St. Jude Novena Update

Thank you for praying the St. Jude Novena with us. After trying for a month to get all the records from Florida sent to Virginia, and after being told that after they got the paperwork it would be another month before we got an appointment, we got a call on Day 2 of the Novena that the neurologist got everything in and had an appointment that day, if we’d like it. Well, of course we would!
That appointment set up referrals for most of the other specialist doctors that Lily needs to see and we’ve had appointments with some already. And they’re good doctors. Miracles! Her new pediatrician is also on the ball, so I’m really happy with how things have been going. Thank you, St. Jude.

At the neurologist appointment, we upped her seizure medicine dose since we were still seeing seizures. Two weeks later, we were still seeing seizures, so we’ve upped it again. It’s been a few weeks and she’s not had one (we don’t think…there have been a few times that looked suspicious). This is such a relief. I doubt that she’s at a dose that will keep them at bay as she grows, but it works for right now, and she’s still on a fairly low dose. Life is so much easier when your child isn’t having seizures. She had another short EEG just after upping the dose, so we’ll see what that says at her next appointment in January.

I only pulled one wire off at the EEG

Lily’s sleep got a little better and is now worse again. I’m not sure what prompts it to go either way. We’re very, very tired. The sleep situation has made Lily’s PT appointments fairly non-existent, and because the PT we had could only come on Monday and had very little flexibility with the time, we have decided to try a different PT who has more wiggle room with days and times. I hope that it works out well and that Lily makes the switch again to days being days and nights being nights. It's just harder than hard to only be getting a few hours of non-consecutive sleep each night. 

Two Years Old

This year has been full of challenges, triumphs, and joys. We have been bone crushingly tired (and remain mostly so). We have spent days in the hospital. We have cried, but not as much as the first year. We have laughed. We are in awe of just how beautiful Lily is, how perfect.
I love
…how she smiles sweetly as she drifts off to sleep
…how she loves to snuggle with Daddy
…how she only pops her jaw when she’s happy or content, or to get a reaction from people
…her little coos, that are sometimes very loud!
…finding out what toys she likes
…her excitement when anyone in the family comes by
…that she loves kisses

There is a lot that you have to come to terms with as a special needs parent. Will she? Won’t she? Does it matter? I admit it is still difficult to see children about the same age as Lily doing what she would have been doing. It’s hard to see little babies doing things that she can’t. There are definitely some challenges to having a two year old that is more like a four month old. And there are joys.
I think that’s what I wish that the doctors had told us the day they gave us the Officially Official news. Yes, tell us that it looks bad. Tell us what it might mean. But then don’t leave it there and ask if we’d like to go into the other room to cry. Tell us that we will love her fiercely and that we will find the joy, the hope. That the little things she does will be cause for great excitement (even though that will sound bad at the time). That we’re going to meet people along this path who will comfort us, encourage us, and help us. That we’re not alone. No, we didn’t ask for this, didn’t plan for this. That it’s going to be hard- so so hard… and that it will be beautiful, so very beautiful.

Happy 2nd Birthday, Lily Bean. We love you more and more each day.

St. Lillian, St. Faustina, Our Lady of Loreto, and her Holy Angel, pray for her!

To Terms and Trees

I'm pretty sure I probably had a panic attack when we were first discussing wheelchairs about a year ago. It's actually just been in the last few months that I've really embraced it (seeing how happy Lily is in it sure helps.) So when the equipment guy showed up today to pick out a feeding/activity chair that will be loaded with supports and all sorts of options that scream "I can't sit on my own" you would think I might be sad. Totally the opposite now. I am so thankful that Lily is able to get what she needs to live the best life she can, and I'm thankful that I've come to accept where we are in this life. (And we need a bigger house. All the equipment is huge.) 

 Lily looking at the trees at the playground today