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.

Much love!
Melissa

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!

Melissa

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.

Much love!
Melissa

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!

Much love,
Melissa