Saturday, September 20

Appointments at Children's

To bring you up to date.... last week we had three scheduled appts: 1. Tommy to get an echo
2. Tommy to have his feeding BARD changed to a mickey and

3. Liam a sedated hearing test.

Only Tommy was able to get his echo (and the results were fabulous). The other appts were cancelled only after we got to the doctors because of various reasons. Heavy sigh. So, yesterday we were back at Children's to try again. Persistance, and a sense of humor, are the only sure things when you have kids with developmental and medical challenges. A sunset on Thursday night from our front porch gave perspective for the next day. This post has a few 'reminiscing' moments, I jotted them down mostly for myself so I'll remember, but I know a few families out there may remember also.

Colin was a terrific driver for our trip and tolerated mommy's singing very well :) Mommy had a really big iced coffee!

Tommy did a "SO BIG" to show off his old BARD, complete with 'gunk'. His face is grimaced because he knows exactly this isn't the place he wants to be singing songs and pretending everything is okay.
I had to leave the room during the procedure. Yes, Shari you were exactly right..... they don't deflate the BARD prior to taking it out. I am thankful that you gave me the 'non-sugar coated version' because I would have argued with the nurse practicioner. I did bring lidocaine :) and she had Tylenol..... and in one minute Tommy had a mickey. Daddy held his hand and it was done quickly.
We stopped in the cafeteria between appointments for a snack of cereal bars and bananna. Tommy didn't seem to mind his new Gtube at all.
Daddy and mommy reminisced about eating all meals of the day in this place. Oh how I cannot tell families that are in that situation how your life will get better. You do get home.
Looking back to last year, we could tell you that the best meal in that cafeteria was the 3am 'open grill'. This was often either our dinner or breakfast depending on how the prior day had gone. Many times I had been holding Tommy for five or six hours straight with just time to stand up and give him a diaper change and then go back to rocking...... but when we did get down to the cafeteria and found the 3am 'open grill'... mmmm. The cook would make whatever you wanted. Especially a scruptious omlette. :)
We found toys before Liam's echo. The twins played 'chase' threw the waiting room. Tommy screams happily when Liam chases and hides from him. Liam giggles. And playing together has finally happened. The delight that I see in their eyes is worth ALL of this last year.

Liam's sedated hearing test was cancelled last week because audiology at Children's was nervous that his heart murmur was still there (this was after we starved Liam for six hours, and thoroughly explained his murmur to intake nurses). So they ordered an echo to figure it out.

According to the tech he has a hole that barely two blood cells can fit through. So, we wait for the cardiologist to write it up and for audiology to schedule..... his sedated hearing test will now be done in the PICU with an anesthesiologist just to make sure everything goes well.
In case we haven't mentioned, Liam is 21 months and still isn't saying 'words' or anything that comes close to a word. Yes, he jibber jabers. No, he doesn't sign. Sometimes, we get him to sign 'please' or 'dog' .... but not much more. So here is what we know, he got ear tubes in June and alot of dark gunky fluid came out. His speech therapist sees him weekly plus we go to developmental play group and everyone says he is making huge strides lately, so we aren't sure if it's a hearing issue or just a delay and he is catching up. Other therapists that have evaluated Liam say that it's only expressive speech. We took him to the Health Dept developmental clinic and he rated 'age level' on gross & fine motor, receptive speech, cognitive, problem solving...etc. Connections speech had similar findings in their evaluation although they rated his receptive and expressive speech lower. Western and Bham ENT had inconclusive hearing results and everyone asked for the sedated hearing test. So..... soon we will schedule the sedated hearing test.
That's it for yesterday!

Tommy Adventures