Mid-April Update

This month has been busy busy busy. With Lyla back in school, going to therapy three times a week, and having a new bedtime routine, we've all been adjusting to more hustle and bustle in our already busy lives. 

We've spent a lot of time with Great Grandma lately, helping set up her garage sale, cleaning and visiting her new apartment. Lyla asks to visit her now and seems to enjoy the fact that Great Grandma now lives in an apartment like us. She likes to look for Grandma's number and was very concerned about when the cat, George, would be transferring from one place to the next. We visited Grandma last week after therapy to see her all settled in (we had only been there when it was empty before) and Lyla was happy to see that George was there too. She likes to play hide and seek, so she and Grandma hid in the closet over and over again while I found them.

Also in the past two weeks, we celebrated the end of the tax season! Lyla and I headed to the newly renovated McDonald's by our house for a tax day dinner. Masud is still working at H&R Block most nights, but he's home for dinner and to just hang out as a family, which is great. We work hard to make sure we get lots of family time right before and right after the season, but sometimes things get shaken up (like work travel and a hospital stay) and the stress gets to be too much. We're happy to get back to the fun stuff -- like going to the zoo!

It was a little chilly, but we headed to the MN zoo and renewed our membership. Lyla was excited to see the farm babies and her favorites, the monkeys and penguins. I'm not sure where she got the idea to climb way up and sit on the baby buffalo, but she and Masud sure had fun doing it!

Therapy has been going very well for Lyla and she's making great progress now that we understand her oxygen and CO2 exchange issues a little better. She has been working on sit to stand on one leg, stepping over things, walking on the balance beam and climbing stairs by herself. She loves to end every session with a trip on the adapted trike. I'm thinking we might want to head out to the bike expo next weekend and see if we can find a used one (they're pretty spendy). Writing on the mirror is her other favorite thing. Notice she wrote her name in the lower right hand corner in this pic. 

She does one land and one pool therapy a week. Her regular pool therapist is gone for a while, but she's been having a great time with Katie each week. She walks against the jets, swims, kicks, and stands on one leg. It's a great way for her to have fun and work on balance, strength and endurance. She loves riding in the hydraulic lift chair at the end of every session.

Last week, we had to get all new velcro on her AFOs since it wasn't sticking at all. The masking tape did the job for one day, but when I showed them that we REALLY needed the velcro fixed, our favorite orthotist Bill fixed them right away. He also put in little silicone spacers so the AFOs don't put holes in her socks. AND, he said he will make AFOs for Lyla's baby Danielle if we bring her in next week. How awesome is that?! I can't wait. He said Lyla can even help make the molds. Very cool. This is why we love Gillette!

 Lyla's been slowly adjusting to her CPAP mask. We got one right after the sleep study, but it didn't fit her right so we had PHS come out and find one that works better for her. She chose the Pixi model and has done very well adjusting to it. Wearing the mask wasn't a problem when the CPAP machine wasn't on, but once we had the machine running, it took her some time to get used to it. She has slowly worked up to longer and longer intervals and has even fallen asleep in the mask several nights in the past two weeks. After a couple stops and starts, she has now worn the mask, with the machine running the entire night for two nights in a row -- you go girl!! I tried it on myself to see what it was like and it was basically blowing air down my throat constantly. I'm SO proud of Lyla for wearing the mask and adjusting so easily!