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.
Hello friends! Lily has a neurology appointment at KKI this afternoon. It’s to go over the results of the EEG she had in May and discuss any med changes that may be needed. Please say a prayer for our girl (and Todd–I can’t go because my co-worker is off today). Thank you! <3