Bathtime

We have lots of fun in our bathtub! I still use a bathring because sometimes I tip over or Liam accidentally knocks me over. But soon, we will be getting a different chair that won't rub up against my gtube.


Mommy will post pictures when it arrives.












Liam loves playing in the bathtub.











Last but not least, after our bath we raided our big sista and brothers room. Shhh, don't tell them!

Outside fun

Chalk art by Liam and Tommy (and lots of help from mom), while we waited for the occupational therapist to visit us at home.








I helped mommy weed in the garden.
And these are the little 'maters that she pulled off the 'mater plant. She enjoyed eating them, I didn't.






Here is Nate practicing with the sweet baby alpaca that he is going to show at the fair. The Weisenhorn family raises beautiful alpacas and are letting Nate 'borrow' this little guy to show.







Last but not least, these are my jump starts peeking out of my shoe. Mommy is going to post more later on my visit to Cascade Dafo. It was wonderful!

Toofer!

Not one, but two teeth popped into my mouth. I don't really like them that much. Nope. Mom sure does though!

They make me want to put my whole hand in my mouth and chew on it. These two toofers are WAY in the back of my mouth up on the top. One is on the left side and one is on the right side. Mommy calls them Mo-lars. But they are my first teeth, so I'll call them Ow-ies.

She puts some pink jelly on them and it makes me wanna smack my lips alot. Mommy says it puts my mouth to sleep so I can't feel the Ow-ies. Since I'm 19 1/2 months old, mommy figures I'm going to pop alot more toofers in soon!

Tommy is feeling better

Thanks to everyone for VERY informative emails and the phone calls. Tommy is definitely on the mend. FULL of energy. Climbing all over the couch and his scooter car.


To bring everyone up to date, Children's Hospital wants Tommy to fully recover from this. Then they will see him for the vessel congestion and shunt vascularity. They (and his Pediatrician) feel it really isn't a pneumonia but rather an inflamation due to a virus or a bacteria in his lungs.


It is treated the same as pneumonia no matter the title of his illness.

Unfortunately it's pneumonia

Tommy has every right to be cranky lately. We took him in to the doctor this afternoon and he feels the chest xray shows mild pneumonia. Heavy sigh. Tommy is sick.


The new gameplan is:

1. Ceftin (antibiotic) 2 times a day. Ceftin is used to treat many kinds of bacterial infections, including severe or life-threatening forms.

2. Nebulizer treatments 4 times daily with albuterol, which is a bronchodilator that relaxes muscles in the airways and increases air flow to the lungs.

3. Pulmicort 2 times a day in his nebulizer. This is an important piece to getting him better. And this is a permanent addition to our daily life. The doctor feels that Tommy's lungs are compromised and need Pulmicort now daily. Pulmicort works by decreasing irritation and swelling in the airways, which helps to control or prevent some of his symptoms.

4. Decadron which is a single dose of a steroid to reduce inflamation.

5. Ibuprofen every 6 hours to control his temp

6. Call Children's Hospital in the morning to ask cardiology if they want to review the chest xray as there may be shunt vascularity and congested vessels. Which may mean that our Oct 7 scheduled echo gets bumped up.

7. Lots of cuddles!

6. Call Children's Hospital first thing in the morning and have them review this chest xray, it might show signs that his blood vessels have congestion and there is shunt vascularity.

Been a little under the weather

I haven't felt well all week. My forehand is really warm, I have a cough and a little clear runny nose. Yuck. And I'm cranky. No, make that REALLY cranky. This picture is from dinner last night at our neighbors home. They are hosting the youth choir from Uganda while they are on break from singing concerts at churches. These kids were so nice to talk to and they even sang for us. Please keep these orphans in your prayers for safe travels, good health and many enjoyable host families. I wasn't happy though..... I moaned the entire dinnertime. Mommy knows I don't feel well, so she cuddled me while we ate and listened to their songs.

Yesterday mom made a mistake with my therapy appointments. She double booked my feeding/speech therapist with my Occupational therapist. Oops. It seemed to work out by the end of the hour, but she was terribly embarassed of her oops. But, let's get on with the good stuff of the visit.... I drank thickened apple juice from a nosey cup! 2 ounces. And we decided to switch to bolus feeds. Partly because I'm already at a rate of 600 per hr, so we all know I can handle a bolus. But HUGELY because mom almost thru my pump out the window on I5 northbound coming from our Portland visit. Our pump has seen better days and just isn't as accurate or effecient as it use to be. Bolus feeds here I come! And many thanks to Shari at Optioncare for talking bolus ideas thru with mommy.

Our occupational therapist watched me climb the staircase and my new bear crawl (but high in the air).

Today we had a speech evaluation from my brother Liam at Connections. Mom and dad both went and we had fun playing with all the toys. I signed itsy bitsy spider song with mommy. I even initiate the song with her, I just hold my hands up in front of me and wiggle my fingers together like a spider. She gets so excited and we sing it together.

Tomorrow it's back to Cascade Dafo for my jump starts! I'll write more tomorrow.

Fun time

Oh yeah! Bounce me again!









I had LOTS of fun at the reunion. Uncle Michael and aunt Elizabeth have a bunny, chickens (with names) and goats (Jelly Bean and George)! Super cool critters.

1,2,3 to a stand!

In our hotel in Portland there was something called an air-c'ndition'r. All I know, is that it was alot cooler than the rest of the hotel room, when my brother Liam went to it he smiled, and it made the curtains flop back and forth... and I wanted ALL THAT!

So, I crawled over to that big ol' box on the window...

Put both hands on it, rocked back and forth.... one, two, three

Stand Up!

I love this air c'ndition'r.

Family reunion

I spent this past weekend in Portland at something called a family reunion. I had lots of fun, and so did mom and dad. Hannah was involved in some of the preparations and did a great job. My great Aunt Elizabeth and Uncle Michael in Portland hosted the reunion on Friday evening and it was nice! This picture is Hannah and our great Aunt Elizabeth. They are in front of a beautiful poster that describes how our great grandma was one of a dozen kids!



Here is mommy (in the floral) with daddy in the blue and her cousin Julie with her hubby Don. Mommy enjoys spending time with Julie. Later during the reunion, mommy met cousins that she didn't even know she had!







This is my great grandma's wedding dress, veil, shoes and wedding picture. It was precious! Mommy didn't let us get close to here though.








Grandpa Bill and Grandma Sue had fun too!


And Liam found a really cool house to play in.

A busy yesterday

I went in mommy's van to Children's Hospital yesterday. It was just a check up for a study we volunteered for. My big sista Hannah came with us too, which is always nice.

Mommy sat me in something she calls my car seat, but I call it the "sleep machine" .... one moment we were leaving Bellingham, and the next we were in valet parking at Children's!


When I had my open heart surgery a year ago, the doctor's at Children's routinely threw away the thymus gland because it sits in front of the heart and just kinda 'gets in the way'. Well, a certain doctor started looking at replacing a piece of the gland, or the entire gland as a way to improve immunity in us kiddos.

Daddy and mommy were skeptical at first, and so worried about the open heart surgery itself, they just didn't know about volunteering their wee precious me for this opportunity. But then they realized it was an opportunity, one to improve my health. So, it's a double blind study and no one involves knows if I received part of my thymus gland (well, mommy says it's recorded somewhere in that big ol' hospital) but the nice pediatric research folks don't know. So, we turned in our daily health journals and got a blood draw. It was flawless! One poke and they got their red stuff. I cried a little more than mommy did :)

After we left that department. We stopped by to visit another family from Bellingham who are inpatient. See they have twin girls (super cute ones!), and they have been in Children's even more than I have been. We think about that family alot. Our paths have been similar in many ways.

Then off to Grandpa Bill and Grandma Sue's house. Mmmm, dinner! Turkey sloppy joes and a dreamy jello/pudding dessert. Cousin Andrew and Aunt Tami were there for dinner too!












A good, but long day. Tomorrow.... it's off to get sized for my Jump Starts!

A chart and description for poo

A dad of a kid with Hirschsprung's disease found this online. It is sad that I was ECSTATIC to find that someone has placed labels and definitions for poo. Much better to call the doctor and have a "scale" rating rather than almost gag myself with descriptors. Enjoy!

http://en.wikipedia.org/wiki/Bristol_Stool_Scale

Fourth o' July

Even though I was a CRAB, I enjoyed swimming in the water at Aunt Debbie and Uncle Rob's house.

My brother Liam had a good time. Our cousin Maddy is swimming without water wings!













We played with playdough for the first time. Although mommy didn't take any pictures.... I ate the blue playdough. She wasn't watching me to good, she was talking to aunt Debbie, and then I crammed the blue playdough into my mouth. I was drooling blue slime :)



Aunt Debbie made a pretty dessert, and I LOVED IT!! I shouted at mommy when she forgot to feed me. My cousins Gabe and Maddy liked it too!







At the end of the day we went to Aunt Shawnee and Uncle Ray's house to watch fireworks. Didn't like em. Nope. Too noisy. But I did like the food that Shawnee made! Brother liam is on the lawn tractor getting tickled my Uncle Robert.

Mommy says she hopes that I get over my crabbiness and being Mr. Clingy. If not, she is bringing back the baby sling and she is going to start toting me like a baby again.....

New stuff

I've got a bunch of new developments!

First, I decided to crawl up the stairs. Yep. I wanted to follow Liam upstairs to our bathtub and mommy seemed to want me to crawl up them stairs ... so up I went. Now I only went up three stairs and there are about twenty or so all together.... BUT I CRAWLED UP THREE STAIRS!!! Huge. Mommy was screaming for daddy to come and watch so I stopped :)

We met our Occupational therapist at a park today to work on moving around and fine motor skills. Our family resource coordinator came too! She helped us with a 6 month update. We really like both of them. I was a CRAB. Totally not cooperative. But Liam enjoyed playing there in the creek and with daddy!



Liam had fun with daddy while mommy and I learned some stuff from Miss S. and Miss J. Fun day in the sunshine.














And last but not least... we enjoyed our FIRST ice cream cone today. At the dairy, we said hi to the cows and then each had a .... strawberry swirl.








The last new development is that I get fitted for my Jump Start foot orthotics next week. Our OT noticed that my ankles pronate and I could benefit from them, so after we get those..... the shoe hunt begins for something that will fit 'em. We could benefit from anyone that has found shoes to fit Jump Start's. I really enjoy standing up and moving my feet around... someone keeps saying "walk" or "keep going with your steps".... no idea what they are talking about, I just have a new vantage point for toys. :)