More Procedures

Elise as the White Rabbit

Trying to get a picture of Lily's smile when I squeak her Sofie teether. Couldn't quite get it, but cute nonetheless.

Lily the pirate!

First of all, I just want to say thank you to everyone who has commented here, emailed me, facebooked me, thought and prayed for us. It has been so helpful to know that others are thinking of us and offering support throughout everything that is happening.

A lot has happened (again) since the last post. The main thing is we met with representative from Early Start. It's a program that helps children from 0-3 years old who have developmental delays. The lady who does the intake procedure was wonderful and has a 17 year old son with cerebral palsy. It was great to talk to a parent who has been through something like this and come through the other side. She understood how stressful the wait for a diagnosis has been and then coming to terms with that diagnosis, not to mention staying functional for your other children. It was great to talk to her and she gave me a lot of good ideas on how to work with Lily while we wait to get in with a physical therapist. They are going to arrange physical therapy, occupational therapy, and visual therapy for Lily, as well as speech and language therapy as she gets older. The best part is that they will keep track of all of these things and make sure that everything is communicated to the school district as she transitions into preschool later on. Overall, I think that we are moving towards getting Lily the help she needs to move forward.

Lily also has another medical procedure coming up this Monday April 11th. She will be sedated again, which is always nerve wracking. They will then inject a contrast dye into her hips while she is under an x-ray machine and manipulate her hips. Hopefully they will be able to place her hips back into socket. If so, they will put them in place then put her in a spica cast. This is a cast that runs from waist to toes and she'll be in it for 6-8 weeks. If they cannot manually place her hips, we will be scheduling a surgery for a later date. This is a fairly minor, outpatient surgery but you know, hearing that your kid has to have any kind surgery is terrifying. We are really hoping things go well Monday. Oh and either way she will have to be in the cast, so ideally we won't be dealing with a cast in addition to surgery.

As for how we are doing, it is up and down. Lily is great and awakens every morning with a smile. She's mimicking noises now and tries to pull herself to sitting when she is on our laps. She's engaged in the world and loves interacting with people. Dan and I are both having a hard time knowing how to deal with all this. I'm exhausted from the neverending doctors appointments, not to mention now battling the hospital over incorrect medical bills. Dan has to deal with all this while working full time. And we are both worried about the effect it is having on Elise. We are looking for a child psychologist to help her work her way through this transition. She's had a lot of anxiety and has been waking up at night or having issues falling asleep. She's frightened of doctor appointments and asks me frequently if Lily will be ok or if she is going to die. It's heartbreaking, to be honest. On the other hand, when we aren't dealing with her issues, Lily is fun to be around and the four of us go out and have a great time.

One of the best things about the meeting with the Early Start people is that they directed me to resources for parents of special needs children. There are a couple support groups but most importantly there is a weekly playgroup and coffee session for parents. I'm excited to go. It has been difficult to find the energy to go to regular playgroups because I have to explain all these things going on with Lily and seeing other, regular, children her age is difficult. I just don't want to be the crazy lady who breaks down crying in the middle of the playgroup because someone else's 8 month old is babbling and crawling. Perhaps not the best way to make friends!

I will try to post more on Monday once we are done. Please keep us in your thoughts. We are really hoping that things go smoothly and she will not need the surgery.