Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

Why I fired my kid’s therapists August 28, 2013

Filed under: Constraint therapy,Lila,Sunny days — Aimee @ 11:06 pm

Ok, that’s a lie.

Nobody’s been fired, but after some very deep soul-searching and many conversations with her top cheerleaders, I decided to pull Lila out of therapy for the next 30 days. Yep, even her beloved horse therapy. She/we have had a busy summer and soon she will turn 3. The next round of constraint therapy begins Sept. 30. Then preschool starts. Wow, that’s a lot. So I made a very conscious decision to give Lila (and us) a much needed and deserved break. For the next 30 days, Lila will be trading therapy and clinic time for visits to the zoo, water park, Dairy Queen, museum … well, you get the picture. Somewhere  during that time we’ll throw in a flamingo-themed birthday bash for good measure.

As much fun as all of that sounds, it wasn’t an easy decision to make. When  you have a child with developmental delays, you feel like your best is never enough. “I should encourage her to use her right hand more.” “Lila should spend more time weight-bearing and less time in her chair.” “I should get up before Lila to clean the house so I don’t have to do it while she’s awake.” “I should explore more alternative therapies.” Those thoughts — and the guilt — fade away over time. But they never completely go away.

There came a time when I started to feel more “normal” in a clinic or hospital setting than I did out in the real world. No explaining to do. No telling Lila that she can’t jump in the bouncy house with the other kids, or leaving social functions early because my back can’t handle the constant “walking” Lila insists on doing to keep up with the other kids. (God, I love her for that, but ouch, my back.)

Therapists, as well-intended as they are (and we have some of the best), don’t always know what a day in the life of Lila is like. So when they suggest this therapy or that piece of equipment, my heart sinks and my mind races: “How can I juggle the schedule to fit in one more appointment? Where can I trim the family budget to allow for one more thing that our wonderful health insurance doesn’t pay for?” *bangs head on table * hugs my kid * guilt * repeat

I’m at peace with my decision after experiencing a therapy-free life the past week. Mornings are fun and fancy-free. There’s time to drink of cup of coffee while we make waffles (Lila stirs the batter and even uses her right hand). She says hi to everyone at the local waterpark with her Dad. She shocks everyone by getting the hang of this potty training thing. She meets her preschool teacher and checks out her locker … her very own locker! She stays up later because I can’t resist “Mommy, play with me?” coming from those sweet little lips and those big blue eyes.  She samples new fare at Costco where we practice sitting in the cart while holding on with two hands.

You see, therapy is everywhere. Sometimes you just need a break to see it.





At-home constraint therapy April 18, 2013

Filed under: Constraint therapy,Lila — Aimee @ 1:06 pm

Today was another step in helping Lila become a stronger, more independent little girl. One of Lila’s biggest challenges is having limited use of her right arm and hand. The area of her brain that controls movements to the upper right side of her body doesn’t send the right signals to her muscles. Having limited use of her arm keeps Lila from sitting independently and crawling (because she doesn’t want to bear weight on her arm). Lila can open her fingers to hold onto certain things, but extending her arm to reach is very difficult.

After Lila completed constraint therapy last February, she had much greater use of her right. But almost as soon as the cast came off, Lila reverted to her old ways. In her 18-month-old mind, I imagined her thinking, “My left side is so functional and easy to use, so why bother with the right?”

For more than a year, Lila’s therapists, orthotist and myself have been putting our heads together to come up with some kind of removable casting system that would allow us to constrain her left arm during the day to encourage her to use her right arm. We tried a traditional soft cast that was cut up the side, but it was cumbersome and difficult to put on. I even considered making my own cast system out of those foam noodles that kids use in the pool.

Finally, Lila’s orthotist, Scott, decided to try something new. We gave him the go-ahead, even though we knew there was a chance insurance wouldn’t cover this “new” contraption. Scott took a mold of Lila’s arm and we let her pick out the purple color and fancy butterfly design. I wasn’t sure what this would look like, or how Lila would respond to it.

We went to Scott’s office today and tried on the cast for the first time. The material is the same plastic that is used for Lila’s leg braces. There are two pieces that are held together with velcro and a few holes in the hand for air circulation. Lila was not happy putting the cast on, but once she got used to it and added her own creative touch with a pony sticker, all was ok.

I’m not sure how much Lila will wear the cast, but we’ll start out slow and learn as we go, as with everything else we do. I am just grateful that we have a team of medical professionals who is creative and active in figuring out how to help Lila be her very best. Now we cross our fingers and hope that insurance is on our side.

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EEG results October 26, 2012

Filed under: Lila,Updates — Aimee @ 9:54 am

Lila completed her EEG last week and the results were not what I hoped for. While she did not have a seizure during the test, it did show abnormal brain patterns reflecting the potential for seizure activity. While medication may be necessary, I decided to hold off on that until we are sure her seizure wasn’t isolated. That means if she has another seizure, she will start anti-seizure medication right away.

For two weeks now I’ve been a nervous wreck. I can’t take my eyes off of her and I’m analyzing every move and facial expression she makes. If she makes a funny face, I brace myself. The rearview mirror has been stuck in a position where I can keep an eye on her in the car seat. Probably not the safest course of action … I wish I had eyes in the back of my head.

The good news is that she has been seizure-free for two weeks and has been her happy joyful self. She’s bursting with new vocabulary and while she still hasn’t formed full sentences, she’s starting to put more two-word combinations together and use words to communicate what she needs and wants: help, up, down, more, etc. Her voice is so sweet.

Please keep Lila in your thoughts and prayers as I am CERTAIN the energy you all have put into the universe is keeping her (and me) on a path to success. xoxo







Hello, it’s me again October 12, 2012

Filed under: Lila,Updates — Aimee @ 10:46 am

It has been a long time since I posted here. So much has changed in our lives over the past several months. I’d like to get back to blogging about Lila and her progress regularly. She’s such a shining star and I want to remember every moment.

Overall, Lila is doing quite well. She’s a healthy, happy 2 year-old with a smile that lights up the room and can turn the worst day around in a second.

Last night, however, something really scary happened however. Lila had a probable seizure. I say “probable” because there’s no way to know for sure at this point. Based on her medical history and what I described to the doctors, they believe it was a focal/tonic seizure. We were in Target, Lila was sitting in the cart, and she starting flailing uncontrollably. I grabbed her out of the cart and she fell limp into my arms and looked at me with a blank stare. I started running out of the store with her and about halfway out, she started laughing at me. Typical Lila. So if it was a seizure, it was short and I guess that’s a good thing. We have to follow up with a neurologist next week. If she has another episode, back to the emergency room we go and Lila will likely start anti-seizure medication. I’m a nervous wreck and can hardly take my eyes off of her.

When the seizure happened, I wasn’t entirely surprised. Freaked out, but not surprised. Many kids with cerebral palsy experience seizures and I’ve counted my blessings that Lila never did. I hope and pray that this was an isolated incident.

As of this morning, Lila is back to her normal, happy self. She’s chatting up a storm and has new words daily. My current favorite: bubbles. She’s obsessed with bubbles. She also loves Mr. Potato Head, so she likes to say “hat.” Man I love her. Thank you all for your continued thoughts and prayers for my Bug. We are so lucky!


Despite her surroundings, still smiling in typical Lila fashion.


This girl loves her berries February 1, 2012

Filed under: Photo/video updates — Aimee @ 8:57 am


Look who’s sitting! January 31, 2012

Filed under: Photo/video updates — Aimee @ 7:46 pm


Our fur baby had an accident January 14, 2012

Filed under: Uncategorized — Aimee @ 8:36 pm

This is Russell. He’s our 12-year-old miniature pinscher and he came in from outside today looking like this. We’re not sure how it happened, but his eye came out of its socket!!! He had surgery to put the eye back into place and he’s recovering now. Poor lil’ guy!

Poor lil' Russ!