Hey everyone! Our awesome church is doing these fundraisers for us! Please read for details!
On August 8 and 14, Victory Church PA is having awesome art fundraisesr to help raise funds for a beautiful girl at our church who suffered a traumatic brain injury a few years ago. Tickets are $40 and you’ll receive step-by-step instruction on how to paint birds on a branch (August 8) or a dandelion puff (August 14). ALL supplies are provided and 100% of the money goes to Lily! Call Lindsay Hess at 717-799-4224 if you want to buy a ticket or you can message me on Facebook or email at firstname.lastname@example.org. Tickets are limited! Thank you!!
I’m a little late posting this, but here is a photo of Lily and me at her graduation from Reidenbaugh Elementary to Landis Run Intermediate School. It was a fun little celebration, albeit a little bittersweet for me. I’m happy that she’s moving on to a school with her peers, but we will miss Miss Palmquist enormously because she is a wonderful, dedicated, compassionate teacher who never gave up on Lily for one second. We are so grateful for all she’s done for Lily for the past 2 years!!
It was also bittersweet because I kept thinking how this should not be happening this way. She *should* have already moved on with her friends and she should be laughing and playing with them. I try not to dwell on those thoughts too often or for too long, but I do think about that. It’s impossible not to. I’m just happy that she might get to see some of the friends she had before her accident again, and how that might be good for her.
Also, the (long, slow, frustrating) process of getting the glider for Lily has begun. The request to the insurance company (coughHighmarkcough) should be going out soon and then we’ll see what their reply is (coughdenialcough). I’m still believing that somehow we will get it!
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!
We loved this butterfly bench! I want one for our house!
A pic in a lovely gazebo.
Lily with some of the butterflies the butterfly house employees put on her. It was just amazing.
Todd was rolling her over a piano-type instrument on the ground.
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!
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!
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!
Hey everyone! Just a quick update tonight. Lily had a routine visit to our new neurologist at KKI today. We hated to say goodbye to Dr. Burton, who had been Lily’s neuro from the beginning, but she has moved on to research now. So, we got to meet Dr. Ismail today and she was great! She took her time getting to know Lily and asked a lot of questions about her. We’re not changing too much in the way of anti-seizure medicine at this point. Everything seems to be doing its job and a point comes when too much medicine doesn’t really help the seizures. For now, they are pretty well managed (they will probably never be 100% stopped). We’re going to increase the dose of one of her medicines and see if that helps at all, and then she’ll have an EEG to see if the new dose is helping. We also saw Dr. Ewen, who is the attending doctor and oversees all patients who have seizure disorders. He came in and talked to us about medicine options, and suggested a diet called the ketogenic diet. We’re going to talk to the GI doctor about this in May when we have our appointment.
Otherwise, Lily is doing pretty well overall. She is so tough! We’re going to be trying out the Easy Stand glider at Schreiber in a couple of weeks. If it’s appropriate for her, we will begin the game known as “deny, appeal, deny, appeal, deny, figure out how to pay for it because we’re out of appeals.” Ha. I’m trusting God that we’ll get it somehow!
Thanks again for all of the support. We recently received an Isaac’s gift card from a special person! We’d like to say thank you (you know who you are)! We LOVE Isaac’s!! Yum!
Here are a couple of recent photos! 🙂 Lily’s pink curl is my favorite thing in the world!!
Lily’s appointment last month at KKI went pretty well. We talked to Dr. Suskauer about changing up Lily’s meds and treatment plan. We feel like we’ve been stuck in a rut with everything we’ve been doing and felt it was time for some changes. The first thing we’re doing is working on improving her gastro issues. We had an appointment with a local gastro specialist for March 25, but that appointment had to be postponed and we don’t have a new date yet. Hopefully, it won’t be too long until we can get in there. After we get the gastro issues figured out, we are going to make some med changes with the goal of helping Lily become more alert. Dr. S wants to possibly wean her off of 1 or 2 meds that may no longer be benefiting her, and adding something to make her more alert. We’re excited to try these new approaches and to see what changes we might see in Lily. We’re also looking for a dermatologist for her. She has always had eczema, but she has some rash-type patches on her face and we can’t figure out what it is. It looks like it might be eczema but we’re not sure. So, it’ll be off to another appointment! 🙂
We’ve also been talking to Lily’s current PT and the PT she had while at KKI in 2011 about getting a piece of equipment that will give Lily some more movement during the day. It dawned on me recently how little actual movement she gets now. She pretty much goes from chair, to stander, to bed, to chair, to stander, to bed. That’s it. We realized that she needs a way to get some movement to help with muscle tone and to keep her bones strong. We don’t have a lot of room in the house for another piece of equipment, but there are a couple of options we are exploring.
This is the Easy Stand Glider.
It would allow Lily to move her arms and legs safely. The approval rate for insurance is OK, but we’re not hopeful. It’s around $6,000. :/
This is the RTS 3000. http://http://www.restorative-therapies.com/rt300-legarm
Lily would stay in her wheelchair and her legs would be attached to the pedals. It has electrodes that would attach to her legs to stimulate her muscles to do the work. It probably costs a zillion dollars. Lily would have to trial it a couple of times before we would ask for our insurance to cover it. The odds of it being covered are about 60%, with “alternative funding” available (aka, loans). But, we shall see.
Today was “book character” day at Lily’s school. She went as Julie from American Girl. 🙂 I pulled the outfit together in a rare stroke of creative genius, with a top and jeans Lily had already and a purple knit cap just like the one Julie wears on the cover of the boxed set. She looked so cute!
Today we had a meeting with some of Lily’s education team. Good news!! Lily will be moving over to Landis Run Intermediate School in the fall!! This means she will be in the 5th/6th grade building with her peers! The program and teacher they have in place sound great and we are very excited that Lily will be with friends her own age. Yay!!
Thank you again for the continued support and prayers! We love you all!
Four years ago tomorrow was the day our lives exploded. I have been wrestling for weeks about what to write about this year. I really, really hate February in general and can’t wait until it’s over. I’m trying not to give too much energy to tomorrow but I find myself thinking back to that day, and the day before it, too. I have very precious memories of the evening before this happened and I think about that all the time. I’m grateful that I took extra time with Lily that night. Who knew it would be the last night like that? I started to write the details of that evening to share with all of you, but I couldn’t do it. Maybe I will someday if I am strong enough.
We are moving forward and trying to participate in living again. As I’ve said before, this doesn’t get easier–it just gets “different.” We’re trying to give Lily the best life we can give her. But it’s hard. Our healing looks like a plate after you shatter it on the floor and try to put it back together with duct tape. It’s together, but ugly and messy and pieces are probably going to fall off at any moment. It’s hard balancing taking care of Lily with parenting a teenager (who still struggles with all of this as well), working full time, trying to hold a marriage together, family, friends, and other activities that help us cope and make us feel normal. It’s exhausting. Sometimes we are managing it, and other times we just can’t.
I’d like to take this opportunity to again thank everyone who was there for us at the very beginning of this whole ordeal. Friends and family who stayed with us for days and even weeks to be there for us and get us whatever we needed. Strangers who sent us donations, cards, letters, emails, food, and prayers. The emergency teams who saved her life. The Life Lion crew who got her to Hershey. The nurses who offered comfort. The people who came and prayed when we were told she was not going to make it. The people who came after she did make it and held us up as we faced uncertainty. And to those who have stuck by us since then–thank you for your continued support. Thank you to our old friends and even some new ones who put up with our crazy but love us tangibly anyway. Thank you for getting that we still need help and friendship, dinners, wine, housecleaning, and a shoulder to cry on. Thank you for not expecting us to be back to normal. Thank you to the online support group I’m a part of where there are other parents who understand what this life is really like. Thanks to our families for sticking by us.
We are grateful to all of you for whatever part you have played in this journey. Thank you for still following Lily’s story. Please, please don’t forget our precious girl. She is our angel and our inspiration (and so is our son). Please pray for Lily and wear pink or purple for her tomorrow. 🙂
This is a song that I listened to a lot after Lily’s accident. It is one of my favorite worship songs. It has brought be a lot of encouragement and comfort over the last four years.
Just kidding…it’s really not all that bad here, but the media would have you believe that we’re all going to be snowed in for days and you’d better have milk, bread and eggs or else! However, I do like snowy evenings when activities are canceled, so we have to slow down and just hang out together as a family.
Lily has been doing pretty well since her trip to the hospital in December. We are keeping an eye on her (ahem) “output” and making sure we stay on top of it before she ends up in that situation again. We joke about it, but it can get very serious very quickly if we do not keep ahead of it. Her teacher has reported some sessions with good eye gazes, which is great. We try to be happy with any small accomplishments.
This is a hard time of year for us, with the anniversary of her accident coming up next month. I am still amazed at how much Lily has been through and how strong and resilient she is. She is a fighter and does not give up. She is my inspiration and strength. I wish more than anything that I could take all of this away from her and take it on myself. We just try to give her the best quality of life we can and let her know how loved, adored, and needed she is.
Can I just give a shout out to my husband? He is truly the greatest dad ever. He is absolutely dedicated to taking care of Lily and gives so much time and energy to her needs. Many men would have ditched this life a long time ago, but Todd continues to be our rock. He loves our children and is a huge supporter of me and my job and other activities I do (for my sanity). I honestly don’t know what we would do without him.
That’s about it from here for now. Thanks for your continued love and prayers.