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

 

 

 

Dear Love for Lily Fam,

I know new posts have been few and far between recently. Believe me when I say that we’ve been incredibly busy and when we are not busy, all we want to do is shut our brains off and have a bit of downtime. So, sorry for the lack of updates.

As you know, the 6th anniversary of Lily’s accident is February 24. My family and I really dread this time of year, with the cold, damp, gray days and although it is the shortest month, it seems like it will never end. Thank goodness for the warmer than usual weather over these past few days. This year, it has come hurtling toward me even though I’ve been swamped at work and at home. I still have times where I think if we had made different choices back then, maybe Lily’s accident wouldn’t have happened. We do blame ourselves for it and that will never change. However, life goes on and we have to pick up the pieces and keep moving, as inconceivable as that may seem sometimes.

I was going to share a very different post from this one, but I am choosing not to dwell in anger, bitterness, and grief, even though those are emotions I feel welling up at any given moment. But, I do want to share a quote from the mother of a young boy who has a brain injury also:
“In some instances time does not heal. Instead life continues on, acting merely as a distraction. The grief remains, as raw and sorrowful as it once was. Sometimes it bubbles up and hits when you least expect it but it’s also there when you do, like today.”

I am going to choose, in this post, to be grateful and thank everyone who has supported us along the way.
Thank you to our friends and family who were there with us during those darkest hours and days when we didn’t know what was going to happen. You spent many sleepless nights with us in the hospital and sacrificed time at your own jobs and with your own families to support us.

Thank you to those who came and prayed over Lily, brought food, gifts, and monetary donations. Many of you were strangers and yet you took the time and thought to support our family.

Thank you to those who have cleaned our house, made us meals, visited us, helped with home improvement projects and continued to donate to us over these past 6 years.

Thank you to those who still remember Lily and my family in your prayers.

Thank you to all of the nurses we have had over these past six years. You’ve seen the good, the bad, and the ugly of the realities of our daily lives. You know we are not perfect parents or people. We could not live the rest of our lives–going to work, sleeping, running errands, or just doing some fun things (sometimes)–without your presence. And I want to give special recognition to Robin, our main dayshift nurse, who really loves Lily, cares for her well, advocates for her, and knows her inside and out. She is a treasure and we are truly grateful for everything she does.

Thank you to those who are currently helping us with the home projects we need to complete in order to sell our home (and hopefully find a home that’s more suitable for our needs). We are so grateful for the many hours you’ve sacrificed to paint, install flooring, and fix broken things. We literally could not have done these things without all of you. Thank you. We’re praying and trusting that God has the perfect house for us at the exact time we will be ready for it.

I would personally like to thank my husband for being an amazing Dad to Lily and Bryce through all of this. I wish you could all see how much time and energy he puts into taking care of Lily. He is her Daddy and I know his heart is broken, too. I would also like to say that Bryce is an amazing, resilient young man who still struggles with all of this, too. We are so proud of him for all he has had to endure and overcome that most teenagers do not have to deal with every day.

I also thank God for all he has done and provided for us. I could not get up and live this life without His peace and strength which truly is beyond my understanding. I will continue to stand on that and trust Him, for I know he is constant and faithful to us.

Thank you again for continuing to support our family. We love you and are grateful beyond words. Please do not forget our Lily. She is our precious angel and her life matters. We strive every day to let her know how loved, needed, and precious she is. Every second we have with her is a gift. We know she is in there and can understand everything we say and do. I was at a meeting with her teacher recently, and she said she definitely notices Lily responding to things in her own way, and you can see it, too, if you pay attention. That meant the world to me and in fact, I am welling up as I type this because her teacher GETS IT and notices that Lily is trying to tell us things!

Thanks for reading and following our family. God bless all of you.

Lily has a routine rehab checkup today at Kennedy Krieger in Baltimore. We have a lot to talk about with the doctor. I’m not attending the appointment so I can be at work, but Todd (and our supernurse, Robin) have got it under control. 🙂 Your prayers would be appreciated!

We just wanted to say thank you for all of the kind words of support and encouragement today. Reading them really helped make the day a little easier. We also received some lovely flowers from Lisa McHenry, Alexis Dimm and Rudy Beck, and Phil and Heather Zellers. They are all gorgeous and really did brighten this dreary day! Thank you to everyone who took the time to share your thoughts today. We are so very grateful!

Much much love!
Todd, Melissa, Bryce, and Lily

I can’t believe I am even writing that tomorrow is five years since Lily’s accident. I don’t even know what to say this time. I always have so much on my heart and mind and it’s difficult to express most of the time. Mostly it’s, “I miss my girl. I miss our old life. I want things back the way they were before that afternoon. I want my son to not struggle with this. I want Lily and my whole family healed.”

I will keep it short this year, I think. Once again we’d like to thank everyone who has been following Lily’s story since the beginning, those of you who still pray and think about us. We’d like to thank those who are close to us who are there for us and just know what to do. We have awesome friends who are still friends despite the fact that we cannot always reciprocate, and for realizing we still struggle and need help. We’d like to thank the new people who have come into our lives since this has happened who have been a source of support for us (VCLC, WISH, and others). Todd and I are fortunate to have bosses and co-workers who are very flexible and understanding as we try our best to juggle work and home life. We are blessed with awesome, dedicated nurses who care for Lily as their own and help us out in countless ways that do NOT go unnoticed by us. We could not have jobs, or any other type of life activities without them.

I would personally like to thank my husband for being an amazing Dad to Lily and Bryce through all of this. I wish you could all see how much time and energy he puts into taking care of Lily. He is her Daddy and I know his heart is broken, too. I would also like to say that Bryce is an amazing, resilient young man who still struggles with all of this, too. We are so proud of him for all he has had to endure and overcome that most teenagers do not have to deal with every day.

So, please pray for our family. It’s been a difficult month overall for us for other reasons, too. I know February is the shortest month of the year, but this year it seems like it’s been here for an eternity and we cannot wait until it’s over and Spring is on the way.

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

 

I have some amazing news to share!! We were approved for the Easy Stand Glider today!!! We were on the second level grievance through United Health Care, which meant I had the option to participate in the conference call hearing about the denial. I had received a packet of the documentation of the claim review process to review before the call, which was scheduled for today. When I read the documents, I HIT THE ROOF. The documentation was shoddy, lazy, and incomplete, to say the least. SO MUCH WAS WRONG WITH IT!!

So, I went to work and highlighted all the errors and sloppiness, wrote notes, used tape flags–you name it–I was PREPARED FOR BATTLE. I was all pumped up like a player in the locker room before the Super Bowl. I was all, “IT’S ON LIKE DONKEY KONG!” I finally got the call this afternoon and the person who called me said, “the meeting is over–and the denial was overturned. Lily is getting the glider.” At first I said, “what did you say??” She repeated herself and I could not believe what I was hearing. I kept saying, “Are you kidding me??” She said, “no, it’s approved!!” I was beyond thrilled and ecstatic!!

So, I ended up not even having to talk to anyone or use any of the notes I had prepared. It was just approved!! I am still so thrilled and excited!

Thank you all for your support and prayers in our quest to get this for Lily. I honestly never thought the insurance would cover it, but I remember telling the vendor and Lily’s PT that I knew somehow God would provide this, whether it was through me fighting them, fundraising, or some other way. I never doubted God for a second because he is faithful!! I am grateful that he made me a little feisty for times like this!! Our Lily deserves the best and we will never stop fighting for her!!

ALSO, so many other good things have happened!! We recently received a Secret Santa gift from someone from our amazing church, Victory Church. This was a very generous gift and we are very grateful to you, whoever you are!! We also received an extremely generous gift from the employees and leadership of Utility Keystone Trailer Sales! Thank you to everyone who contributed to this and to the company for matching those donations.

We are just blown away by all of this. Thank you ALL for still caring and walking through this long road with us. It has been almost five years and I feel now more than ever that we are NOT alone. We all wish you a very Merry Christmas and many blessings in the New Year!!

On this Thanksgiving Eve, we just wanted to thank all of you again for all of the love, prayers, and support you have given us over these past 4 1/2 years. I will often be reminded of the many ways–large and small–that people have supported us and loved us. Please know that we are truly grateful for all of you! We have been very blessed with kindness and compassion and we appreciate it more than we can say. We hope you have a wonderful Thanksgiving!

Much love from Melissa, Todd, Bryce, and Lily


Great appointments Thursday in Baltimore! Dr. Sponseller said her “hardware” looks great and we don’t need to visit him again until next year! We also had a great visit with Dr. Suskauer at KKI. We’re going to try a new medicine in a couple of weeks that she’s hoping will increase Lily’s alertness. We have to wean her off one medicine first, and then hopefully by then she will have finally kicked this sinus infection/respiratory illness she’s had for a few weeks. Once we’ve accomplished that we can start the new medicine.

As we were leaving Baltimore, we saw a couple of streets blocked off by police cars and several police and detectives combing the area. This was on the exact route out of the city we usually take. Turns out there was a double shooting in that neighborhood just a bit earlier. I read that one of the victims died. It is so sad that this type of violence is so common there. I think this was the 267th murder there this year.

This is a picture of the pants that Lily wore that day! They say “never give up” and we certainly never will!

Thanks again for your thoughts and prayers for all of us. 💜💜💜Continue reading

Just a quick note to say we’re heading to Baltimore today for a 1-year checkup for Lily’s spinal fusion surgery. We will be at Johns Hopkins to see Dr. Sponseller, the surgeon, for that. Then we will head over to KKI for a visit with Lily’s rehab doctor, who has graciously agreed to squeeze her in since we’re already going to be there. Please pay for grace and peace for us all today. Thank you!

OK, so I know I owe you guys a HUGE update, because I’ve been a huge slacker lately! 🙂 Where to begin?

I think my last post was about Lily’s neurology appointment at KKI. Well, that turned out to be a bust because Lily’s previous neurologist went out on medical leave, so another neurologist was assigned to her case. This new doctor didn’t really know Lily’s history very well, and we had been hoping to get the results of the last EEG she had. Unfortunately, the new doctor hadn’t gotten the chance to read it, because *I had to MAIL it (yes, snail mail)* because the facility where we had it done in Lancaster told us they could not send it for us. Wha? It’s 2015!! Can’t we somehow transmit this? Anyway, I mailed it to KKI and somehow it never got to the neuro department. Sigh. So, this appointment was kind of a bust.

And here’s a shocker (sarcasm): the request for the Easy Stand Glider was denied by both Highmark and United Healthcare (our medical assistance), so we are appealing on both fronts. Again, it’s not really a surprise that it was denied, but as I have said, if they are going to say no, they are going to have to work for it. I am not taking their no and slinking off as they hope we will do. Team Lily (rehab doctor and Schreiber therapist) have written appeal letters to both companies and we will see if anything changes.

In the meantime, our WONDERFUL church held two fundraisers for us in August and we were just STUNNED at how much was raised! So, to everyone who came and painted, or even if you couldn’t make it and donated to us–THANK YOU!! You are all so amazing!! Our church is just full of the BEST people!! Thank you all for your love and support and for being the hands and feet of Jesus!! We love you! And we also got a generous check from Choice Communications in Myerstown! Thank you so much!!

We have a couple of other funding options that we are pursuing in the event that insurance does not cover the stander. It will take a lot of work, but somehow we are going to get this for her! We’re also pursuing funding for some renovations to our house to provide a private bathroom and shower downstairs for Lily. We can get some funding from the county BH/DS so we have to get some ideas together and start the process.

The kids are back to school now. Bryce is in 10th!! grade and Lily is in 6th!! grade. 🙂 Lily is now in Landis Run Intermediate School in an MDS class. Her new teacher is great (but we miss you, Miss P!) and she has gotten to see some of her old friends. Bryce has been playing guitar like crazy and just amazes me with how good he is! He has played at Lititz Second Friday a couple of times and really enjoys playing for that.

Thanks again for all of your support, love, and prayers! It really does help us cope with the times when we struggle.

Much love!