Thursday, July 30

Antibiotics again

Tommy has a sinus infection and his eyes are still 'gunky' post tear duct surgery. Our pediatrician seems to think the same antibiotic he was on June 18th will do the trick for this yukky stuff. Along with antibiotic eye drops. 10 days and lots of lovin' should clear it up. We had all six of us at the dr's office which rarely happens but I appreciated all the help :)

The doctor wanted an xray of Tommy's lungs since they are healthy now and my daughter Hannah was a doll and volunteered to go into the tortune chamber, I mean xray room, with him. They LOVE each other alot so I wasn't worried about Tommy being scared, but I just can't take that chest xray anymore. He has to sit on a little bike seat and then the plexiglass wraps around him and forces his arms straight into the air. The two nice nurses who really liked Tommy helped alot, and with Hannah's love and comfort..... Tommy got his xray taken. And now for the first time in two years we have a picture of what Tommy's lungs look like when he feels healthy. Which will be a great baseline for his next illness.

I hope to post pictures tomorrow of some of our outings lately. Things have been good with our family despite this little illness.

Wednesday, July 29

What works for us Wednesday

We are fortunate to have the opportunity to add a sign language teacher to our team for the toddlers. She will be coming to our home every week along with their speech therapist. And we really like her.

Tommy signing EAT.

We met this teacher first thru the Deaf/Blind program when Tommy was first born and he could hear only at 65 + decibels and the eye doctor said at 6 months old he had the eyesight of a 6 week old (delayed visual maturation). But now, we can access this teacher thru our 0-3 early intervention services. Yippee!

The SUN in itsy bitsy spider.

Starting to sign mom (his hand went up to his chin). And looking really cute!
We hope sign language will work as an additional mode of communication until they have more verbal words. We don't want the twins to rely on sign, but rather this will make things much more helpful right now and avoid bad behaviors that stem from frustration at not being able to communicate.
The teacher showed us two games to play with our older kids and between us as parents to increase our attention to hand signs. One game is "same and different" where one parent shows different toys or similar toys and the other parent signs same or different. And you do it kinda quickly. The other game is a counting game just "1,2, 3" and Liam usually verbally says GO. The numbers 1 and 2 are signed with the usual fingers and 3 is signed with adding your thumb. The twins really watch our hands count for that game.
There are so many websites online for sign language, cool videos that kids can watch like Signing Time (available at our library) it makes learning this eaasier. We hope by December when they start preschool they will have about 200 signs. Hope. It's what works for us this Wednesday.

Tuesday, July 28

Megarama Day

Oh how I'm going to try to take Tommy to one of the islands. Check it out!

Sunday, July 26

Second round for children's ministry

Today was my second time this summer helping out in children's church. This time I was the only teacher in the room :) And with only four kids, two of them mine.... we all did fine. We even had a little fun. We did watercolors on little table tents that talked about times for prayer.

We played with playdough and ate pretzels.

I tried not to photograph other kids in our class, but look at how happy Tommy is! Anytime he hears songs he has his hands in the air.

I think I might volunteer more often in children's church. I really enjoyed the kids, the craft and meeting new parents to me.

Catching up

Most importantly, the sweat chloride test for Cystic Fibrosis came back negative. Whew! Tommy and all of us are EXTREMELY happy.

The blood work for Leukemia and other things is still be analyzed. Two different local doctor offices are involved in reviewing that and they are still putting their brains together. I don't believe this means cancer, I think the current conversations between them involve Tommy's chronic anemia and other abnormalities that the labs indicated. Prayers for the doctors to reach a conclusion this next week on our next step and improvements to Tommy's care.
Now, on to family life. Hannah is at horse camp this weekend thru Wednesday. This is sponsored by her 4-H leader and involves all the girls in her club and their horses. They ride daily, put their fair stall decorations together, wash their horses, and in general learn more about horsemanship. We are so fortunate to find a club that is education based. She competed in a show yesterday at the fairgrounds (I'll post more later about that one) and was pleased with her skills and very pleased with how her horse Babe did.
Nate at age 14 completed the Seattle-to-Portland bike ride IN ONE DAY with his dad (200+ miles in very hot temperatures). Oh my! I cannot express how proud I am of his ability to stick with it. He also finished the Seattle Century (100 miles in high 80 degrees) yesterday and really enjoyed the all you can eat pie at Remlinger farms. Through my wonderful sister Debbie, Nate participated in a golf camp last week at Lake Padden which involved learning how to hold a golf club, video tape of your swing and lots of practice! He LOVED learning golf. He is now focusing on preparing for fair and will have lots of stuff entered.
Liam has been busy with a new marble track that I found at consignment for three bucks. He continues with speech therapy and has been making progress. He really likes being outside just like his older sister and brother. His hair is faded to blond now and he has better tan lines than I do.
One of my new tricks is dinner with french dip sandwiches (which Nate Colin and I love). But finding a way for Liam's little hands to dip a sandwich was hard. So I placed a slice of roast beef and cheese on a hot dog bun! Just perfect for him. He has a half of the hotdog bun (Tommy eats the other half) and dips in his 'gravy'. It's the small inventions that make my life easy :)
As for me? I have spent four weeks WITHOUT A CELL PHONE! Mine went thru the washing machine and the timing couldn't have been worse with Tommy's illnesses and my teenagers activities and needing to contact me. Now I realize the cell phone didn't go thru the wash by itself. And since I do all of our laundry I'm the culprit. And yes, this is the second phone to meet with the same fate. But gee whiz I need a break with all that's on my mind :) So, if you have left me a message, I finally recently got it. But I lost my phone numbers. Please email me your number.
Colin is busy preparing for our annual trek to Montana. We vacation there for 10 days each summer at his families summer home which is on Lake Bitterroot in the Bitterroot mountain range. To say that the lake and surrounding hills are beautiful is an understatement. When we are there we like to waterski, find huckleberries, fish, walk and just plain sit until our minds are free of all clutter. The preparations for going are slightly immense though, and we leave on Thursday.

Friday, July 17

Children's clinic appointments

We had the opportunity to spend the Thursday night at grandpa Bill and grandma Sue's home! Which makes an early morning first appointment at Children's SO much easier. Hannah and Nate, Alyssa (Hannah's friend), Tommy and I all drove down for a busy time. Dad and Liam spent the day at home together. Liam had a hearing test at Western today and his hearing is great!

Our first appointment was for a 'Sweat Chloride Test'. Tommy had an instrument strapped to each one of his forearms for eight minutes on each side which sent little prickly pulses into his skin to get it to sweat. Then the nurse taped film to each skin spot and we put a long sleeved jacket on Tommy and ran him around for 30 minutes to sweat. The doctors ordered this test to rule out Cystic Fibrosis. We will know early next week the results.

Next we went to Oto for a follow up to their placement of a second set of ear tubes. Perfect ears! And we had a perfect hearing test this week at WWU. Tommy has great hearing with the tubes in. Here is one of the professors at Western working with Tommy.

Tommy was asleep for his last appt of the day. This was his last visit with the Thymus study that we particpate in. During open heart surgery he received either part of his thymus, all of it, or none. The Thymus is usually discarded during open heart surgery for these lil guys, so it was exiciting to participate in a study to better inform docs of the benefits (or not) of that gland. We keep detailed journals of his illnesses, which as you can guess, are extensive. Colin and I feel our son didn't receive any portion of that gland back because his immunity is just a big goose egg. It will be interesting to hear over the years what Tommy received.
The participation involves a blood draw every six months. Usually, Tommy doesn't do well during these draws. But today, for the grand finale, his veins were there. And the lab tech that drew him is AMAZING! Remeber the name Hector if you need the best guy at Children's to draw your kid. We always combine the blood draw with other orders from docs so that Tommy isn't getting poked just for research. So, the orders from docs in bellingham were for Leukemia. Heavy sigh. We are all praying the results of the testing today are negative. We will hopefully rule out Cystic Fibrosis and Leukemia and next week just come to a hopeful conclusion that he has less immunity than other kids but no other illnesses. We are grateful for doctors to help us know more.

Monday, July 13

Not the best start for the week

Tommy's first appointment this week was at the Allergy and Immunology local clinic to focus more on the immunology piece of Tommy's health. Specifically, now that he is mending from pneumonia, we want to know if he has enough of the pneumonia antibodies present in his body. So the next time this happens we will know it' not because of something he lacks.

His oxygen saturation at the highest today was 95% great. His lungs sounded clear. Terrific. He still has drippy eyes and nose but his ears are clear.

But when the nice folks at the immunology clinic started talking about the 'tests' that they want to run in conjunction with the Pulmonary dept at Children's Hospital, it was too much for me to hear. Tommy has been thru too much illness to see him go thru more testing. But after talking to Colin tonight (and many prayers) we feel that if we didn't find out the 'why' as to his recurrent respitory infections (14 antibiotics last year) and to better know how to stay on top of his health, we wouldn't be doing the best job that we can as his parents.

Let me tell you this is the hardest part. All four of my kids don't like needles, of course. But three of them can be reasoned with and explanations given and in part, or all, they understand. Not so much with Tommy though. He may understand too much, he doesn't want to listen to the reasons, and he is just plain tired of being sick and tired.

So, off we will go to Pulmonary at Children's Hospital. Hopefully we can meet with them for a short time on Friday while we are there in other departments. But if not this week, we hope the referral will be soon while there are no nasty viruses floating around their clinics.

The tests, although I'm not going to mention them here, are for life threatening issues. Tommy's heart mitral valve moderate leak is life threatening enough along with his aspirations... so when the immunology staff indicated the 'other tests' they will be conducting to 'rule out' a few other life threatening issues, my heart became very heavy. But I just kept telling myself it's in God's hands. Colin and I will do the best job of loving our lil' munckin the same as all of our kids and providing him a lifetime. However short, or however long his lifetime is, we will enjoy everyday and not take them for granted.

But, this isn't the end of our day. Nope. Tommy and I came home and fixed dinner. Soon Colin and Liam were home too. Hannah and Nate were at their dad's house tonight. Soon there was a call from our local pharmacy informing us that not only did our insurance company not cover the solutab Prevacid's for Tommy's reflux, but the Omeprazole that they did cover, cannot be broken open and sprinkled on food because it binds with proteins and cannot be chewed or crushed. And they didn't think it could be mixed with water and put into his gtube. Hmm. Curious that United Healthcare would think a silent aspirating toddler could swallow a capsule. Honestly, I didn't use the word 'curious'. And of course this will be another blasted appeal, gee whiz UHC enough already!

Tommy has been without his acid reflux med for two days because we have been struggling with insurance coverage and options from our doctor, who is really thoughtful about options. Using what the pharmacy said we called the evening clinic and spoke with a nurse tonight about wether we are suppose to use the Omeprazole with Tommy. She forwarded our question to the doctor there tonight who replied he wasn't going to change Tommy's meds. Now it's not so much that I disagree with his decision not to change a really complicated kids' meds, but for two working parents to have to juggle ALL THIS during daytime hours at work is hard. No, it's extremely hard! And more importantly it will be Tommy's third day without reflux management. So, as soon as the doctor in the morning calls something into the pharmacy, even if we need to pay cash, I will leave work ... pick up the meds.... drive to Tommy who will be at Promise and give him his meds. Which all could have been avoided ... on so many levels.

It's off to baths right now and some splashing therapy. I might get in the tub too! Tomorrow will be there then.

Saturday, July 11

Parent to parent summer get together

Somedays I need to start the day as "superman". There is just so much to do, so many people to meet and places to go to.
We went to the annual P2P summer get together at Lake Whatcom today. The newest 'Super Sitters' graduated from their two day course on babysitting/cpr/first aid and so Liam and I went to play with them.

They were so much fun! They had the duplo table set up. And a swimming pool full of bird seed to play in.

I just loved them duplos.

And there was even a group of sitters doing tattoo's! I look good in pink don't I? Crazy!
My big sister Hannah got to be one of the 'returning' sitters and played with alot of cool kids. There were so many sitters that mom got to eat her lunch all by herself without chasing us.
What a great afternoon.

Funny faces

Wednesday, July 8

What works for us Wednesday

What works for us lately is LISTS. Yes, the dreaded word of organization. And the list for the next few weeks prior to our annual vacation to Montana is:
  • Children's Hospital appts for: Pulmonary dept, thymus study, ENT tube placement follow up
  • WWU: Hearing tests for Liam and Tommy (these happen every 6 months, due to ongoing hearing issues)
  • 4H record book edits: Hannah and Nate have their due date of 7/17 to get record books to the fair (our local fair starts on 8/17 and in order to qualify for fair you need a project record book)
  • FRC 6 month evaluation for Liam and Tommy
  • OT and SLP appts (at home and at Connections)
  • Schedule Hannah to see doctor
  • Hannah to horse camp for three days
  • Order Nate's tshirts for barn duty at the fair
  • Home healthcare supplier: order more gtube connectors and bolus feed tubes, check on portable oxygen saturation monitor options
  • Xray for Tommy to hopefully show pneumonia is totally gone
  • B'ham Allergy and Immunology for testing of the presence of pneumonia antibody+
  • Pack travel trailer for 9 day vacation
  • Get last two vaccinations for Tommy's 2 yr old well check up (yes I realize he is over 2 1/2 yrs old now)
  • Return call to primary insurance company nurse (she is following up on 6 day hospital stay for Tommy)
  • Schedule dentist appts for Tommy/Liam
  • Date night scheduled at least twice before end of month because I miss my hubby! Get a babysitter....
  • Give the thank-u note to my sister Debbie for all her help at the hospital (just found it in my purse)

A couple of these were done yesterday or today, whew! Much thanks to a great family, team of supporters and a loving husband to help get much of this done. Lists get me through the day!

Monday, July 6

A very nice visit

It isn't very often that you meet another mom who walks a very similar path as you in the 'special needs' area. But three years ago I sat in the lab at St Joseph's hospital very pregnant with twins and along came a mom pushing a twin stroller with one baby that had Down syndrome and one twin that was typical. And ever since we have been friends.

Her knowledge and skills are amazing. And her kids were an absolute delight! With her six youngest in tow and my four we were delightfully outnumbered with giggles and lots of activity.

Tommy and Jordan are only months apart in age and both are so cute together, the little blondies! They both had clogged tear duct procedures, ear tubes and similar g-tubes. We had a lot to talk about :)

One of her daughters climbed our pie cherry tree and enjoyed a treat.

All the kids had a wonderful afternoon playing together. The ten kids blended so well. We milked our visiting goat, ate spaghetti dinner and finished the evening off with rootbeer floats and lots of good conversation. My Liam wanted to go home with them :) He didn't want the fun to come to an end. A very nice visit! We will meet their family at a local park on Wednesday night and get to visit one more time before they go far back to their real home.

Friday, July 3

Out and about today

Warm weather and fairly good health allowed us to enjoy the beach today.

This morning was a nice low tide which exposed alot of tide pools and we had a blast looking for crabs, clams, worms and cool shells.

Tommy seemed very relaxed watching the tide come in and out.

Liam loves the waves coming in.

The water looked calm and very blue. We saw seagulls of course but a few herons also.

Even the little clam shells were whiter than white in the sunshine.

Two little guys enjoying their 'finds'.

Hey, what's a cow doing at the beach? Well on our way home we stopped by Pleasant Valley dairy to buy some homestead cheese. And we were treated to a tour by their wonderful family. The twins LOVED sampling the cheeses seeing the baby cows and all the farm equipment.

This was a little bull being raised to become one of their herd bulls.

This is Liam running around and in the background you can see the door to their cheese shop. YUMMY. And since our own family farm has a visiting milk goat and I have LOTS of goats milk right now, I purchased some rennet from them and when our weekend calms down a little..... I'm making mozarella! We like cheese alot, and we really enjoyed visiting this 3 generation farm, they are extremely nice folks producing wonderful raw milk cheeses.

Tommy Adventures