It’s been a while

So I’ve been absent for a while. Life as usual has taken over. I haven’t been given a lot of time to breathe let alone write. There are so many things I’d like to do but there is not enough time in the day. I think it’s been a few months since my last blog..so what has happened.

J turned 5. I cannot believe he’s 5. He’s 54lbs and 46.5in tall. Ridiculous! He’s humongous. He’s doing well in school as well with his after school services. He’s so smart. When he’s motivated he learns quick. The ACC device has made a huge impact on his communication. I’m super grateful. It’s mostly requesting right now but eventually we can have conversations with it. All that matters is that it’s a start. He’s a very happy kid and wants to spend time with us more now. He wants to snuggle. It makes my heart happy. Even better news is that their are drugs in the pipeline from fraxa to help with communication and behavior in the next 2-5 years. Huge strides.

A turned 3. She loves preschool and her speech gets better every day. She’s whip smart and picks things up quickly. Sometimes her fragile x shows in her inability to calm her body but otherwise she’s thriving in school. She has a great personality and has recently discovered she can say no. Terrible thing that. A 3 year old using no. You’re both grateful for the independence and irritated that she uses it.

E still doesn’t sleep through the night. She’s 8.5 months old and functions on less sleep then me it seems. It finally came to head with a day where I barely functioned through it where something had to change. I was willing to try anything. For space reasons she’s in our room so that creates a whole other level of issues. We’re sleep training now. We’re on day 4 and although she hasn’t slept through the night yet and cries for about an hour, it’s much better than it has been. I feel slightly human and able to get through all the things I need too.

Thanksgiving was quiet. J was sick and where we usually go to my cousins, we stayed home. I missed the big family gathering but his cold spread through the house over that weekend. So it was good we didn’t go. Even Jeff got sick. I was the only one who went unscathed. Probiotics for the win.

We’re approaching Christmas now and A is excited. She knows who Santa is this year and it is the first year Christmas has been really exciting for me. I know J understands but it’s different. His level of interest is different. A’s enthusiasm is infectious. I’m sad for J in a way for Christmas feeling different for him but I know he’s happy and that’s all that matters.

As we wrap up 2017, I find it’s been exhausting, trying, long and short, fun, exciting, lots of changes, you get the picture. It’s been a roller coaster year from having E, to learning she has CF, to doctors appointments and therapy appointments and wondering if each cold she’s gonna culture something. It never stops.

I hope everyone’s 2018 is better than their 2017. Whether you had a good year, great year or a bad one. 2018 is gonna be game changer. I can feel it.

Merry Christmas and happy new year!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s