Long time, no blog

Hello Love for Lily fans! I know it’s been ages since our last post. We’ve had a lot going on for the past few months, and I thought it was time for an update on life with Lily.

We recently moved into a beautiful new home in Lancaster and we really love it here. It’s an updated rancher, so all the main living spaces are on one floor. Lily now has her own room and bathroom, so she has privacy but we are close enough in the living room that we can hear what’s going on in her room. I’m busy trying to make it into a functional space but one that a teenager would like also. 🙂 We’ve also had three contractors come out and look at the bathroom so we can do a tub modification. Right now, there is a regular tub and shower in Lily’s bathroom. We want to have it converted into a roll-in shower so we can bathe her in there instead of her always getting a bath in bed. We will be able to do this through a grant through Lancaster County BH/DS. Hopefully, it won’t take too long for the funds to come through so the work can begin (but you know how things always go with the PA state budget).

One of the main reasons we moved is so Lily could have her own bedroom and bathroom and this house was just perfect. We had been looking for several weeks after our other house had a contract on it, and we just could not find anything that met our needs. Finally, this house came on the market during the very last extension our buyers had given us. I knew it was the right house for us as soon as I saw the pictures. We couldn’t wait to go look at it. Once we did, we were very anxious to put in an offer. Our realtor advised us to write a letter to the sellers to tell them about our situation and how perfect this house would be for us. It must have worked, because they had two other offers on the house also but chose ours. 🙂 We were so happy! The house also has two other bedrooms on the main floor, and Bryce’s room is upstairs in the finished part of the attic area, so he has his own space. It also has a finished basement and a large unfinished area. This house had exactly everything we wanted. I still say that God does not overlook any small detail because He led us to a house that is perfect for us in every way. I also feel a sense of peace here and I can’t really explain it. Whatever it is, we are very happy here!

July was a pretty crazy month for us. I went to Chicago for work for a week, then we moved, then I went to Chicago again the very next week. At the same time, Bryce had his wisdom teeth out, and Lily had several appointments. First, she had a follow up appointment with gastroenterology to see how things were going with her feedings, reflux, and other gastro related issues. 😉 Things seemed to be fine so nothing new to report from that appointment. Next, she had an appointment with a pediatric ENT specialist at Johns Hopkins. We wanted her to go there because they provide excellent care, and we needed another opinion on her coughing issue. Our current pulmonologist had basically told us that he thought Lily would need a trache, which we absolutely do not want to do. A trache would require 100% 24/7 care for Lily. Todd and I thought this was an extreme step to take, so this is why we sought another opinion at Hopkins. This ENT recommended a CPAP machine to help Lily with breathing overnight. This is a much less extreme measure, but it required going back to the pulmonologist here in Lancaster for him to order the machine. This also requires another sleep study (which will be happening in September) so they can test the machine’s levels and see how Lily does with it. We hope it will help her breathe easier overnight and give her a chance to sleep more soundly.

Also, HOW is it possible that Bryce is getting ready to start his SENIOR year of high school! How did this happen?? I am in denial that we have reached this stage of life. 😉

So, I think that’s it from here for now. I just want to take this time to once again thank EVERYONE who helped us pack, clean, and move. We really could not have done it without each and every one of you! We are so grateful for all of you! And, as always, thank you for your continued prayer and support of Lily and our whole family.

Much love from Todd, Melissa, Bryce and Lily




2 replies on “Long time, no blog”

Very Beautiful! Happy ? Home, Happy Life!
Hope the machine helps Lily!
I was told many years ago Steph would need a trach too!
Now her doctor took her off of all her Asthma meds. She said there not needed!
Maybe a hospital bed would help with positioning and that may ease Lily’s breathing too!
Donna & Steph??

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