Memorial Day weekend

We had a packed weekend, which I love. Saturday, Magnolia was to have gymnastics in the morning and Gray asked to go climb a mountain. So Mags and I had fun going to gymnastics while AJ took Gray to hike – everybody was happy. During the afternoon both kids were supposed to have swim lessons. I went and checked on the pool before lunch and it was 70 degrees, aka too cold to swim. So we had to cancel. While Mags and I were eating lunch, she kept navigating on her Tobii to Farm on her computer. So I modeled “What about the Farm? She replied “Farm, Farm, Farm, want.” So I modeled. “I want to go to Farm.” I was so happy she was trying to use her computer and not for the quick easy answers, which she has been doing a little more, but for something she actually wanted to do. So we looked up the closest farm and off we went. It was small but both kids were happy. We were there an hour, fed the sheep and goats, and bought a fresh watermelon and corn. Success! Here’s us getting Mags to feed the goats even though she didn’t want to get too close. Pretty much nailed the family selfie too.

Sunday we took a spur of the moment trip to Ojai. We visited some friends there. Ojai is such a peaceful and fun small town to visit, we should go more often. Or at least I should. Kidding, my family can join me. We ate, we swam, we walked around, we ate, then drove back to LA. Fun day! If you remember, the fires this past year surrounded Ojai, and you can see there is regrowth happening already.  Last year the hills behind us were all on fire, but this year, to quote a Jurassic World slogan, life finds a way.

Monday was Memorial Day. We had planned to meet our friends at the beach. My weather app said it was going to be 68 degrees. I was tentative about a chilly beach but we packed it up and met them for the afternoon. It was warm where we sat, but closer to the water was chilly. Gray didn’t care, he chased the waves and wanted to play with daddy. Every time Mags and I walked to the water, she would turn around and head back to our where are stuff was. It was too chilly for her. She is so skinny, she gets cold easily. I have to remember warmer beach clothes for her.  She would rather sit under the tent and eat watermelon. So that’s what we did. We had girl time. (outfits not necessarily worn in this order, lol)

I didn’t have Mag’s arm braces on her while we were at the beach and she seems so tight. Do you put braces on your Rett kids at the beach? I guess they are washable. I need to think about this, we plan on going to the beach a lot this summer. Maybe one brace is a beach brace, then leave another one as a dry brace? I’m up for suggestions.

#magnoliashope #rettsyndrome #parentsaretired

11 thoughts on “Memorial Day weekend

  • I’m just about to start using arm braces (Bamboo brace) with our daughter, Eliza, who is 7. How have you found that they have helped? I’m curious to know what we might expect.

    • We love the bamboo brace. We have had to use it since our daughter was 4. Her arm stereopies have changed over the years. At first the brace kept her from hitting her face. Then the brace helped uncontrollable movements, now the brace is used for keeping her arm straight and also help calm uncontrollable movements. We’ve tried others, but the bamboo brace has been our preferred option.

  • Love hearing about all your happy family times together. Beautiful family enjoying a wonderful Day

  • Hi dear Magnolia and her family,

    So the Right to Try Bill has been signed. What do you think the effects be for our children? Can we let them try Trofinetide or Anavex or even the gene therapy if it is sucessfull?

    Thank you,

    • Hi James,
      I apologize for the delay. From my understanding, pharmaceutical companies still have the right to refuse patients to try their drug if it hasn’t completed trials. Since they are the ones liable, they have the final say. There are other factors that could be involved as well. When a drug is going through clinical trials, and hasn’t already been massed produced for market, the pharmaceutical company may only have enough supply for the trial patients. In theory, passing a law for a patient’s Right to Try is good, but it doesn’t give patients carte blanche on getting the drugs.

      Now, in my opinion, if there was a drug that is already on the market and could possibly help for another disorder, that it wasn’t previously mass produced for, such as Rett. I one hundred percent would be petitioning the pharmaceutical company or whomever I need to get the drug for my daughter.

      I hope that answers your question. I wish I knew more. Honestly, these clinical trials take so long, its so emotionally taxing on all of us. Our kids with Rett, the families. I wish the FDA, drug companies, doctors and everyone involved with the clinical trials could process the information faster. Wouldn’t that be nice?

      • Hi Jenny, AJ and of course Magnolia,

        I totally agree with your statements. 2019 seems to be a crucial year for us and for our children. Gene therapy, trofinetide and anavex trials will all be out there. As a parent if any of them successful (for gene therapy and trofinetide it means that we can have something in the near future), we should be pushing the limits and make at least one of the drugs to be available on request. The ultimate ‘cure’ may need some more time but at least we need some improvements for our children to benefit from.

        For Magnolia I especially recommend to take part in the anavex trial as decreasing and even stopping seizures is one of it’s important components.

        Best regards,
        All with HOPE!

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