR! Here's Baxlyn showing off her picture recognition skills...

My little man and little lady sitting on the curb checking out their stickers!
Up next was the dentist with all four. This was our first time to go into an appointment stroller free, it was challenging, but we did it! So many people are shocked I already take them to the dentist. This was their 3rd appointment actually (4th for the Korb). We were told by our docs that because they were preemies, they were at higher risk for complications and that they need to be seen at a year adjusted. We've taken them back every 6 months and they've done great every time. Kylee was a little apprehensive the second we walked in the door and said "aw done, aw done. awmost done...awwwmost" trying so hard to talk me in to believing we were indeed all done with this place! The dental hygienists always take them 2 at a time. 2 go in one room to be evaluated and cleaned while the other 2 go in another and then they all come together to see the dentist. Brody and Kylee have the hardest time relaxing to let Dr. Brister take a peek inside, Baxlyn on the other hand jumps right up there like she owns the place! He warned us (which we already knew) we for sure have braces in our future and we need to start saving now...yikes...braces X 4... what age can we put them to work?! Beseides being a little crooked and crowded, their teeth all look great. He did tell us that he has a feeling Baxlyn is missing a tooth. She's a late teether, they all are actually, so we haven't thought much about her not having all of her incisors yet. He said he could be wrong, it may show up eventually, but based on the looks of her gums he wouldn't be surprised if it's not there at all. Luckily it's a bottom tooth, so it shouldn't be too noticeable if it is missing. Time will tell! Korbin was looked at a little closer because of his incident a little while back. We hit the good side of the 50/50 chance and I am SO happy to say his tooth has survived! I've gotten used to it being out of place now and I'm just so happy it die altogether. Missing a top front tooth would have been a big deal to this momma!

Therapy wise (ECI), we've had lots of success and changes! Korbin just graduated from Speech while Brody and Kylee just said good bye to their Developmental Specialist! Thanks soo so much for all you've done Ms. Lindsey & Ms. Lauren!

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Kylee & Brody's Developmental Check Up

Bret and I had a double date yesterday with Brody and Kylee! We spent the whole afternoon with Dr. Roberts (their developmental pediatrician) bragging on them and showing off their new skills. She was THRILLED to see them both walk into her office for the first time and said multiple times she couldn't believe her eyes and how phenomenal they are doing!

Do they not look like they're 5 years old in this picture?! They look HUGE!

Brody was up for evaluation first and did well overall. After various tests (cognitive, fine motor, expressive/receptive language...) he scored between 22months-24months of age, just where he should be! Although he's been walking for months now, he still resembles a baby deer to a degree. He has a hard time, even on flat surfaces sometimes, with his balance and coordination. When we play outside for example, he prefers to stay on the porch, avoiding the grass or any other challenging surfaces. We had X-rays done a few weeks ago to rule out any abnormalities with his hips/gait, everything looked normal, thank goodness. Brody does have some tone issues tho, through his ankles which leads Dr. Roberts to believe it's safe to say he has VERY MILD Diplegia CP (cerebral palsy affecting the legs only). You can learn more about this particular type of CP here. This doesn't mean a whole lot to us and won't change a thing when it comes to Brody and his therapy treatments, we will continue PT through ECI and once he "graduates" from ECI(at 3 years old) he will likely need additional private therapy. Brody weighed in at 27lbs 1oz and was 33 1/4 inches tall!

Kylee had a great check up as well. It was less than a year ago we were pretty concerned with Kylee's head circumference and the word "microcephaly" was added to our whole new vocabulary since having the babies. Her head size is now right on track and she is showing TREMENDOUS growth in all developmental areas. 3 months ago, she hardly said any words and today she has too many to count and even has some 2-3 word phrases. It seems like once she learned to walk, she has just taken off in all other areas at full speed! She scored a little bit higher than Brody in some areas, landing her in the 23-24month range, again perfect! Dr. Robert's had mentioned at a previous appointment that one of Kylee's legs measured a tad bit longer than the other. Yesterday, her left leg (her affected side) measured half an inch shorter than her right. We were told this is common in kids who have hemiplegia cp and that it's often that the bones on the affected side don't grow at the same rate as on the "good" side. Right now this causes Kylee's walk to look a little "Bambi-like" too. For now, her docs will keep an eye on it and treatment may be given when she gets a little older. Our big little girl weighed in at 25lbs 12oz and was a bit taller than Brody at 33 1/2 inches tall! My two little loves picking out their stickers! We're sooo sooo sooo proud of you Brody & Kylee!

Developmental Check Up - Girls!

Bret and I took the girls to the developmental pediatrician Friday morning while the boys spent the morning with Grandma and Aunt Beth. The girls did great the entire appointment and were as happy as could be. Little Miss Baxlyn scored above her adjusted age in all areas with the exception of Expressive Language. Kylee scored right at adjusted age in all areas with the exception of Gross Motor and Expressive Language. Overall they are both doing great! Baxlyn was just a hair away from weighing 20lbs (19lbs 15.5oz to be exact) which means we can turn their car seats forward facing when we feel ready. Kylee weighed in at 21lbs!

Our main concern we had when leaving the appointment was Kylee's head circumference. After measuring multiple times, it showed her head hasn't grown since she was there last, which was January. The doctor said because of her brain injuries her head is not growing as rapidly as it should. Bret and I ask that you keep Kylee in your prayers and hope she shows better growth as time goes on. We are also currently waiting to hear from Texas Scottish Rite Hospital. Kylee was referred to SR for orthotics (braces) for her legs/ankles. Because of her hemiplegia, there's a chance she may not get in. If she doesn't get accepted there are other resources we can go through to get Kylee the orthotics she needs. We're not too worried and know God will open the door to where ever it is Kylee should be treated.

More stats next week when we go to the pediatrician's for their 15month check up!

Doctors Rain & The Runabout

We had a fun BUSY day and all got to get out of the house for some big appointments. Bret and I took the boys to their developmental pediatrician, first time just the four of us! After putting the boys in the stroller Bret noticed Korbin was holding Brody's hand.... how SWEET is that????!!!! I immediately dug through my purse for the camera to capture this rare act of brotherly love!

Will probably be one of my favorite pictures FOREVER - I LOVE IT!

Their appointment went great! Both boys have minor issues to worked on but overall are doing fabulous developmentally. Their developmental ped has been with them since they were in the nicu and she says she is AMAZED at where Brody is today given his rough start. She told us several times throughout the appointment his life is "nothing short of a miracle"! We all knew this already, but to see him literally "WOW" a doctor whose been there through it all puts me on cloud nine!

We recently made the switch from infant car seats to "big" car seats. After researching and weighing the pros and cons of different car seats, we decided the Britax Boulevard was right for us. The transition to new car seats also meant we now HAD to say good bye to our SnapNGo strollers and use the new Runabout.

Out with the old....

In with the new!
After the boys' appointment I headed back to the house to pick up the girls and the monster stroller and headed for the hospital to meet my parents for the babies' synagis shots. To make my first (out of the neighborhood) adventure with the Runabout even more interesting... God decided to let it rain - not fun! I decided not to bring the cover for the stroller because, according to the weather man, it was going to rain at night not during the day. Luckily it never poured and the stroller was hardly wet when we got there. The shots went well (well as well as shots can go for babies). The babies all weighed between 18 and 20 pounds!!

Grandpa's job was to hand out fruit puffs while each of them waited their turn to get shots by the mean nurse.

and Grandmas job... to make the boo-boos feel better and offer apple juice!

Love this one of Brody... poor guy had no clue what was about to happen :[
As we left the hospital I felt like an exhibit at the museum being stared at by onlookers, there was an elderly couple who even gave me a round of applause (no joke) as I finished loading the babies and reattaching the stroller to the back of the van.... thhhaaannnkks!! All in all it was a good day, an adventurous day, a day that refreshed me and gave me new strength to face tomorrow!

Until next time!




PS- HOLY COW THE BABIES WILL BE A YEAR OLD IN 13 DAYS!!!

Sweet Baby Girls

Bret and I took the girls last week to the developmental pediatrician, it was the first time to just be the four of us! Both girls did great and had a fun time getting to "explore" a new environment (poor things only leave the house once a month for synagis shots).

Kylee & Baxlyn

Baxlyn is doing great and scored above her adjusted age in most categories, with the exception of language. An early intervention specialist has come to work with both girls over the last month to hopefully help develop better receptive & expressive language skills. She is still our tiny one weighing in at 17lbs6oz but her size has not stopped her from doing anything. The past month she has learned to transition in and out of sitting, pull up to a standing position and walk along the side of the couch, and crawl the "proper" way which are most of her goals we had set for June!!!

Kylee had an overall good check up as well... which by the way she is now SITTING and WAVING (as you may have seen on the previous post)!! Unfortunately the signs of CP she had been showing over the past few months are still there and progressing. The diagnosis was made that she has mild-moderate Spastic Hemiplegia Cerebral Palsy. Although we had talked before about the possibility of CP, the doctor was reluctant to say it (obviously this is heartbreaking news for some parents and certainly not what any parent wants to hear). Some may not understand, but Bret and I cannot let go of or forget the fact that there was a point we didn't know if we would have this little girl to raise. The fact that she is here with us today is such a blessing. It is still too early to know exactly how she will do developmentally, but Bret and I have faith she will continue to thrive being the fighter that she is. Our little miss weighed in at 18lbs15oz!!

As we know many of you are, please continue to keep our precious babies in your prayers!

Thanks Bret & Heather