Sunday, June 28

Not many photos

Mom was pretty shaken up this time during our hospital stay so she didn't take many pictures. She said she needs to establish boundaries about "not breathing". Okay, I'll try my best not to do that again.

It hardly looks like I'm sick! Only a few days before this picture I was blue and not breathing.

I LOVED all the visitors. Sometimes we got to see most of our friends and family in the same day!

I really enjoyed reaching for the bubbles. Listening to the books mommy read, playing with cars, watching Finding Nemo, filled most days.
Once the oxygen wasn't needed during the day, then I could roam the hallways which was great.
And then I slept thru most of the night on room air and got to come home! Now mommy and daddy are busy with nebulizer treatments and antibiotics. But, I'll mend soon. And feel better to enjoy summer.

Saturday, June 27

Home sweet home

We arrived home today at noon.

What we know: Tommy's xray yesterday showed pneumonia still exists but it's much better. Two antibiotics to finish. Nebulizers around the clock. And he stayed on room air from 2am last night thru to 9am this morning and his oxygen saturation was in the 90's.

Still need to completely mend and stay low for awhile. Tommy is running around the house cooing at everything he sees like it's his first time. What a joy!

I still cannot believe he is alive. I cannot explain the color blue that he was (although a few other moms that read this have had a similar experience). He is feeling so much better now.

HUGE thanks to family and friends and the power of prayer. I'll post pictures once I get a few zzz's.

Thursday, June 25

Back in the hospital

Monday evening Tommy stopped breathing. I rushed him to the ER where he again stopped breathing, turned completely blue and limp in my arms, eyes rolled back in his head. I thought he had died.

It turns out that the pneumonia which he had been diagnosed and treated for since the following Thursday got much, much worse. Probably due to another aspiration. His happy go lucky nature and constant walking and running masked how bad his lungs had gotten.

His oxygen sat's were as low as 50.

With immediate attention from ER staff they were able to get his breathing back to somewhat normal and we were admitted.

Since then each day has been relatively the same, constant oxygen of some level (as high as 3 liters and as low as a half). Two different antibiotics to treat each end of the spectrum of bacteria. And chest xray that shows how fully involved both lungs are. He is slowly but surely improving.

Please keep Tommy in your prayers, thoughts or mediations that his body begins to turn around and mend. We need our sweet boy back to healthy and enjoying the summer.

Once Tommy is healthy and a few weeks to show for that, we will be meeting with a pulmonary team at Children's to further discuss his lungs. And wether the moderate mitral valve leak is hindering the pressures now.

More to follow over the next few days.

Sunday, June 21

One child at a time

Reece's rainbow is celebrating three years of finding children with Down syndrome and other special needs forever families (190 children have been placed thru them).

Back in December we made a contribution toward sponsoring a little girl's adoption. We prayed for a family to come forward for her as her time in the orphanage was short, similar to all the children, and soon she would be transferred to a mental institute where her survival and well being was bleak. Exciting news is that this family is going to adopt Ana and they are from Washington! The button to get to see Ana's adoption in progress is to the right.


At fifteen years old Hannah is really enjoying learning more about horses. Her new horse Babe is much younger and energetic than her first horse was. She is starting to learn reigning and doing patterns. It is really a treat to watch her ride.
If you go to the Lynden Fair in August, be sure to look for her 4-H group EZ Riders and check out Hannah and Babe.

Catching up

The laundry room had seen enough this past week. It was the last week of school, the first week of Tommy's illness and just a general tired mommy and thus a mess!

Before and after shots only to prove to myself that I cannot let it get this bad again.

Today we enjoyed a Father's Day celebration at church. The whole congregation had breakfast together! Tommy didn't want to drink from his sippy bear, but sly mommy placed it on his tray to 'break down' his unwillingness.

Daddy enjoyed getting a card from the twins.

And after church we had fun playing on the outdoor play structure. Tommy even went down the BIG slide. Mommy can remember it was just last year that the boys were way too small to enjoy this playground. Now they are almost big enough!
Tommy was very uncomfortable during service, so mommy just held him close and he slept thru alot of it. But this is day four of the antibiotic and the active'ness' is very good for getting over pneumonia. So is the fresh air. Mend quickly Tommy!

Thursday, June 18


Tommy has struggled this week starting on Monday with what we thought was teething. Then Tuesday a cough started and more fussiness. Last night a fever started. I was convinced it was something between teething and a virus. But when Promise called to say he was really 'out of it' (huge thanks to their amazing staff), I took him into the doctor and requested an xray on the way there. Grabbed the xray requisition when we got to the doctor's office and then met with our doctor within the hour. Oh how I love our doctor.

Tommy was miserable. Clammy, fussy, snuggly, just not himself. And sure enough the xray showed the same right middle lobe yuk that we struggle with from time to time is there in force. Pneumonia. Either he aspirated or it was junky from some virus. Pneumonia. Oh how Tommy and I both hate that word.

He is on Cefuroxime suspension (antibiotic), which is the Ceftin that he has been on before and was successful. We will do nebulizer treatments around the clock and clapping on his back. We will have faith that we are going to mend at home over the next few days and not get admitted. We are to call in and talk to the nurses tomorrow morning about how our night went. Note to self, remember to get probiotics tomorrow.

Get better Tommy! It's the summertime and you will have so much more fun outside :)

Thursday, June 11


So the lab results came back from the blood draw while we were at Children's and yes Tommy is anemic. Iron drops were phoned into our pharmacy and when I picked them up I was a little surprised to read the list of instructions for administering the drops. Long, long list of restrictions.

But first, as background, here is Tommy's current feeds and meds:
6am Yogurt with the antacid capsule opened and sprinkled onto it (he cannot bite or chew the little grains of antacids and this is the best I could do for him, insurance decided to deny all liquid compounded antacids which made life difficult for Tommy, and me)

6am 6 ounces of milk in his gtube,
Plus a little bowl of cereal with milk on it for him to eat orally

11am Lunch usually at Promise, plus 6 ounces of milk in his gtube

Water thru his straw honey bear throughout the day

2-3pm Snack and another 6 ounces of milk in his gtube

5:30pm Dinner (and lots of it) with straw cup of water

7pm 6 ounces of milk in his gtube, 5cc of liquid allergy meds in gtube, 5 cc of Omega Blendz (DHA,fish oil), 5cc of liquid Vitamin D (Wellesse)

And now here is the stipulations for Iron drops:
  • Take 1 hour before or 2 hours after meals
  • Take with a full glass of water (8 ounces)
  • Avoid taking antacids within 2 hours before/after drops
  • Avoid dairy products with 2 hours before/ after drops
  • Do not lie down for 30 minutes after taking drops.
  • Must be taken TWICE daily
Constipation, diarrhea, stomach cramps or upset stomach may occur. Lovely for a kid with Hirschsprung's disease.

So, any ideas on when I should give the Iron Drops and not change too much his eating schedule which works perfectly? I really need him to start feeling more up to par, but this is a logistical nightmare. Anyone else taking Iron drops?

Wednesday, June 10

What works for us Wednesday

It's been awhile since I've posted one of these "WW for us Wednesday's"

It's worth the wait for you though.

Because guess what?

Are you ready for our news?

Ferndale School District agreed that the boys should attend an early intervention preschool that has a teacher who in part, uses Sign Language, the 'out of boundary school'.... Cascadia Elementary look out! In December twin three year old boys are joing your preschool.

Praise God and thanks to our FRC Julee Johnson and the FSD Special Ed Coordinator.

It works for us on this Wednesday!

Saturday, June 6

Country life

We have been enjoying caring for our neighbors farm this weekend. Milking goats and all.

Hannah loves their youngest animal a cute little duck!

Back on our farm. Liam has been helpful keeping the twine OFF our garden row markers. Tangling up twine, ripping it off the markers and in general just walking through it to the point of tripping.

Little sprouts are starting appear though, shallots, potatos, radishes, lettuce and corn.

When the boys aren't helping us, they usually have trucks in their hands.

Nate and Liam LOVE the new crayola 3-D chalk art.

Sometimes entertainment comes cheap in the country. Like riding a scooter and making goofy faces at your mom.

Nate loves his scooter.
Life in the country has been fun. Eight years now on our little farm and we still love it.

Wednesday, June 3

2nd set of ear tubes and clogged tear duct procedure

Today started when I still had my eyes closed! It was four in the morning and mommy snuck in six ounces of water in my gtube. 'Cause at 4:30am I couldn't have anymore clear liquids and she said she wanted my veins to be plump for the anesthesiologist.

Grandma and mommy drove me to Children's Hospital for a 7:15 check in and an 8:30 procedure. Mommy snuck in a blood draw from my pediatrician while I'm knocked out. See I've been anemic since before February and no matter what mommy and daddy feed me the Hgb levels ain't budging.
Mommy brought the dvd machine to watch lil' nemo and keep me entertained while waiting for the doctors. It worked great! Grandma and mommy are done watching that movie for a LONG time. They just don't appreciate it like I do.

There was a bunch of different teams that met with us. Opthomology had a whole bunch of folks. And then Otolyrengology had a bunch of folks. And then anesthesia had three people that came in and met us. And when that was all done I got a little something in my gtube to take the 'edge off my emotions' mommy said.... I think she and gma needed it more than I did. And I gladly went back with the anesthesiologist in his warm blanky.

The whole procedure took a tad over one hour. But when mommy was waiting for me she saw a doctor jogging by with me in his arms! She started chasing after me down the recovery center hallway and the doctor who thought I was to go to a different zone ....and was jogging a little with me cause I had a bad bleeder in my nose. She finally convinced the nice guy that I was hers!
When I was trying to wake up my throat felt horrible! It still had iodinish stuff in it and my lips were all dried. Plus my nose was bleeding. My ears had dark stuff oozing out of them just a tad. Plus that darn IV was still in my hand. I told mommy again and again I wanted that thing out first, then I wanted to eat! The nurse and grandma helped me out a bunch and I was much happier. Happy enough to watch lil' nemo again!
Each of the doctors came by or phoned and told us how successful the procedures had gone. The blood was drawn first. So those result will be back soon. Next the ear guys placed the tubes and found LOTS of dark fluid behind my ear drum again. Plus my canals had tons of wax and dead skin stuffs. Blah! The ear guy also said that numerous infections probably caused that... and we were in his clinic back in March and they were clear then! Next, the eye dr did his magic of un cloggin' my tear ducs. Which made my nose really bloody. But he said I was an "easy downs kid" (mom didn't correct the non people first language). My anatomy was perfect for the tear duc procedure and yep, he found they were all clogged up. He was nice enough to put little drains in too that will come out in 4-6 months. So all went well and this was very timely.
We finished the afternoon with naps at grandmas before mom continued the drive back to Ferndale. Whew! Long day, I'm tuckered and off to bed. Smooches to all of you!

Tuesday, June 2

Fourth surgery at Children's

I'm going to Children's Hospital EARLY in the morning for my clogged tear ducts and a new set of ear tubes. The procedure is scheduled at 8am and we will let everyone know how it goes. We got to spend the night with Grandma Sue and Papa Bill and it was really nice! We sure do miss Daddy, Liam, Hannah and Nate though. It's hard for mom and I to be away from our family.

Tommy Adventures