Lucy at doctor's office

Here's Lucy at her latest doctor's appointment. She has another sinus/ear infection, poor kid! This is how we entertain ourselves while waiting for Doctor.

That sound Lucy makes to go to sleep

All babies seem to find a way to help themselves go to sleep. Joel used to suck his two middle fingers. Timmy had a pacifier for quite a while... as did Janina. Gabe would lay a finger against his eyelashes and feel them flutter. Milly would move her head back and forth and Mikelle moved her feet, Katie loved to feel the yarn fuzzies on a quilt. Ella would put a blanky up to her mouth and stick her tongue out against it, just like Lora did as a baby. Lucy does that same sort of thing, she is especially fond of fleece or fuzzy, fur-like blankets, but she has developed a sound that goes with it. I can't reproduce it, so I'll share a couple of short digital clips of her doing it. The second one was when she was working with her developmental therapist today. I need to capture this forever.

A Bishop is Released, the Wife's View

   I am grateful and humbled to have been given the experience of being a bishop's (minister/pastor's) wife. The years have been challenging, but we have been greatly blessed.
    At the time of Bishop's calling five years ago, Joel was four and a half and was recovering from Congestive Heart Failure and having an artificial mitral valve placed in his heart. Although he's had illnesses since then, Joel hasn't required a new valve during the entire five year term.
   At the time of the calling, Timmy had just turned 3 and was still walking on his hands like little Mowgli in The Jungle Book. Timmy can now walk, dance and says a few words!
    Four months into Papa's service as bishop, we were blessed with a 4 lb, 6 oz baby GIRL with Down syndrome. You all know this story, but the timeline is interesting if you think about it. Ella is now nearly five years old but has never really sat with her father in church. We've been blessed that more recently, as our older children left home, a ward member stepped up to help fill in on Sundays. A huge blessing! Thank you, Juanita.
    Ella was born a twin but the healthy sister went home with her birth parents and Ella was left behind.  We were against this separation of the girls and prayed that the birthparents would have a change of heart. But when it was already a fact that she'd been alone in the hospital for weeks and the agency called us.... we were happy to bring her home and fell in love.
    And I grieved. I grieved over separating the twin sisters. In spite of their different abilities, I know they would have loved each other. I grieved over their loss of each other. I grieved the birthparents' loss in not knowing Ella. And I grieved the loss of not knowing the other daughter.
    I wished that we could give Ella Rose a sister close to her age, no more  than three years older or younger. We worked hard to figure out what we should do. And we prayed a lot.
    Then we were blessed with a phone call. A newborn baby girl with Down syndrome waited in a hospital within our own state. Would we adopt her? She was born on November 23rd. The same day as Ella's birthday, exactly 3 years later. That was a hug from Heavenly Father. A miraculous blessing we couldn't deny!
    And so, our arms have been full during these years. Our oldest two daughters have also been blessed in having and/or adopting during these last five years--true miracles again as they each suffered infertility for many years of their marriages.
     If you remember, our previous bishop was also blessed with children during his service in this ward; so, new Bishop, be prepared. ; )
    Another blessing we've experienced is that of having a daughter on a mission. Words can't express the joy that brings us, to know she is on the Lord's errand.
    Another blessing I'd like to count here, is the better understanding I've come to have in how the Priesthood works. Although I wasn't in the meetings and the bishop kept everything confidential, I did find him praying in our room on several occasions at different times of the day. I know that he tried very hard to do what the Lord wanted him to do and to serve all of you. And my testimony has been strengthened in the inspired process of assigning callings in this church.
    I bear my testimony of the truthfulness of the gospel of Christ that we are taught in this the Church of Jesus Christ of Latter Day Saints. I know that Joseph Smith was called by God to restore the fulness of the gospel to the earth and that he humbly accepted his calling to serve with all of his heart, even sealing his testimony with his martyrdom.
    I'm thankful to the Lord for all of these blessings!
    I say this in the name of Jesus Christ, amen.

FYI: what we see with our kids

For those of you who are walking a path similar to ours (and there are many of you out there), you might find this information interesting. Some of it is already known but our group proves it. Your kids will be individuals, but here is what we've found with our four:

1. Joel walked at 2 yrs. 5 mos.
2. Timmy walked at 3 yrs. 4 mos.
3. Ella walked at 2 yrs.
4. Lucy walked at 1 yr. 6 mos.

Averaged out in my own little group= A child with Down syndrome may be walking at 2 yrs. 4 mos.
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1. Joel has a single palmar crease in both palms.
2. Timmy has a single palmar crease in both palms.
3. Ella has no single palmar crease in either of her palms; both are double.
4. Lucy has a single palmar crease in one palm and a double in the other.

Averaged out in my group= 62.5% of the palms have a single crease. 37.5% do not.
Or, 5 out of 8 children with Down syndrome will have the single crease in at least 1 hand.
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1. Joel has short arms & legs and in comparison, a long torso. At 9 yrs he is the height of a 5-yr-old.
2. Timmy's arms don't seem especially short but his pants are always a size smaller than his shirt, for length. Long torso. At nearly 7 yrs he is the height of a 3.5-yr-old.
3. Ella has short arms & legs, long torso. At 4.5 yrs she is the height of a 3-yr-old.
4. Lucy has short arms & legs, long torso. At 1.5 yrs she is the height of a 12 month old.

Average seen in my group= At least 75% of children with Down syndrome will have short arms and legs with a long torso. Pants must always be hemmed, shorts and short-sleeved shirts work better. Their growth rate (once they are stable) may start out similar to their typically developing age-mates, but will slow down as time goes by. Of course heredity still plays a role (Timmy is Asian), but they will be short as adults.
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1. Joel was born with an AV Canal and a malformed mitral valve. He has required two heart surgeries; one at 10 lbs to place a fabric divider to make two chambers in his heart and to jerry-rig the mitral valve; and the replacement of his mitral valve with an artificial one when he was 30 lbs (4 yrs old). He will require more replacements as he grows and Coumadin therapy for life. He is now 9 yrs and 80 lbs.
2. Timmy was born with an AV Canal heart defect and Tetrology of Fallot. Both were corrected when he was an infant and nearly 10 lbs.
3. Ella was born with PDA and another small hole in her heart. It resolved on its own and no surgery was required.
4. Lucy was also born with similar heart defects as her sister and they resolved within her first year of life.

Average seen in my group: Children with Down syndrome are frequently born with heart defects and at least half of them will require surgery to maintain life. The severity will vary. Each child's sweet life is worth saving! Words cannot express how valuable these little souls are!
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1. Joel had mild reflux and had to have his liquids thickened as a baby/young child. It took an hour to feed him a bottle.
2. Timmy had severe reflux along with other medical issues as an infant and had an NG tube at first and then had to have a g-tube placed for feedings at 7 months. He still receives most of his nutrition this way.
3. Ella required thickened liquids as an infant and was a very messy drinker, losing much out of her mouth because of poor muscle tone in her lips. She drinks safest from a straw.
4. Lucy is an "aspiration risk" baby and must have her liquids thickened. She also has reflux and frequently spits up. She loses much from her mouth at bottle time due to poor lip tone.

Average seen in my group= Reflux is a problem for at least 75% of these kids in varying degrees. Formula must be thickened for each of these babies. Jaw support should be used at bottle feedings. One in four may require g-tube feeding at some point in their infancy/early childhood. Other gastrointestinal problems may also be present.
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1. Joel has Hypothyroidism and requires thyroid hormone daily to grow, stay regular, etc.
2. Timmy doesn't have thyroid issues at this time.
3. Ella doesn't have a thyroid issues at this time but is anemic.
4. Lucy doesn't have thyroid issues at this time.

Average in my group: Half of the kids with Down syndrome will have endocrine issues of some type, usually manageable but sometimes serious.
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1. Joel's left eye wanders outwards intermittently; it's called "exotropia". He's had eye surgery once. He doesn't need glasses at this time.
2. Timmy has "Nystagmus" (involuntary movement of eyes), severe myopia/ nearsightedness of -15 and amblyopia (eye wanders inward)/esotropia. He wears very thick glasses, best at school.
3. Ella had crossed eyes and had surgery in both. She has astigmatism but won't wear glasses at school or home. Her eyes are getting lazy again and cross intermittently.
4. Lucy has had two eye exams but the ophthalmologist sees no problems yet.

Average in our group: Three out of four have eye muscle problems which developed over time. Timmy had nystagmus at birth. Half of the kids wear glasses, probably more will as time goes by.
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1. Joel has had ear tubes several times and was supposed to have his tonsils and adenoids removed, but problems related to blood thinner and illnesses prevented it. Joel also has asthma.
2. Timmy has had ear tubes several times and had his tonsils removed (couldn't remove adenoids due to internal anomoly).
3. Ella has had ear tubes several times, and had her tonsils and adenoids removed. Ear infections have affected her hearing.
4. Lucy hasn't had these surgeries yet. She has had several sinus infections over the year and aspiration pneumonia as an infant.

Average in our group: Kids with Down syndrome have multiple upper respiratory infections and floppy airways (trouble breathing while asleep, snoring) and will require ear tubes and their tonsils and adenoids removed (if possible).
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1. Joel knew over 100 ASL signs before he was 2 yrs. Lost most of them when he began to talk. Now talks in quotes and interestingly arranged sentences, often to himself. For instance, "Joel, is it you? Yeah, it's me."
2. Timmy has a few words; he learned to say "Papa" after he turned 6. He knows "No!" has probably 8 other words plus some names, He signs "more", "please", points and yesterday I saw him sign "no".
3. Ella has two words: "No" and "doh!" She signs "more".
4. Lucy says "mama" "papa" "uh-oh", "up", and signs "father" and "more". She tries to sing and do motions to little songs.

Average in our group: Half of the kids with DS will speak in sentences by the time they are in second or third grade or sooner. The other half will take longer or may not ever speak well. Signing and the picture exchange system can help. Speech therapy helps. When they do talk you will be ecstatically happy!!!
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1. Joel has been identified as being on the autism spectrum. He has obsessive-compusive behaviors and perseverates on certain subjects or objects of interest. Routine and the familiar is very important, transitions are difficult. Social skills are not what they should be and must be rehearsed and rehearsed. He has some sensory issues. He also has some sevant qualities and can use movie quotes brilliantly. What a kid!
2. Timmy doesn't seem to be on the spectrum and is more open and affectionate. However he still has oral defensiveness and can be very stubborn; communication is a problem for him. People love Timmy!
3. Ella has traits of autism and perseverates in playing with her scarf and flapping; in her own world and not responding to her name. Yet she is affectionate with us in her own way and smiles and laughs at the TV. She engages with other children only in routine things such as songs she knows and ring-around-the rosy that she's familiar with. Routine is everything. She will eat almost any food or non-food. She is our adorable mystery child.
4. Lucy shows no signs of autism or sensory sensitivity at this time. She is affectionate and loves one-on-one attention. What a character! She keeps us on our toes!

Average for OUR group=
Two out of four may have Autism Spectrum Disorder.
Average now seen in the General population: 1 child in 110 has autism.
Average in Children with Down syndrome: 1 child in 10 has autism.

How they term this dual diagnosis= "DS-ASD".
When did we realize it might be the case in our kids? At around 4+ years of age; a little later than it is usually discovered in children in the general population.
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Average for our group= Nothing is average, everything is 100% amazing! So interesting, so challenging! So different, so tiring, so worth it, so rewarding. Wow.
You can say that again. wow.

Memorial Day 2010

We visited Gramps' grave, and thought about him and other dear ones whom we've lost. We're so grateful to know that we'll be with them again someday!

Lucy is 18 months and WALKING!

Here she is, taking her tiny, careful steps around the island in the kitchen, following me like a little duckling. She's not a confident walker but spends more time upright now than crawling! Lucy is one that we'll soon be chasing, she's a busy little girl!

Life's Little Lessons*

By Dolores ;o)

5/5/10
Take a shower while you can; you never know when the water will be turned off or the hot water heater will break down. Do laundry while you can for the same reasons: machines break down.

Put a screen over your outside dryer vent to keep birds from building their nests in it. If there's a nest in there the birds stay warm but your clothes won't get dry no matter how many times you turn the dryer back on. You'll all run out of clean underwear.

If you have a dishwasher, the garbage disposal and hot water are routed through it. If your dishwasher breaks down (maybe it never worked right in the first place) or you take it out to put floor tile under it (maybe with tiles you've had for five years), you won't have hot water in your kitchen for dishes or baby's sink baths. You can do dishes in cold water if you must. But you must heat some water to add to a baby's sink bath. If your stove is also disconnected and moved into your family room during the floor tiling, you must use the microwave to heat water. If one of the kids microwaved a Chinese take-out box with metal handle and your microwave is broken or you have to stay off the kitchen floor while the tile cement or the grout dries, well then, you'll have to bathe the baby in the sled on the floor of the shower upstairs. More kids can fit in the sled at once anyway. But if the problem is the hot water heater, just forget giving anybody a bath upstairs, there won't be hot water up there either. Just send a note to school with your kids explaining why they're so dirty. Or...go to your married daughter's house for everyone's baths and showers and hope you don't overwhelm their hot water heater.

Brain freeze is not what happens when you eat ice cream-- it's what happens when you wash your hair in very cold water. If your brain is frozen you might feel dizzy. Hair warms up before your scalp does.

A new hot water heater costs about $500. Same with a new dishwasher. New underwear for everyone costs at least $50.

5-17-10
When you buy a second car, make sure it will seat your whole family or you'll have transportation problems when the larger vehicle is in the shop or you lose your keys for two weeks. You'll have to make two trips to get everybody to church, or ask somebody else for rides if your husband is the bishop and he forgets and drives the only car with keys to church for earlier meetings.

When one rear tire wears out and goes flat on your car you must buy two new rear tires. Same goes for the front tires. If by some chance it happens on both of your cars, you must buy a lot of new tires.

Tires cost about $100 each. Times 4 = $400 + tax.

5-22-10
You should order new glasses when they break the first time, you can only fix them with Super Glue or Shrink Tubing so many times. It takes time to get the new glasses and you can't drive without them. This will make it hard to get new ones. Well, you can order new glasses online IF you already have a prescription and your computer hasn't crashed.

You can live without a computer but pretty soon you feel like you've lost touch with far-away relatives you email and when/if you finally do get online again you will have lost all of your blog followers and you'll have so many of those FWD:FWD:FWD emails you may not be able to open your old email address anyway.

You should have more than one form of technology to communicate with family in case of fire, flood or an upcoming family reunion. If your computer crashes you could still use your cell phone. If the baby drops your cell phone in the toilet, hopefully by then you've replaced your computer. If not, be sure your husband also has a cell phone. If he takes it to work, well then try writing letters through the postal system-- if you have any stationary and stamps. You may have to go to the post office to buy these; here's hoping your new glasses have arrived and you can find your car keys!

Glasses with bifocal lenses cost $200. A computer costs $$$? (use the one in your husband's office). A cell phone has monthly fees (but is necessary with kids with special needs). A postage stamp is now 44 cents. To replace your car keys: $40 for a programmed key online, or $185 from the dealership including remote key fob and towing. 

If you pray always you may eventually find your keys under a load of clothing waiting to be folded after that dryer back-up.

*Always have money saved for emergencies!