Lucy's Journey with Hydrocephalus (among other things...): September 2016

Saturday, September 17, 2016

First Day of Preschool!

Ready for her first day of preschool!!

Excited, too!

Lucy started all day preschool this week! She is attending 3 days a week for just over 6 hours per day. It's pretty weird not having her around, since she's been with one of us, my mom or a nanny at our house since she got home from the hospital! Plus, I'm still on maternity leave with Ruby so I'm at home all day!!

To say she's a fan of preschool would be an understatement! She seems to really enjoy it and comes home with art projects, stories of her friends and teachers and even has been eating the school lunch! I sent a nicely chopped and easy to eat lunch with her the first day and she didn't even eat it...so I guess we'll see how school lunch goes. The teachers, room helpers and school nurse all know about her TEF and narrow esophagus, so they are very helpful when she eats, helping her cut things and reminding her to take frequent drink breaks. We always send snacks in her backpack in case the food provided isn't something she can eat.

They have a rest time after lunch,which I was a little concerned about since she hasn't napped since she was just over 3 (she'll literally stay up until 11 or 12 if she naps on a regular basis!). However, she says she just "rests" quietly and it's fine. I suspect she may be falling asleep based on how peppy she is at 8:30 pm at home...and my suspicions were seemingly confirmed when she got an award for being a good sleeper during rest time all week...Hhmmmmm.

To see her bounce back so quickly from her last dilatation has been awesome...what a trooper! Thanks for the continued prayers and interest in Lucy's journey!

"Dad - is this high enough???"

Enough pictures!

Wednesday, September 14, 2016

Esophagus Dilitation #24

Just a quick note to let you know that Lucy's dilatation on Thursday went well.

Her GI doctor said while the esophagus continues to grow together, he can tell it is at a much slower rate and was more open than last time (in December). We are planning to go down to yearly "maintenance" so don't have to repeat until next August - woo hoo!

The coming out of anesthesia part was AWFUL! She had a lot of trouble keeping her oxygen levels up, so ended up getting re-sedated, lots of oxygen and an EPI Nebulizer. When we finally got to see her, she was still sleeping for another 2 hours and we were otld she may need to stay overnight...however, in true Lucy form, when she was fully awake, she pepped right up, asked for a Popsicle and was ready to head home. What a champ!! It was a long day away from baby Ruby, but she was well cared for by my parents while we were away - Thanks so much!!

No pics this week - I prefer photos of Lucy happy and playing, like her normal self, not sad and sleepy. :(

This week started all day preschool Monday, Wednesday and Friday for Miss Lucy...what a big girl!!!

Wednesday, September 7, 2016

August + State Fair

Found Grandpa's Ice Cream Truck at the local Farmer's Market!

August has come and gone! Whew...where do the days go? Jason spent a good portion of the month in Rio at the Olympics, so me and the girls spent lots of time together and had some special visitors to help out mommy!

We are gearing up for Lucy to start Preschool next week - she's going 3 days a week ALL DAY, so 9:40 to 4:10...I can't believe it! Our neighbor has a little boy in kindergarten and when I see the kindergarten bus come and pick him up, I can't believe that it will be here turn next year already!

Lucy has another esophagus dilatation this week, so prayers welcome that it goes well and that the docs find her esophagus growth slowing down finally! Otherwise she's doing good from a health perspective and is proving to be a very doting, protective big sister!

I'll update after her dilatation with the results! In the meantime, here are some pics from August: