We went to the library yesterday and signed up for the summer reading program. The kids insisted that Ava needed to be signed up too. I really did not feel like committing to read TWENTY books to her, but I agreed, yes, Ava should sign up too (even though she can't read, eat Sonic tater tots or go bowling).

Look at the book we happened to stumble across, and look how mesmerized she is.









Needless to say, I'm glad we signed her up. :)

The sight of my husband making this snack last night made me laugh out loud (Yes, LOL).

Perhaps because of the combination of ingredients he was using....lowfat low carb whole grain wraps, butter, and cheese.

Then again maybe it was only funny because it was midnight!

The Lazy Gardener's Method of Pulling Weeds

This method works wonders for getting ANYTHING done around here. All I have to do is say something like, "You know I really wish I could take you kids to the swimming pool today but I'm afraid I'll be too worn out after pulling all those weeds in the backyard." 

VOILA! Instant helpers!

And yes, I did have enough energy left to go to the pool, and took one extra weed-puller as well, our neighbor girl. The picture above especially cracked me up. He is all ready to go wearing his swimming trunks!

A totally heartwarming, totally true conversation with Hope this morning

Hope: Mommy, do we get to keep Ava forever?

Me: Yes.

Hope: Do we get to take her to the zoo with us?

Me: Yes.

Hope: Do we get to take her to the aquarium with us?

Me: Yes.

Hope: Do we even get to take her to heaven with us?

Me: (Tears) Well, yes, I guess we do. :)

Crawling....slightly improved.

...Thanks to the ongoing teaching efforts of big brother Simeon.

This is Parker. He needs our help. He has the following health issues:

1.Pulmonary Hypertension
2. Severely Obstructive Sleep Apnea.
3. Tracheotomy.
4.Ventilator
5. Tethered Spinal Cord
6. Failure to Thrive
7. G-tube
8. Bowel Obstruction
9. Colostomy
10. Down syndrome.

My friend Michelle at Downbloggers is trying to help his family raise money for the multiple medications, surgeries, hospitalizations, and treatments he is undergoing. How many times have you said, "I'm thankful that my children are healthy." And what about those who can't say that? If you are crafty, that is one way you can help. If you are not, like me, you can make a small donation, like I just did. Please take a look HERE if you are able to help with this wonderful project...For Parker's sake.

Ava has learned a new consonant. The "M" sound. I just have to share, it is absolutely melting my heart, because when she is practicing her new sound, it comes out "mama mama mama". I am quite sure she is not calling for me, but just the sound coming out of her mouth is breathtaking! Now if I can just capture the moment on video, I'll be sure to post it. Of course when she is practicing her "b" sound, the boys think she is saying "Bubba". And Daddy thinks she is saying "Papa". I bet we are all wrong!

The results are in......

I got a call from the developmental specialist this morning, bearing the results of the lab results for Ava. Are you ready for this? He said....Ava has......Trisomy 21. DOWN SYNDROME. Gasp!
Awkward pause.....
"Uh......OK? Thank you?"

Mmmmmm.....

All that fishing finally paid off!

"No"

Ava shakes her head when we ask her questions. I don't know if she really knows she is saying "no"or if she just enjoys all the laughter she gets out of it. The kids were on the front porch watching the thunderstorm with the door open while I was filming this, that was the screaming in the background. What timing, huh?

The Truth

I've had a several people leave comments about how sweet my children are, and every time I read those comments I feel a twinge of guilt that perhaps I have not been so truthful on this blog. So here's the other side of the story. Today Simeon squished Hope's "pet" snail....just to see her cry. Liesel pouted halfway across town because somebody interrupted her. Hope called Jude a "big fat boy" resulting in tears and wailing because Jude retaliated with, "I'm gonna tell Dad." A few days ago, Ava bit Hope. That's alright though, Hope bit her back.

So we have our moments.....I do however, think they are pretty special kids. John says, "We might as well brag about our kids, nobody else will." So I will continue to brag, and I'll try to remember to occasionally tell the other side of the truth too.

Hope's favorite hiding place

Something I find extremely adorable about Hope is that she picks the same hiding place-this bookshelf-almost every time we play, and she still believes that I don't have a clue where she is.



I also love that she wears her big sister's clothes all the time.

Backpack treasure hunt

I thoroughly enjoyed going through my kids' backpacks at the end of the school year to finally learn the answer to the frequently-asked but never answered question,  "What did you learn in school today?" ........I particularly enjoyed Liesel's journal, and I hope she doesn't get mad at me someday for publishing her inward thoughts and feelings on a public website. I just thought some of these journal entries were too cute not to blog. Shhh. Don't tell.

True Love

I like to think that love can be measured by actions. For example, I often think of the time I had a 101 degree temperature, and I felt so miserable! John was bringing me hot tea, cool wash cloths, lots of fluids, Tylenol.....I was so thankful to have him. As he was sitting beside me on the bed, I reached up to touch his face to thank him for his kindness towards me, his face felt hotter than mine!!!! His temperature was 104! He never even said a word about feeling sick himself....True love.

Today I witnessed another one of those "true love" moments. Liesel was holding Ava and she fell asleep and she wanted to just leave her that way. About 15 minutes later I heard a cough and sputter..and yes, Ava threw up all over Liesel!!! Liesel's response? "Mom, Ava just threw up on me. But it's OK. I don't mind. I think she might have had too much Pediasure." True love....

Bye Bye Pigtails :(

Four months of good nutrition and head massages have not helped the bald patches on Ava's head grow in. I took her to see the dermatologist (she saw two of them actually) this morning to see what could be done for her. It is unclear still whether the patches are alopecia areata

or the result of laying on her back in a crib for 4 years. The better prognosis would be the first. As it was explained to me this morning, "No matter how much fertilizer you use, if there is no grass, the grass won't grow." They asked me if we had ever seen pictures of her as a baby and whether she had hair. My mind tried to focus on this picture below and I could not for the life of me remember if she had hair or not. Well, she did, and a lot of it!

 

You probably can't tell in the photos, but the left side of her skull is flattened, from laying so long I imagine, and so that's why I imagine hair loss from laying is a possibility. If she layed long enough to damage the skull, I am sure she could have damaged some hair follicles too.

So for now we are going to rub one spot with steroid cream twice a day, and see if we can generate some peach fuzz growth. If so, there will be more options to help it grow out thicker and stronger. If it doesn't work, we'll assume it is the other, and we'll have to come up with some solutions like this: (Thanks Aunt Marlita!)

The doctor said no more pigtails or cornrows (I couldn't help but giggle at that statement)! As my friend Markay said...

"If God can restore the YEARS the locusts have eaten, how small a task it will be for him to restore hair follicles that were caused by a few years in an orphanage." 

Thank you for that reminder Markay. I hesitate to ask for prayer about something as insignificant as hair follicles, but doesn't He tell us in His Word that He does care about the number of hairs on our heads?

Tears

This is Elle, age 7. Her mother suggested this morning as they were saying their goodbye's, that maybe she could bless another little girl at the Good Will with this porcelain doll that has been shattered and glued together. As you can see, she didn't want to part with "Elizabeth". Apparently Elizabeth will be traveling to Mexico after all. If you want to follow Jason and Lisa's journey to Mexico their blog is roverhaus.blogspot.com.

Little Foot, Big Foot

As Von and Ava sat in the back of the truck together, I couldn't resist taking this picture. To the left is Ava's foot (age 4) and to the right is cousin Von's foot (age 3, exactly one year younger.) I promise I did not use photoshop or trick photography,  folks.

This is my niece Vienna. She couldn't wait to wake Ava up from her nap yesterday to give her this ball that she helped pick out. Isn't she sweet?

The "Bad Guys"

This is my nephew Von. He is 3. He has been looking for some "bad guys" to shoot for several days now, to no avail. So last night Simeon came out roaring, draped in a blanket, just so Von would have a bad guy to shoot. I love the grin on his face at his accomplishment.

Kids without video games

We have cousins driving through town, my brother Jason from Ohio and his family. They are on their way to Mexico, a 50 hour drive. That is quite a feat, especially with 4 kids. They are going to spend a year or two down there in the town where my parents live experiencing a different culture and a new adventure. So they have spent a few days here and the kids get along great. It has been so fun. Here's what happened when I made everyone turn the TV off and go enjoy the beautiful outdoor weather. I love how creative kids can be. This is Jason's chocolate lab puppy Moses, and the neighbors' puppy, a Schnauzer named Sassy from across the street, having a "dog fight". Please....don't call PETA.

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Ouch!

My hamstrings ache at the thought of sleeping in this position. Do yours?

Memorial Day

We took Nanny to visit Grandpa's grave site yesterday. It was a beautiful time of sharing, prayer, and singing Grandpa's favorite song, Come and Dine. Nanny explained to the kids that she will be buried next to Grandpa someday, and there were some tears shed. She emphasized that only her body would in the ground but she herself would be in heaven and having a grand time with Jesus and Grandpa.......... The kids were all ears. I know it was a day that none of us will ever forget. 

I'll know for next year to tell Hope beforehand that, although the flowers decorating the graves are beautiful, they are not for picking/bouquet-making.

I once read that there are two kinds of picture-takers: 1. people who take pictures of the really important events, like birthdays, graduations, vacations, and 2. people who take pictures everything and nothing in particular. Considering I have no pictures of the graduation or the baptism we drove 8 hours to see, I now know which type of picture-taker I am. (And I have learned that my husband is neither #1 or #2, does that go for all men?)

In my defense, the camera was buried and hidden somewhere in our plethora of  suitcases most of the weekend. Heather's graduation was beautiful, but you'll have to use your imagination. I'd like to think that her choice of majors, elementary ed/ special education, was influenced in a tiny way by a sweet little Ukrainian girl with special needs pictured below. Heather, we look forward to seeing what you will do with your life. I know you will make Jesus proud.

And Jeremy, we are so proud of your decision to follow the Lord and submit to His desires for your life as evidenced by water baptism. I found it particularly special that you chose to be baptized in Grandma's pool surrounded by family. Thank you for letting us be a part of that wonderful moment and being an example to my kids. We are so proud of you.

And now for 2 of the insignificant photos of the weekend.....Ava's first swim....

This is the baby bed that Papaw slept in so many years ago, as well as all of his kids and grandkids, (minus Ava. But at least she got to sit in it just for the photo.) We had a great time. Thanks for having us Grandma and Papaw!

Baby got rhythm?

Is it just my imagination, or is this girl trying to dance? Observe the arms.....looks like she is a future rap dancer.

Summer fun

Thank goodness for whoever invented the stroller seatbelt!

Tomboys in dresses

Fun with sidewalk chalk, we just have to learn we don't eat it

My multitalented daughter, knitting! Thanks for the lessons, Oma!

We are enjoying Opa and Oma, and Uncle Joel too!

Remember a few weeks ago I wrote about these precious sisters in Haiti and the food shortage that they were experiencing in their area...Well I am grieved today to report that one of the little girls, Micah, has died of malnutrition, and her twin is in the hospital fighting for her life.

Please pray for her surviving twin, Mariah, and for their big sister Lilliana who surely understands enough to be suffering the loss of one sister and worried for the well being of the other. Please pray for the Petersons, the adoptive family who loved this child dearly but never got to hold her. Not only are they grieving the loss of one child they never met, but also struggling with the knowledge that the other is probably hurting and they are unable to comfort her. I can only imagine the pain they are experiencing knowing that Micah died without ever knowing the love of an earthly mother and father. I know there is comfort in the assurance that Micah is with her Heavenly Father for eternity.

Beautiful Micah...Jesus is now wiping those sad tears away

May 20

Last night we celebrated 13 years of wedded bliss. I can honestly say I have the best husband, I wouldn't want any other! Happy Anniversary honey. I don't even mind that you've been using my toothbrush!

Slowly but surely

The biggest obstacle we are dealing with right now in Ava's developmental progress is her ongoing sensory issues. While she truly is doing so well, she still does not like the feel of her hands touching the floor and her body weight bearing down on her arms. Until she is totally comfortable with it, she'll continue to crawl on her elbows, not the "prettiest" crawl, but it gets her where she needs to go. Still, I am amazed that she sees what she wants, and understands how to get to it. Considering a few months ago, she didn't notice the toys that were in front of her. Well, I decided to post some of the 'not so pretty' pictures of therapy so you can get an idea of what a chore it is for kids with sensory issues to achieve normal developmental milestones. Observe her hands and the wince on her face as the therapist attempts to get her to bear weight on her hands. Again, she has come so far, but still have a long ways to go. She is bearing some weight on her feet, another major feat for having such low muscle tone. Yay, Ava!

Another milestone...Ava has started putting toys in her mouth and chewing on them. I gave her a cracker to see what she would do, and.....she put it in her mouth and bit it. I am so pleased. She is still getting most of her nutrition via bottle, but she can hold it herself now (big progress) and she is able to eat applesauce, and baby food with a spoon on a fairly regular basis.

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