Emily Quinn's Story: Update

Welp, I certainly did not mean to take 3 months to post another update… I do have a super cute excuse for a distraction (and endless laundry to do). A lot has happened in the last 3 months! Emily is now 5 ½ months old and adding more facial expressions, sounds and skills to her repertoire of cuteness each day. Every single day, she does something or just looks a certain way and I stare at her and tell her she couldn’t possibly get any cuter – but she does somehow. I am crazy in love with this girl. She is babbling more and recently added a gurgly “g” sound to her conversations with me. Her head control and strength has really taken off in the last month, most noticeably during tummy time, which she tolerates much better now. She is now picking her head up off the ground and turning it side to side with ease. Still not keeping it up for long, but her endurance is getting better. On September 7, she rolled over from her tummy to her back for the first time!! Emily has an amazing physical therapist that she sees once a week– one of her favorite people – that has helped her come this far and taught us how to help Emily the other 6 days of the week. Her physical therapist says that she is making improvements each week. Emily might have to work harder to achieve these milestones, but she is tough and stubborn!

Now to the medical stuff:

Emily started having these odd eye deviation episodes that made my mommy instincts, along with reading about other children with hydrocephalus, think seizures. She would quickly deviate her eyes down and to one side, and keep them there, almost as if they were stuck, with some beating-type movements. I called her Neonatology team who decided she should be seen soon to get an MRI and/or CT scan to check her shunt. It wasn’t an emergency but seemed urgent enough that she wanted us to go to the ER the next morning, since that was the only way to get an MRI on short notice. So off we went. After describing her symptoms and showing video footage we had of the episodes, to oh, I don’t know, 8? Doctors, we were admitted for an EEG (after the MRI and CT scan showed that her shunt was working properly, thank goodness). The neurosurgery and neurology team agreed that her episodes seemed seizure like, even though not the typical signs of one. After hours of waiting, we finally got to our room for the EEG, in the same unit where she was after the NICU. (That certainly brought back a lot of memories.) Now, you wouldn’t think using a marker to put spots on her head would be that traumatizing. Emily thought otherwise. (I’m sorry that your first experience with Crayola was that way, honey!) Finally, they got 30 electrodes on our screaming baby and our 24 hour EEG began. We had a button to push when we saw any abnormal eye movement. They looked through the results and did see some “seizure-like potential” but no seizures. Granted, she didn’t have any long episodes like she was having at home. We were 30 minutes away from being unhooked and discharged when she had an episode, which came back as a “maybe” seizure, prompting them to move us to a live room connected to a 24-7 video EEG. Fun, fun. It’s hard to explain how odd it is to have a video following you constantly for 2 days, knowing there is a person behind it, watching our every move, their job to move the camera. If I picked up Emily to feed her, there was the camera panning out and back in; walking with Emily to get her to sleep, that camera followed. Since I’m breastfeeding her, they called to ask how I felt about them videotaping it. I must have lost some modesty having a baby because I honestly didn’t care and told them to zoom on in, if it meant getting the video they needed. They still were “camera shy” about it at first until Bryan insisted “she really doesn’t care!” That “person in the sky” as the nurse called it, was great at their job, I have to say! In the end, it was mostly inconclusive. There was one seizure picked up on the EEG, but it wasn’t when she was having the eye movements. The neurologist said that seizure was debatable as being classified as one. He attributed it to abnormal brain activity, which children with abnormal brains are going to have anyway. Since our case was complicated, the head epilepsy doctor at Duke took a close look at our videos. During one of her episodes, there was no abnormal activity on the EEG, but he said she had a seizure just based on what her eyes were doing. We talked medication. We expressed our concern about side effects. Our neurologist said he was comfortable waiting to medicate and wanted us to keep a detailed log for 2 weeks, then reconvene. 2 weeks later after watching several more videos of her and reading the log, he was still on the fence. He said there were many indicators that told him it might not be seizures and just something she does to compensate visually or a behavioral oddity. After about 2 months of these episodes, they slowly stopped. She will still do them occasionally but only briefly. Apparently, she likes to baffle us. Seizures are a possibility in our future, as children with hydrocephalus are at risk for them. I guess we’ll cross that bridge when we come to it.

On to lighter news:

Emily had her 3^rd cord blood infusion!!! The process was exciting, as always, and it was a pleasure to see Dr. Kurtzburg and her team. It was a struggle to get an IV in our chunky baby – they finally had to do one in her head. I wish we would have started with that one, since she cried way less than she did while they tried her arms and legs. Trey, the musical therapist, came to sing to her and even let her touch his guitar! We were talking about how bittersweet it was, being her last one, when they told us they had enough for ONE MORE!!! That one is scheduled in November, right before Emily turns 8 months old.

We just had a neurosurgery appointment last Thursday. The appointment lasted 5 minutes and cost $40 but it went great! Dr. Fuchs was thrilled with how healthy she looks, in particular how chubby she is now (19 pounds, 2 oz!) Her shunt and soft spot felt perfect. He was going to do another rapid MRI in December but he decided to wait until March, when she is 1 year old. I asked if he was going to do a more detailed MRI where she has to be sedated but he said maybe at some point, later down the road. My nosy, detail-oriented self wants to have one done so we can have a better look at her brain but in the end, I do agree with him that if it doesn’t change the way he would treat her condition, it isn’t worth the sedation. We know by now that it doesn’t matter what her brain looks like anyway, it’s what she can do that matters. And she’ll show us that on her own, in her own way!

We have a neuro-opthamology appointment on September 24^th. We hope that she will recommend visual therapy. She denied it once already because she said her exam at 2 months old was typical. However, Emily is not tracking objects as well as she should be so I hope by telling her that, she will write the referral this time. Visual therapy can only help her, so keep your fingers crossed that she agrees! We also have her 6 month pediatrician appointment on September 29^th, where she will get the OK to start solid food (yay!) and see if her PFO has closed yet. Oh, and shots for the poor girl.

I will try to update again soon, not 3 months later this time!