We had a wonderful day celebrating Lily’s birthday! We decided to go to the Hershey Gardens and it was beautiful. It was a little windy when we first got there, but it subsided as the day went on. It was so peaceful there. 

Before we got there, we had read on the garden’s website that the butterfly house would not be opening for the season until this Friday. As we were walking by the house, we were saying to Lily  that we’d come back in the summer when it was open. Just as I was saying that, one of the butterfly house workers heard me and said, “I can let you in today if you want.” Of course we said yes! So we got to go inside and spend some time with the butterflies! Some workers happened to be opening a box of newly arrived butterflies and were releasing them into the house. One of them, John, put a few on Lily! It was so amazing! I think most of us very rarely get to see a butterfly close up and while it’s being still, but WOW are they just gorgeous creatures! The detail, color, and patterns on each one are just breathtaking and I was thinking that this had to have been created by God. The workers were so kind and sweet to Lily–we were truly touched. It made the day even more special. We loved it there so much that we bought a family membership so we can go back again during different seasons and see more flowers in bloom. 

After we left the garden we went to Red Robin for lunch. We were getting ready to pay the check and the server told us that someone else had already paid for our lunch! I’m just overwhelmed at the kindness that we were shown today–it made our girl’s birthday as perfect as it could be.

We came home and ended the day with cupcakes and ice cream. Yes, Lily had a taste! She is now sleeping like a rock after such a busy day.

Thank you for all of your prayers and birthday wishes for Lily today!  

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We loved this butterfly bench! I want one for our house!

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A pic in a lovely gazebo.

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Lily with some of the butterflies the butterfly house employees put on her. It was just amazing.

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Todd was rolling her over a piano-type instrument on the ground.

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Todd and Lily under the branches of a large tree.

Tomorrow (May 20) is our sweet girl’s 11th birthday! I can’t believe she’s 11 now. Todd and I have both taken the day off work to take her on another birthday adventure! As of now, we still haven’t decided where we should go. We’re torn between Longwood Gardens (where we took her last year) and taking her to a waterside picnic somewhere. You guys should vote in the comments! 🙂

I have really felt led to ask for your prayers for Lily recently. I know that many of you do pray for her often and we are so grateful. I just feel like she needs a lot of concentrated prayer right now, and tomorrow would be a perfect day for that. So, if you could take a moment out of your day to pray on her behalf, we would be so grateful. Pray for the continued healing of her brain, gastro issues, spasms, muscle tone, and seizures. We are not giving up on the hope of breakthroughs and progress that are still to come.

We will be sure to post some pictures of our birthday adventures tomorrow–wherever we end up!

Much love!

 

Today we finally had our visit with Dr. Devenyi, a pediatric gastroenterologist in Lancaster. He was highly recommended and lived up to his reputation for being kind, knowledgeable, and insightful. He was fantastic. He had a few suggestions for us to help improve Lily’s gastro functions. We’re going to try adding psyllium fiber to her flushes to see if that helps keep things moving. 😉 Lily is also having an upper GI study done next Friday. Dr. Devenyi also explained that she could possibly have had a slight shift in the blood vessels that are behind the intestinal area, and that can also lead to reflux because of the compression of that area. This may have happened as a result of the spinal fusion surgery, which he said is not common but does happen sometimes when the spine is repositioned. I am sure I am not explaining all of this very well, but I think that’s kinda sorta what he said. 🙂  She may also have to have an endoscopy if they think she has any esophageal damage due to the reflux, but that will depend on the results of the upper GI study. We will go back to see him in six weeks to see if things are getting better by using the psyllium and then make any changes at that time.

It is such a relief to at least have a start on solutions to this issue! Poor Lily has been dealing with this for so long now and I hope this protocol will bring some relief.

I would like to say Happy Nurses’ Week to all of the awesome nurses out there! We have been blessed to have many amazing nurses for Lily over the past four years and we are very grateful for all of you. We would not be able to have jobs, sleep, or do pretty much anything else without our home nurses. They take such good care of Lily and do other things like do Lily’s laundry (and even fold ours if needed). We are extremely grateful for all of you and everything you do every day!

Here are a few recent photos of the Lilster!

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Snuggling on the sofa bed for movie night!   Taking a walk in the park on a beautiful day!

 

Thank you all for your continued support and prayers. We love you!