Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

Lila’s room August 11, 2011

Filed under: Lila,Photo/video updates — Aimee @ 11:05 pm

Here are a few pics of Lila’s bedroom. Because she has full-length mirrors, I decided to set up an area for play/therapy. We really like the setup and she does, too. I looked high and low for foam tiles to put on the floor. There are a lot of cute ones out there with letters that pop out, by Lila’s PT warned against those. She said they don’t hold up well. I ended up finding black tiles in the fitness section at Target and so far, I am happy. They are easy to clean. Setting up Lila’s room has been one of the most rewarding and happy times for me. She doesn’t know the difference, but it fills my soul to be able to create for her what I envisioned during my pregnancy.

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First Lake Swim

Filed under: Photo/video updates — Aimee @ 12:17 am

Here’s Lila enjoying a northern Minnesota lake with her cousins last month.

 

16 pounds of awesomeness August 6, 2011

Filed under: Lila — Aimee @ 12:38 am

I should be sleeping, but I had a happy day, so I wanted to bless you all with some of my positivity! Nothing in particular made the day a great one, I was just in one of my zones, was somewhat productive and even mopped the kitchen floor before getting into bed. Lila was extra cute and we even shared a two-hour nap together.

A few updates on our sweet BUG:
-She swam in her first Minnesota Lake — Grace Lake in Bemidji, MN — with her cousins Kaleb and Jenna, and loved it. Then she fell asleep beneath a tree on the sand.
-She got a new physical therapy area set up in her room (pictures coming later).
-She’s rolling around on the floor like crazy. Put something across the room and she’ll get to it simply by rolling in one direction. Problem-solver I tell you!
-She has developed a distaste for formula and a preference for blueberries, toast and cheese. None of us will be sad when the bottle goes away.
-Learning to suck from a straw is pretty fun and yummy … unless it’s formula.
-With no trees in the yard, we’ve been forced to get creative with Lila’s first swing. The garage is the new hangout and swinging shall be granted every day.
-No crawling or sitting yet. It’s tough to get around when you’re filled with 16 pounds of awesomeness.

We also recently saw a neurologist who would like Lila to have an MRI of her head and neck. Her head tilt keeps coming and going, and alternating sides. Everyone’s a bit perplexed. We’re hoping to rule out any problems in her spine. The head scan will show in detail the extent of Lila’s brain injury. We will be able to see if the part of the brain that affects her right hand is injured or not. I’m guessing it is, and of course cautiously optimistic about the whole thing, but this one really scares me folks. Lila will need to be sedated for two hours. I first received anesthesia when I was 26 and got my wisdom teeth out. I’m worried about the whole thing, but I know it will give us information we need so that we can decide how to best proceed with therapy.

One type of therapy program we’re looking into is an intensive arm/hand restrain program at Children’s. Fancy term is constraint-induced movement therapy. They would cast her left (dominant) arm and hand so that she’d be forced to use her right. Sounds frustrating and cruel, but there are some really positive studies about the effectiveness. The program is 6 weeks long and includes 6 hours daily of intensive therapy. We haven’t decided to do this, but we are strongly leaning that way. We’ll make our decision after her MRI, which is Sept. 23.

xoxo
Aimee