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!