Saturday, May 31, 2014

Results from Wednesday's CT Scan

Thank you all for your prayers Wednesday- they were absolutely tangible. Lily hadn't eaten in 13 hours and you would have never known...which is quite different from every other day! Really, the day couldn't have gone better behavior-wise with all the kids.

She slept through the CT scan and was sedated for the hearing test. After trying (and failing) twice before to get all the readings the audiologist would need for hearing aids, we wanted to make sure this would be the last try. Lily was just lightly sedated (she still wiggled a little and was waking up just as the test was finishing), so it was nothing to worry about. I wish they would tell you that beforehand- it would save me (Laura) unnecessary worrying. At any rate, the doctor got everything she needed and confirmed a lesser general loss in Lily's left ear and a greater specific loss in her right. The next step is getting hearing aids. I'm thinking bright pink!

Lily during the hearing test.

We then met with the pediatric neurosurgeon to discuss the CT results. We got to see the 3D scan of her skull and brain and received the news that the doctor doesn't recommend going forward with surgery, but rather waiting and watching. The bones are not yet fused together and so still have room to grow. The main problem is that her brain just isn't growing, which means that her skull isn't going to grow. She also has some fluid in the back behind her brain which the doctor didn't seem concerned about, and so we didn't ask any questions about it, but are now wondering about. After looking at the CT, the doctor also thought that Lily wouldn't be able to see, but when he saw her he could see that she was definitely alert and could see. We don't know what to think about the doctor thinking she wouldn't be able to see based on the CT, but we are pleased that Lily surprised him.

The neurosurgeon and plastic surgeon will be meeting on Monday to discuss Lily and see if they're on the same page about things. We have a NICU follow up on Tuesday and we'll be able to ask questions we've come up with since Wednesday.

Other than the exciting news of no surgery, the most wonderful thing that happened this week is Lily's first laugh! She had been making a little squeal sort of noise, but Tuesday evening we got real laughs. She laughed again on Wednesday, so we knew it wasn't just a fluke.

Please continue to pray for Lily's progress and especially for her brain to grow!

Tuesday, May 27, 2014

Prayers for tomorrow's tests

We have to leave before 6:30 in the morning tomorrow for Lily's CT Scan. We're actually able to get her sedated hearing test done at the same time, so two birds, one stone.

Prayers for a safe trip there (with a hungry Lily) and back, for the tests to go well, and for the other four kids (and us) to not go crazy while waiting at the hospital are most appreciated. (We're a little nervous, too.)

Thank you all so very much.

Friday, May 23, 2014

Neuro follow up

Lily had a follow up with her neurologist on Tuesday and it went very well. She's gained some weight from her pediatrician visit last month (we'll see what he says next week....Lily is not a fan of formula and so we've been keeping on just nursing), though her head hasn't seemed to have grown any. He thought it is a good thing that we're getting the CT Scan next week and that he's pretty sure that she'll need surgery, too.

The neurologist was "cautiously optimistic" about Lily. He tested her reflexes again and said that she was doing better than our first visit with him. He said again he wasn't concerned with her twitchy movements and that after her surgery in July we could start an eight week wean of her seizure medicine. That's fantastic! There's always a chance that she could have seizures later on down the road, but since she hasn't had any yet, it's probably better to be off the medicine than on it.

He said that he wouldn't discharge her until she was at least three, but that he even brought up the possibility (however small!) was very encouraging. We left there happy and the doctor said he would keep Lily in his prayers. Can't beat that.

Lily has been keeping up with PT once a week and has been improving. She can roll to both sides, from back to belly with a little help, and belly to back without help (usually). Her head control is getting better, though she can still be a little wobbly. She was able to sit by herself for a second a few times, but doesn't yet know how to put an arm out to prop her up or stop the fall.

The most exciting thing Lily is doing is bringing her hands up to her face. She was doing it a little while she slept or was sleepy, but she's now doing it while wide awake and she's working hard to do it! We get so excited when she brings her hands together or brings her hand up to her mouth or even rubs her nose. She's not able to keep them there for long, but we're seeing improvements every week.

                                                         Happy 6 month birthday, today!

Thank you for your prayers!

Specific requests:

We've got the CT Scan next Wednesday that she'll be sedated for- that it would go well and that the next steps for her care would be clear, that Lily would continue to gain weight and that she (and especially her head) would continue to grow.