Microcephaly Awareness Day!

One of the defining features of PCH is progressive microcephaly. Microcephaly means having a small head, and progressive suggests that it will get more pronounced with time. It's not as if her head is shrinking or anything (I can't help but think of that last scene from Beetlejuice with the shrunken head guy in the waiting room); it's just that her head grows at a VERY slow rate so that as the rest of her body grows at a normal rate her head will continue to look smaller and smaller on her body.

In fact, it really is just in the past few months that I have begun to think that it is becoming more obvious. At warm water therapy last week, the therapist noted that at first glance it looked as if Norah's head was about the size of a 6 month old's. After looking at the growth charts, she was spot on. The 50th percentile for head circumference in a 6 month old is 44.03 cm, and last week at her genetics appointment Norah's head measured at 44 cm (17.32 inches). Again, looking at the growth charts, the 50th percentile for a 26.5 month old is 47.78 cm (18.81 inches). The 3rd percentile is 45.03 cm (17.73 inches). So Norah falls almost half an inch below the 3rd percentile.

To put this in context with the 'progressive' part of the microcephaly, when Norah was born she was in the 7th percentile for head circumference (Sidenote: Interestingly, not a single nurse or doctor mentioned this to me--I have to be honest, it seems noteworthy! But I didn't find out until two weeks ago when I was reading through some of her medical records sent to me by the social worker from the hospital to support our medicaid waiver application [different post, coming soon!]). So, while doctors want to see kids following upward curves on these growth charts, Norah is showing a slow downward slope.

I truly have no idea how much more Norah's head will grow, or when it will stop growing all together, but for today (and every day) we will celebrate her for who she is and spread awareness of this surprisingly common disorder. Microcephaly affects about 2.5% of the population and has a wide variety of causes. Check out this link from the Mayo Clinic to learn more: http://www.mayoclinic.com/health/microcephaly/DS01169

Here's Norah wearing yellow to raise awareness for microcephaly! Her pose, framing her head, is quite apropos, if I do say so myself :)

A good day!

Despite several pretty intense seizures, today has been a great day! Primarily because we got to pick up Norah's wheelchair/stroller. We started the process in February, and 4 denials (two from our primary insurance, two from our secondary insurance), a long appeal process, and many phone calls later, we got to take it home today! 

It came fit to her measurements from February, so it was pretty cool to see how much our little lady has grown. Her femur alone grew 1.5 inches! Way to go, Norah! Failure to thrive, my butt. 

Of course, Norah had to immediately brand the stroller. Shortly after getting in, she had a big seizure and puked up all the carrots I had given her for a pre-breakfast snack. Thank goodness for black fabric on the seat! It also allowed us to see how great the forward-tilting seat function is. With the butterfly chest strap in place, we can tilt her forward and let the vomit fall out of her mouth so she doesn't suck it back into her lungs. That's just one of the awesome features this chair offers. My favorite, I think, is that I can switch the seat to be rear facing, so I can see her when we're on a walk. Yay! 

The thing weighs close to 40 pounds, but the seat can come out of the base, so I should only have to lift about 20 pounds at a time...and Norah is a bit heavier than that now (21.5 pounds...woo hoo!), so it shouldn't be too bad. A good upper body workout, at least. 

Getting the chair also made me get my butt in gear about asking for a handicapped tag for our car. I called the doctor and it's as easy as them filling out a piece of paper and sending it to me. Once I get it, I can take it to the SOS (Michigan-speak for DMV) and get the tag. For some reason, I thought it would be much more difficult than that. Apparently I could have gotten one a long time ago, but I felt weird having one before we had the wheelchair, for some reason. (This would be a great discussion topic for a Disability Studies class!)

Can't wait to take our girl out for a spin in her new wheels this weekend! 

Asking for help

Norah woke up happy today--hooray! I love hearing that little squeal from her crib when she wakes up and looks around and is just happy to start the day. On these good days, we get to see her happy feet. She does this little bicycle move and pulls up her head (what strong abs!!) and just grins and squeals. It's seriously adorable. We all live for these days :)

It's about time for a good day. We've had several notso great days in the past weeks. Yesterday ended up well, but the morning was just awful and I ended up calling in Janel (amazing nanny) on her day off. We are so lucky to have her. I texted and said it was one of those days that I just didn't feel like I could do it on my own (Brian was at work), and she immediately hopped in the shower and headed over. She was there within the hour (she lives 30 minutes away). 

Janel with her girls (Norah and the other little girl she cares

 for the 2nd half of the day--they got to spend a lot of time

 together this summer, and Norah LOVED it!)

Before I called Janel, Norah had a giant seizure that lasted over a minute and a half (which is LONG for her). Poor baby. After a rough afternoon the day before (coughing/vomiting/bouts of not breathing/suction machine for an hour), I was at my wits end. I sat on the couch with her after the seizure and just cried. I have to say, I am so glad that I have gotten over feeling bad when I need to ask for help. Because once I pulled myself together a bit and dried the tears, I texted Janel. Sometimes we just need help! And thank goodness we are lucky enough to have an amazing support system--I know that many people do not have that luxury.

Mama Bears

I am one lucky lady. I am reminded of this daily for many reasons. But today I am feeling so grateful for my amazing sister and mother, who took it upon themselves to make sure my experience at Trader Joe's did not go unheard.

Here is the response from the manager of the store. Very sincere. I'll call him later today.

"Dear Liz,

I'm writing to apologize for the absolutely unacceptable experience you had in our store the other day.  I spoke with your sister a while ago and she shared with me what had happened.  I can't begin to tell you how sorry I am about the total lack of service or help that you received with the situation while our crew member did absolutely nothing to help.  I wouldn't expect that lack of caring anywhere, especially here at Trader Joe's.  We train our crew to go out of their way to give a great customer experience and it is very disconcerting to me how this could happen.

I appreciate that your sister contacted me so I would have the opportunity to offer my sincerest apology.  I would like the chance to apologize to you either by phone or in person if you would even consider coming back after what happened.  Our phone number here is (xxx) xxx-xxxx.

Once again, I would like to extend my sincerest apologies for the experience you and your daughter had at our store.

Brent Berner
Captain Ann Arbor, MI"

My mom has taken it upon herself to contact the president of the company. Wow. We've gotta love our Mama Bears, and embrace the Mama Bears within ourselves! :) 

Blank stares

Well I know I said I'm fairly immune to Norah's vomiting now, but that applies mostly to when we're in the comfort of our own home. Public vomiting is still difficult for me and part of the reason we don't go out very much.

Norah had a bad day today. She was sick overnight and woke up vomiting, which was promptly followed by a seizure. This pattern continued throughout the day. This has been happening more and more lately. It's scary. She's losing weight and I don't know how to help her. Talk about a helpless feeling. The g-tube (I think I forgot to mention that she had surgery at 11 months to place a feeding tube) can only help so much. It's great for making sure she stays hydrated but I can't force the food to stay down. I can only control what goes in. I will write more later about this, because it's a big issue right now and I'm pretty set on switching to what's called a blended diet. I hear liquid diets are all the rage right now, so naturally Norah needs to be in on the fad. More later.

Anyway, back to public vomiting. It was a crazy day today and after I picked Norah up from a friend's house (nanny kept Norah late for me and took her back to the house of the other family she nannies for), I decided to run into Trader Joe's for a few quick things. I literally needed 3 items. I was moving as quickly as possible, knowing that Norah was having a hard time keeping food in, and as I was picking up the third item I heard the burp and get the heave. "No, no, no...shit!"  Fortunately it hit the floor and not a person or merchandise. Mostly it was all down my front, my back, and Norah. Ugh. The worst part was that an employee was stocking the shelves close by and watched the whole thing go down. Did she offer help? Nope. She just stared, blankly, while I struggled to put down my basket and rush to the bathroom. It's hard to not feel embarrassed or ashamed. I did nothing wrong. But I could bet we were part of that girl's stories to her partner or roommate tonight. "Ew, guess what happened at work today? Some lady came into the store with her child who was OBVIOUSLY sick and her kid threw up all over the floor. Why would she bring her kid out and expose people?" Now this may seem paranoid but admit it, we have all said things like that before. I just hate that everyone thinks that Norah is sick. I hate the way people may think I'm a bad mom. I feel a pull to stop and explain that Norah is not sick with a contagious disease. But I don't. Who has time for that? After all, I was covered in puke, Norah was covered in puke, and I just wanted to buy my 3 things and go home.  I of course cleaned up her mess first, over which said employee had placed a giant cardboard box that she had just emptied. She was still there, staring blankly as I held Norah, and struggled to lean down and wipe the floor.  Not a word. Not a smile. Not even a look of pity. Again, UGH.

I'd like to think, in fact I know, I would offer to help. I offer my help to people whenever I get the chance because I know it's nice and I know it's appreciated. I truly think people don't know what to do in those situations but now that I'm on the other side, I jump up immediately. I hope those of you reading will try to make that a habit too. It's okay to help a stranger. It really is. We appreciate it more than you know. And isn't it better to get to be the person in someone's story who went out of their way to help you than to be the person in the story who just blankly stared? I sure think so.