Hey, Team Lily! This is Kristi Raugh, a friend of Todd and Missa's (as we call her at our house)! We just wanted to get the word out that on Sunday, November 11 from 5pm - 9pm, if you enjoy a delicious meal at the Isaac's restaurant at Granite Run, Isaac's will donate 25% of your check to the Lily Grace Higgins Fund. Just show them your Lily Grace Higgins "Community Night" fundraiser flyer!
You may eat there or order take-out, but you must print and bring the flyer with you.
Let's pack this place for Lily!
See you there!
We had a good visit to KKI today. Nothing new or spectacular to report, but Dr. Schultz seemed pleased with how she's doing. She received a Botox injection in her right leg to help alleviate tightness caused by toning (uncontrolled stiffness). The leg seems to be more relaxed already, but it could take up to two weeks for the Botox to take full effect. We also bumped into a few of Lily's therapists from her inpatient stay last year and it's always so great to see them. They all marveled at how tall and grown up Lily looks compared to last year.
Thanks for all the prayers and support. If you're on Facebook, don't forget to "like" Lily's page. I post short updates and photos there.
Melissa and the fam
We're heading to Kennedy Kreiger tomorrow for a visit with Lily's rehab specialist. Lily might also receive a Botox injection in her right leg to alleviate the tightness in it. Please keep us in your prayers that all would go smoothly at this visit. Thanks.
Hello Team Lily,
Our visit to KKI last week was...OK. It's taken me this long to post an update about it because I needed some time to digest the results of the visit.
Lily had the EEG right after we arrived. Todd and I were in the room with her the whole time, and nothing unusual (so it appeared) was happening. We finished the EEG and went to meet with our neurologist, Dr. Burton (whom we love). She did her routine neuro exam of Lily and noticed some subtle changes since our last visit. However, she told us that at this point, we are probably not "going to go back" to the old Lily. She will probably continue to improve, but she'll most likely never be back to her old self. I think Todd and I knew that on some level, but hearing the doctor say that was very hard. I did not take this well at first and thought all hope was lost, but over these past few days since this visit, I've allowed myself to start to hope for more progress again. It just really, really sucks to be punched in the gut like that.
After we talked a bit more, Dr. Burton was able to speak to another neurologist, Dr. Ewen, who is KKI's seizure specialist. He reads every EEG of every patient at KKI. He and Dr. Burton were able to read Lily's EEG before we left that day. Dr. Ewen came in and shared the results of the EEG with us. Apparently, Lily had six very short, very small seizures during the EEG that morning. They were only a few seconds each and not serious enough to cause any further damage. As I said, nothing Todd or I saw during the EEG looked unusual to us. Dr. Ewen said that after they read the EEG, they watched the video to see what Lily was physically doing during the EEG and how it corresponded with what the EEG picked up. They said that during the "spikes," or seizure activity, Lily would suddenly turn her head sharply to the right for a few seconds. They said that other times it was something as subtle as lifting one or both arms at a time. We've seen her do these movements before, but we did not see them as indicative of a seizure. The doctors said that not all seizures are obvious, but that if we see her doing these movements again we should consider them a seizure.
There is not a whole lot that can be done about these seizures, except that the doctors have increased one of her anti-seizure medicines. Dr. Ewen explained that seizures are common with anoxic brain injuries and they are very hard to prevent completely. So, this is something we need to keep an eye on and accept as part of Lily's condition.
I was feeling very sad, defeated, and hopeless for a few days. I came across an article about fish oil being used to treat brain injuries. One of the cases that was highlighted in the article was the only survivor of the Sago mine accident in West Virginia a few years ago. He was treated with high doses of fish oil immediately after the accident, and he eventually regained the ability to walk and talk. I emailed Lily's rehab specialist, Dr. Schultz (whom we also love) and he agreed to prescribe a higher dose for Lily. We haven't started it yet because we're still increasing the anti-seizure med at this time and don't want to introduce another variable.
The article gave me a little bit of hope that maybe there is more we can do. Maybe we can't get her all the way back, but we want her back as much as possible. We will see if the increase in fish oil helps in any way.
We are going back to KKI next Thursday for a scheduled check-up with Dr. Schultz. Lily will most likely have a botox injection in her right leg. This leg has been turning out due to toning, and we think it's been causing her some pain as a result. We had to get approval from Highmark to get this, but they said yes! (I like to give them credit when it's due!) so we are going ahead with it. This will help relax the muscles in her leg and hopefully allow better positioning of the leg.
I did get two smiles from Lily last night. Daisy (our dog) licked Lily's face and she smiled a huge smile! A little bit later, I leaned over to talk to Lily and stroke her hair and she smiled at me again. It made my whole day!
Once again, we thank you from the bottom of our hearts for all of your support and prayers. Keep praying BIG and hope that our sweet girl continues to improve.
Melissa and the fam
We have another visit to KKI tomorrow...Lily will be getting an EEG and seeing her neurologist. The EEG is something neuro would like to do once a year, and it's been about a year since she's had one. Please pray for a smooth trip and for even the slightest bit of encouragement on her progress.
We're just about through this long, exhausting weekend. Todd is taking the night shift again tonight and then going to work in the morning. Hopefully, he can come home a little early and take a nap and then get back into a normal sleep pattern again.
I feel like I've been complaining a lot recently and I know I need to try to be more grateful. I'm grateful that Lily is still here in spite of how difficult things can be sometimes. Because as long as she's here, there is still hope. And I'm grateful for some recent donations we've received from complete strangers! You know who you are and we thank you! I'm grateful for the Kilgores who organized a superhero pub crawl as a fundraiser for us! You guys ROCK! I'm grateful for my hubby who's been such a champ this weekend. I'm grateful for Bryce who is such a trooper and handling things so well. I'm grateful for friends who came to help me out this weekend while Todd slept during the day. I'm grateful to God, who gives us all of these things and keeps me going when I am exhausted otherwise.
Also--the DPW has delayed the implementation of the co-pays for medical assistance. This is good news, but they are going back to the drawing board to determine another way to have families contribute to what they receive. I'm not sure what they will come up with, but I hope it is something a little more reasonable than their first attempt.
I am off to bed now as I have to facilitate training sessions at work early in the morning. Thanks to all of you for your continued prayers and support.
Melissa and the fam
Lily didn't go to school today because we did not have a nurse scheduled for today. Todd and I didn't feel comfortable sending her by herself, so Todd took the day off and took care of her. Thank goodness he has a very understanding boss and a lot of vacation time to use! We are beginning what I am calling our "swiss cheese schedule" weekend (lots of holes in coverage--see what I did there?) ;) We had no nurse today, none for tonight, one nurse is working a partial shift tomorrow morning and then coming back in at 3am Sunday morning and working until 3pm Sunday afternoon. We then will not have a nurse for Sunday night, and my awesome hubby is taking the night shift and then going into work that morning. I don't have the flexibility right now with my job as we're in the middle of some initiatives that are being launched in the next two weeks (and since I'm short term, I don't accrue any PTO so if I don't work, I don't get paid). So, my poor hubby is going to be one tired dude come Monday evening.
I channeled my inner Julia Sugarbaker (from Designing Women--her rants were epic, look them up on youtube) and made my displeasure know to our agency, but it didn't really change anything. The swiss cheese schedule comes down to, in my opinion, the sloppy scheduling procedures they use and the fact that apparently no one cross checks to see if too many nurses on one case have requested off for the same dates. So, as a result, Lily had to miss school, Todd had to miss work, and we are in for a very long, tiring weekend. A couple of friends have stepped up to help out and give us some relief, and we are very grateful to them!
All this to say, we could really use your prayers for strength, endurance, and patience this weekend, especially for Todd, since he has volunteered to take the night shifts. He is such an amazing husband and dad and I don't know what I'd do without him.
Thanks again for all of your support and prayers.
PS--I started a Facebook page for Lily! You can find it at: https://www.facebook.com/lilygracehiggins
Even if you are not Facebook friends with me, you can still "like" the page. I'll be posting short updates and photos on that page, but, no worries! I will still be posting here as well! Thank you all for continuing to follow Lily's story.
Very quick update, as I don't have much energy for posting tonight. I think Todd and I both feel like the visit to the KKI assistive tech clinic was a bit disappointing. I don't know if we had built it up in our minds that we'd be blown away by all that might be available to Lily and that our expectations were unrealistic. We were shown many methods/devices that could help Lily start to communicate, but again, we're not sure how they're actually going to be able to be integrated into daily life. We left there with some ideas, but at this point nothing that we can use immediately. The speech therapist we saw today is going to write up a report with her recommendations, and maybe then we can see what we can actually obtain.
Visits like this can be so bittersweet. We went there with certain expectations that were not met, most likely because they were unrealistic. Also, during these kinds of visits, Lily's deficits and limitations are made even more evident, which leads us to feel completely hopeless that she will ever improve or have any semblance of a normal life. Of course, then my mind starts to snowball into a huge mound of grief, worry, sadness, and anger. Everything that we have to cope with just hits me all at once sometimes and it's a little overwhelming. I think about how much more therapy/treatment Lily needs and how impossible it is to get what she *should* have, the mountain of bills that we're trying to dig out of now that I'm working, the nursing schedule for this month that looks like a piece of swiss cheese (many holes in coverage) and I don't know how we're going to do it. In fact, our visit today ended up not being covered by Highmark because it's going to be billed as a speech therapy outpatient session and we've maxed out on those for the year with Highmark, and MA does not transfer out of state. So, another bill to add to the pile.
I'm not sharing all of this so you all feel sorry for us or because we're hinting for money or anything of the sort. I'm just being real tonight and not in the mood to remotely sugarcoat anything. Sometimes I hit the wall of this reality and it's not pretty. I curse, I cry, I doubt, I feel overwhelmed. That's the way it goes sometimes so here it is.
Thanks again to all of you for all of your support. We are truly grateful for what we *do* have and I don't mean to sound ungrateful at all. I read every comment on this page, and every card, letter, and email we receive and I thank God for each and every one of you and all you do to support us. You are all truly a blessing to our whole family.
Thank you and God bless you!
We're heading down to Kennedy Krieger tomorrow for our appointment at the assistive technology clinic. We would treasure your prayers for this visit. We're anxious to see what they might recommend for a communication method for Lily. This has been a huge source of frustration for us. Please pray BIG that this would be a productive visit.
Hello Lily Nation!
Lily has been having a pretty good week. We've gotten quite a few smiles from her within the past few days. A few nights ago, I said a funny line from a cartoon the kids used to watch, and she smiled right on cue! I said it a few more times and she smiled every time. It was the night before my birthday, so it was the best birthday present!
On Tuesday, October 2, we are heading down to Kennedy Krieger for a visit to their assistive technology clinic. They will assess Lily and hopefully find a method of communication for her based on her current abilities. Communication has been our biggest source of frustration during this whole journey. We know Lily is in there and understands us, but we just have not had the time or the right kind (and amount) of therapy to get something consistent. We're hoping the experts at KKI can help us establish an effective and consistent method of communication so our girl can express herself again. Please pray BIG for this visit!
Yesterday we received a letter from the medical assistance office informing us that we may have to start paying co-pays for each of Lily's therapy sessions at Schreiber. Of course, the letter was vaguely worded and really did not clearly define exactly what was going to be happening with this, but it did say our co-pays could be up to $200 a month. I must admit that freaked me out a bit. I just started a new job so we can catch up on bills and stay caught up, and now this added expense may be coming. I just wanted to cry because I feel like we're doing all we can and now we're going to have to come up with money for this extra expense. I would do anything for Lily, ANYTHING to help her get better. It's just so frustrating when you're doing all you can and it's not enough. This co-pay is due to the budget cuts made by the state government and will affect many families whom I am SURE are struggling to keep it together financially because they, too, have kids with special needs. I'm hoping that this measure will be overturned, but if not, we're going to have to make some tough choices.
Sometimes all of this is just more than I can take. Seeing Lily smile, hearing that she had a great day at school, or a productive therapy session helps us get through the days. It just gets a little heavy at times. We are continually grateful for all of your support for us over these last 19 months. Thanks to each and every one of you who have donated, prayed, cleaned, brought meals, mowed our grass, or just simply read this page and remember us in your prayers. God bless all of you!