Friday, May 30

Occupational therapy and a nutrition appointment

A few days ago Miss S came to our home for an OT visit. She is really fun. This time she told mommy to take the cushions off the couch and put them on the floor for me to crawl all over. It was so much fun. See, since I can crawl now... Miss S wants me to start to climb over things and work on strengthening my legs and core muscles. This might help me to do something she called walking. I don't know about that, all I know is mom should keep the cushions off the couch forever! I went up on top of them, and then crawled down them and sat next to them and then crept up on them. I love that.

Today we saw the nutritionist. Daddy and mommy both came to this visit to hear what she had to say. I weigh 21 pounds and have gained 5 ounces since my last visit. I didn't lose any weight this time! But the last visit was in March so that means 5 ounces over two months, which is real slow. She gave my parents some ideas for ways to slowly increase my calories. Dad and mom got the green light to put butter on my veggies, cream cheese on a bagel, dry milk added to milk for my gtube feedings, peanut butter on a cracker, and try to fit more grilled cheese sandwiches into a meal. Yummy! The nutritionist thinks my weight is fine, it's continuing along the same curve on the growth chart but falling slightly on both the March visit and today so we are going to try some subtle calorie increases.

Wednesday, May 28

More camping trip pictures

Mommy got the memorial day decorations in the camper.... I decided to help her out.

I had fun playing with all kinds of toys outside.

Nate can still fit on the tire swing. We have been camping here each year for nearly 12 years.... And I think Nate has been on that tire swing many times.

Grandma Linda and Papa Lee cooked every meal! Only three words to describe that.... DE-LIC-IOUS!

And mommy made sure we enjoyed every bite of it. Line us up mommy.

My brother Liam enjoyed the cold water on a warm day.

Cousin Gabe is missing lots of teeth now.

This is us back home on our porch in our pool. I love splashing!

Camping trip

Pass the smores, I went camping over the long weekend! We camped at Baker Lake resort with family. I had so much fun! Let me see if I can tell you some of the memories....

This is my cousin Madison, she likes to swing.

This is my newest friend Jack. He liked to give me a squeeze once in a while.

Auntie Debbie loved to cuddle with me (I like her too).

Daddy gave us big pushes on the swings

Wednesday, May 21

Feeding therapy

Today mommy and the feeding therapist set "6 month goals" and they are exciting! We will be working toward:

* 6 new sign language signs
* one verbal word (mommy asked the feeding therapist if this was possible so young... even Liam isn't talking yet, and she said ABSOLUTELY it's possible, never say never)
* drinking from a cup 4-6 oz
* initiating a game or song
* self feeding (Tommy would starve if we didn't place the food in his mouth)
* chewing on harder items like teething biscuits

Our new feeding therapist is wonderful! And Promise daycare has been FABULOUS about helping Tommy learn to eat. Much of his progress has been due to their diligence. Praise God for all the success so far with Tommy's eating.... only nine months ago he was learning to eat by mouth! Now he eats everything and anything that he is given. It hasn't even been a full year since open heart surgery and yet he is learning to drink from a cup and has mastered crawling. He is our miracle boy, no doubt.

Monday, May 19

Sign language

Today I playgroup I showed off my "two word" signs..... I signed "more singing". I love to hear singing. And just as mommy was telling the other moms that I can sign "more singing"... I did it! I heard singing and I wanted more, so I signed it.... and everyone sang more.

People get confused when they see mommy and daddy sign to me. "Can't he hear?".... "I thought he got ear tubes".... yep I can hear thanks to the tubes, but that's called my receptive language skills. My expressive language skills haven't come yet, I don't know how to say words using my mouth, so I'm learning to sign my words. And get EXACTLY what I want. Liam can sign too, he uses his hands to say "more" and he signs "dog".

Mommy was very proud. And thank's to Max's mom for being so encouraging!

Sunday, May 18

A day in the sunshine

We enjoyed a day in the sunshine. The Down syndrome outreach for Whatcom County had their WONDERFUL potluck on the warmest day yet. Tommy (and all of us) met new friends, talked to old friends, and played. We even brought a couple of our baby goats for kids to enjoy petting.
Tommy is going to be in an upcoming calendar for Down syndrome outreach of Whatcom County (2009)! Get your orders in now :)

Wednesday, May 14

Road Map to Holland

With an opening chapter of "At first, it hurts to breathe"; Jennifer Graf Groneberg's new book "Road Map to Holland" is worth the read. I just finished it last night. I consumed it in only a couple of evening reads (and usually with Tommy nested in the crook of my arm).

She has twin boys also and one boy has Down syndrome. Her feelings and thoughts are similar to ones that I have had this past year. Although Tommy has many more special healthcare issues than Jennifer's son Avery, her book speaks to basic "what to look for" medical issues in kids with Ds. She also defines and highlights the different therapies that our children need: OT, PT, Speech, etc. She lives in Montana close to where we vacation in the Bitterroot mtns each summer.

The "resources" listed in this book are comprehensive. In the back they are cited in aggregate and some have inspired me again to 'connect' with organizations.

I thought this book was great and may even suggest it to new parents out there because the resources are very contemporary.

Blood work

The pediatrician says Tommy's blood work looked fine. All within 'normal' ranges. Whew! Glad this is just another sinus infection/chest bug.

3rd round of antibiotics

Heavy sigh. I'm still sick. The pediatrician drew blood this time (we see him weekly now) and mommy/daddy should hear the results today.

Just in case you forgot, here is a recap on the last few months:
First, I was sick in March (along with Liam) and we were given Augmentin as the antibiotic. We had ear infections and a respitory bug. This antibiotic is used to treat infections caused by certain bacteria. Augmentin is a penicillin antibiotic. It works by killing sensitive bacteria. Once we finished this antibiotic we felt better, but had a sniffle/cough from time to time.

Then we went to Hawaii on April 12th. Before we left for the Big Island, we had (what mommy thought) a cold. While there it turned into an infection and once back in Bellingham we went to the doctor. The second round of antibiotics was Amoxicillin. Amoxicillin is used to treat many different types of infections caused by bacteria, such as ear infections, bladder infections, pneumonia, and various other infections.

On May 7th we finished our second round of antibiotics (Liam and I) and we visited the doctor on May 9th to get the "all clear, no more bugs" okay. And indeed, our chests were clear and our ears had no infections. Praise God!

Then May 11th, only I show signs that the bug still isn't gone (or we caught a new one). I have a little sniffle and mommy/daddy brace themselves. Indeed on Monday I spike a temp. Tuesday I run 100.6 and last night it hit 101.8. I went to the doctor yesterday and he chose a third round of antibiotics. Cephalexin.

Cephalexin is in a group of drugs called cephalosporin antibiotics and is used to fight bacteria in the body. It works by interfering with the bacteria's cell wall formation, causing it to rupture, and killing the bacteria. Cephalexin is used to treat infections caused by bacteria, including upper respiratory infections and ear infections (among others).

Mommy will post more once the blood work comes back. Please keep me in your prayers, I need to get healthy and start to fend off some of these bugs.

Friday, May 9

About me (thanks to being tagged by RK)

Braska's mommy tagged my mommy for an "about me" post,

What I was doing 10 yrs ago: May 1998... I was a single mommy raising my daughter and my first son (they would have been 4 and 3 back in ’98). Wow, that takes me back to a time that was difficult! Two little tiny kids. I was working in a non-profit (here in Bellingham) and loving my chosen accounting career. Above all else I was happy to be a mommy. I had purchased a home and even raised a garden that year! I enjoyed watching Hannah and Nate barefoot in the garden and running through the sprinkler!

Five things on my to do list for today: Washing/drying laundry, folding laundry, putting laundry away…. And more laundry.

Things I would do if I were a billionaire:
Donate to Reece's Rainbow so that LOVING families would be able to adopt some of the coolest kiddos.
Donate to the American Cancer Society and find a cure for cancer.
Donate Children's Hospital (of Seattle) and Ronald McDonald House. Without either of them (and God); Colin and I would have lost our precious Tommy.
Buy an espresso machine :)

Three of my bad habits: I don’t answer our home phone often, I guess I get sidetracked with playing with all four of our kids. I procrastinate, should mow our long grass and weed our flower beds. The biggest bad habit is my espresso addiction (love the sugar free mochas). Another bad habit has been our non attendance at church (service and activities), we have been so sick though this year!

Five places I have lived: Only ever been in Washington State… Spokane (loved it), Seattle (way too busy), Marysville (too far from work), Bellingham (makes me happy), Ferndale (beautiful country living).

Five jobs I have had: Dog kennel poop-scooper (yep, first ever job!), McDonald’s (loved the French fries dipped in chocolate milkshakes), Babysitter, 14 years of motherhood (the most important job on my resume) and now almost 20 years in “not for profit” accounting/finance.

Five people I want to know more about…. My aunt Elizabeth, both of my sisters, my friends Pam and Stephanie. (You can post a comment with your response).

Monday, May 5

Developmental playgroup

I'll let you in on a little secret from playgroup today..... for snack, we had zuchinni sticks that we dipped into avocado puree. Mmmmmm. Since Liam has teeth, he got the entire zuchinni sticks. Since I just gum everything (and do a very good job of smashing all my food), the feeding therapist only gave me the softer parts of the zuchinni and mommy dipped it into the avocado.

Yummy little snack!

Catching Up

First of all, I feel better! And we have enjoyed the sunshine outside and visiting with friends and I feel alot better than last Friday!

Our cousins outgrew some toys.... so now Liam and I have a rocket ship with little aliens. Thank you auntie Debbie!

On Saturday, mommy kept us home in the morning and she quickly decided we were feeling MUCH better. We had an invitation to a Cinco de Mayo party later that day that mommy was looking forward to, but had thought we would skip because of our illness last week. She and daddy decided we would all go though, because we were better. And they REALLY needed to get out of the house.
Mommy LOVED the party. So did Daddy, Hannah and Nate. I didn't. Nope. Not one bit. Nada. I was Mr. Cranky pants. I didn't even want my friend Pam to hold me. And I let everyone else that tried to hold me know that I didn't want anything to do with this party. Until.... my cousin Maddy slipped a blue airhead candy (it's like taffy) in my mouth while mommy was a tad bit distracted. I sucked on that thing and LOVED it. It was like nothing I have ever tasted. Mmmmmm.

Mr Cranky Pants with a blue tongue.

Look at all the cousins and friends that broke the pinata.... and grabbing for candy.

On Sunday, my great aunt Elizabeth and uncle Michael came for a visit from Oregon. We hadn't seen them in a long time so it was extra special. Mommy is going to post the fun pictures soon of our visit with them. My great aunt Elizabeth made mommy some special items.... a quilt! and a set of gorgeous dishtowels (with chickens on them). Wanna know the best part of all? They brought me and Liam the Dr Seuss "Horton" animals and the book! THANK YOU!!!

Friday, May 2


Although the days seem to all blend together... mommy is definitely happy that it is Friday.

She and daddy both worked today and since us babies SEEMED to be doing better, we went to Promise. The teachers at Promise are INCREDIBLE with caring for us, teaching us and playing. Last week they had each of us lay very still on a huge piece of paper and they drew around us for an outline of our bodies. Then they placed those outlines on the wall with our names. Mine is the cutest! So is Liam's. We enjoy homemade food there, lots of Christian based songs are playing, we have such fun toys to play with and best of all.... there is a HUGE yard to play with all of our friends and big toys. I love all the kids in my class and mommy thinks it's been helpful in so many ways to my developoment.

After a few hours there today, I just did't feel like doing anything. I wanted to just moan and lay around. Soon mommy came to pick me up because she had talked to one of the teachers and knew I wasn't happy.

Fortunately, it was just before noon and she got ahold of our pediatrician. He has ordered some labs and we pray that those will tell us exactly what my tummy has been battling. Mommy said the word "colitis". And I remember I had that once before and it was no fun. The combination of Hirschsprung's Disease along with Down syndrome means my intestines and colin have alot of trouble gettin' going again after a GI bug. Plus we have been on antibiotics for ear and sinus infections for nearly 20 days. Blah! Mommy got the green light to up my probiotics to an adult dose to try to get the 'good bugs' back in my tummy.

Heavy sigh. Hopefully tomorrow's post is better news.

Tommy Adventures