The first time we heard of CMV

I've mentioned CMV in passing in this blog but haven't done a post specifically on CMV. And there is a good reason I haven't - when I first started researching CMV it scared the daylights out of me. So, I stopped looking into it for a while and focused my attention on getting Emma the medical treatment we wanted (i.e., Cochlear Implants), the medical insurance we needed, and the therapy schedule in place - all of which, quite frankly, is a lot of work.

And then I came up for some air! Today I look at Emma and know in my heart that she will be just fine. I think about CMV and I still feel some heartache and worry, but I am at a much better place today than two years ago. I am now ready to talk about CMV and our experience with Emma.

I first want to talk about the first time we heard of this awful virus and will follow it up with another post on CMV and prevention. For now, here is our story:

When Julia was about a year old we were thrilled to find out that I was pregnant. How lucky we are! I had a feeling from the very beginning that we were having a girl and I was so happy that the would be so close in age. Sisters!

This pregnancy was a bit different. I was sick from almost the very beginning - morning sickness - that lasted for about 8 months. Yuck! I was also very, very tired. I thought it was because I was so sick and also the standard pregnancy tired. I would go to bed before 7pm each evening and sleep straight through until morning. This lasted for about 4 or 5 months and I pretty much just played with Julia a little bit, worked and slept. Then I started to feel better.

We agreed that we wanted to know the sex of the baby and were excited for the first ultrasound. Emma didn't cooperate and we left not knowing if she was a girl or boy. I figured my OB would send me for another ultrasound so there was still another shot to find out before the delivery. The ultrasound showed an echogenic bowel - basically some blood in the bowels. My OB assured me it was likely nothing to worry about and sent me for a 2D ultrasound with a specialist. Everything appeared normal at this ultrasound an we left knowing that Emma was a girl (YEAH!) and that everything measured just fine. We were very relieved and happily anticipated Emma's entrance.

Emma came a couple of days late and weighted in at 7lbs. 3oz.! The birth was - thankfully! - uneventful and our darling Emma was just perfect. We were anxious to get home. Before we left we learned that she failed her newborn hearing screening in her right ear. She passed her left ear. Everyone told us not to worry - this was common and is usually due to some excess fluid in the ear from the birth process and we should follow-up with another hearing test in about a month. I wasn't too worried since I figured at worst, she would still have one good ear to hear. We went home and started to settle into life as a family of four.

We followed-up with the hearing test and another test and another test and eventually realized that Emma is deaf. That really rocked our world! We found this out the day before Thanksgiving. I'll never forget that day. We had to follow-up the Monday after Thanksgiving for some confirmation tests but we were not expecting the diagnosis to change. I cried a lot that Thanksgiving season. Emma was the first deaf person in my life. I kept thinking when we aren't in a room she must feel so lonely since she can't hear us in the house. I held her and rocked her and didn't want to talk to anyone. In a couple of days I was ready to search the internet for options. I did a lot of research on cochlear implants and was excited about the technology. Then we went off to Orlando, FL for a vacation that was planned before Emma was born. I didn't feel like going, but it really was the best thing that could have happened. By the end of the vacation we had accepted that Emma was deaf and were looking forward to getting the cochlear implant (CI) process started.

When looking into CIs, I found that quite a few of the children had multiple disabilities. I wondered how those parents were handling that and thought I should stop worrying so much about Emma being deaf and thank God that she was only deaf. Everyone thought that Emma was deaf due to a genetic mutation (connexin 26) since she presented herself so well. She did have some reflux and back arching, but that didn't cause much concern. We met with the geneticist to determine the cause of Emma's deafness and he prescribed all the blood work to test for genetic reasons and then "threw in" the urine test for a virus since she did pass one ear in newborn screening and lost the hearing very quickly.

We had an MRI scheduled in early December to confirm that Emma had an intact auditory nerve - a requirment for a CI. The MRI showed an intact auditory nerve and also some concerning stuff with her brain. That REALLY threw me into a tailspin. What did that mean?

Our pediatrician called a neurologist and sent us over to see her the next week. We had found that it takes A LONG time to schedule specialists visits and that the parents usually schedule them, so when the pedi's office called to let me know of our apt. I started to know something was definitely not right. We saw the neurologist on Dec. 31 (Emma was almost 3 months old) and she told us that Emma tested positive for CMV and prepared us a bit that Emma might also have cerebral palsy, but she figured it would be a mild case. Huh? Excuse me? What happened to genetically deafened???? And what the heck is CMV? Cytomegalovirus? Can you spell that for me please? And that is how we first heard of CMV.

Emma's Birthday Slideshow - At Last!

I want to start a new tradition of making a slideshow of the past year's events for Julia's and Emma's birthday. Since this is the first slideshow, and since this was Emma's 2nd birthday, I included some photos from her first year, too. Enjoy!

Emma - It's amazing to me how much joy you bring to so many people's lives. Your smile lights up a room! Your sunny disposition is contagious. Thank you for showing us how to live life in the moment and enjoy each and every new milestone!

School shopping

Today we looked at a potential pre-school for Emma. It is a public school and has a fantastic reputation. It is the second school we visited and we were very impressed. The first was a private school associated with the local university that also has a fantastic reputation (and a hefty price tag!) that we loved. It just seems so surreal to me that we are looking at schools already.

Our early intervention coordinator has been discussing Emma's transition into the school system since she was 3 months old. I had just as hard a time then as I do now thinking of my baby entering pre-school at age 3. That just seems very young to me for her to go out into the world without me. It took me longer than that to enroll Julia into pre-school and she only goes 2 days/week. The schools we toured for Emma are full time, 5 days/week!

I feet a bit off after each school visit. Like my world is spinning on the wrong axis. When I was pregnant I never thought I would be looking at the special education departments of schools - let alone looking for them when my child is only two! Nothing prepared me for this - not the countless hours spent with specialists and therapists, not learning the "diagnosis" doctors use with Emma, not the parents I talked to who have also agonized over the transition to school.

And so I tour the schools with a certain detachment. I ask the right questions, nod at the appropriate moments, take it all in - but in my mind it's as if I'm touring the school for someone else's child. And when the tour is over, I feel a bit dizzy from the change in the earth's rotation and just need a while to have things return back to normal.

I'm still not so sure about starting school so soon. I am not sure why the system is such that children place out of early intervention at age 3 instead of at kindergarten age and enter into the school system to receive their therapy. It's almost as if the choice to enroll in pre-school is taken away from the parents when the child needs the therapy services to progress and the therapy services are only available from the school - unless, of course, you have a very generous insurance policy that pays for private therapy or a huge trust fund to pay for it yourself.

What I am sure of is this: Emma will LOVE school. She will probably have a HUGE smile on her face each day when she sees all her friends in class. All the teachers, aides and staff will fall in love with Emma and fall victim to her incredible charm. That Chris and I will do whatever it takes to make sure she goes to the school that is best for her. That I will cry on her first day.

So, over the next six months we will continue to school shop. My world will continue to temporarily spin backwards after each visit. And we will eventually make a decision. But for now, I think I'll continue to enjoy our special time together before Emma ventures out into the world without me.

Our Crazy Schedule

I was thinking today that our life is a bit hectic and characterized by a lot of running around. I keep thinking that it will calm down a lot once Emma starts pre-school, but I'm not sure it will. And, to be honest, I'm not really looking forward to Emma starting school - but that's still a year away and so I don't think about it too much.

Now, are you at the edge of your seat just wondering just how we usually spend our days? Well, you're in luck because I've put our typical weekly Fall schedule below. It does not include the multiple specialist, alternative therapies and doctor appointments because that would just make the week crazy (LOL!). This schedule is the best we've had so far, so I'm keeping my fingers crossed it doesn't change anytime soon.

Monday - Julia pre-school from 8:45am - 3pm, Emma 10am AV therapy, 11am PT, 4pm OT

Tuesday - Emma 8:30am speech, 10am Early childhood educator, Julia 6:30pm dance class

Wednesday - Julia pre-school from 8:45am - 3pm, Emma 9am AV, 10am PT, 4pm OT

Thursday - Emma 11:30am speech, 4pm OT

Friday - Emma 5pm therapeutic riding; day time is usually spend doing something FUN!

Saturday - Julia 8am or 9am soccer (will be replaced by swim lessons in the Winter)

1x/month - Teacher of the Deaf and Craniosacral therapy

Weekends - nothing but fun, fun, fun

The good thing is that nearly all of Emma's therapies are play-based which means she gets to have lots of fun while getting stronger. Julia gets to have fun at school for the days that Emma's therapies are outside the home and for the other days Emma's therapists are fantastic at including Julia in the sessions (or not, if Julia and I want to use that block of time for some Mommy/Julia quality time).

So now you have a basic idea of what we're up to - we're a busy crew, but are adding in more play dates and library story times to balance out all the adult interaction. No wonder I have a few photos of Emma just relaxing during the day to choose from for this post - complete with her ever-present smile! I wasn't as lucky for Julia who is always on the move so I picked my favorite soccer photo to post.

Emma is featured in the newspaper!

The Delaware News Journal printed an article today about The Center for Therapeutic Riding that featured Emma. We think the program at the Center is amazing and are so thrilled that we found them! I'm glad to see their program getting the recognition it deserves in the article and think that Kathleen Keane did a FANTASTIC job in capturing the magic that happens at the farm.

To read the article, Angels with Saddles, click here.

There isn't a photo of Emma on the internet article (but she is featured on the Front Page in the newspaper!), so I've included some photos of the girls from our visit last week. Notice that Emma is able to control her trunk a bit more and turn her body while keeping it upright to look around. Also, she is able to open her legs up so much more than when we started riding. Her legs are getting to the point where they are almost open enough to straddle Mercedes without Emma fussing.

We were especially lucky on Friday. There were a lot of cancellations/rescheduled riders so Julia was able to take a short spin around the farm with Mercedes. We also remembered to bring some carrots with us this week and Julia and Emma fed them to Mercedes for being such a wonderful pony.