Back to Work, Back to School

Posted on September 23, 2017 by mommabear0208

Both Lily and I transitioned easily back into our routines. I returned to work with a clear head about the direction we were/likely are going in with the feeding tube. Of course my kid upended it all by devouring most everything in her sight after the appointment with her pediatric GI (who recommended a small feeding tube). So for now, the decision is still somewhat up in the air. She’s still eating well. But I’ve done my research, I’ve written out the pros/cons and I’m as comfortable as can be about this situation.

Which is a good thing as it’s been a crazy few weeks at the office. Thankfully my team held things together while I was out. Actually they did more than hold things together – they did a phenomenal job managing some really complex projects that arose during my absence. And the projects have kept piling up since my return. Currently my team is running multiple community fundraisers and assistance programs for employees who have been severely impacted by these recent disasters (the company I work for operates in over 100 countries and 500 cities). Additionally we hosted Cherie Blair (former Prime Minister Tony Blair’s wife and kick-ass advocate for women’s rights) for a conversation and cocktails the day after the earthquake in Mexico. It’s been both a a sad and inspirational time at work. So much devastation but also so much support for our employees (which my team and I are managing). And to top it off, a cool panel session with some awesome ladies.

As for Lily – she continues to have her ups and downs. But is loving school and her therapies. I’m getting notes from her teachers and therapists that she is blowing them away. I’m so proud of this hard-working kid.

From top to bottom:

Mom working hard
Lily letting me know what she thinks about Rett Syndrome on a bad day
Excited about the first day of first grade!

Scenes from a beach vacation

Posted on August 23, 2017 by mommabear0208

Holy cow have we been having fun! From the Cape to Shelter Island, Lily and I have been surrounded by laughter and love – from old friends to new.

Here are a few photos which capture some of our adventures. If you want to see more, let me know. As usual, I took too many pictures of this sweet kiddo.

Our first full day in the Cape (with the Bernsteins!) was your typical romantic New England weather: chilly and gray! We spent the day reading books at the beach house and in the library. Hint: the Wellfleet library has an amazing kids section that rivals the old FAO Schwartz on 5th Ave – complete with costumes and stuffed animals.

We also had a lot of fun using the Snapchat filters once all the books were read.

The next day, the clouds parted and we went to the beach. While we didn’t find any mermaids, we did see some seals!

And the following day was more of the same: perfect company, perfect weather and perfect waves! The ocean was too cold for Lily to go in and it was almost too cold for me. But I braved it and jumped in.

The next day, we embarked on the second part of our beach vacation: Shelter Island!! Lily and I had the most fun time riding the Cross Island Ferry on our journey. I think we ran around that big boat at least 3 times. And of course, Lily made a bunch of new friends on the ferry.

We spent a week in total at Shelter (thanks to the Nelsons!!!). The weather was beautiful and the beaches were lovely.

Our first day out there we met up with the Rogers family in New Suffolk to watch the boat races, which has become an annual tradition. This year we had the addition of Elaine, Lily’s SLP and our family friend.

Lily and I took a much needed break from the sun on Friday and met up with Stephen (who came out for the weekend) to ride the carousel in Greenport. We also had the opportunity to see our friends Maren and Ben DeSantis too.

On Saturday and Sunday we hit the beach with the Nelson-Dollar clan. We spent both days searching for mermaids but only found mermaid toenails (i.e. magical looking shells that come in all colors of the rainbow).

And on Monday, Lily and I watched the eclipse, borrowing eclipse sunglasses from our newfound friends. I’m telling you – this kid is super social.

Lily is now on the second part of her vacation – the Poconos with her dad. I’m also on the second part of my time-off – the Sivananda yoga ranch upstate. I’m going to miss my sweetie so much but I’m looking forward to getting some down-time. I’ve got some big decisions to make about Lily and need to process it. Though we had a great trip, her appetite was a big struggle. And even when she was hungry and wanting to eat, it would take upwards of an hour for her to have a meal. It’s not been heartening. But I’m grateful to have had the time to get to learn as much as I can about my kids struggles, and her abilities.

Om Namah Sivaya.

Some good news

Posted on July 28, 2017 by mommabear0208

The week started out tough. Lily got a ‘failure to thrive’ diagnosis on Monday from the nephrologist. This is like getting (as one wise Rett momma so eloquently put it) a punch in the gut. Hearing those words, especially as a mom, well… the guilt and disappointment and anger is indescribable. I walked away from that appointment trying to not feel like a total failure as a mother. Thankfully my kid was being extra sweet and silly which helped shake me out of my funk.

The next day I got a video from school showing Lily holding onto the handlebars for close to 40 seconds while riding a bike. This is HUGE. Her hand function has slowly been improving over the past few weeks. I can’t post videos to this site so you’ll have to settle for a screenshot instead. If you’re on Facebook, I’ll be posting the full video shortly.

And then this morning, we had to see her pediatrician to get his signature for a Medicaid form. They do not make it easy to get, nor maintain Medicaid but holy cow am I glad that Trumpcare failed because I’m not sure what we’d do without it. But I digress…. We did a weigh-in at the same scale we used 5 weeks ago and according to the scale, she gained 2 pounds. It’s taken a lot of effort – and patience – for both Lily and her nannies, therapists, teachers, parents, etc. to get here. And we’re not done yet. She’s still 3 pounds away from where she was 6 months ago but she’s starting to gain it back.

How did she gain 2 pounds in 5 weeks? Well, Lily’s been on a steady diet of home-made mac-n-cheese, duck, tater tots, cupcakes, avocados, yogurt, pudding and pizza. I’m still slipping in super healthy stuff for her morning smoothies to ensure she’s getting the vitamins and minerals her body needs. But she’s basically eating anything and everything she wants.

In two weeks we are seeing the GI doctor to discuss further this ‘failure to thrive’ issue but I’m hopeful that the conversation will be a mostly positive one.

Holding on to the handlebars like a pro!

A great day!

Posted on July 25, 2017 by mommabear0208

I just got this note from Lily’s teacher. After yesterday (we were at the hospital for a scheduled appointment for most of the afternoon – she was a champ throughout), this kid deserved to have a great day!

Lily had a great day! She was hungry at the end of the day, and was drinking more of her smoothie as she walked out of class. She may want a snack when communication camp is over. I gave her a blueberry cereal bar, which she loved (recorded it in her food diary). She squealed with delight when we brought it out. At recess, she was walking up to kids from other classes and giving big smiles. It was awesome! She was using her hands a lot today. With an elbow tap, she waved several times (at Ally and then again at the student in the attached picture, Jamie). She also gave a high five. She kept her hands in the shaving cream without support for I think 27 seconds! She also was playing with a switch operated toy in which you push a button to make a toy dog walk/bark. She was laughing and working hard. Great job sorting during math and working on letter ID activities as well.

I’m so proud of this kid!

Seven Lessons I’ve Learned From Rett Syndrome

Posted on July 19, 2017 by mommabear0208

I know what you’re thinking… you’ve not heard from me in ages and then within 24 hours, I post three things.

Well they say that all (good or bad? I can’t remember the saying) things come in three so this will likely be my last one for a while. And it’s really just a repost of what another wise momma wrote. It resonated with me so much that I wanted to share it here.

Thank you momma-warrior Joanne for sharing your insights, specifically the ones on bizarre symptoms and respite. She has nailed it with her commentary on what Rett Syndrome has taught her. Like I said in my earlier post, it’s a hell of a disorder.