Occupational Therapy

If I am being honest here, Arley has been struggling quite a bit lately. Most notably with her legs. She still can't walk for extended periods of time without getting tired and wanting to be carried plus she also still trips and falls.

She goes to weekly PT sessions, but every now and then complains about her legs. After last weeks session she was so worn out and complained about the pain that I had to give her a small dose of medicine just to relax her enough to be able to sleep. 

I am beyond frustrated at this point. I have had doctors say that it's probably growing pains, but to me growing pains shouldn't be lasting this long. I hate seeing my child go through this and be helpless to how to go about helping to make her feel better. My mom guilt has been through the roof for weeks now. 

To top all of this off she also met with the feeding team the other day and they decided that she is going to need Occupational Therapy now too. If you have known Arley since she was a baby then you would know that we have had huge battles of trying to get her the right formula and then baby food, before moving on to table food.

She was very late in the game with all of that due to her allergies, gag reflex and texture issues. I remember being told that eventually she would grow out of it, but here we are almost 5 years later and she still eats only a handful of foods. 

She's definitely not starving, but her palate is extremely limited and it gets tiresome feeding her the same things over and over again. On the other hand it is what it is, I choose my battles, and this isn't one of them.

Thankfully the feeding team seemed quite supportive in what I am doing so far. Making it a positive experience, praising her when she tries a new food even if it is few and far between. I am not the type of parent that is going to demand she eat what's in front of her knowing full well that she won't, I do cater to her likes because lets face it, if you went through what she does you would cling to what tastes good too.

I don't want Arley to develop any ill will towards the foods she eats and be subjected to an eating disorder when she's older because of it. That's the last thing either of us needs. There is also a bit of sensory going on with her too because the look of a food can set her off and if she tastes something she doesn't like she throws it up, rather than spitting it out.

With going to Occupational Therapy the idea is getting her to play with her food. Looking at it, touching it, chopping it up, or whatever else it is they decide to do. The ultimate goal is to expand on the foods she eats, but getting her to do so is not going to be an easy feat.

People have also suggested that the peer pressure so to speak of seeing other kids her age at school would probably help her in wanting to try new foods too. Yeah no. Arley is way too smart for that. If the visual component wasn't there, then I would probably agree that yes she would be more apt to trying foods, but if something doesn't look right, she's not going near it.

We haven't even begun the OT and just thinking about it I am exhausted. It's just another appointment to add to our agenda, one more battle we have to try and conquer and if I can be blunt, I'm pretty much over it. Wishing on all the stars in the sky that things can just be normal, but knowing full well that this is our normal and it has been for years.

I can't lay any blame on her though, she gets this trait from me. I was a very picky eater when I was her age, but eventually the older I got the more foods I was willing to try, but it took me well into my 20s to expand my horizons. Fuck, karma is a bitch.

We have some more appointments we need to get lined up as well as meeting with more specialists, so once that has been done I will post more updates soon.

4th Annual Buchholz Bowl

One of our most anticipated events of the summer took place last week up in Boston when we took the drive out to attend the 4th Annual Buchholz Bowl. 

It started off with a quick trip to the Outlets where a visit to the Disney Store was an absolute must and then we headed on over to our most favorite, eclectic and trendy hotel nearby the festivities and grabbed a quick bite of lunch.

After lunch we hung around the hotel for a bit and then made our way on over to Fenway.

On our walk we noticed our friend Clay so of course had to stop for a photo op!




This year's Buchholz Bowl was by far the best yet. Her teammate and Captain was actor John Hurley who played the role of J. Peterman on Seinfeld and most recently known as the runner up to the first ever season of Dancing With The Stars. He twirled Arley around the bowling alley and even showed her some official DWTS moves. She was delighted.

We also met Mookie Betts, David Price, Brock Holt, Hanley Ramirez, Koji Uehara, Tommy Layne, Blake Swihart and many others. 


I gave Clay a pep talk and let him know not to listen to the haters, that everyone can't be perfect all the time, just keep his head in the game and everything will eventually work itself out. We believe in him and are thankful for his friendship. 

I also got to congratulate Jackie Bradley Jr (Arley's first year teammate) on the birth of his daughter and sent well wishes to his wife. We were also able to get a better picture of her with Dustin Pedoria and I promised him that she wouldn't hug his leg again which he laughed off and said it was alright. 

Just as we were getting ready to leave and head back to our hotel, Big Papi himself entered the bowling alley. Like bees, to honey everyone immediately swarmed around him. I hoped to say hello to him and wish him luck on his retirement, but the likelihood of that happening was next to never so I gathered Arley and headed towards the exit.

One of the volunteers caught up to us and asked if we had a chance to meet with Ortiz and I said we didn't, but that was okay. He wouldn't hear of it and took Arley's hand and led her back through the crowd up to where Ortiz was standing. And like the parting of the seas, as soon as Ortiz caught sight of Arley the only person around him that mattered was her and he talked to her for a bit before snapping a quick selfie. Many things can be said about David Ortiz, but the number one thing that can be said is he has the biggest heart especially when it comes to children.

I also want to send an extra special thank you to Clay & Lindsay Buchholz for inviting Arley and I out to the event. We are so lucky to have the two of you in our lives and are so grateful for all that you do for children suffering life threatening illnesses and for all that you will continue to do. We love you!