The latest

Posted on March 25, 2022 by mommabear0208

The teeth could not be saved. She won’t have two top front teeth. Maybe ever.

The good news (I’m grasping at straws here) is that she didn’t need a double root canal and the potentiality of the teeth getting infected in the future (which is what happened to me painfully twice) won’t be a cause for concern. Her recovery will be faster.

We will find a new normal. We always do. But this time it feels very different for me. Because it was an accident and I was there and if only I were a few feet closer, I could have saved her. I can’t stop her scoliosis from forming, I can’t stop her feet from deforming, I can’t stop her head from not growing. But I could have stopped her from falling. I should have stopped her.

It’s been a harrowing few weeks, which included an ER visit earlier this week related to the first surgery. Pain management for this kid who has already been through so much has been tricky. Her voice is now hoarse from all the crying.

Hopefully now, the true healing can begin.

The road to recovery… for us both

Posted on March 11, 2022 by mommabear0208

Last week, a few days after Lily’s accident, Stephen gently nudged me out of the house to go to a previously scheduled yoga retreat. I was a wreck. I didn’t want to go. But I also didn’t want to subject my already traumatized child to a mother who was in break down mode.

So I begrudgingly packed my bags and went to Mexico. It was beautiful. It was healing. It was filled with the most magical people and experiences. I was conflicted the entire trip. But what kept me from ditching my retreat was the logistics of trying to find my way out of the jungle on my own. I could have done it. But it would have been a lot of work. And for what? Getting back one or two days early?

So I stayed. And I laughed. And cried a lot. And did a lot of yoga. And slept.

Which is a good thing because Lily’s recovery is going to be far from straightforward.

Lily will be having oral surgery on Monday (yes this coming Monday) to have her teeth repositioned.

Then two weeks later she will need root canals in both teeth as the nerves will be damaged when they move the teeth. And after the root canal, the tooth that was chipped will be reconstructed.

She’ll go under anesthesia for both procedures.

The logistics of making this all happen and in such a quick turnaround has my head buzzing. Her dentist helped tremendously by making the dental appointments, including procuring an anesthesiologist for both procedures. But the pre-op appointments, the multiple calls with all the doctors, and the paperwork… oh the paperwork. Well, that’s mostly been on me. And today Stephen is taking over as I’m heading to another previously scheduled day-retreat.

Things are moving in the right direction. And for that I am grateful. I’m also grateful that I’ve got the most resilient kid in the world as well as the most encouraging and loving partner.

But I can’t downplay how draining these next few weeks will be. So if you get a chance, send some positive thoughts our way. This kid, and her momma, could sure use them.

2.22.22

Posted on February 23, 2022 by mommabear0208

On the socials, everyone was posting that it was going to be a magical day.

I had high hopes for it as well. Not because of some particular date. But because I was finally going to spend one full day with Lily – no caregiver, no Stephen – just us two girls, like how it used to be years ago. We were planning to buy her a new spring jacket and then head over to the history museum. A girls day. Get dressed up. Put on some makeup. Have some fun!

I was extra excited because it was the first time in a long time that I was feeling confident about going out with her alone. No stroller (that she doesn’t fit into anymore anyway). Just reliance on our legs and public transportation (and maybe a taxi if we were in a pickle).

The morning started off easily enough. Stephen got her ready for the day while I ran down and trained at our gym with a guy whose teaching me the Turkish getup (look it up – it’s legit). Once upstairs, Stephen headed off to work. I pulled up all the trip hazards (rugs) in our bedroom and Lily chilled in there listening to music while I took a quick shower. Once I got out, I started talking to her about our adventures for the day. She was very excited. And was following me around. I started to put some makeup on in front of the hallway mirror and she ventured off into the bathroom to look in the mirror there. Then I heard a thud.

And that’s when the day fell apart. Lily somehow tripped and fell into the tub. She semi-caught herself with her hands. But she still managed to bang her mouth.

The screaming was delayed. And that’s when I knew it was really really bad.

There was lots of blood coming out of her mouth and her two front teeth were nowhere to be found.

Thankfully there were no broken bones. I called Stephen to come home. I called the dentist to tell her we are on our way. None of this I remember very well.

The rest of the day was a blur of blood and screaming and crying (including mine) and holding her so tightly and Stephen taking care of us both, keeping level-headed and calm as I was feeling anything but.

I guess the magic of yesterday for us was that she didn’t lose her teeth. They got pushed back into her gums. Hopefully they will come down naturally. But if they don’t, she’ll need surgery. We go back to the dentist in 2 weeks to check in. And then another 2 weeks to decide about surgery.

For the most part, Lily is well; she’s got a fat lip and a huge gap in her mouth. But last night and this morning, she was smiling and giggling.

It’s going to take a while for me to find a place of peace. My confidence as a mother and a caregiver is shot. My heartbreak and grief over what happened to her on my watch feels insurmountable.

But I will push forward. For her. For me. For Stephen. For us.

This is my grief. Not hers.

Rett Syndrome and a pandemic don’t mix together well

Posted on May 1, 2021 by mommabear0208

I know that everyone can say that the last 12+ months have been a roller coaster. For us parents of kids with complex medical conditions, we were already on a roller coaster so life just got crazier and more intense.

That’s why you’ve not heard from me in a while.

Yesterday is a good example of the roller coaster of our lives. It started out with a semi-urgent scheduled appointment with Lily’s Rett specialist. And ended with a jam session (courtesy of Stephen) dance party/giggle fest. In between, we went to the botanical gardens to decompress from the hospital visit which has become somewhat of a family tradition.

So let me backtrack. There’s a lot that’s been going on with Lily. Some of it good. Some of it not so good.

The good: she’s gained 10 pounds, grew a few inches and is progressing well at school (even in a fully virtual environment).

The not so good: during her growth spurt, her feet didn’t grow right which has been impacting her ability to walk, she’s having zone-outs that are looking more and more like seizures and she’s become very temperamental.

Hence the appointment with the Rett specialist.

A lot came out of that appointment that I’m still trying to wrap my head around. Lots of recommendations were made. And with the help of Stephen and the doctor, we’ve prioritized the to-do list. Here are the headlines:

1. We will need to admit Lily for a 3-5+ day EEG to see if she’s having seizures.

2. Lily will be getting Botox treatments for her feet. The AFO’s (i.e., leg braces) which we got about a month ago to help with her gait and foot deformities aren’t doing enough. Adding Botox will hopefully assist in the mending process.

I’m overwhelmed. I’m heartbroken. But at the same time, I couldn’t be prouder of this person who is turning into a beautiful young lady, inside and out.

Advocate like a mother

Posted on October 8, 2019 by mommabear0208

When so many things are going wrong for my kid, it’s not easy staying positive. Every institution that has been (supposedly) set up to help my kid is failing miserably. Everything is a battle. Every day there is someone to call or email or visit. Some days I write dozens of emails and scan just as many documents to move things forward for Lily. Inching forward is more like it.

Thankfully I am not alone. I have an army of people helping me along this battle – from Stephen to Lily’s therapists and doctors, and the other special needs moms – who are in the trenches with me, fighting similar battles, sharing their knowledge, their love and support. But we are outnumbered.

Yet we move forward. With determination and hope. Because we are fighting the good fight, trying to get the most basic of needs for our children met.

The absurdity of the situation (like so many other things going on in this world) baffles me. Here is one such example: We recently saw Lily’s neurologist as she is starting to have episodes that look like seizures. The doctor prescribed a 48-72 hour EEG. While trying to schedule it, I learn that my insurance company will not pay for a prolonged EEG without putting her first through an in-office 30 minute EEG. It is a foregone conclusion that we will not get any answers from this short study; Lily has these episodes maybe once a day. What I do know is that this 30 minute EEG will cause a significant amount of stress for my kid and we’ll have to do it all again a few days later.

For those of you who are unfamiliar with what an EEG entails, here is a quick overview:

Walk into a small, claustrophobic room filled with medical machines and a hospital bed.
Get the kid to lay still while the technician glues 20+ leads on her scalp and then wraps head, which takes about an hour. (Many of you know Lily so you could imagine the herculean effort it takes to keep her still.)
Sit there for 30 minutes to 3 days hooked up to a machine.
The technician (who is often slurping on a smoothie or munching on chips throughout the process and sometimes smells bad) removes the 20+ leads and we go home.
The parent then spends 2-5 hours getting the glue out of the kids scalp.

Could you imagine putting your kid (and yourself) through this twice? The first time for no reason other than to tick a box for the insurance company. So I’m fighting back, knowing it is unlikely that I will win this battle.

So, I am angry. And scared. Because Lily may now be having seizures which is why we are doing an EEG in the first place.

But I am also hopeful. And proud. Because through it all, my child shines. She is not easily deterred. And neither am I. And I know that – given all these crappy circumstances – we have a lot of great in our life. And some days, I’m actually able to focus on this and suspend my worries about her future.