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!

Tired of taking things sittin' down

I decided to start walking. Not on my own yet... but behind toys, beside the couch, over to the tv, around by the desk... you get the picture. Cruisin' the area.

I'm seeing things I never knew were there and grabbing all kinds of stuff in the process. I can finally get to the remote control! I'm 21 months now and mom says I might be walking on my own by Christmas... look out tree!


First of all I hold onto the wall or stand up from a sit and grab my push toy.










Pose for a picture and applause from mommy (please note that I cannot wear 24 month size clothes, geez mom I look like a ragamuffin).











Then I push my toy around and when it gets stuck I walk to the other side of it, holding on the whole time.... very careful (tongue out helps to balance) and wiggle my push toy free. Then I walk behind it some more.


Our front porch is narrow and has baby gates piecemealed across the front opening (just in case anyone is wondering about the backdrop for these photos). It's an outdoor room and mom doesn't have to chase us across five acres of pastures. She is no fun!




Liam isn't sure he wants me walking. I keep stealing his car push toy. Sorry lil' brother!

Changing belly plugs

This is a picture of the plug in my belly. Generally, it's called a G-Tube. Specifically, it's a BARD. When I woke up on October 16th (2007) last year it was in my belly! http://tommyupdate.blogspot.com/2007/10/surgery-success.html

What is a gastrostomy (GTube)? Well, the doctor makes an opening through the skin, abdominal wall and stomach wall, then puts into the opening a tube, or a small porthole-like device that has an opening at skin level (in my case it was the BARD shown above). Gastrostomy is the name of the opening into the stomach through the abdomen.

Here are some nice advantages of having my Gtube:
The ability to provide additional food and calories.
No nasogastric tubes are needed---no more tape! --no more skin allergies on my face!
Feedings can be done at night or during the day
Does not interfere with daily activities.
Less chance of spit up and less chance I will aspirate on milk
Less chance of tube coming out (I loved to pull my NG tube out)

What are the disadvantages of a gastrostomy (GT)?
My 'site' is sometimes infected, but more often it leaks, and becomes irritated.

Since I got my Gtube, only milk goes into it. Everything else (spaghetti, hamburgers, fruits, veggies, etc) I use my mouth to eat!!!! But the milk.... it still confuses my mouth... it gets all drippy out the edges and sometimes I breathe it in and forget I'm suppose to swallow. The feeding therapist says milk is still 'too much information' for my mouth. So does the swallow studies.

So, now that a year has gone by, I am now 25 pounds (yippee), I need a 'bigger' belly plug (in diameter) and my parents have decided it's time to change the BARD to a Mickey button. Huge thanks to Sheri at OptionCare who is a WEALTH of information...and Amy, Max's momma. Both are informative, encouraging and reassuring of my parents' 'choices'. And here is more information from my friend Braska on how my new belly plug might get leaky and need changes: http://braskabear.blogspot.com/2008/07/leaky-belly.html

Here is what my new belly plug will look like: http://www.mic-key.com/index.asp?page=product I am changing belly plugs on Friday of next week (9/12/08). My pediatrician will be changing it out (with anesthetic) in his clinic, which save us a three hour round trip to Children's Hosp. Oh, have I told you lately how much we LOVE our pediatrician? Mommy says it's a two way love affair, he likes me alot too!

Books!

Since Liam and I still are progressing s-l-o-w-l-y with our 'expressive' speech.... our speech therapist suggested books with animal sounds, lots of vowels, moooooo, baaaaaa, you get the point.

So, we found lots of books at the library.

Including a 'theme kit' which mommy chose "The Farm". It had LOTS of books, a wooden puzzle, lots of song lyrics (mom is rather hoarse right now), a dvd with animals, etc. Whew! You can check these kits from the library for 3 weeks. Other themes were bugs, friends, there are over 80 of these kits and they are free to use.

Time to read a book!

First day of school

Hannah started high school today! We are proud of ya big sista! Mommy says it was just yesterday that she was taking Hannah to kindergarten. Now look at her, such a cutie!












Nate began his last year at middle school. We love ya NateMan! Mommy cried. Sniff, sniff. Where does the time go?

Movin' and grovin'

I'm tired of sitting. So, I decided to stand up. I stand for about 3 seconds at a time. Sometimes from a complete sit. Today, our OT brought a big ball to roll around on, and it got me so interested in standing.... so I just stood up for a real long time.

I get really tired of working with our therapist though and have some slight behavior issues (mommy is putting this mildly)... but today I lasted 45 minutes before I slapped her. We are working very consistantly on stopping this 'hitting'. Heavy sigh.

One more weekend with sunshine

Finally mom posts the pictures from our weekend. We spent four days in Eastern Washington, camping with six other families. Lots of kids! Lots of sand.









Daddy and Liam enjoyed the water. This weekend was a celebration at this particular lake for power speed boats. Hot rods. Loud,loud engines. We are now convinced that Liam can hear at some level :) He grabbed his head every time one of these power boats started up.




Eatin' in the travel trailer. Hurry up mom, we are hungry! We used the pack n' plays again as traveling cribs and they are still working even though the boys are 25 and 30 pounds now.






The lake water was warm. But the mini 'hot tubs' made by older kids that were building sand castles were even warmer. I LOVED these little warm puddles.

The older kids came to play with me. They kept asking mommy 'does he like to do this (motioning to a car or a shovel)' and mommy would say 'Tommy likes to do anything that you do'.



My hot tub. Okay, I'll share with Liam just 'cause he liked them too. Now, it may look like mud to you. But it's sand. Really wet sand. And yes, after two baths it is almost out of my ears, my diaper area, and between my toes. Almost.