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.

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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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Therapy Week 1 January 14, 2012

Filed under: Constraint therapy,Lila — Aimee @ 10:25 am

Lila is adjusting to therapy and the cast quite well. Better than I anticipated, actually. We are seeing some improvement with right-hand use, such as reaching for toys, feeding herself with a spoon, etc. We are getting the hang of bathing and dressing Lila with the cast and she seems like her happy old self, although more tired.

It’s been a busy week and I miss seeing my little girl. I guess this is what it feels like to have a child in full-time daycare. I don’t like it so much. By the time we get home it’s close to 5 p.m. and time for dinner, then a bath, some cuddle time, then a bottle and bed by 7 p.m. I had Friday off from work so I thought I’d try to spend a few hours at therapy with Lila, but she was a little clingy and acted like she wanted to be held by me instead of play with Jayne.

This isn’t normal behavior for Lila, so I suspected she wasn’t feeling well and perhaps even had an ear infection. Whenever she’s had an ear infection before, she’s been crabby, sleeps poorly and has weak head control, tilting to one side. These are all things she was showing, so I thought I’d better get her ears checked out. The goal of the constraint program at Children’s is to complete six hours of therapy for 21 days and they try really hard to stick to it. So rather than taking Lila to her regular pediatrician, which is 30 minutes away, I called around and found an opening just down the street. Turns out the ears were fine and we were back in less than an hour. Better safe than sorry. Maybe it’s teething? I’m glad her ears are good, but her weak head control is puzzling. She’s great most of the time, but every now and then she’s had trouble holding her head up nice and straight and we’ve never been able to figure out why or what causes it. It has lasted for a few days to a few weeks and throws her off in every way. We hope it’s corrected soon, because I believe it will impact the amount of progress she can make.

After the doctor appointment, I brought Lila back to therapy and again, she whimpered when I set her down. She looked at me as if to say, “Take me with you!” This is definitely a new stage for her. As much as I wanted to stay with her, I knew it was best to go and let her do the work she was there to do without the distraction of mommy being in the room. There is an observation room, so I’ll hang out in there occasionally.

The view from the observation room. Lila uses on iPad to work on reaching and playing with her right hand.

Lila is eating really well, and drinking good, too. She’s on a medication to increase her appetite and that seems to be working. After months and months of encouragement and money spent on 15 fancy “sippy cups” to get her to drink milk from a cup, we have finally landed on good solution: a regular open cup. She does have one cup with a straw and handles that we continue to encourage her to drink from, but she drinks best and gets the most volume from a regular ‘ol-fashioned cup!

Marketing gimmick or gullible mom?

Lila is back at therapy again today. The first week includes Saturday, but from now on she will have the whole weekend off. Tyler is in Duluth for work, so I’m at home with the dogs. The house is eerily quiet and I’m not quite sure what to do with myself. The chores have been done, the refrigerator is full and I have zero money to blow at the mall, so what’s a girl to do? I’ve been up since 5:30 a.m. so I think I’ll take a nap first.

 

Therapy Day 1 January 9, 2012

Filed under: Constraint therapy,Lila — Aimee @ 8:53 pm

Day 1 is over and what a huge relief. We are all EXHAUSTED and happy to be home after a full day at the clinic.

Lila did not sleep well last night, so nobody did. Usually she’s a great sleeper so I hope this doesn’t signal an ear infection or something of that nature. We’ve started waking her up at 7 a.m. when she’d prefer to sleep until 8 or 8:30, so that didn’t help matters either. We have to leave the house by 7:30 a.m. to get to the clinic by our 8 a.m. start time. As instructed, we gave Lila some milk, changed her diaper and loaded her in the car still in her PJ’s (getting dressed/undressed is all part of the therapy process).

We arrived and met our therapist Jayne. She gave us a tour and showed us where Lila will be napping, playing, etc. Tyler set up the pack and play in an empty back office room while Jayne did an initial assessment of Lila to see where her skills are. She video taped a portion so that she can compare Lila’s progress at the end of the four weeks. Lila had the same assessment four months ago when she was being considered for the program and it was incredible to see all of the things that she could do now that she couldn’t back then.

The morning nap went off without a hitch and then it was time for the casting. Lila was none too happy to have her good arm restrained while the therapists wrapped it in the casting material. We tried our best to distract her, but she eventually broke down in tears. They were able to finish the casting while I held her.

The rest of the day was spent doing lots of physical and occupational therapy. It’s really playtime disguised as therapy, but there’s A LOT of repetition. Throw the ball to daddy again and again and again. That repetitiveness is what creates the new pathways in her brain (we hope). Lila’s second nap (with the cast on) was a little more difficult.

I’m glad the casting is done and I feel a weight lifted knowing that Lila is truly in the best hands she can be right now. Jayne is wonderful and we really like her a lot. She is going to be spending a lot of time with Lila and us, so it’s truly a bonus that we like her as much as we do.

Once home, Lila was a little quieter than normal. A little more somber. She’s tired and probably a little frustrated that she has a big ‘ol cast on her hand. For the first time she tried feeding herself with her right hand. It was really difficult for her, but she was able to get a few bites in. It took her a little longer than usual to fall asleep tonight and I suspect we’ll be up a few times in the middle of the night. With the cast on, Lila can’t roll around in her bed and grab her pacifier as easily as she’s used to.

Both Tyler and I have to work tomorrow and won’t be able to spend the day with Lila. Tyler will drop her off in the morning as I’ll be at work by 7 a.m. I will pick her up at 4 p.m. I am working an extra day every week this month to make up for the time that I’ll be leaving early to pick Lila up.

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Welcome to therapy

Filed under: Constraint therapy,Lila — Aimee @ 11:01 am

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Welcome to your first day of therapy. This letter, which you will no doubt sign, holds you responsible for nearly $20k should your insurance company decide to not cover the expense. Even though said insurance company has already given prior authorization for therapy, sometimes they change their minds. They are pretty much allowed to do whatever they want even though you pay a lot of money for “coverage.” If a $20k bill does indeed come your way, the probability of bankruptcy and financial distress will be uber worth it considering the best possible chance you are giving that cute lil bug.

Yours truly,
Children’s Hospitals & Clinics of MN

 

Ready. Set. GO!!!!!!!! January 8, 2012

Filed under: Constraint therapy,Lila — Aimee @ 9:32 pm

All dressed up to see Santa Claus

Aaaaannnddddd ….. weeee’rrrreeee ….. baaaaacccckkkkk!!!!!

Hi everyone! Let’s just pretend that little lapse in posts these past few months never happened. OK? I hope everyone made it happily and safely through the holidays and into 2012. We had a bit of a rough end to 2011 but 2012 seems like it might have intentions to be a little nicer to us. Fingers crossed!

Lila is now almost 16 months old and is the happiest little gal on the block as far as I’m concerned. There’s so much to share with you all, so perhaps an abbreviated roundup will do for now. The BIG news is that Lila begins four weeks of intensive arm constraint induced movement therapy tomorrow! Yeah, it’s a mouthful isn’t it?! More on that later…

1. Weight problems. We had some weight gain issues (read: NOT gaining) for a few months and she even lost weight at one point while she was fighting off a cold and a series of ear infections. She was prescribed a medication to increase her appetite so we’re going to try that for a few more weeks and see if it makes a difference. I hate to have her on unnecessary medications, but we need this little one to gain some weight! At the last check she weighed 18 lbs. 3 oz. Lila likes to eat, but she doesn’t seem to eat enough. Her increased muscle tone requires her to have more calories in her diet than the average baby. If you are reading this and are having similar feeding issues with your child, leave a comment and I will get in touch with you. I have plenty of tips and tricks to increase calories.

2. Diagnosis. We finally received the official diagnosis of cerebral palsy a few weeks ago. It came from two different doctors in the same week. I handled the news really great, well … because it wasn’t news. We’ve always known it. We’ve always said it. Now it’s just “official” in her medical records.

3. Talking! I have been nervous about Lila’s speech for quite some time. Some CP kids are non-verbal. Some are very delayed. Lila was a pretty quiet baby comparably speaking and it’s sort of been the elephant in the room. I worried. Tyler didn’t. Finally someone with Lila’s early intervention program suggested we have a consultation with a speech therapist. Great. Another therapist. Another appointment. Lo and behold a week later Lila started “chatting” up a storm and this clever little girl even said her first words this weekend. First word: HI! Not surprised about that one. Our social butterfly! Second words (maybe): All done! And her third word (for sure): Mama! This is all a HUGE deal in this house and believe me, we have been celebrating!

4. Getting smart. All of a sudden, Lila just gets it! She gives kisses, high-fives, plays paddy-cake, claps, brushes her hair, feeds herself with a spoon, holds her own cup, points to her nose, waves hi and bye bye, shares her food and toys with others. She’s pretty much off the cuteness Richter scale these days.

5. Sitting up. Not quite, but I’m counting it anyway! She’s getting so close. She can sit without help for 30 seconds or so.

6. Constraint therapy. I’ll be updating the blog more often to include lots of information about the therapy program that Lila starts this week. She will be getting a hard cast on her dominant arm and will spend eight hours a day with a physical therapist to re-learn all the skills that she’s already mastered with her dominant arm. She will engage in repetitive exercises with her affected arm, and hopefully her brain will grow new neural pathways. This is going to be no easy feat, but we are so excited to see her progress. Naturally, I want to share that with you, so stay tuned!