Advocate and mother

Posted on June 20, 2014 by mommabear0208

Tomorrow is a very big day.

It’s the day that we discuss the kinds of special services Lily is going to need in preschool. I’ve already presented the district administrator (decision-maker) with a letter from the Rett specialist emphasizing the need for certain services. Thankfully he complied with much of what was requested. And he agreed to the preschool location, and to the classroom size. BUT. But…

There are additional things that MUST be put into her IEP (individualized service plan for those of you not familiar with special needs lingo) which have not yet been granted.

It pains me as a mother to push for my child to have hour after hour of therapy. I want her to enjoy preschool and to learn to socialize. I am grateful for the NY Early Intervention program she’s participated in these past (almost) two years but it definitely lacks in the social skills enhancement category. It is all one-on-one instruction (and for Lily, that means 30 hours of one-on-one instruction). Preschool is going to be fantastic for her as she is such a curious and smart little person and is definitely interested in others. But she can only take it so far as she can’t speak (yet). And she doesn’t have great hand use. So – imagine trying to have a conversation or bond with someone when you can’t talk or use your hands. My sweetie.

I digress. Where was I? Oh yes. Basically tomorrow I need to advocate for Lily to get A LOT of services. A lot. Which means that she will be getting pulled out of the classroom many times, on a daily basis, missing so much of the socialization (and beauty) of preschool.

I want my sweetie to relax and enjoy and not have to work so hard all the time. But I know that if we don’t keep up with all of her therapies (and then some), she will regress. We see it every few weeks when the therapists try to pull away from a program which Lily has mastered to get her to learn something new. A few days, or weeks later when we go back to the old program, she can’t do it. She has to be retaught. These programs are things like shaking a maraca, brushing her hair, going up and down stairs.

It is heartbreaking. But Lily always relearns it. Relatively quickly.

Hence the need for intensive, constant services. I wonder when, if, it will ever end for her. We’ve been so lucky with her therapists that they are so loving and kind and make learning fun (most of the time). I pray that this will continue through her school years.

I pray that we find a cure soon so she won’t have to struggle so much.

And please say a prayer (or send a positive vibe – whichever you prefer) my way tomorrow as I’m feeling really sad that this meeting even needs to happen.

Love,

C and L

Preparing for preschool. Learning ‘quiet hands’ while watching Zac Effron (her favorite).

Me, tomorrow.

The ‘bruty’ of life

Posted on May 30, 2014 by mommabear0208

A few months ago when I was in London, I had a chance to catch up with a dear friend who has had her fair share of struggles. Over tapas and red wine, we talked about how life can be both beautiful and brutal at the same time. Hence, the word ‘brutiful’. I can’t take credit for this word. Another mommy blogger came up with it. But wow – so fitting. And so true.

The past few years, and especially months have been both of these things – beautiful and brutal. Every day I watch my sweet Lily and am amazed at how loving and kind and sweet and smart and resilient she is. And then I get bogged down with her diagnosis – the seizures (she had her very first seizure last week), the fears of when/if other Rett monster symptoms will poke its head out, the struggles she has to deal with on a daily basis. It is brutal. And it knocks the wind right out of me.

But then I look at my little girl and shake myself out of my gloom and remind myself that she has so much potential. And she is perfect. Just as she is.

I have been accused of being overly optimistic about my sweet angel. But this is not the case. I am well aware of the gravity of this diagnosis. But I refuse to live my life in a state of brutality. I choose to focus on the hope, the potential, the beauty.

Cousins – one of the greatest gifts from God.

Her second-most favorite place to be; the first being her mommy’s lap.

The belle of the ball

Posted on April 30, 2014 by mommabear0208

Wow, last week we were social butterflies, entertaining guests and party-hopping. Not so easy for this introvert. Lily is the outgoing one on this team.

On Thursday morning, I brought L into the office for ‘take your kids to work day’. She charmed everyone from the CEO to the mailroom clerk. And it was very obvious that she wasn’t interested in a desk job (see below).

When we got home from work, Grandma was there! She had just arrived from Florida and was staying the weekend. When the elevator opened to our apartment, Lily ran to her and immediately gave her hugs and kisses, like no time had passed.

Thursday evening, after Mom, Leslie and I returned from the Rett Fundraiser (which was both lovely and bittersweet), Lily decided that she wanted to have a party too. So she entertained us all by doing her Lily thing – giggling, dancing and giving plenty of kisses.

On Friday, we met up with one of Lily’s therapists for a playdate at Bounce U (a huge indoor bounce-house/playground). HOLY COW. I’m not sure who had more fun, me or her. Seriously, we were both laughing and bouncing and giggling so much. L (and I) had to take a 3 hour nap when we got home!

Saturday night was party-time in Greenpoint with the Salerno’s. Earlier in the day, Lily had somehow figured out how to turn on the photobooth application on my computer and so we made sure to take plenty of pictures with our family. As you can see from the shots, someone was having a very good time.

We have yet another busy week. Yesterday was swim class (she did awesome), tomorrow we go in for the assitive eye gaze technology evaluation (more soon on that), and Friday we visit one last preschool. This is all on top of her 30 hours a week of in-home therapy. I’m not joking when I tell people that she’s busier than my CEO.

April 24th fundraising event for Rett Syndrome – will YOU be there?

Posted on April 14, 2014 by mommabear0208

Hi family and friends,

It’s been a challenging few weeks for me. That last hospital visit really took the wind out of my sails. I’ve been struggling with a cold/cough/exhaustion for a while now. But I’m doing my best to stay healthy. I even started putting bentonite clay in my water for additional minerals and support (you may think I’m crazy but it is helping me). I need all the energy I can get to keep up with Lily, who is being VERY opinionated and active these days. She is SUCH a toddler. But all of this is excellent, excellent news.

She and I have been doing a lot of reading (‘The Wheels on the Bus’ is her current favorite book) and her word approximations are mind-blowing. Yesterday she said ‘horsie’, ‘piggie’, ‘birdie’, ‘ready’, ”ommy’ (for mommy), ‘omlette’, ‘berry’ ‘bay’. Mind-blowing. This kid is going to talk. I am convinced of it.

The other thing which has been keeping me busy (on top of work, managing Lily’s calendar and giggling with Lily) is helping to organize Rett fundraisers… (You all know that I’m eventually getting on the board of either the IRSF or the RSRT one of these days!). Here are a few upcoming events which I’m putting my energy behind:

‘Reach for the Stars NYC’, taking place in TriBeCa on April 24^th. From the Team Lily contingency, I will be there, as will Grandma (who is making a guest appearance from Florida), Leslie (one of my besties from grad school who is coming from Toronto on her way back to DC) and a slew of other friends. It should be a lovely evening – cocktails and canapés at a beautiful venue. If you’re in the NY metro area, I’d LOVE to see you there. You can either view the invitation to the left or click here.

‘Strollathon Hoboken‘ is taking place on October 5th and I’m gathering a team of work colleagues (to get my Company’s financial support), family and friends to come and walk to raise funds, and awareness of Rett Syndrome. FYI – we may be organizing a Team Lily family and friends party after the walk. More soon on this (I’m in the process of creating a webpage for the event)! For you relatives outside of the NY metro area, put this date in your calendar!

‘Reverse Rett NYC’ is taking place at Capitale in Manhattan on November 3, 2014. I have a meeting with the executive director or the Rett Syndrome Research Trust this week and it’s likely I’ll be a member of the organizing committee.

I really do hope to see you at any one of these upcoming events. It would mean so much to me, and to Lily.

Sending love and joy (and a few pics from over the weekend),

C & L

the Janis Joplin look (the 60’s), the bobby sock look (the 50’s), and the valley girl look (the 80’s)

Feeling grateful, and sad, but mostly grateful…

Posted on March 23, 2014 by mommabear0208

Hi family and friends,

Sorry for the long silence. It’s been a very busy few weeks. Doctors visits, preschool visits, a quick trip to London (just me, not L), and the general busyness of my job and life with Lily… time seems to slip away.

But at least it’s spring! (I’m going to ignore that it’s supposed to snow on Tuesday).

Lily has been great. She is going through a really strong phase where she’s not having any troubles holding her bottle, or pulling herself up to stand (which she did twice yesterday on my friend Stefanie’s cushy sofa – I was awestruck). She’s trotting around (almost running) and going on long walks with her momma through the park.

To many of you this may sound like silly things to be proud of. But for Lily, especially given her Rett diagnosis, these inchstones* are miracles. Truly.

(*This is a commonly used special needs momma phrase.)

On March 7^th, we met with Dr. Sasha Dujkic, a neurologist who has dedicated her life to Rett Syndrome research and advocacy. Dr. D spent three hours with us that day. Can you believe that? A doctor who spends hours with you, talking to you, answering your questions, explaining to you this complex genetic disorder…. have you ever heard of such a thing? (Other than my cousin Ann, of course!)

There was so much to take in that day… I’m still wrapping my head around it. Will try to share with you the highlights:

An overwhelming majority of girls with Rett Syndrome can’t walk, talk or use their hands in a meaningful way. Most need feeding tubes and many have respiratory issues.
After Dr. D evaluated Lily, she said that Lily is likely done with the major regressive phase and that she will continue to walk (horrah!) and that her overall health looks great. There is a list of about 10 specialists who work at the Rett Center (from orthopedic surgeons to cardiologists) and Dr. D said that Lily won’t need to see the majority of them. HUGE sigh of relief.
I asked about Lily’s specific mutation and if Dr. D could read anything into it (I had heard from other Rett mommas that you could get a better understanding the impact of the disorder on your girl from the actual genetic mutation) and Dr. D said that this is pretty inconclusive. And then explained that Lily has the more severe form of the mutation which for all intents and purposes would mean that she would have the ‘classic Rett’ (no walking, talking, meaningful hand use) but it hasn’t presented that way with Lily. Theory squashed.
Dr. D said Lily will likely never talk or write. This is where the doctor and I disagree. This little girl is going to talk and she is going to write (you should see some of the art she’s been creating lately!). Dr. D doesn’t know me… Obviously.
The big struggle with all girls with Rett, including Lily, is the issue of apraxia. Whole body apraxia. What is apraxia you ask? A very good question, and here is the answer:
Apraxia (from Greek praxis, an act, work, or deed) is the inability to execute learned purposeful movements, despite having the desire and the physical capacity to perform the movements. Apraxia is an acquired disorder of motor planning, but is not caused by incoordination, sensory loss, or failure to comprehend simple commands. It is caused by damage to specific areas of the cerebrum.
Apraxia impacts everything from her ability to form words to her ability to poop, and everything in between. She has the desire to do it all and actually has all of the ‘hardware’ to do it, but her brain and body aren’t talking to each other effectively. It’s more of a ‘software’ issue, to use computer terminology.
Girls with Rett Syndrome are literally trapped in their own bodies. They often have overly intelligent minds. And Lily is just so smart. I’m not just saying this because I’m her mom. Therapists and doctors have said this from the very beginning about her.
So how do we tap into this brilliant mind of hers? Well, assistive eye gaze technology is something she was exposed to at the hospital visit, which she took to quite quickly. My cousin Maria (who graciously came with us to the appointment) told me that within 5 minutes, Lily was asking for blueberries, using her eyes! Pretty amazing.

Next steps with the Rett doctor – schedule a visit with the following specialists – GI doc (for Lily’s chronic constipation which is typical of Rett sweeties), dentist (she needs a cleaning and they have a dentist on staff there as dental issues can arise for these sweet girls), and speech therapist (to learn more about the eye gaze technology and other forms of communication). Also Dr. D has offered to speak to the directors of the preschools Lily may attend. It will be very important for Lily to be in a setting with verbal, social kids. Lastly, we will have a follow-up appointment with her in 6 months.

In the meantime, Lily and I will continue to learn, giggle and eat lots of berries!

Love,

C and L