January is a busy time to everyone, but at our house, instead of cleaning, organizing and starting new resolutions, it's just a big continuation of the holiday party.
Lyla is very into cooking and baking and still likes sitting on the counter to help me with everything from chopping to stirring while we work. I remember holding her in teh baby bjorn making cookies and now she's helping measure, stir and read lists of ingredients. She can even crack eggs without getting any shells in the bowl!
Masud likes to spoil Lyla all month with birthday gifts and this year in addition to an awesome art set, gingerbread house, and candy, he also got her a VTech Innotab that she calls her iPad. She LOVES it and is very proud to have her own tablet. I wasn't sure she would like it, but Daddy knows best.
It's fun to watch them play together. Lyla chose a game called "Stupendous Dentist" and had fun showing Masud how to take care of his teeth. These two really are peas in a pod and I love watching them hang out together. Recently Lyla has taken to sitting on Masud's lap to watch TV shows. She likes to snuggle with Daddy whenever she gets the chance.
January is also birthday month! Lyla's buddy Brady's birthday is just a couple weeks before hers so we always have back to back parties. Brady hosted a group at Rainbow Play Systems this year and Lyla had a great time running around the play structures with all of her best friends. These kids are all so awesome -- individually and as a group!
I was SO proud of Lyla on the playgrounds. She was climbing, sliding, and even doing money bars like a champ. She also jumped on the trampoline all by herself without falling down!! I know this seems normal to many moms, but for me, it was super super cool to watch. Lyla has gained so much confidence in her physical abilities and loves ot adventure out on her own and try new challenges. There were several times when I turned around to say -- hey?! where's my kid?! -- only to find her half way up a ten foot ladder climing to the slide. Yep, she's quadriplegic and still manages to climb huge ladders to the slide. All of her hard work has paid of BIGTIME and seeing her enjoy this physical play with her friends is a true blessing.
We had a visit with Kathy a couple weeks ago for an OT eval. When I told Kathy Lyla was dressing herself, getting her coat on and zipped and writing her name she asked why we're even coming to OT! I was very proud to tell her about Lyla's accomplishments and so was Lyla.
Since Lyla is almost 5, Kathy did some formalized testing, not about cognition, but more structured fine motor and sensory tasks. It was interesting to watch Lyla do a blindfolded test where she had to feel objects Kathy put in her hand and then say what it was. She rocked it out with Righty getting all of the objects correct. With Lefty, she failed miserably (which she didn't know because, as usual, Kathy was very encouraging and told her she did a great job). Clearly, even though she isn't neglecting her Lefty anymore she's still got some connections to make between her brain and her hand.
Kathy also tested Lyla's writing skills and grip and pinch strength. She said Lyla would have passed the younger test with flying colors, so it's time to advance a little bit. I can't believe she's been in therapy for almost 3 years already!
We had an appointment with Dr. Gormley last week and he said she looks good. He suggested we follow up with urology again just to make sure Lyla doesn't have any bladder issues (which I really don't think she does, but better safe than sorry). He thinks the tethers on her braces are a good idea and said he doesn't think we need to recast them unless she grows out of them.
They did an Xray of her hip and it hasn't changed since last time. He said it's still a little bit out of the socket, but not too far, and it seems to be rubbing in the right places, so Lyla shouldn't have any pain or other issues. He said because she's walking so mcuh and has become more active her body is staying on track and not having some of the issues it might if she were spending more time on the floor or in her chair.
I always like seeing him because a) he's a VERY well known and reputable doctor and b) he was there in the beginning when Lyla's legs were toothpicks and she could hardly hold up her head much less run and jump around the clinic. We'll follow up with Dr. Kiesling next month to keep a close eye on Lyla and how her chemo affects her body. Right now, she's pretty loose and enjoys the freedom that affords her, but it's definitely a balancing act to make sure she's safe and steady (notice the nasty bruise on her face in the birthday party pictures).
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