A few updates (mainly for my records- sorry if this post is kind of boring!)
Grayson: The last few weeks have been focused on getting his GI issues under control. Even though he’s not vomiting formula, he was still throwing up stomach bile at least twice a day. I think we’ve finally found a solution- ferrel bags. G’s new button in his tummy has 2 ports- one to his stomach (G) and one to his intestines (J). We feed him and give him medication in the J, and at night, have been hooking up a ferrel bag to the G to drain his stomach. All night, whatever is in his stomach drains out in the tube and fills up the bag. It’s nasty, but the vomiting has decreased dramatically and he’s been waking up happy. We’ve also stopped one of his medications for now- it was making him so nauseous and sleepy, it’s just not worth the (not so noticeable) benefits. We are also in the process of changing his seizure meds, and so far so good!
School is going great. When I talk about going to school, Grayson always smiles and is always happy when I drop him off. He adores his teachers, makes cute art projects, and loves music therapy. We finally started using his wheelchair, and are actually just leaving it at school since it’s so big and heavy. Today he was sitting in it during “dance class” when I picked him up- so cute.
We still have not heard from genetics about Grayson’s possible genetic diagnosis, which could qualify him for the clinical trial of the Leighs drug. Of course I’m disappointed, but not surprised. Nothing moves fast, unfortunately. And I’ve totally abandoned all hope of knowing anything about Baby #2 before he/she is born (regarding Mito).
Pregnancy: Actually, there’s not much to say, which is awesome. I’m 27 weeks along, I feel good, the baby is moving like crazy all day long, and so far I’m still measuring on track. I took my glucose test last week (which I failed with Grayson) and if I failed this time I was supposed to hear within a few days. I’m taking no news as good news! It is getting harder and harder to lift Grayson and I am super tired by the end of the day. I can’t believe I will actually have a newborn in less than 3 months (and I think I’m tired now)…eek!
House: No offers yet. We’ve had some showings and four open houses, but no bites. Hopefully the right buyer will show up soon!
Dogs: We are down to 2. Hank and Izzy have been boarding quite a bit because of the open houses/showings, but even when they are home, it is so much less stressful. We are still looking for a home for Izzy, but she is going to be hard to place- it’s going to take a special person to put up with that girl- ha!
Time change/weather/traffic: all annoying. No I don’t want to wake up with my 2 year old at 5 am, wear shorts in November because it’s 86 degrees outside, or creep along bumper to bumper for an hour in the morning to get my kid to school. That is all about that!
I have a lot of deep thoughts and emotions about all of these categories, but will have to save those for another post (or posts). 5 am is going to come really early!
we havent seen the sun in 13 days but who's counting. send the 86 degrees this way! :)so cute to hear about how much grayson likes his school / teachers! also, glad to hear his stomach issues are on the upswing.i'll keep my fingers crossed for your house to sell! we will be selling ours soon too but the whole process sort of overwhelms me!
I'm so glad that you're feeling good and that Grayson loves his school! What a wonderful thing to have in his life 🙂
I.Hate.Time.Change. Also, I'm glad you're feeling well and G loves school!!!
YAY! So glad the farrell bags are working!
Geez, 27 weeks already?!! You should post more about this!!I'm glad Grayson's vomiting is getting under control. Poor boy. 🙁
It is nice to read about all that is going on with you guys. Goodness, you are BUSY! Great news on baby and hugs for big brother! — Joan