Update Number 6: Wizards!

April 4, 2013

Ellie Update: I just got off the phone with the woman who schedules appt's at Milwaukee's CVS clinic. She received our (huge!) packet and all Ellie's medical records (over 20 pages, geesh). Now we wait as Dr. Li reviews it all and then passes it back to her to do the scheduling piece. Dr. Li is currently out of the country. I sent the packet in 2 weeks ago and hadn't heard anything. I must admit I started second guessing myself. Like maybe Ellie isn't "bad enough" to go see the Wizard of CVS. But, that's just my insecurity and/or anxiety creeping up. It will be so so wonderful to talk to professionals who know about CVS.

This week we went down to Children's Hospital here and met with another wizard, but he is the Wizard of Sleep. Our regular pediatrician suggested waiting the 4-5 months for an appointment with this guy because he is a BIG wig as far as pediatric sleep specialists go. She figured he would know more about CVS and it's association to poor sleep. Nope. He knew of CVS but not much else, at all. That part was disappointing but he did have some really interesting thoughts about Ellie's sleep issues (she still wakes at least once a night, often more and often with stomach pain). So, we will do another sleep study at his clinic at the end of May. We also are going to go see another orthodontist who works with the Wizard of Sleep. Ellie has an "abnormal" cranial structure (in our house we just call that the Granstrom head) and he said a lot can be helped with airway issues through orthodontic work. There are more details but I think it's boring...

Something that Ellie and I are both pretty excited about is a CVS 5k run/walk the first weekend of June. Ellie keeps asking when it is. I think she is curious to meet another kid with CVS. Here is a link to the event: CVS Run/Walk This is the blessing of living so close to Milwaukee! It's a fundraiser of course, but I think it should also allow us to meet other kids/families with CVS. So far I only know of two other families. I have not met her but have talked to one other mom on the phone a few times and she is WONDERFUL! She has a teenage daughter who has grown out of CVS (and into migraines, but only occasional). I cried and cried when we talked because it was like hearing Ellie's own story--and there is just something powerful in knowing others have been through exactly this. I also cried and cried because this woman is so kind and supportive. The other is an old college acquaintance, but she lives far away and her daughter has numerous health issues that are much more serious than only the CVS. My point is, I'm kind of hoping we make a friend or two at this walk (Dear God: a 6-year-old girl friend would be perfect, Thanks). But if we don't that's ok too.

Ellie is currently on a fairly strong medicine that does seem to be helping. But neither B or I would like her to be on this medicine for a very long period of time if possible, hence heading to the Wizard of Sleep at Children's. He also would not like Ellie to be on this strong medicine. Ultimately the medicine knocks her out, makes her woozy in order to help her sleep more, in order to help her have less episodes. It is working, but the Wizard of Sleep and Brian and I would all like to figure out if there is a more foundational issue that needs addressing with Ellie's sleep. Right now Dr. S (sleep genius) thinks that there is still a breathing issue for E when she lays down. Anyway...for now I'm glad for the respite. We are having mini episodes (no vomit, just nausea and pain) about once a week and it's easily solved with zofran, snuggling and distraction. Our recent long road trip caused numerous mini episodes but that's just to be expected--excitement, poor sleep, lots of driving.

I hope this wasn't too long.
Thanks again for all the love and support!