Cast-free Kylee! {4 weeks post SPOTT surgery}

Our Kylee is now cast free! She ended up being able to get it off 1-2 weeks early than we had anticipated – yay! I have to take a moment to brag on this little girl. She has made this entire process seem like a piece of CAKE. Seriously, she is such a brave, tough little girl and continues to amaze me as she grows!

I mentioned a while back that she happily starting crawling the day we brought her home from the hospital after surgery as it was much easier than being wheelchair bound. It was within 2 weeks she started applying pressure and walking on her left foot. Took us all (including her doctor) by surprise but she insisted she was fine and her doctor gave the OK as long as she tolerated it. Because of her smooth sailing recovery, Dr. Mayfield decided to take the cast off a bit earlier than planned.  You’ll notice her cast is no longer neon yellow and she is sporting the caution orange color here. Somehow she (ahem…Daddy) got her cast wet during one of her baths so had to have it re-casted which is where the orange came in. Bret and I took her this week to have it removed for good! She walked right in there like she owned the place and was happy to get the show on the road…

 

Below are pictures of her incisions… if you don’t handle stitches, incisions and a little dried blood very well, here is your warning to leave and come check the next blog post….

.

.

.

.

.

.

.

.

.

.

.

.

.

.

Dr. Mayfield did a total of 5 incisions. Here are the first three on the inside of her foot. He started at the bottom, took a teeny tiny tendon, sliced it in half (length ways) and then proceeded to transfer it up and around the back of her leg using other incisions to help guide the tendon to the desired spot on the other side of her foot. The pink arrow is the incision where he did a gastroc release to help with her tone issues.

Here is the outside of her foot. You can see the tendon was brought around the back of her leg and again “weaved” under the skin where it was attached to the spot that the middle arrow is pointing to. You can see where the outside of her foot is calloused from walking on on it for so long. Her doc is confident over time and walking in a more natural position that it will all heal itself.

Kylee is now wearing a boot to help protect her foot a little longer. We’re unsure yet as to if she will go from this into a regular shoe or if she will still need to have extra support from an SMO (brace) of some sort, like she wore prior to surgery. She will go back to Cooks in 4 weeks to check her progress and to discuss the next step. Obviously we would love for her to FINALLY be brace-free but understand there may be a few more hurdles to jump before we reach that point, and that’s ok!

Now… some before and after pictures! Here’s a pretty typical picture of Kylee’s foot before surgery. This one was taken in October.

This one was taken at the hotel the night before her surgery. While we could physically manipulate her foot to (somewhat) point it forward, it always went back to this position. Walking, running, standing still, with a brace, without a brace, with or without wearing shoes THIS is what she dealt with 24/7. Although she has never seemed to mind, it was painful to watch and unfortunately, it was only getting worse as the months passed.

Ready for this?! Kylee’s foot as of yesterday…

Seriously. Look at how freaking great she looks! This is NO manipulation at all and is all her. Although she is walking well in her boot, she’s still very hesitant to walking barefoot. The first time she stood without her boot she cried and sat back down immediately. I’m not sure how much of it is pain and how much is just that weird sensation of not having your foot being held in one position because of the cast. Dr. Mayfield said we can expect it to be tender and sore as things loosen up again. I’m very anxious to see once she does start walking on it how everything looks but for now, Bret and I are so please and even more so thankful we have amazing doctors that help our babies thrive!

Here are a couple of shots from the back BEFORE surgery. This is a good representation of the best position we could get her foot into before..

…and a look from the back post-surgery!

There have been several times over the past few weeks, while in her cast, that we notice her leg/foot still turned inward. Her neurologist and surgeon are keeping an eye on the rest of Kylee’s left leg. We’ve had several doctors think she has a mild case of tibial torsion (where the tibia twists abnormally) going on while others don’t think it’s an issue. One thing that is certain is that kids with hemiplegia cerebral palsy are at a very high risk for abnormal bone development on their affected side. We’ve been told over time, there’s a good chance Kylee could develop other issues further up her leg that we may need to address. All of that, of course, depends on her growth and the results we see from this surgery. While it seems obvious her foot will be MUCH better from here on out, what we don’t know is how much of that twisting was her actual leg and not just her foot.

Before we left Dr. Mayfield’s office she let him know she was “ready for him to fix her left hand”. Bless her heart. Makes me sad but also happy at the same time knowing she feels that safe with him! He explained to her that he doesn’t work on kids’ hands but his very good friend did and that as soon as we finish up her foot, he would be happy to introduce her to Dr. Sherman. One thing at a time, baby girl!

Thank you all for your support through this surgery (and the others we just had!). We greatly appreciate all of the prayers, the cards, the meals and the extra help with the kiddos. Bret and I are so so blessed to have so many people who care and who back us through whatever is thrown our way!

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!

18 Month Check Up & Scottish Rite

We took Kylee for her long time waiting appointment at Scottish Rite Hospital this week. Upon arriving I thought of the many times we have taken Brody to Children's. The view from the parking lot was filled with bright colors, huge crayon sculptures, and a massive playground open to their patients - a child's dream! As we walked through through the door we were welcomed with friendly smiles and the staff greeted Kylee with a stuffed animal she could take home. The hospital itself was incredible, almost like one huge museum for children with gigantic kaleidoscopes, toys and activities to do everywhere!

Kylee playing in her exam room while waiting for the staff!

Kylee was seen by a nurse practionioner, an occupational therapist, a physical therapist and an Orthopedist... all which had different things to say about Kylee's braces. There are sometimes conflicting issues and opinions between the medical professionals and therapists Kylee sees on a regular basis that leave me, as a mother, torn on what to do for her, treatment wise. I was hoping the team at Scottish Rite could give me a clear black and white answer on what's best for her since they do specialize in orthotics, but unfortunately I didn't get that and it looks like it's a "time will tell" type of thing. The Orthopedist explained her braces are a "temporary assist" and that the problem with her feet turning outward is a neurological issue (which we knew). The braces will not prevent or solve a problem but will "help function".We will hope that she will "neurologically mature" and that her feet will naturally fall into a more normal position. If not, there are things we can look at in the future if needed like surgery, botox or other types of orthotics. For the time being Kylee can wear her braces when needed or when doing things in which the braces help her. Overall our visit to Scottish Rite was great and I'm extremely thankful she was accepted! For now, we wait and pray time will reveal what's best.

After her appointment she, Bret & I went to lunch at Chili's...

where Kylee evidently saw the biggest fry she had ever seen in her life...

We also had the babies' 18 month well check up this week! Other than the boys breaking the bottom drawer, emptying out the drawers, clearing the toy box from the bottom of the exam table and almost pulling the blinds from their hinges, the babies were on fabulous behaivior! They each got their Hep A shot and Korbin was the only one to cry (and just a tad at that)!

My little champ after his shot!

Here are their 18 month stats:

Brody:

24lbs (23rd percentile)

30 3/4 inches (10th percentile)

18in head circumference (5th percentile)

Baxlyn:

21lbs 12oz (13th percentile)

30 3/4 inches (23rd percentile)

17 1/4in head circ. (not yet on the chart but no concerns)

Kylee:

21lbs 9oz - YES Baxlyn is a tad bit bigger! (12th percentile)

31 3/4 inches (36th percentile)

17 1/4 head circ. (not yet on the chart and not maintaining her personal growth curve)

*I had mentioned a while back about Kylee's head not growing like it should. The doctors are getting more concerned and are in the process of ordering and MRI and other testing for Kylee to try to find out what's going on. Please pray we find answers quickly so we can help our sweet baby girl thrive like her brothers and sister!*

Korbin:

23lbs 13oz ALMOST caught Brody! (22nd percentile)

32inches (39th percentile)

18 1/4 head circ. (13th percentile)

Developmentally Korbin and Baxlyn are goind well but lag behind a bit in speech. Brody and Kylee are still trying to catch up and measured up to 11months and under. Will will be adding a speech therapist for Brody and Kylee as well as an OT for Kylee. We're told over and over that "2" is the magic age that preemies generally catch up... at the rate we're going im not sure if "2" is our magic number but nonetheless I know they will continue to thrive and be just fine! PLEASE continue to keep our sweet babies in your prayers!

Thanks, Bret & Heather

These braces were made for walkin'...

...and that's just what they'll do...

one of these days these braces are gonna walk all over YOU!

That's right, Kylee got her braces! An SMO on the right and an AFO on the left. We are hoping they will give Kylee the stability she needs in order to walk by holding her legs/ankles/feet in the correct positions. Below is a picture of Kylee standing without her braces. This particular pic was taken a while back and her feet are slowly turning out more as time goes on. As you can see her left foot turns outward more than the right, therefore requiring a bigger brace. (her AdOrAbLe diapee cover embroidered by one of my awesome quad mommas, Sandra!)

Kylee only has to wear her braces during the day and gets a good break during naps and at night. Although it has been challenging for her to pull up to the couch she is handling them well and they don't seem to bother her. We're not sure yet how long Kylee will have to wear her braces. Of course we pray it's a short term thing and that she will eventually be able to walk without them. Her physical therapist says there's a chance she will need the AFO forever, but only time will tell. This little girl has overcome A LOT in her little lifetime and a few braces won't slow her down that's for sure!

Stay tuned... LOTS coming up!!!!

Change of plans for Kylee Mae!

Kylee was scheduled to go to Scottish Rite mid July to get her braces for her legs. We got a letter a week or so ago informing us her appointment had been rescheduled to mid August. We decided to have her fitted and casted at another facility and have her follow up and continue treatment at Scottish Rite. The sooner this baby girl gets her braces, the better!

Things going well before casting began...

Things not going so well after it began, poor girl :(

Love this one of Baxlyn. "Maybe if I'm a good girl and I stay quiet, I won't have to go next!"
Kylee back at home and happy again. She will be receiving her braces in just 2 weeks!