The to-do lists are endless

Posted on August 2, 2016 by mommabear0208

My soul is hurting this week.

I’m still fighting for basic Medicaid services (like diapers, overnight respite, daytime respite) while trying to prepare (and not completely flip out) for Lily starting kindergarten next month.

I’ve had to postpone our move to the Upper West Side which means she will be in for quite a bus ride to and from school. So I need to make sure it’s as comfortable, and as safe, as possible. I’ve already gotten a doctors note requesting what must happen but trying to find the right person within the DOE to make this a reality is proving impossible.

Good news is that I’ve averted the ‘adaptive stroller’ issue for the bus but that was a research project and fight in its own right. And the fight is only half over.

There’s always so much to do. The lists I have written down, and in my head, are endless. So the idea of moving while all this is going on (and I’m not even adding the to-do’s from my job) makes my head reel.

At the top of these lists (other than bussing and Medicaid) is to get her new school up to speed with her abilities, and needs (they’ve never had a Rett sweetie nor do they have experience with the Tobii), get Lily acclimated to a new school with new kids and new teachers, find a few new home-based therapists to replace those that fall off after pre-k (hint: this is not easy), and remind myself that it is all going to work out. Deep breaths.

I wish I could say that Lily’s sleep has stabilized but that would be a lie. And the panic attacks, though less frequent for now, are still happening.

The upside? Lily is keeping me laughing with her silly antics. Yesterday she kept pulling down her Peppa Pig artwork from the wall. Shamekia the nanny initially thought it was an accident so kept pinning it back up. But after the third time she found it on the floor, she asked Lily ‘you don’t like Peppa Pig today?’ And Lily scrunched up her face in a recognizable look of disgust, which means ‘no.’ And then she giggled about it.

Why my child doesn’t like Peppa Pig all of a sudden is still unknown to us. But I love that she is always finding new ways to let us know what she likes, and doesn’t like.

If we (meaning me, Shamekia and/or her therapists) figure out why Peppa has turned into persona non grata, I will let you know. But for now, I will leave you with a visual of my kid admiring her art wall sans Peppa from earlier today.

Peppa pig in the doghouse.jpg

A visit to the library, with Teetee!

Posted on July 26, 2016 by mommabear0208

I didn’t mean to keep you all hanging from my last entry. I did take Lily to the library as she requested. But we had an extra special guest with us – Teetee Angela from Florida!!!

Initially Lily was enthralled with the library. We read a few books, tried to find a few new ones (Teetee and I thought the book Chicken Cheeks was hilarious; Lily was ambivalent) and flirted with the idea of taking her to the ‘get ready for kindergarten’ program that was serendipitously starting while we were there. However, at that point she had enough and we left.

We had such a great weekend with Teetee. Not only did we go to the library, but we went to Brooklyn Crab for lunch and went swimming at a friend’s pool where Lily had the time of her life. We were so sad when it came time for Teets to head back to Florida. Good thing we get to see her again in a few weeks!!

Don’t go Teetee Angela!

A visit from the tooth fairy

Posted on July 11, 2016 by mommabear0208

Was anyone else aware that on top of all the more well-known symptoms of Rett Syndrome (like loss of language, physical disabilities, breathing problems, severe anxiety, sleep disorders), there are so many lesser known ones, like excessive tartar buildup? Yup, my kid has that too. So what does it mean? We go to the dentist every 6 weeks for a cleaning.

Thankfully we’ve found a wonderful dentist who puts Lily completely at ease. For example, the last time we were there for a cleaning, we had to get her two bottom front teeth pulled (her baby teeth had popped up behind them and were there for a while). This kid didn’t cry once – not when they gave her the novocaine. Not even when they pulled her teeth. I cried. But not her.

Earlier that morning, I explained to her what was going to happen. And I told her that if we put her two baby teeth under her pillow, the tooth fairy will come. She became very excited.

That evening, she and one of her therapists had a conversation about it and they wrote a letter to the tooth fairy. All the words underlined were her exact words on the Tobii. The tooth fairy found it when she was picking up her baby teeth and putting money under her pillow. And it made this tooth fairy extremely proud!!!

Graduation!

Posted on July 11, 2016 by mommabear0208

I’m such a sucker. Of course I had to buy the ridiculous preschool graduation photo. I mean, it’s the cutest thing in the world. Second to her class photo, which was taken only a few months before.

It’s been a quick two years for us. Lily has grown so much, both physically (at least 5 or 6 inches) and intellectually (see next blog post). We’re going to miss that little cocoon of a preschool. The teachers, the para, the therapists, even the administrators, are all amazing there.

And I was so touched when the principal asked me to give the preschool commencement address. I wasn’t quite sure what I was going to talk about but I knew it had something to do with all of the wonderful people I have met, because of Lily. Thankfully my little speech went off without a hitch.

However, the run-up to the graduation was touch and go. I wasn’t even sure Lily was going to be well enough to attend. A week or so prior, her appetite went. Her sleep meds stopped working (again). She started having severe panic attacks. And she was getting clumsier and weaker. It was a scary period. The morning of graduation, I wasn’t sure whether to take her to the ER or to school.

Thankfully she woke up that morning feeling much better. She even managed to have a little bit of her smoothie. Shamekia (her beloved nanny) met us at our home that morning and helped us get to school. Lily did not want to miss graduation. She had practiced so much. And you should have seen her up on that stage, dancing and laughing and feeling like a star. It was a beautiful sight.

I’m so glad she went because she had such a fun morning. She was surrounded by all the people that she loves – her mommy, her nanny (mommy #2 – in the yellow dress), her para Urzsula (mommy #3 – in the striped shirt), her daddy, teachers and therapists, past and present and all of her school friends. She had a blast. And thankfully she started eating and drinking again that day. And from that day forward, she’s been getting stronger and stronger.

We’re still struggling with sleep. And the panic attacks come and go. But damned if we’re not going to have the best summer ever.

We have food on our faces!

Posted on June 11, 2016 by mommabear0208

Hopefully this is the last of the spa treatments for the week, a supposedly nourishing mask of oats, yogurt and honey. You see Lily and I spent the past two days in the hospital as she was finishing up the clinical trial on statins for girls with Rett Syndrome. The results will be published in August and it looks promising for some girls. Thankfully we didn’t have to do a sleepover for this wrap-up but regardless, driving to and from the Bronx on Thursday and Friday was exhausting enough.

On Thursday she only had one ‘spa treatment’ – the breathing study which consisted of attaching 20 leads to her head, three straps around her torso, and one lead on her piggy. The set up wasn’t too difficult and it went rather smoothly. But then we had to sit there for three hours. I had to make sure Lily didn’t move around too much, or fall asleep. It was physically demanding for us both. We made the most of it – watched a few movies, read a few stories, and I even managed to give her a real spa treatment – a pedicure!

Afterwards I took her for a celebratory lunch and a stroll at the Bronx Botanical Gardens. Mommy had a glass of wine while Lily socialized with the other diners.

Friday we were back at the hospital bright and early. Lots of ‘spa treatments’ this day. She started out with a blood draw. Brave kid didn’t even flinch when the phlebotomist put the needle in. Then we had an hour-long session with Dr. Sasha to talk about Lily’s emerging anxiety, her increased clumsiness, and her ongoing sleep issues. What many people don’t know about Rett Syndrome is that it is continuous and relentless. And my poor sweetie is struggling a lot.

After talking to Dr. Sasha and having Lily do a cognitive test (which thankfully was not at all invasive), we made our way down to the dungeon for the EEG.

The test itself was only 20 minutes long. But it took over an hour to get all 27 leads on her head. The technician was an amateur. However, Lily was a champ throughout. We were giggling and telling stories and listening to music. I told her I would take her to the zoo afterwards if she wanted. But she was so tired after the EEG that we just made our way home.

Once we got home, she had a few therapy sessions (she needed help with movement after being sedentary for such long periods of time). We had pizza for dinner. It was pizza Friday after all! However her appetite just wasn’t there. She managed to eat a few bites. Then she took an hour long bath, soaking the hospital visit out of her pores while mommy cleaned – yet again – the glue out of her hair.

We spent the rest of the evening cuddling in mommy’s bed watching Mary Poppins. It was a struggle to get her to fall asleep (which is unfortunately the norm), but eventually she did and she slept through the night!

When she woke this morning, she had an angry looking rash all over her sweet face. I’m sure it’s all the tape and glue and alcohol and leads that has aggravated her skin. I have to go to the pharmacy later to pick up some calamine lotion because my at-home spa treatment did nothing for her.

And there’s another reason to go to the pharmacy today – I’m picking up her latest sleep medication. Hopefully this one will work. Us girls need our beauty rest, especially after this past week.