Kylee & Doc – Therapeutic Horseback Riding!

That’s right! Our little animal lover, Kylee, is now taking horseback riding lessons and she is over the moon excited!

We’ve had multiple therapists over the years tell us they think Kylee would benefit from therapeutic riding lessons and we’ve never done it. Their sweet Granny Linda mentioned a couple of months ago that she would like to make it possible for Kylee to give riding a try (thank you, Linda!!!!). While each of the quads would love the experience and both Kylee & Brody could really benefit physically from it, we opted to let Kylee take lessons alone to start with. Something SHE got to do, that was special and just for her, something that set her apart from her brothers and sister. She is in a 5 week riding program and has lessons once a week at a local, Christian based, facility where trained instructors work with her to improve overall development. Below, Kylee & Linda say hello to another horse while her horse, Doc, gets prepped for their ride.

If you know Kylee at all you know she’s alwayyyyyys loved animals. The ONLY animal that has ever scared her…..are horses, believe it or not. Granted it’s been well over a year, but each and every time we offered to let the babies ride the horse at the zoo, Kylee was terrified and wanted nothing to do with it. She’s had maybe one or two pony rides over the past couple of years at festivals and such which has gotten her a little used to riding such a large animal, and apparently that was all she needed. We went to the ranch a few weeks ago so she could meet the horses and she fell in love instantly! Her first lesson was a week ago and she couldn’t wait to get on!

Kylee is in private lessons so she is the only one in the arena during her designated time. She had a total of 5 trainers/volunteers walking with her the entire time she was on the horse. Talk about attention ;)

I tagged along for her first lesson to snap pictures, of course. Not sure if it was the Batman shirt I was wearing or the braided pigtails, but I was asked by several people if I was Kylee’s sister! I get the “are you the babysitter” question pretty often, but never the sibling. If it means I’m looking young in some people’s eyes, I’ll take it ;)

Linda and I sat in a nice shady area watching her do her thing! She enjoyed every minute of it and her big grin never faded. She loved saying “Walk on, Doc!” to get him moving! I couldn’t help but laugh as she was easily distracted by dogs she would see out on the farm that she had met previously. We could hear her from across the arena asking “where was that dog? where did he go? why was he back there?" where is so-and-so?”

She practiced guiding the horse and holding the reigns tightly with both her right hand and “lefty”. She weaved in and out of poles and practice putting rings over them with both hands as well!

Once her riding time was over she got to help lead Doc back into the barn and put up equipment too!

Can’t wait to see how she continues to progress and if she develops a love for riding. If you have a child or loved one who has benefited from horse therapy, leave a comment or email me! I’d love to hear all about your experience!

Confident Kylee & A New Doc.

We had our appointment with an orthopedic surgeon a few weeks ago regarding Kylee’s foot/leg. We LOVED Dr. Mayfield at Cook Children’s and found out he works closely with Dr. Acosta, the neurologist who will be administering Kylee & Brody’s next rounds of Botox in May. He said her tibial torsion wasn’t as bad as we were told initially so that is good news. He also said while Kylee’s brace is probably helping more than hindering, he doesn’t think it alone will have much of an effect on her foot positioning. Our plan for now is to follow up with Dr. Mayfield within 2 weeks of the Botox injections so he can see how the specific muscles reacted to the treatment. It is that appointment that he thinks will confirm what he already predicts will help Kylee the most, which is a surgery called the SPLATT Procedure. The surgery would be transferring half of the tendon from one side of the lower leg/foot around to the other side in hopes that the extra tension will help correct her foot position. Bret and I asked a lot of questions at the appointment and have done a bit of research since then but are not hanging on every word just yet until we see how this next round of Botox goes. Their Botox in the past has not shown us a HUGE improvement. After examining Kylee’s condition, Dr. Mayfield (who also knows our previous neurologist) told us that Dr. Acosta spent a significant amount of time targeting this specific area where Kylee needs the most help. In his words “If anyone can hit the right spot with a Botox treatment, it’s Dr. Acosta”. We feel very confident in his ability and the ability for the two doctors to work together as a team to figure out the best treatment for Kylee.

Over the course of their little 5 years of life, our crew has seen a countless numbers of doctors for many different reasons. Adding a new one doesn’t even phase them these days. Kylee was so comfortable with Dr. Mayfield! She did a lot of the talking during the appointment, told him all about her leg and how it affects her, her therapies…etc. At one point (when trying to reference her hand splint she used during restraint therapy a long time ago) she said “…there’s this thing, in my panty dwawer (drawer)…” Everyone in the room did all they could not to laugh out loud but Dr. Mayfield managed to hold it together, smile back at her and say “In your panty drawer, huh?!” It makes us so proud to see her so confident and be able to talk to people to openly about the things she struggles with!

For now, Kylee wears her brace only a fraction of the time. She complains that it hurts and by the looks of the way it fits, it’s no surprise that it would hurt. She tolerates it for an hour or so before wanting to take it off. We’ve taken her twice now to have it adjusted but the orthotics consultants feel they’ve done all they can to make it fit her leg/foot. It’s a bit frustrating as a parent, but we’re doing what we can do while trying to keep Kylee in good spirits. The last thing we want her to feel is “different” in a bad way, ashamed or overly worried about the way her Cerebral Palsy affects her.

We would appreciate if you threw up a prayer for us every so often that we continue to place our kids in the right doctor’s care and that over time we have the right guidance regarding their treatments. Thanks!

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!

Complete Blog Neglection…

I have been QUEEN of it these past two weeks and it’s come to an end! Lots of stuff coming your way, so stay tuned! We’ve been good and have been busy enjoying this (mostly) beautiful Texas weather! More than ever I’m wishing I could stop the hands of time, just for a bit. Brody, Baxlyn, Kylee & Korbin turn THREE next week, I can hardly believe it! I’m praying we’ve got nice warm weather so we can spend the day just the 6 of us doing some of their favorite things.

Miss Kylee Mae finished up her constraint induced therapy last week. She wore her “bracelet” for 7 weeks during almost all waking hours. I’ll start by saying I am SO SO happy we did it and encourage any other parents looking into it to go for it. I was so anxious at the beginning about how she would handle it and adjust but she did great. It even got to the point where she would ask for it each morning after she woke up “got to wear my bracelet, Mommy!” It also helped that so many of YOU who know her in person talked about how BEAUTIFUL it was on her each time you saw her, so thank you for the encouragement!

Since having the brace off, she of course went right back to using her “good” hand for just about everything but has involved her left hand MUCH more than before. You can definitely tell she is more aware that it is there and is starting to use it to help her function.  Before the brace/splint she would very rarely use her left hand (without being prompted) to assist in helping with ANYTHING. Now she is using it, sometimes without being prompted, to help stabilize objects. Before the constraint therapy she hard a very hard time pointing and now she's able to point to things pretty easily. One of her biggest struggles is being able to using her thumb and index finger together. Picture putting a coin into a piggy bank by pinching the coin and releasing it into the bank or even picking up a cheerio off a flat surface. Such tasks are very very hard for her left hand or “Miss Lefty” as we call it. Slowly but surely she is making progress. When she was little bitty she would get frustrated and simply give up on what we were trying to get her to do. She’s become much more patient now and really tries and concentrates on fine motor activities. Makes me so so proud!

Below you can see how well she’s holding the puzzle with her left hand. Her little index finger doesn’t always cooperate but hopefully that will improve with time. Looking at this picture makes me think of our NICU days. While seeing them in such bad condition after birth, I couldn’t help but stare at their helpless bodies and wonder about her (their) future and how  prematurity would affect her growth and development. We’ve had our fair share of trials but in the grand scheme of things, it’s been nothing. Seeing her in this picture kicking prematurity's butt WITH a smile on her face makes my heart swell. We are so SOO soo truly blessed!

Here’s a few of “Miss Lefty” working beautifully at helping hold Kylee’s cereal bowl ;)

Oh my sweet Kylee Flower, once again, if there’s anything you should ever know it’s just how proud your daddy and I are of you. Love you so much baby girl!

 

This Little Girl...

...got into Scottish Rite and will be getting her braces mid July!

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!

My little Darlin'...

...home now for a year!

Bret, Baxlyn, Korbin and I went this day last year to pick up Miss Kylee from the hospital! She and Brody had their very own suite and when I walked in, this is what I found...

Although we were SO HAPPY to be taking our baby girl home, it was one of the hardest walks out of the NICU that I have taken, having to leave Brody alone again.

3 down... 1 to go! L-R Baxlyn, Kylee & Korbin

A cute laughter video of Brody and my sweet sweet Kylee Mae! Please ignore their wild hair and the crazy mommy shadow popping up in the background :)

Love you Baby, happy one year anniversary!!!

A good day to be a Kylee Mae!

Nothing but good news lately for our Kylee! Her EEG (see previous blog) results from last week came back normal and her MRI showed no new damage! They are going to send her to a neurologist and will most likely be doing another (longer, more invasive) EEG as a precaution within the next month or two. She also had a visit with her cardiologist this week who could not hear her VSD, which gives her reason to believe its GONE!!! Whoop Whoop! She will be going back in 6 months to do a follow up sonogram to confirm that it's gone for sure!

We love you Kylee!!!!!!!!!

Updates on Brody & Kylee

Thanks to all of you who said prayers for Miss Kylee on Monday. It was a LONG, HARD, EXHAUSTING day for her but overall went well. The past few months she has been dropping her head occasionally, it's a very quick drop and back up again. When she first started it, I thought it was just a "new thing" she was doing but when her therapist and developmental ped saw it, they immediately said we needed to have things checked out just to make sure. There's a chance that it could be nothing, but given her circumstances and history it could very well be something to worry about like seizures.

Kylee, happy as can be when we arrived!

She had an EEG and MRI scheduled and what I was nervous about was the MRI because she had to be "put under". Her EEG was done first and let me tell you, it was TORTURE. We had to hold her down while she screamed so they could attach probably 30-40 electrodes (seen at top left in picture) to her scalp. Once they finally got her hooked up and left her alone she passed out which was ideal to get a good look at her brain. Bret and I were able to stay with her the whole time, but it was soo hard seeing her that upset for that long of a time. I've seen our babies go the A LOT of stuff in their little lifetime, but this was hard for me, I guess because she's older. I told Bret once they get a little older and have to go through this stuff, after the appointment we will take them to the store and let them pick out whatever toy they want (ok maybe any toy at the dollar store ;)). They watched her brain activity for about 30mins and then woke her up. When I say "woke her up" it wasn't a sweet little voice saying her name softly. They used what looked like a book light to wake her up, with a series of bright flashes slow then fast then slower then faster... it was like the paparazzi to the 10th power. Needless to say as she woke up she was TERRIFIED, had cracked lips and a dry mouth from screaming, and still very tired.

She went straight from the EEG to the MRI. The anesthesia put her out within 20seconds and the MRI only took about 20minutes. When she woke up she was not only scared but mad and ONLY wanted her Daddy, if I even looked at her she screamed. Within an hour we were released and headed home. We should be contacted this week to hear the results, keep praying!

Checkin' out her "Good Patient" sticker and glad to be home.

Now for Brody! He has been doing well with his cranial helmet, I realized it was 6 months ago that he got his first one which is crazy but we have seen MAJOR MAJOR improvements! He will be fitted this week for his third and hopefully FINAL helmet and should be done within just a few more months!!!

Brody at the doctor getting his helmet adjusted.

Love this one of him looking at one of his progress sheets! "Look at those results!!!" lol

Thanks again for the comments, encouragement, texts, and prayers for Monday! They were greatly needed and appreciated!

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