Orthopedic Appointment

This is Lily waking up after the anesthesia for the MRI. I just liked how sweet she looked in this video and how she's talking to us.

Here's Elise singing her the Itsy Bitsy Spider.

I just wanted to start this post out with some positive looks at Lily. So we went to the orthopedic surgeon today. Apparently, both of Lily's hips are dislocated, the left one slightly worse. Normally what would happen is that they would put the hip back in place and put a cast on for 6 weeks, then do the same to the other side and they would be fine. But since Lily's muscle tone is a bit overdeveloped in her legs, they were concerned that her hips would just dislocate again after removing the casts.

So we are going to start physical therapy to try and improve her rolling, grasping, and sitting abilities and then we will reevaluate in 3 months. At that time, they'll sedate Lily, inject dye into her hips and manipulate them while taking x-rays. This will show if there are any malformations of the cartilage, which could require surgery. If she hasn't moved forward on any milestones in three months, we will skip the casting and wait until she is older (around 2 years) to do a surgery which would put her hips back in place. Basically, they don't want her to be in casts for a total of 3 months, just to have her hips re-dislocate, and end up doing the surgery anyway. I appreciate that they would like to cut back on the number of procedures performed on her.

The ortho was pretty sure that Lily's developmental delays had more to do with her neurological problems rather than the physical issues. What does this mean? Possibly, that Lily may never be able to walk. But we are going to stay hopeful and keep working with her. No doctor has a crystal ball and a lot of kids with her condition have proven the specialists wrong. In the meantime, we'll be seeking a second opinion.

Up next, we have our follow up appointment with the neurologist on Thursday. Hoping that will be better news. I'll post when I can.

Ortho

Just wanted to quickly post that we will be seeing an orthopedic surgeon today to look at Lily's hip. The pediatrician thinks it is mild hip dysplasia and can be fixed by putting her in a cast, rather than surgery. We are hoping the ortho thinks the same thing. Will post with an update as soon as we get back home (and hopefully some pics and videos of Lily too, just to liven it up a little!).

Preliminary MRI Results

So I talked to the neurologist tonight and there were some findings on the MRI. Lily has agenesis of the corpus callosum. What does this mean? Basically the structure that links the two hemispheres of the brain is completely missing, never developed during pregnancy. As far as a prognosis for Lily, it is still up in the air. From what I've read, it depends on the severity of other brain abnormalities. Some people function mostly normally, some are fairly impaired.

For now, the neurologist is getting in touch with the neurosurgeon that looked at her CT scan last month and they will be comparing the scans to make sure that there haven't been any changes. On the original CT scan they found moderate ventriculomegaly (there are ventricle spaces in the brain; hers were slightly enlarged). It was deemed medically insignificant at the time but the neurologist wants to make sure that they are not getting bigger.

So there is still a lot up in the air but we are happy to know something and to rule out a lot of other things (cancer, MS, MD, etc.). The main thing though is that it goes back to just taking it one day at a time. We won't really know the extent of the problem until issues arise, which we'll address one at a time.

Hopefully we will hear more on the ventriculomegaly next week. At the moment there is some sense of relief, though, as we begin to understand what is causing the microcephaly.

Still Waiting

Just wanted to let everyone know that we are still waiting to hear back from the neurologist. They literally took hundreds of images of Lily so we may not hear anything until next week. But I'll update as soon as we know anything.

We're Home!

Lily made it through the MRI just fine! We're home and resting. We should hear from the neurologist in the next couple days.

MRI

I just wanted to let everyone know that Lily will be having her MRI tomorrow, Tuesday March 1st, at 7:30am PDT. The entire procedure and recovery time should take about 4-5 hours. She'll be under anesthesia for most of it. I will try to post as soon as we are out of recovery and let everyone know that she's ok. Thank you in advance for your thoughts and prayers.

Where to Begin...

This is Lily. She will be 7 months old this Monday. She and her older sister Elise are the lights of our lives. This Wednesday, Lily was diagnosed with microcephaly.

Back in December of last year, the family doctor we were seeing noticed that Lily's head size was falling down the charts. She was born at the 25th percentile in July and by December was down to the 3rd percentile. He also noticed that her soft spot was very small. He suggested that it might be a condition called craniosynostosis and referred us to a team of specialists at Lucile Packard Children's Hospital.

After a CT scan and seeing a craniofacial surgeon and neurosurgeon, we were told that the suture running from Lily's soft spot to the bridge of her nose was prematurely fused. But it was mild enough that she was not in need of surgery at that time. Yay! We thought we'd dodged a bullet and went home happy.

Two weeks ago we went in for Lily's six month check up and her head was exactly the same size as it had been in December. It now is no longer on any growth charts but is two standard deviations below the chart (i.e. her head is two centimeters smaller than the lowest percentile on the growth chart). The pediatrician was concerned and ordered numerous tests. All the bloodwork came back clear: no food allergies, no viruses, no blood disorders. Her physical exam showed that she was behind on her motor skills (no rolling over, grasping objects, or sitting up) and that her arms were a bit weak and her legs overly rigid. We were referred to a neurologist and an orthopedic surgeon to check out an abnormality in her left hip which was noticed in an xray.

This Wednesday we were able to get in to see the neurologist (thanks, apparently, to the pediatrician calling him personally and begging to get us in ASAP). He immediately diagnosed her with microcephaly. After a thorough exam and taking a medical history, he felt that it is not degenerative. Lily is scheduled to have a full body MRI on March 1st, which will, hopefully, confirm his gut reaction. She will have to be fully sedated for 4-5 hours for this procedure.

We are trying to stay hopeful. She is a beautiful, loving little girl. She knows who her family members are and squeals when we play with her. She's doing her best to roll over. She loves music, being sung to, and dancing around. Right now we are just hoping that this diagnosis will not be that this is fatal.

Mostly I started this blog to keep friends and family informed. I don't feel that I can explain all of this repeatedly because it is just too scary and emotionally taxing right now. I will try to update this space as soon as we have new information. We appreciate all the love and thoughts and phone calls, emails, etc. Thank you.