Lucy is 11 months!

Waiting for Papa

This is Ella one night, waiting in the old chair that her brother-in-law Marty brought over because we're in-between furniture right now... she loves this chair and spends a lot of time in it, looking at books and cuddling in a blanket. In these photos she is waiting for Papa to get home from church one evening last week. She had had a long nap that afternoon so she was able to stay awake a little longer than the other kids that night...but not much longer.  

Our Daily Schedule/ Why I like my iPhone

Those of you who know me know that I'm not a structured person by nature; I'm an artist. So, I find ways to help with our now highly structured lives. Here is our DAILY SCHEDULE:

• 6:00 AM Mike go walking/to the Y, Dolores check calendar, read, pray
• 6:30 Dolores shower, dress, start some laundry, fold and put away clean laundry
• 6:50 Mike shower, dress
• 7:00 Get Boys up, dress - Dolores set out clothes, Mike help them dress
• 7:20 Feed Timmy by G-Tube, give antibiotic
• 7:30 Give Joel breathing Treatment, check backpacks again
• 7:45-55 Mike put Boys on school bus
• 8:00 Dolores get Girls up, bathe and dress them
• 8:15 Meds & Breakfast for all at home (including Lucy, all meals)- Mike fix breakfast
• 8:35-45 Mike put Ella on school bus
• 8:45 Calendaring, Plan Supper, Errands, Phone calls, secretary work
• 9:30 Mike leave for work
• 9:30 Feed Timmy/G-tube: Give Reglan (weekdays@school)
• [9:35 Sundays: Get in car, go to church (Mike to Church at 7:00 am on Sundays)]
• 10:10 Snack, feed Lucy thickened bottle
• 10:30 Nap for Lucy
• 11:20-30 Give Joel breathing treatment (weekdays@school, prn)
• 11:30 Feed Timmy/g-tube (weekdays@school)
• 11:40-50 Get Ella off school bus
• 12:00 PM Get Lucy up
• 12:10 Lunch for all at home
• 1:30 Feed Timmy/G-tube (weekdays@school)
• 2:45-55 Get boys off school bus
• 3:00 Joel breathing treatment
• 3:10 Snack, feed Lucy thickened bottle
• 3:20 Naptime for Lucy and Ella
• 3:30 Feed Timmy/G-tube: give Reglan
• 4:30 Get Ella & Lucy up
• 5:00 start Supper
• 5:30 Feed Timmy/G-tube
• 6:30 Mike gets home (except on the nights he goes to the church or visits)
• 6:30 Eat Supper together, Family Time
• 7:30 Little Girls (meds) PJs, Family Prayers, feed Lucy thickened bottle, put little girls in bed
• 7:45 Start Joel's breathing treatment, Feed Timmy/G-tube: antibiotic.
• 8:00 Bathe the little boys, PJs,
• 8:15 put the boys to bed... Mike sit with them until they go to sleep, Dolores put in more laundry, fold and put away clean laundry, Clean up
• 9:30 give Timmy feeding/G-tube: give Reglan-- while he is in bed.
• 9:40 Mike & I talk together, pray
• 10:00 Our bedtime, Yay!

Whew! We have to be flexible because we're human and fun is also necessary and sometimes we get behind but we still have to get everything in there.

Often one or more of the kids wake up at night and need attention; Joel often climbs in our bed when he's sick. He rumbles the bed with his lungs and sleeps like a windmill. I worry all night, take his temp when he's hot and give him a breathing treatment.

Doctor appointments in other towns are usually on Mondays, which Mike has off. In-Home Early Intervention Therapies are squeezed in where they will fit and generally not on Mondays. If an appointment doesn't get on the calendar it will get missed.

The other day when the receptionist at a doctor's office said, "We're updating our files... Do you have a job?" I said "No." But I felt like I was lying... strange culture we have, that doesn't give credit for full-time parenting.

Now I'm not complaining, I love my "job", this is what I want to do!  I'm just stating facts. Life is a growth process and we each have our own "assignments". I'm sure if you look at your day as closely as I have, you'd find it just as busy.

So how do I like my iPhone? Let me count my favorite ways:

1. I can have as many alarms set to remind me of things as I need. I have 32 at last count, with various sounds. Joel can often tell me by sound what they're for. The screen brings up a message telling me what's next and will alarm until I turn it off so I can't miss it, even if I'm on the phone or if I left it in another room (unless Joel gets to it first and touches the screen).

2. Mike and I can easily see what's on eachother's iPhone calendars because whatever I put on mine automatically goes onto his and his/mine. Very helpful in scheduling the kids' many appointments!

3. I can send and receive email anywhere, anytime, including at the hospital - wherever there is cell or open internet service.

4. Same with the Internet, which helps find things on the go.

5. I keep the iPhone in my pocket and can use it at convenient moments while watching the kids if I need to. I can take notes when i think of things and email them or save them to use as reminders, grocery lists, or future blog posts when I have a moment to sit down at the desktop computer and do something with my blog. (i.e: Although I haven't figured out how to post more than just titles from my iPhone, I can pre-write posts and copy/paste it to the blog from an email I've sent myself to the regular computer).

6. I can take pictures anywhere and use them quickly by email. For instance, one day I was waiting in the car with the kids while Mike ran into a store to get something we needed. He took a picture of the item and emailed it to me. I was able to see it right away and say "yes, that's right, buy it". Pretty cool, eh?

7. The GPS feature helps me find my way around; I am directionally impaired so this application is priceless.

8. It's a phone at the same time, all-in-one.

So, forgive us if we've become "iMama and iPapa", but these phones are what I'd call "adaptive technology"!!!

Two celebrate three

Genevieve and Collin celebrated their 3rd birthdays in September! Here they are at the park with 3 candles on each cupcake. Collin had a crown too, he just didn't keep it on...

  'e preferred the pirate 'at. Arrrr.

These are Janina and Marty's kids. Our grandkids. We get to see them often, which is very nice. They are both full of smiles, spunk and vinegar! 

Joel's Wish

The Make A Wish Foundation is sending Joel and our family to

We're all so excited!!!

It's a little surreal right now because none of us have been there before so we're trying to understand (like Joel is, I'm sure) what it means. We're going to the Disney World website and showing Joel pictures and short videos there, hoping to get him used to the idea of that many people and so much to see and do. He seems very excited about seeing his favorite characters, like "Sulley and Mike" from Monsters, Inc., Woody and Buzz from Toy Story and the characters from Finding Nemo !!!

Joel keeps telling people, "Disney!"

We have to all be well (so please keep praying for us!) and everyone has to have their flu shots before we go on the trip... which is scheduled to happen this year between holidays!

Wow! Thank you!!!!

Yes, we're still here

We haven't moved away, we're just in disguise. ;o)

Actually, when I flew home last weekend I was worried that I'd give the awful cold I'd aquired to the rest of the family... but they already had it. Or one like it. Even Mike was coughing as we drove home from the airport :o(.

So we're all sick together this time. Hopefully we'll get through this soon!

Here's how the kids entertained themselves one day this week. See if you can tell who is who.

A little more on WBCs

After our appointment yesterday I have a tiny bit more information. Because Ella's white blood cell counts are low in more than one way it is more indicative of an immunodeficiency than of leukemia, which would raise the white blood cell count. The doctor said she may need more frequent antibiotics than we'd like her to have, as we have been seeing. She is to have more labs drawn soon.