I’ve been meaning to post this for so long but man, summers are insane with kids all home and then having a child with special needs to add to the mix, there’s not much of a break. I can’t think, let alone try to write. […]
Today on your 10th birthday, I can’t help but think of all the things you’ve overcome and how much you’ve accomplished over the years. Looking back, I would have never thought you’d be where you are today. You’ve proved so many people wrong including top doctors at Children’s Hospital (I thank god every day the neurologist’s prognosis was wrong) and certain teachers saying you may never communicate through sign language. I would’ve never guessed that you’d almost be walking someday, signing as much as you are, and now just understanding more than we ever thought you could. Just the other day your little brother Bode said, “Birkley can do everything now!”
(As a typical child or adult, you don’t think of all the things/routines you do every day, like your routine going to bed… walking in your room, flipping on the light, opening your door to your bathroom, flipping on the light again, and walking over to brush your teeth, but for Birkley, this is huge!)
Birkley, close to your first birthday, we were told that you had Leukodystrophy, basically a deadly disease that affects the gray and white matter of your brain. We didn’t know if you’d be around to see the age of 2, 4 or even 6? Fortunately, they were wrong but your dad and I definitely went through some really hard emotional times. So now as you turn 10 and I reflect back on everything, I feel so grateful. Of course we know the road will be long and our life will be a lot different from others but we are such a strong family because of all we’ve been through and appreciate more in our daily life. The petty stuff doesn’t get to us and we value the little things.
Birkley, you may exhaust me almost daily, mentally and physically, but we love you tons. We are so so proud of you. You just keep kicking butt, just hopefully not your parents;)
Our first product review. I need to practice a ton more but hopefully can help some of you in the meantime. If you like, you can purchase here, ezpz Happy Mat – One-piece silicone placemat + plate (Blue)
So after probably 60 – 80 hours of researching and purchasing several options that didn’t work, I think I solved our bed issue for Birkley. I have been looking for a twin size crib solution but one that I could use at home and for traveling to local areas.
Birkley is 5 and was diagnosed with CMV. With that she has hearing loss, hypertonia, hypotonia, motor and developmental delay. Needless to say, we need a bed where she is contained and feels safe if kicks the sides, sits on her knees, stands, and whatever else she does in her bed. I also wanted to find something that we could use as her bed at home and her bed for when we want to travel (at least to drivable places). Birkley does a ton better in familiar spaces which I’m sure is like most special needs children. Living in Colorado, we are usually traveling to nearby mountain towns and every time we stay somewhere else, we usually get no sleep because Birkley has been up all night crying.
This idea is using the Summer Infant Custom Fit Gate, Grey. I bought two because you can connect them for when on the go, put it in a corner and put a couch, chair or something heavy next to it to keep it extra secure(can see an image through the link above). At home, I can just use one and mount the ends to the wall creating a rectangle with the gate and the wall. There is also a door that locks so your child can crawl in and out themselves if need.
My next step is to buy a thin, foldable twin size mattress so again, we can bring everything with us if we need. Plus I don’t want Birkley climbing over the side if the mattress is too thick.
I’ll keep you posted as to how this goes. Hoping to get the bed set up this weekend but will see. Hoping all goes well this time but have a feeling this will work.