Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

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!

 

Happy Halloween! October 31, 2011

Filed under: Photo/video updates — Aimee @ 10:30 pm

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Constraint-induced movement therapy October 18, 2011

Filed under: Lila,Milestones,Photo/video updates — Aimee @ 9:28 pm

Shortly after Lila’s first birthday we learned she was approved for arm constraint-induced movement therapy. We were thrilled that our insurance company agreed to cover the therapy and I don’t even want to know the cost.

Constraint therapy involves restraining the unaffected arm to promote use of the affected arm. In Lila’s case, her good arm (the left) will be hard cast for six weeks while she undergoes intensive physical therapy for six hours each day. She will have to learn to move, play and feed herself with her right arm/hand. She has quite a bit of use of her right already, but it’s much harder for her to use and 95 percent of the time she opts to use the left.

I know, I know. This all sounds cruel for a baby to endure, but our therapists tell us that children get used to the casting relatively quickly and the results make it all worth it. As a result of engaging in repetitive exercises with the affected limb, the brain grows new neural pathways. This is what we are hoping for with Lila.

We start the program in January. I thought it was best to start after the holidays when Lila’s a bit older and we have less busy schedules. The therapy program will be much like daycare in the sense that we will drop her off and pick her up five days a week. She will take her naps there, eat her meals, everything. When she wakes up in the morning, we are supposed to change her diaper and bring her straight to therapy for her first activities of the day, which will include breakfast and getting dressed. This will be incredibly difficult, because I’ve never been away from Lila so much in one week. I may spend a few hours a day at the clinic with her as long as I’m not a distraction.

I will document her progress right here. As of October 14, one month after her first birthday, her arm is already stronger than it was when she was evaluated for the program. In the video below, Lila plays with a Samsung tablet and shows off her new skills. Even lifting her right arm above her chest is reason to celebrate.

 

12-months old: a sneak peak October 12, 2011

Filed under: Lila,Photo/video updates — Aimee @ 8:46 am