Hey all, sorry I haven’t been posting! We had sick kiddos and then I had a business trip and well….life!
So, let’s get to it!
Unless you have a child with Fragile X, you might not know that Ear Infections are a thing. At one point, Jackson had 4 infections from November until February. He actually had tubes put in February 2019 and during his surgery he had infection #5! What we did not know in February 2019 was that Jackson had Fragile X, so those infections now make more sense!
Now we are looking at our yearly follow-up with his ENT and need to have a heart to heart on what we can do for this sweet boy, because the tubes just aren’t cutting it. Since February, he has had a handful of ear infections or double ear infections that have not responded to the drops, because the tube has clogged or somehow fluid got behind the tube. So, we have to make trips to the dr for an oral antibiotic….ugh! Not sure if this dr is familiar with Fragile X and the issues with their ears, but we are hoping to prevent the frequent infections, because that is also not helping his language development. Poor dude!
Speaking of language….Jackson has a new speech therapist that we are loving! He did not take well to his first therapist, so we had to contact First Steps to see about getting a new one. As we are only able to take advantage of these therapies and services through First Steps until his 3rd birthday, if you aren’t happy with the services you are getting or your therapist is just not a match for you and your family, you need to act quick to get someone new assigned to your child’s case. So, Jackson is now getting speech once a week and things are moving along! We are currently working on B’s, M’s, D’s and a few other sounds. He is saying words that we can understand, but others might not recognize them just yet. He is also doing a great job of showing us what he is trying to communicate, which is great! He has only had 3 session so far, so more to come!
Now our most recent news to share today is that Jackson has been selected to be featured as the Friend of FRAXA on February 24th! FRAXA is the reason we were able to travel to Ohio as they have funded the research studies that Jackson took part in. They are a non-profit that funds research and clinical trials aimed at finding effective treatments and ultimately a cure for Fragile X. Pretty exciting stuff! If you are on any of those platforms check out adding/following FRAXA Research Foundation and if you are in a giving spirit, consider donating to FRAXA, a group that is very near and dear to our hearts!
XOXO!
Our Fragile Xperience 