Monday, September 24, 2012

Equilibrium Shift

Weeks ago, after our appointment with the ortho doc and hand specialist, we came home from Children's free from specialist appointments until the baby turns a year old! We did have one scheduled with an opthamologist to talk about her clogged tear ducts, but that was no big deal. After such a whirlwind pregnancy with tons of appointments and sonograms, and then a bunch of specialist appointments and getting set up with OT through the county, it seemed like the first 6 months of her life were pretty busy with doctors and such. So, having nothing on the calendar for months and months was pretty awesome.

At the opthamologist's office, I mentioned that sometimes her left eye seems crossed, but I know that is normal for babies to some extent, so I was not sure if it was a big deal or not. Turns out, her left eye is fine. Her right eye is the issue - her right eye has very restricted movement. She cannot move her right eye from side to side. The good news is in terms of eye issues, Duane Syndrome is pretty easy to deal with because there is no treatment. The baby will learn how to turn her head side to side to compensate for this issue. Most people will not even notice there is an issue. (Please note, Andy Cohen of the Real Housewives franchise has something similar and I never noticed until I read about it in his book. Which, btw, is great) There is no surgery, no patch, no glasses.

The problem - for me - is that this came out of left field. I felt like we knew what was going on with the baby. I felt like we had done the tests and the x-rays and the specialist appointments and had ruled out so many issues. I thought we knew the extent of Maggie's needs. Stupid really because how can you ever know? Especially in those first few years, when things change so rapidly. But, stupid or not, I felt in the know and I felt safe.

The reason this hit me like a ton of bricks? Duane Syndrome is caused when a specific cranial nerve does not develop. If this nerve didn't develop, what else didn't develop? What else is lurking behind the scenes? What else do we not know? This news truly was an equilibrium shift for me. I am more wary and concerned. Things I might otherwise write off (like, lack of consonant sounds, I wrote off as being due to the two older kids talking non-stop), I will not write off, I will worry about and focus on trying to identify if there is a bigger issue. Is that better? Maybe. Maybe getting speech therapy at a year is better than getting it at two years, when the problem is more obvious. Maybe not. Maybe being worried that every appointment is going to bring more shocking news is not good for our mental state. But, it is what it is. We don't know what we don't know. And eventually I will slip back into calmness (I hope). For now, I will continue to be wary and hope for the best.

And, truly, in terms of issues, this was the best. I cannot - and should not - complain because a relatively minor eye problem that requires no surgeries or anything is probably the best kind of issue to have. My issue is not with that, but with my own emotions as a result of being hit with this shocker.

Thanks for listening!

Friday, September 21, 2012

The story of our new house

So we started looking for a new house back in May. Spent countless hours on Redfin, a couple of long days out with our realtor, saw probably 15-20 houses. It was like freaking Goldilocks - too big, too small a yard, horribly configured finished basements, too close together, too close to the main road, development missing community pool, etc. We knew the area we wanted to move to, but there are literally 20+ housing communities out this way. They are all family oriented and most of them are great, but of course having so many houses means more traffic getting to the area and then down the connector roads. Picking the perfect house was trying.

So, the perfect house found us! My mom actually found it for us, inadvertently. She was out estate-sale-ing in a neighborhood we really liked, which had only a few houses for sale and they were at the top (or possibly over the top) of our budget. She started chatting with the owners and found out that the owner's mom died and they were selling her stuff. My mom mentioned our interest in the neighborhood, the wife invited her in for a tour, and my mom left them her number. The house needed a LOT of TLC! It was a wreck inside - stuff everywhere (they were moving it out), some holes needing patching, toilet paper rolls off the wall, etc. But, a great configuration. So a couple weeks went by with no call from this couple. We continued to look at houses with our realtor. We made a list of 10 houses to see one week and then the night before we were supposed to go out with the realtor all but the last two on our list were still available. It seemed everything was going like hot cakes and we couldn't think on anything.

Finally the owner of our house called. He felt it was Divine Providence that my mom talked to him and he felt moved by the experience! He wanted us to come look at the house and let him know if we were interested. He is a newly ordained minister in an Anglican church and has been struggling with what to do with this house. He bought it, moved his mom in when she got sick, met a woman at work, got involved with a church up near work and this woman's house, moved in with and married her, and then his mom died a few years ago. He has been coming down weekly to cut the grass and whatnot, but does not live here. He felt it was time to pass this great house on to a family that would care for it and really take advantage of the wonderful neighborhood. Through a series of meetings with the owner, we worked out the price and the details. Our realtor represented us, but guided the owner through the process so he would not have to pay realtor fees to someone else. He wanted us to have the house. The night he and his wife accepted our offer, they had us over to talk about it, and his wife was crying - tears of JOY! - for us, for our family, and for her family. They could leave this albatross behind and move on with their life, and we could have a wonderful house and yard for ours.

Divine Providence, indeed.

Thanks for listening!

Thursday, September 20, 2012

Specialists and Doctors, oh my!

When the baby was about a month old, we started up with the specialist appointments. We are lucky enough to live within a relatively short driving distance from Children's National Medical Center in DC. When the radiologist first discovered there was an issue, we were sent to CNMC and saw the top geneticist. Thankfully, we were able to get in to see him again so soon after her birth. What amazes me the most about Children's is how accommodating they are. The drive is maybe an hour to an hour and a half from our house, yet they always try and cram as much in as they can so you do not feel like you wasted the day!

In February, we went for the day - we saw the geneticist, the orthopedic doctor, and had X-Rays and bloodwork done. The ortho doc indicated we should come back in about 6 months to see her, but that the baby's primary specialist will be the Hand Specialist (who, thankfully, works closer to our house!!!). We went back for a visit to the geneticist around 3 months and coincidentally happened to be there on a Friday, which is the day the neuro developmental specialist is on a rotation with the geneticist, so we got a two for one in that office (except not really because they billed us for the co-pay after the visit). What they did not bill us for was the time the geneticist took with not only the baby, but with all of the kids. He did a thorough exam of the baby, but also talked to and looked at the other kids. He asked about the munchkin's "short stature" and asked to be copied on her CNMC reports. He told us to bring the other kids to all the visits. He just genuinely cares. And that is freaking amazing!!!

Fast forward another few months and we are back - around 6 months. The geneticist wants us to get a sonogram of her sacral dimple, but says it can wait a few weeks for when we come in for the ortho appointment - unfortunately, that time we could not do it all at once. We saw the development doc again and she had presents for the older girls :) The bloodwork came back normal, there are no "puffs" around her chormosomes suggesting Roberts Syndrome (this was a bit of a stretch as they only "symptom" she has is the phocomelia). In 5 or 10 years genetic testing will become more advanced and we will have more bloodwork and tests. But, for now, things are what they are and we do not have a label or a roadmap. We will just let the baby develop, work with the OTs and see what services she requires. In the meantime, there is no need for these frequent visits, so we are done with genetics until her first birthday!

A few weeks later we were back for the ortho appointment and to get updated x-rays. This one was tough - getting up early with all the kids in tow, driving downtown in rushour traffic, which of course included multiple accidents. The ortho doc came in, looked over the baby for all of 60 seconds, said "I still stand by what I said before, the hand specialist will be her primary specialist. No need for me to get X-rays". I thought my head might have exploded because hello, I did not take the morning off work to do this!!! Thankfully, she quickly followed up with, "it just so happens today is the day the hand specialist works from the DC location, let me track down her assistant." From there, it was a bit of a whirlwind. I ended up taking the whole day off, but once again, it was so worth it because CNMC is so great!!!

We got x-rays, we got a sonogram of the sacral dimple, we got more bloodwork done (for a deeper chromosomal analysis), the Hand Specialist fit us in for a visit with her, and we got a prescription for OT outside of the county provided services with a list of recommendations. And, we don't have to go back until the baby is about a year old! It was more than worth the trip. And the older kids were rewarded for their awesomeness by the staff of young adults that came into each waiting room with a cart full of games, arts and crafts, and coloring stuff. The girls played Candy Land, made bracelets, and colored pictures. They walk away with stickers and see the whole experience as fun.

I cannot say enough how blessed I feel to be a part of the CNMC family. These doctors, these administrators, they care - really, truly, care about the kids, about your role as a parent, about their job. It is a wonderful thing to feel so cared for when you are dealing with the unknowns of a special needs child!

Thanks for listening!