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!

 

Kylee’s New “Bracelet”

I mentioned a while back about doing constraint induced therapy with Kylee. After doing tons of research and talking to many people about the process Bret and I decided to do it. Although most of what I read is the therapy done on adults after a serious brain injury, I did see several stories on the constraining done with small children. Every single story I read was successful, which was super encouraging, I heard of not one case where the patient’s condition didn’t better from the process.

A little background for those who don’t know, Kylee suffered what’s called IVH (intraventricular hemorrhage), also known as brain bleeds, shortly after birth. IVH ranges from grades 1 to 4, 4 being the worst, usually causing long term damage. Kylee suffered a grade 1 on the left side of her brain and a grade 4 on the right resulting in the left side of her body not functioning exactly as it should and causing her some slight delays. The medical terminology for her condition is Spastic Hemiplegia Cerebral Palsy.

Kylee’s occupational therapist put in the order for her new brace and  yesterday we introduced her new “bracelet” to her and began       Day 1 of an 8 week process. The brace is made of neoprene and has a splint in it not allowing her any movement from just below her elbow to her finger tips. By keeping her right arm (the “good” arm) constrained, her affected arm/hand/wrist is  being forced to do all of the work. She has to wear her bracelet 8 hours a day (keep in mind she sleeps an average of 16 hours in a 24 hour period), which means basically the entire time she’s awake, besides baths.

Mrs. Regina, her new OT, came yesterday and I had already pumped Kylee up about wearing her new pretty bracelet. She was stoked and was ready to rock and roll when Regina got here. She did well for the first few hours of wearing it but, as I expected, it got old pretty fast. Today, Day 2, Kylee is extremely frustrated and asks to take her bracelet off throughout the day. Although I know these babies are doing phenomenal, and I am so so glad for that, I’d be lying if I said a small part of me didn’t feel a bit of guilt for not being able to carry them longer. It’s time like these, when they struggle with the long term issues from their prematurity, that I wish I could go back in time and have a re-do at the whole quad pregnancy thing.

Here’s Kylee with her new bracelet last night before bed…

Today, not quite as happy, but hanging in there. So hard to explain this type of thing to a two year old…

The everyday tasks for her are proving to be extremely difficult. Eating is by far the hardest but she’s done well… if you know this girl, you know there’s not much that will stop her from eating her food ;)

Although I don’t expect her left hand to have perfect function after the 8 weeks, I am confident we will see good results. I’m sure wearing her new brace will get easier for her but in the meantime, this lil’ girl (and this mama) could really use some prayer to help us cope with the new struggles!

Kylee Mae, Mama loves you sweet girl <3

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!