Look! Lora is on her way to the mission field!

Someone was very kind and sent this photo of Lora and another sister missionary just before they flew out of SLC for their missions this morning. They have been in the MTC since July 8th, refining their skills in Mandarin Chinese. Lora will be working in the New York, NY North mission now for the rest of her 18 month mission.

I wasn't able to get a phone call from her this morning before she left because I'm here on the reservation on the western Washington coast with my sister and her family (they work in the school here) and there isn't cell phone service. Internet is sketchy, this may or may not post right away. It's been very interesting, the children are beautiful, the scenery is breathtaking.

Hopefully Papa got a call from Lora this morning before she flew out to NY. It's one of the few phone calls home that are allowed during the mission (also on Christmas and Mother's Day). It's a total immersion program, with no dating, no trips home, letters once a week, email once a week for 30 minutes from a public library, no websites- only emails. Being a missionary for The Church of Jesus Christ of Latter Day Saints is all about serving the Lord and teaching people about the gospel of Jesus Christ. I'm pleased that she's willing to devote this volunteer time to her Savior. Please pray for her and those she will be blessed to teach!

Ella's WBC

News from "the other doctor" is: "Ella's WBC abnormalities are probably not significant, but they will test again in November."

I figure that "WBC" means White Blood Cell. But I still have so many questions... who will answer them?

Life is precious.

I go in a couple of days to the Pacific Northwest, where my sister and I will sort through Mama's things.

Dad married his brother's widow last month, an aunt I'm not familiar with. It isn't easy for me to accept this so soon after Mama's passing, but I know it will be best for those two to not be alone. My dad has had leukemia for several years.

Life is precious.

I love you Dad! And I'm sure I will grow to love Auntie.

We met with our Make A Wish couple

We had the decision making meeting last night with the couple assigned to Joel. They were very patient with him and all of us-- as you can imagine it was hard because although he enjoyed the attention, it didn't seem like Joel really understood what it was all about. How could he understand things he's never seen or done before? He said he wanted toast... quoted some movies including the quote from Ella Enchanted: "I want to be a lawyer." We laughed-- we were afraid he'd say that-- but he has no idea what a lawyer is. At least he was agreeable and sat through most of the meeting around the table on our deck. In the end we went with a couple of the things he had actually said on his own at random times, and listed those as his first and second choices. He seemed to get excited and his eyes lit up about those ideas. We'll wait now to see what the committee says.

It's all very exciting!!! And at the same time, I feel guilty that we can't do something with this opportunity to help an orphan come home to a family..... but this is about Joel, about cherishing the moments we have with him, about making memories with him and the family... about having a break from the stress of living with a life-threatening medical condition. His first choice especially is something that we could never do for him or our family on our own. The people with Make a Wish are doing so much good in the world! We are humbled and grateful that God has blessed us with such friends.

Hemoglobin, hearing and What Ella can do

Ella's hemoglobin looked much better on the last lab (the anemia test), it had reached mid-range, so hopefully we can breathe a sigh of relief! She's still eating paper. I have no further explanation on the issue found with the white blood cells, yet.

We had a very frightening experience with Ella yesterday, I am thankful to Heavenly Father that he protected her from harm! She definitely had angels with her that time! I can't go into it, it's still giving me shock waves and makes me want to heave great sobs, but I want to mark it here in time and express my gratitude for her safety. She is so very precious to us!!!

As far as Ella's hearing goes, we think she hears more but doesn't pay attention because she hasn't had hearing so much of her life. Once again, she is getting an ear infection/sinus infection and is being put on antibiotics. Ella receives hearing therapy at school. She has to be taught to listen. She doesn't respond to her name well, or to questions or directions and tantrums a lot, screaming very loud and high. We're thinking that because she has lost so much of her developmental hearing/language time, that she doesn't understand English yet. Realizing this has helped us a lot. And we still have so much more to learn. Her signing hasn't progressed well due to her difficulty with language and her vision. She won't wear her glasses more than a minute and then proceeds to bend them up and throw them. Ugh. So she's still looking sideways at everything because of her astigmatism (see the top photo of her, two posts back).

What Can Ella do?

• Climb up in your lap and give great big hugs
• Bring me her sippy cup or plate for a refill
• Dance on her own or holding hands with Timmy-- she moves her hips more than the boys do
• Find her favorite dolly in nursery at church and carry her around
• Climb the stairs forward crawling and go down them on her belly crawling backwards
  
• Eat fruits & vegetables like crazy (ate an entire bowlful of veggies at the Mongolian Grill), bread and peanut butter, eggs, yogurt, cheese sticks, but doesn't like mashed potatoes or mac and cheese.
• Eat most times with a utensil
• Smile and be cheerful
• Do some song actions
• Sign "more"
• Say "no!" (at least I think that's what she's saying)
• Watch movies with a smile on her face
• Lie on a blanket or rug in the middle of the floor with a blanky balled up in her arms
• Sit with a big book across her legs and turn the pages
• Use her thumb to splay through a chunk of pages
• Make dots and scribbles on paper
• Rip and eat paper and chew on book corners
• Play with fabric
• Spin to try to twirl her dresses out (who taught her that? She just knew it)
• Recognize familiar people and show her joy in being with them, especially if they hold her
• Tuck her hands under her chest and flap her elbows like little wings when you pick her up (because she's so happy!)
  
• Eat her own kid meals when we go out
• Get underfoot or sit in the corner of the kitchen when I'm cooking, always anxious for a taste (so I try to sit her at the island)
  
• Laugh and giggle
• Sit on the potty chair and go potty if you catch her in time in the mornings (brand new!)
  
• Jabber and wave her arms, like she's giving an important speech, or sometimes scolding us
• Take a bath or shower and enjoy it

The kids' sizes

Because someone dear to my heart asked, I'll post the little kids' sizes here:

Joel is 8 years 8 months (as of tomorrow) and suddenly wearing size 8 pants and shirts. The pants must have elastic waists and they have to be rolled way up but the 7s are too tight around the waist. He's up a size from last year. He's 43.3 inches tall and wears little boy's size 12 to 13 shoes?... but I'm going to double check that.

Timmy is 6 years 2 months old and is wearing size 3T shirts and pants. He's still very thin and also needs elastic waists. In shorts and swimming suits he can still wear size 12 months-- in fact we had to get that size to keep his swim trunks on this summer. His shoes are toddler boy's size 8.

Ella is 3 years 9 months old and is wearing size 2-3T; most size 2 pants fit her in length, but I buy her 3T shirts and dresses because of her torso length. She loves dresses and tries to twirl the skirts! She's just now into size 7 toddler girl shoes.

Lucy is 9 months old and wearing size 9 months. Her arms and legs are short for her torso, as is the case with each of the little kids. Short sleeves always work best for babies with Down syndrome, but in winter we just roll the sleeves to the right length. Her feet are still only one size up from newborn: She wears size 1 infant shoes.

Recent pictures

Ella wearing her glasses (which she doesn't keep on very well yet) and looking at a book. Doesn't she look like a big girl?

Payton and Joel on a play date at Discovery Depot. This is the little girl from his previous school that said in the Thanksgiving play, "I am thankful for my friend Joel."

Timmy on the toy train at the children's museum.

The Gs were at the museum, too! It was fun to see them.

Ella liked the shredded rubber surfacing around the play structure best.

Lucy's got the camera figured out. Now she's working on taking her socks off. It was another beautiful evening.

One morning I was doing dishes and heard Ella laughing and giggling behind me. I turned around to find that she had reached a peach and was eating it. She loved it so much it made her laugh!

Lucy got into sitting position all by herself yesterday!!!

I was singing a lullaby to Ella and when I stopped I heard Lucy's tiny baby hands clapping. I went to see her and she was sitting up! She had been rolling on the floor before that so I know she got up by herself!

She was so pleased with herself! I watched her do it several more times during the day. Hurray! A milestone!

Medical news

Joel's cardiologist said that he wishes Joel's artificial heart valve was larger but that it seems to be doing the job for now. Unless there are changes, he'll see him again in February.

Ella's labs have told us that she is anemic and something is wrong with her white cells-- not an infection... the pediatrician could not interpret; waiting for further interpretation from a specialist. This is when I need to see a cardiologist!

Timmy's tube & What Timmy can do

In answer to questions about Timmy being fed by G-tube... yes, he is still fed that way. This is how he receives his nutrition.

Will he always be fed this way? We hope that he will eventually learn to eat by mouth. Part of it depends on his cognitive growth and interest in eating. He is very orally defensive.

Does he eat anything? Timmy will taste foods if it's his idea... when we're not looking, or if he finds it particularly interesting. He likes to gently put marshmallows to his lips and might gum one for a while. He might taste soft ice cream, or frosting, sometimes swallowing, sometimes not. He'll taste a sucker and let the sticky run out of his mouth for a while, then discard the sucker. He'll put a toe in his mouth, or someone's shoe. He'll lay on the deck and put his lips on the boards. Things we don't want him to put in his mouth he decides to explore. But at least that's something.

What does he do at supper with the family? He sits with us and has a plate and a fork or spoon like the other kids, and a little of each of the foods being served. He usually plays in the food (thinks spaghetti is hilarious) but doesn't taste anything. He just wants to be included. But we always hope...

What do we do with him at restaurants or ward (church) socials? The same thing that we do at home, by sharing a little of the food on a plate for him. But often at church potlucks he just wants to be social with everyone and mix and mingle with the people. He wants to do the same thing at restaurants but we try to keep him at our table. ;o)

Are all kids that are fed by G-tube going to continue to be tube-fed for years? No, it depends on the child and their circumstances. Timmy also has severe reflux and besides a double major heart defect at birth he was a preemie with Down syndrome (low tone) and his intestines were dying. They fed him by a line for a time and didn't expect he would survive. When he did, and after he'd grown enough, they repaired his heart defects surgically and he was hospitalized again shortly after that, because he was filling up with fluids. Timmy had such low tone that he didn't have the muscles that held his jaw together well. He was refluxing and losing every meal. He was on medicines round the clock and feedings round the clock, starting with the kind that had to be pumped into him by portable pump though a nasal tube, taking one hour to do it, then starting again in two hours. He was eventually off of most of the meds and the pump feedings at night progressed to electric pump feedings at night and then to no feedings while he sleeps. But he is up to feedings every two hours again. His Nissen surgery to tighten the muscle between his throat and stomach loosened a few years back and his refluxing began again in earnest. At this point he refused to cooperate with any oral feeding therapies. He began to reflux again and vomit. The gastroenterologist refused to redo the surgery. He still refluxes daily and can vomit, which he does every now and then but the Reglan helps.

But many children use the G-tube for a short time to help them through a difficult medical period and then are able to move back to eating, not becoming orally defensive. Timmy never did really eat or drink from a bottle. It's hard to understand how someone can get through life without a drink of water.

Is it hard, gross or embarrassing to feed him? In public? How do you do it? The embarrassing part may be that he doesn't eat like the other kids in the restaurant... and I sometimes worry that people will think we don't care about him because he's not eating or we didn't order him a meal of his own. If we do feed him by tube in the restaurant it sometimes draws interest but nobody has to see the site of connection to his G-button, it can quickly be covered by his shirt.

It's really easy and quick to feed by tube. Some people are afraid (as was I at first) and think they'll be grossed out by the stoma, or opening to the stomach. You quickly get used to it, it's not as scary as I thought. You simply plug the tube end into the little hole in the "button" and pour the Pediasure into the large syringe at the top of the tube... I usually pop the top of the syringe with the palm of my hand to free any air bubbles and then it begins to flow down into his stomach by gravity-- it just goes down by itself. He gets 8 ounces per feeding, followed by a little water, then you plug the stopper back into the hole in the button, pull down his shirt and off he goes to play. The only part that's tough is if he doesn't want to cooperate and is grouchy that day-- sometimes he might cause me to spill the formula or he might kick the tube and spill. Or if something is malfunctioning with the G-button and he's getting a lot of leakage from the button-- that causes him a lot of discomfort. Because of the possibility of spillage, I usually take him to a spot where it wouldn't matter. But other times I must act quickly and feed him where I am.

He became sensitized to tape so we don't tape gauze around his stoma anymore or he breaks out. Instead we have him wear undershirts to catch any leakage and change them twice a day (or more if necessary). Onesies were nice when he was an infant.

The other problem is to keep him from playing with the stopper. He often kisses the tubing when the milk is flowing, similar to a baby loving his mother's breast or his bottle. :o( I've heard people say that tube feeding is so easy that it's a danger because then we aren't motivated to teach the child to eat. This saddens me and gives me unearned guilt. I sincerely miss feeding my child the normal way. There's something important about that kind of nurturing. I would have him eat if he would! We never give up.

I'm sure there are therapies out there that can help Timmy. He did have feeding therapy until he reached the age of three, then speech was continued at school. I pray that God will bless him with the right people to help us help him.

What can Timmy do at 6 years?

Timmy can:

• Give great hugs!
• Show love to people.
• Dance! Holding hands with Ella or going in circles by himself, often moving his legs enthusiastically
• Play with toys.
• Love his sisters and brothers, showing much gentleness.
• Imitate Joel imitating movies.
• Look at books (very closely because of his poor vision) and turns pages
• Keep his glasses on for longer periods of time
• "Sing" along in church, sometimes very loud
• Say Mama, Papa, Gabe, Wuh for Lora, Joeh for Joel, Ella, oocy for Lucy, Bibi for baby or himself, Bob for Spongebob, DDD for DVD, NO!, Kay for okay, "es" for yes and Mer for More, up for up/help/open, shoe, off, hi, hello and bye.
• Scribble in many varying patterns
• hold a crayon or pencil
• Open and shut his G-button port
• Get his tube and can of Pediasure and bring it to me
• Go to the bathroom by himself on the potty chair and pull his elastic-waist pants down and up
• Go up and down stairs by himself
• Get in and out of his bed by himself
• Stay focused on an activity for longer periods of time, especially if he can see it
• Climb on play structures and slide down slides, loves swinging on swings with help
• Laugh and giggle like a silly heart
• Wrestle with Joel
• Give kisses
• Put a sock on his hand and pretend it's a puppet
• Try on other people's shoes
  
• Yell very, very loud
• Bend himself into a pretzel with his legs behind his head and rest comfortably that way
• Recognizes familiar people and shares his joy in seeing them

What Joel can do

I was thinking about this for Joel's teachers and thought it might be interesting for others to know what our unique, individual little 8-year-old boy with Down syndrome can do...

Joel Can:

• Go to the bathroom by himself, sitting on toilet (likes company; "C'mon, Timmy.")
• Turn on water, use soap dispenser, wash hands.
• Dress and undress himself (needs help with buttons, snaps, zippers; uses elastic waist pants, Velcro closures on shoes or slip-ons).
• Pop popcorn in the microwave (and it comes out right) eat the whole bag (won't share) and then dump the unpopped kernels in the trash.
• Find and play You-tube videos on the computer.
• Find movies and play movie trailers on the computer using Netflix or other links.
• Rearrange my Netflix Que and order movies we already have.
• Find and play the little videos on my blog.
• Find movie music from our playlists on our iPhones and sing along with it.
• Find and play movie trailers on our iPhones (loves the preview for Toy Story 3).
  
• Use the remote to find and play the Special Features on DVDs (Currently hooked on the special features for Monsters Inc. This morning he said while watching them: "Go Disney! See Sully an' Mikey!")
• Put bread in the toaster and start it
• Tell us when "Toas' up!"
• Find the cottage cheese in the fridge and bring it to us.
• Take Flash cards out of the box and put them back in neatly, one by one.
• Turn pages carefully in books and magazines (has been doing this since he could sit up)
• Climb on a chair and undo flip-locks or hook & eye locks
• Climb over baby gates
• Get into the upper cupboards to find a box of Mac & Cheese.
• Print his first name legibly
  
• Scribble with a crayon in line motions
  
• Name several numbers and letters
• Recognize a few sight words
• Identify most shapes and colors
• Use some basic signs like More, Please (used to know many)
• Name family members and close friends by first name
• Tell us his name, first and last (although if you ask his name he'll usually tell you "Shrek.")
• Turn on the shower or begin filling the tub and get in (doesn't adjust the temperature)
• Pile unfolded laundry, then begin a new pile and stack the same laundry again and again.
• Lock us out of the car when we get out and he's inside (must keep our car keys with us at all times).
• Brushes his tongue with his toothbrush (Keep us from brushing his teeth with much strength of lips, even though his low tone prevents him from being able to raise his upper lip.)
• Mimic whole scenes from movies, including words and actions and often the sound effects and sometimes uses quotes at just the right time (although you may not understand all of his words.)
• Can condense several words into one.
• Count to 20
• Climb over 6' chainlink fence
• Hold hands and walk with Timmy
• Climb up and down stairs and bus steps.
• Plug his seat belt buckle in and unbuckle it.
• Find every opportunity to run and hide.
• Roll over and knock children down like bowling pins and then attempt to wrestle with them.
• Spit in attempt to copy the zebras in Madagascar Escape 2 Africa.
• Give hugs to familiar people who expect hugs from him on a routine basis.
• Ask for things (like toast) and not stop until you get it for him.
• Ask if you want toast and not stop asking until you give a yes answer.
• Carry on a conversation with himself: "Oh Joel, you okay? You sad? Yeah. Joel, you go hospital? Yeah, I go hospital, I bleeding, I fall step. Oh Joel." Which sometimes turns into a movie quote as at his feeding eval: "You crying? NO! I happy!" (from "Cars").
• Say a complete prayer using his own words and ending in the name of Jesus Christ, amen.
• Coach and cheer for his big brother as he plays video games ("Good job!", "You did it!" "Jump!" "Try again!")

August ends

Our local park at sunset. We've had some wonderful days.

We love our Chevy Venture, which seats 3 across...

But we're getting a little crowded, and it's hard to bring helpers or anything other than the strollers with us.

This is what we have to do to get kids or helpers into the back.

This photo shows Papa feeding Tim with feeding tube while Ella chows down on a ham & cheese.