Summer of 2018

It’s been awhile! Sorry for being MIA… it’s been a hectic summer for oh-so-many reasons.

First, Emmett has been sick more than usual. He got what we guessed was a viral cold early July, which improved but then turned into pneumonia two weeks later. We ended up in the ER for the third time this year, and hospitalized for four days. He was in a great mood for the weeks following his discharge, but got sick suddenly three weeks later (late August), which landed us in the ER again. This time, we were hospitalized for eight days… most of them spent in the PICU because of the amount of oxygen he was requiring. Thankfully, he responded well to antibiotics, intense and frequent respiratory treatments and the high flow oxygen, and we were able to get out without too many additional complications.

We’ve come to terms with the fact that he’ll likely need some hospitalization (at best, an ER visit) everytime he gets sick since he ends up with aspiration pneumonia anytime he vomits. So, it’s just another part of life we try and figure out.

Second, Emmett is going to be a big brother!!! Many of you saw our Facebook or Instagram posts, but YES, we are expecting a baby girl in January and couldn’t be more excited. Anxious also, but very excited. 😊 After getting Emmett’s diagnosis, we decided that we would do IVF for a second child so that we could genetically screen the embryos before implanting. So she’s been “in the works” for awhile because we started that process mid-2017. (I’m planning to do an IVF-specific post shortly so will leave it at that for now.) But I’m 23 weeks pregnant now and so far, so good! Steve has been great at taking on more so that I can get my rest, so that has been a huge help. And our wonderful part-time nanny and the grandmothers have also been helping out a lot to make sure we get our breaks and time to get out and do stuff.

Third, we’ve been busy with a few miscellaneous projects that I hope you’ll all get to see soon!

  1. Our family was featured in a video for Charles Schwab’s “Own Your Tomorrow” campaign. We had a production crew come to our house for three days early August, where they interviewed me and Steve and got a ton of footage of Emmett. I can’t wait to see the finished product and will share it here once available!
  2. I worked on a Q&A for Ovia, one of the main pregnancy apps out there and the one I’ve primarily used for both pregnancies. It’s about life from the perspective of a special needs mom, and hopefully, will resonate with other parents out there dealing with medically-complex kids.
  3. We’re working on a PIGA-CDG website! Separate from Emmett’s blog here. We’ve been wanting to create a space where people newly diagnosed with PIGA-CDG could turn to for comprehensive information, and I finally had the mental and physical capacity to focus on that this week.

All of those things should be ready in the near future, so stay tuned!!

Last but not least, Emmett’s PIGA-CDG research projects. Thank you so much for all of your support during our t-shirt fundraiser in the Spring!! With your support, we raised over $13,000 and sold 300+ shirts in support of PIGA research. We got news in June that the GlcNAc-PI in-vitro study results were promising, so they moved directly into in-vivo (mouse) trials. That work is still in progress but we’re expecting to be able to provide an update this month with prelim results and next steps.

With the baby’s due date fast approaching, I’ve been trying to make sure we schedule Emmett’s critical tests and checkups. So he had his first dental appointment this past week at CHLA [and luckily, they didn’t need to sedate him for his cleaning (yay!)], he has another swallow study coming up later this month, we have another MRI scheduled for him in December, and we’re looking to do another EEG for him. Also, when Emmett turns 3, his early intervention services come to end, so I’ve been trying to figure out what his best options are come next April.

So, as you can see, lots and lots going on. The holidays are coming up so things likely won’t slow down, but I’m looking forward to spending some time with friends and family before life gets super hectic again with baby #2. ❤

-Ann

 

 

One thought on “Summer of 2018

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  1. My email. rtmlynn@hotmail.com
    Lynn a mom of ,3 speacial boys that passed away from P.I.G.A. it took from ,1987 my first born to 2014 before we new what the disorder was and 3 month after my last son pass. My boys named Ryan Tyler. Matthew. Look up on internet my name Lynn Gadal. My story should come up ,you can email me if you want. Canada Ontario were I live.

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