Arrgh!

Lily's surgery date has been moved up to MONDAY May 2nd. Freaking out. So much to do.

Quick Update

I am super tired from our recent trip to Athens, OH. It was lots of fun but I'm beat.

The procedure almost two weeks ago did not work, unfortunately. The surgeon was unable to get Lily's hips back in socket, most likely due to cartilage in the hip joint blocking the way. She is scheduled to go in May 4th for a surgery that involves cleaning out the hip joints and tightening the ligaments and tendons around them so that they will stay in place this time. After the surgery she will be in a cast that runs from right below her nipples to her toes. That will last from 2-4 months. We have a pre-op meeting this coming Friday April 29th. I will try to post more details after that.

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.

Overwhelmed

I wanted to start with some pics of the girls.

Lily's new sunhat!

Waiting for the doctor (again).

This is going to be a long post. The last few weeks have been a whirlwind replete with visits to specialists, a certain girl turning 7 (!), and a minor flood that invaded our sheds, the playroom, and nearly got into one of our cars. Hence the title of this post. I'll break the new info out by specialist.

Neurologist

A few days after seeing the ortho we headed back to the neurologist to actually look at the MRI images. I'm just going to sum up here since there were a lot of technical details. Lily's diagnosis is secondary microcephaly, agenesis of the corpus callosum, enlarged ventricles, and cortical dysgenesis. What does all this add up to? Essentially, Lily has less brain mass than your average 8 month old.

This is not going to spontaneously resolve. No sudden brain growth spurts. Brain growth just doesn't work like that. She will be behind her peers consistently for the rest of her life. Right now we don't know how far behind that will be. Actually, we probably will never really know.

The take away is: don't try putting her in classes with children that are younger than her (i.e. sticking her with 4 month olds, which is about where she is developmentally). What she needs is individualized solo and group therapies to help her attain skills.

Neurosurgeon

We went back to the guy who originally missed the fact that Lily was missing an entire structure of her brain! This was, basically, to get it corrected in the medical file so that we don't run into any issues getting treatment at a later date.

He's a real piece of work. He never bothered to say sorry and his excuse was "Oh, I didn't realize no one had had the brain talk with you". Oh really? Had he bothered to even glance at her chart he might have realized he was the first "brain person" we had been to see. Ah well.

The one valuable piece of info: Lily's ventricles have not enlarged between January and March. Her condition, at this point, does not seem to be degenerative. Thank goodness!

Audiologist

After much poking and prodding, we managed to get a hearing test. She measured normally int he mid frequency ranges but didn't seem to be able to hear higher pitched noises. But it may be because she was recovering from a cold and had fluid on her ears. So we go back in one month to check her again. *sigh*

Opthalmologist

This was the appointment I've been most worried about since eye conditions seem to be a common by-product of her condition. After much shaking of various toys, the opthalmologist concluded that Lily tracks objects well vertically, but not horizontally. The caveat is, she does not track normally for an eight month old, but since all of her development is behind this may be on par with the rest of her development. We will have to wait and see.

After that, she had her eyes dialated. Her optic nerves are a normal size (yay!). But they are partially pale (they should be a pink color). Some kids with pale optic nerves have normal vision; others have partial blindness, which is not correctable. Again, we must wait and see.

In addition, her left eye turns in slightly so we'll be doing eye patch therapy over the next month to help strengthen her eye muscles. That's right. Lily will be a pirate (with a ladybug eyepatch, no less) for approximately 20-30 minute a day.

Orthopedic surgeon

We got a second opinion and went to a highly recommended ortho. He wants to do a fluoroscopy procedure in the next couple weeks and see if we can get Lily's hips back in socket and in a cast. If that does not work, we are almost assuredly looking at surgery to put them back in the sockets. I'll post more as we get closer to the date.

Alright, if you've made it this far, thank you for sticking with me. If not, I understand. It's a lot. I haven't had a spare moment to post in the last two weeks and now you see why. I will try to do a non-medical post later this week with some thoughts about Lily and Elise, pictures, and I'm going to put in a sidebar with links to sites that have been helpful through all of this.

If I seem sarcastic or short on description/reactions, it is because I am. It is a lot of information to take in a short period of time. I'm still processing and reading and trying to feel out how to react to all of this. We are happy that it seems that she will be with us long-term. But when you have a child there certain things you take for granted (them laughing, talking with them, running, playing) that are now very much up in the air for Lily. It is a mix of emotions and grieving is definitely a part of that. I think I will post more about it later, when I am feeling more eloquent.

For now I am running on this quote from a podcast I listened to recently. The man telling the story had just found out his daughter, who had cancer, had reached the end of treatment and there was nothing else that could be done. At the same time, he was earning his living as a comic and had his first big break. He was falling apart until he heard a voice in his head tell him: "Man up! Life is not a sitcom. Things do not wrap up neatly at the end. This is the real s***." It isn't pretty or particularly well spoken but it reminds me that there are others going through much worse and we will get through this too.