Jack's First Cake Decoration

Thursday was our pastor's (known as Pop to Jack) birthday. We decided to celebrate today. I made a yummy dairy free cookie cake and Jack helped decorate it by lending me a couple hands. :)

More Videos!

I can tell that I will be playing with Windows Movie Maker now. Here's a couple more videos.

Wow! I did it!

I'm very proud to say that I edited the pan of the sky, the deck, and the water out of this video and made it small enough to fit here on the blog. It's my first video edit. Hope you enjoyed it. Thanks for capturing the fun, Anne!

Cameras are downloaded.

It's really not easy being the press agent and photographer for a fun loving and well-loved little guy like Jack. Over half the time I forget the camera, sometimes I don't really get any good pictures, and sometimes I don't download the camera(s) for months. I downloaded both the digital cameras and found a few good pictures that I don't think I've posted yet. If we've hung out with you over the last few months and you find no pictures here refer to sentence 2 above or maybe I gave you the camera (Anne!) and you took video instead of pictures and they are too long to post.

We rode the train at the zoo. We all wouldn't fit on one seat and Jack had to make sure his friends boarded before the train took off. (Ha--just noticed that Jack and Christie matched that day.) Jack loves trees. Sidney loves animals. I'm gonna miss those boys when they run off and join Green Peace. LOL!

Sandra was one of Jack's favorite classmates this year. She was really sweet and always ready to give him a hug. This is the only picture that I managed to take at her 5th birthday party. I think she was trying to give him the balloon but he wanted another hug.

Mr. Cool heads out to the pool on a hot day.

It was Grandma's birthday and Jeanie crowned her Queen for the evening.

Queen Elizabeth has a lively, fun-loving court.

We traveled a few hours to meet up with some of our friends with Apert syndrome. Sorry the picture is so dark. I did not take this so I don't know what happened.

I did not get very many pictures this year. Here are Jack and Morgan enjoying a movie together. Morgan was very excited that she would get to see Jack again this year. She still calls him "Baby Jack" and she actually mistook Isaiah for "Baby Jack" because she was thinking of Jack as a baby. Jack was excited to see Morgan too. I don't know what it is about those too but they are somehow drawn to each other and very happy to just be together.

What's that on the hill behind our yard?

It's a deer! David got this shot one morning while he was just looking out the window.

They have a pond near the splash park we took Jack to when we were at the beach. It has turtles and ducks in it. We were saying, "Look, Jack. Turtles. Ducks."

Jack was over on the bayside of the rail looking up at the underside of the bridge that leads to the beach.

Jack's teacher and classroom aides gave each of the kids this nifty little mesh drawstring bag filled with fun stuff at the end of the year party. It was perfect for having Jack carry his toys out to the beach.

But at the end of the day when Jack was tired, Daddy carried him off the beach.

We went over to Oma and Opa's house for Independence Day. There was a technological mishap and there are lots of videos of pretty much sky and water but not many pictures (LOL). I took this one from the safety of the trampoline while Noah lit some fireworks. Noah is such a great uncle to Jack. He's a kid and he was incredibly excited about his fireworks but he would not do anything that might scare Jack. Before he lit a single firecracker, he reviewed each and every item with me to make sure that it would not bother Jack. How sweet is that? How many 11 year old boys take the time to think of a 4 year old? Jack adores Noah. I wish I'd gotten a picture of him playing with Noah. It's precious!

Jack is becoming much more social and interactive lately. He actually talks more in front of other people and talks to strangers at the store. It's awesome to see him grow and develop.

Bathing not washing!

Tonight I was giving Jack a bath. As I bathed him, I said, "Washing Jack."
He pushed my hand away. I said something like it's time to wash that's what
a bath is for. [I know--too many words, not a "Jack-able" phrase. Never said
I was perfect :)] Jack pushed my hand away, said washing and signed wash
hands gesturing toward the sink. I said "Yes, washing, like wash hands." He
looked at me quite seriously and said, "Bath." "Oh" I said, "Bathing Jack"
and he allowed me to bathe him. Isn't that great? He basically said, "Hey
you wash hands at the sink. In the bathtub, you do not wash, you bathe." How
awesome is that? What complex thinking and expression of thought! Oh the
things I will learn from him!

Have a great night everyone!
Marie

Back Home and Off Again

Dave had to go back to work today so we got in from the beach sometime after midnight. Poor David!
Jack and I are off to celebrate Independence Day with my dad (Opa), Anne (Oma), and my little brother (Uncle) Noah.

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Last Lunch on the Beach

Ahhhh...our short vacation is rapidly coming to an end. It's been absolutely fabulous.

This is great!

Sun, sand, and this cutest little guy in the world on my beach blanket. Not to mention Mr. Handsome, his ocean companion. Thank you Lord!

The fun begins

with a SPWASH! Jack did so great driving down with very short stops (only 2 and just for quick potty breaks). We thought it would be nice if we took him to the local free splash park first. I sure wish we had some of these at home. He loved it, of course!

Ocean

We're almost there. We can see the ocean.

Road Fuel!

What else? Fwies and hom buh guhs from Burger King. We are off on an impromptu short beach vacation. It feels so good just to be headed out. We are so glad that Jack loves the beach and the ocean (he still sometimes calls it the pool). White sandy beaches here we come!!!

I'm shrinking!

I've been asked recently if I'm losing weight. I did not really think so until I started looking back at some old pictures. The thing is though...I'm not just getting smaller around, I'm also shrinking lengthwise. Look at these pictures.

Here I am shortly after Jack's birth. This was taken in June of 2005. A year later in 2006 you can definitely tell that I've lost some weight.

Here I am in 2007. I think this is where the loss of height really starts to become evident.

A year later (2008) I appear to be wearing the same outfit (really and it's not even one of my favorites) and I'm definitely shorter than the year before.

Now, look at this! The height loss is rapidly increasing. Here I am enjoying a little computer time before my little guy heads off to bed. Jack barely fits in my lap anymore since I'm shrinking. If he was sitting up, you would not even be able to see my face!

Do you see how I am shrinking? I may just call the doctor in the morning.

Sleep!

This was Jack during his nap today. He does not usually sleep deep enough to require the Bipap during naps. He sounds pretty good here. He seems to be on the downhill side of the fight against reflux, allergies, and sleep apnea. I think our new medication routine is working. :)

Wawa peek a goo!

Wawa, peek a goo.
Jack wants to sit in the driver's seat while I stand outside, crouch down under the window and pop up saying, "Peek a boo!"
Ain't life great?

Just want to eat 'im up!

How can you look at this little guy and not instantly fall in love?

We want to win!

We want to win this cookbook. They are giving it away at http://www.onefrugalfoodie.com/2009/06/22/giveaway-cookies-for-everyone/. It apparently has some really good recipes for people with food allergies and food intolerances. Jack can't have dairy so he's limited to what I can make since it's still a little hard to find dairy free snacks. I hope to expand our repetoire with this book.

How's Jack?

I get asked this lovely question all the time. So many people care about him. It's just wonderful.
The problem is it's complicated. Jack is doing great because he's growing and developing daily. During the day, on most days, Jack is happy and full of energy with a robust appetite. Of course, today and yesterday have been a bit strange but more on that later.
Nights....a whole other story. Nights at our house are well, there's no other way to put this, they're scary. Jack is not doing great at night. He requires up to 24 cm of H2O pressure (trust me that's a lot) just to be able to take in a breath and that's not necessarily a good deep oxygen-filled breath. We add supplemental oxygen most nights. He is very congested at night and he is having awful problems with his reflux. The high pressure air from the Bipap is blowing up his little tummy. It's a crazy cycle and we don't know what comes first so we don't know exactly what to do.
The air quality is not great here right now plus there are a ton of allergens in the air so we (Jack's parents, his ENT, and our family doctor) think that this is at least contributing to Jack's increased congestion. But then there's his reflux. Reflux can cause increased congestion but increased congestion can aggravate reflux especially if Jack is gagging on his secretions. Initially we thought Jack was simply gagging on those secretions which caused him to throw up. We solved that problem by adding an antihistamine and drying up the secretions.That kept him from waking up and throwing up into the mask.
Then, he started just refluxing without making a sound or waking up. The problem with this is that he was not coughing or anything and this stuff could go in his lungs and cause pneumonia or other damage. We realized that his tummy was very gurgly and lo and behold nausea and vomiting is a side effect of the Zyrtec we were giving him! We changed his meds again and the reflux is not coming all the way up but he's coughing again so we don't know if the Claritin is not drying up the secretions well enough or if the reflux is just coming up the back of Jack's throat.
His little tummy continues to blow up. We don't know why he's doing this when he has not done it before. We think it may be because he's swallowing air as he swallows those sinus secretions or swallows back down the reflux. We've started eating much earlier in the evening so Jack has a few hours between eating his big dinner and going to sleep. We've even given him Simethicone to help pass any gas that he may have. The problem here is the air gets pushed into the tummy, the tummy expands, the tummy inhibits movement of the diaphragm so Jack has an even harder time getting air in, the Bipap senses this and increases the air pressure to get the air in and the tummy continues to blow up. See how this can go on and on endlessly?
The past couple of days Jack has not been himself during the day either. He's fussier than normal and not quite as energetic although he had a great time in the pool yesterday evening. Yesterday, we are fairly certain his blood sugar must have dropped pretty low. He had all the classic signs and he perked up after we got some sugar and a little protein into him. Today he's just not his easy going self. Maybe he's just not truly resting well, maybe a hundred other things....
I don't want to be all overly dramatic here. The truth is David and I are not sleeping well for watching and worrying over how Jack will do each night BUT our days are filled with joy and discovery and friends.
So if you ask me how Jack's doing and I pause before answering it's cause I just don't know what to say....he's great but he's also having some scary nights.....

Sometimes you make your own

rain! We just love water. Jack "hupped" (helped for those not used to "Jack-speak") water the flowers and then he cooled off a bit. Thanks for the idea, Petersons!

Rain rain we love to play!

We're changing the nursery rhyme! Jack loves playing in any kind of water. As long as there's no thunder or lightning and he looks so handsome in his fireman rain coat, why not?

How You Can Help!

Jack is a "late talker." He is expressing himself verbally more every day. He is interacting more every day. I think a lot of it has to do with the fact that we've tried to stop pushing for the words. We are focused more on "letting the good times roll" and guess what? The words are "rolling off his tongue." :) I'm on this email group for late talking children. I joined it after I learned of the work of Dr. James MacDonald. Here is his most recent post to the list. Please read and consider how you can take the following tips and use them in your interactions with Jack.


HOW YOU CAN HELP MY CHILD DEVELOP.
When a child is delayed or not socially outgoing, he or she needs
people to interact in different ways than is typical. When a child has
autism pdd, aspergers, Down syndrome, cerebral palsy or other
conditions effecting communication, they have special needs of their
life partners if they are to learn and build relationships with
them. Think of the guides below similar to ones you would give to
people if you had a child with diabetes, heart problems, allergies,
special fears, or different learning styles. For example, for a
diabetic child, you would let everyone know how to and how not to feed
and treat them. Similarly with "late talking children" we need to
let their life partners know how to interact so the child will show
his best and so they will truly see what the child can really do.
HELLO! You can really help my child develop. You do not need
training; you just need to be his partner. The more real friends he
has now, the more he will learn and fit in the world.
Thanks for connecting and helping my child grow.
"_____’__" Family.
My child can do more than you think!
My child will learn, communicate and care about you more when you
do some of the following:
Interact WITH not AT my child.
Enter physically in his world and observe him silently for a short
while.
Become aware of his interests and ability level.
Then, gently join into his activity without disrupting it.
Do what the child is doing.
Do not do a lot more than he is doing- but be active.
Match his movements; act in ways he can try to do.
Respond to his movements with similar, related movements.
Talk about the here and now, about the child’s experiences.
Be animated: be more interesting than what is distracting him. Do more of what you do when he stays with you
Do less of what you do when he leaves you.
Match his speech: talk in ways he can now talk (this will help him
talk more.)
Respond to his speech: show him you are interested.
Wait silently for him to take his turn
Don’t just praise him: enjoy him instead; your response is the best
reward.
Take turns with action and talk: be sure to give and take.
If you don’t understand him, treat it as a foreign language and simply
give him an English word that fits the situation.
Limit your questions and demands: comment instead.
Bottom line: the more you enjoy each other, the more my child will
learn with you.