ETHAN!

You may remember last September Jack and I helped to host a baby shower for his sweet cousin, Alichia. Well, Ethan was born last October. I don't have a great picture of him from right after he was born but you can kind of see him here.




Alichia and Ethan came to town yesterday so we went over to Rob, Bobbie, McCahill, and Jeanie's house to visit. He's gotten so big!!!!
This time of year, visiting Jeanie and McCahill means getting in the pool! Yesterday, we had the added bonus of Emma who was visiting Jeanie. Here's the swimsuit girls.....

Emma and Jeanie are sweethearts who had a great time "babysitting 2 babies!" Ha ha, Jack's just about as big as Jeanie and she still calls him a baby. :) Actually, Ethan is about as big as tiny Jeanie too. Jack had a lot of fun playing with Emma this visit, too. We've met Emma before but never really had a chance to play with her until last night.

I love this picture of McCahill. Doesn't he look like one of those crazy wrestling characters?

Bobbie shot some video of us in the pool but Ethan did not bring his swim trunks so he was in his birthday suit and well, this is a family blog. he he he....Ethan loves the pool just like his older cousins and just like his older cousins (and Jack) he knows that he can count on Aunt Marie (Mama) as the ONLY adult who will jump around and act a fool in a cold pool so the kids can have some fun. :p

Day Pool!

I am very fortunate to have a flexible job. I work some odd hours sometimes. I might leave home at 5 am on my way to an appointment and not get back home until after 7 pm the same day because the last appointment runs late. But then there are days like today where I get started fairly early in the morning and get finished early in the afternoon. We try to take advantage of those kinds of days. Today it resulted in....Day Pool!

Why do we call it Day Pool? Well, Jack recently began calling swimming at Jeanie and McCahill's house Night Pool. Today, we were telling him that it was daytime so this was Day Pool not Night Pool. Thanks again, Jeanie, McCahill, Bobbie, and Grandma (and Michael for the brief moment we saw you), we had a great time!

McDonald's Old Style-We're Lovin It!

McDonald's Happy Meals are being given out in the old style happy meal boxes again. Now that Jack can eat the fries from McDonald's (the "flavoring" in them has dairy), he can have a full-fledged Happy Meal. Isn't he adorable?

Awesome Kid!

Jack is just an awesome little guy. Today I cried over the most ordinary of events. Jack rolled a ball and talked with a guy at our church. Sounds pretty uneventful, right? Well, not if your kiddo does not talk much around other people, not if people don't usually understand him, not if he is still mostly at the stage of playing beside and not with others, and not if you've never seen him spend so much time playing with and talking to an adult that was not you or your husband. We attend a small house church and Jack was outside playing on the deck. Stephen stepped outside to play with Jack because Jack pulled him and asked him to "wok ah side (walk outside)" with him. I watched this as I tried to listen to our preacher. I heard Jack sit down and start bouncing and spinning Irish. "Ah well," I thought, "I guess that's the end of that interaction." Then I heard Stephen ask Jack to roll him the ball. Jack continued to spin and bounce Irish. Stephen remarkably persisted. As I heard Stephen continue to ask, I braced myself. Imagine my surprise as I heard Jack say, "Ready". Somewhere between my actually listening to and participating in our church discussion and having my thoughts, Stephen had gotten Jack to begin playing with him. I heard them go back and forth a couple of times. Jack was talking WITH Stephen and playing WITH him! I almost couldn't believe it. It was so awesome that I actually interrupted our church discussion to say, "I'm sorry to interrupt but, praise God, Jack is playing with Stephen." Because we are a small church, everyone knew how much this meant and joined me in my joy.
Of course, Jack's not a perfect kiddo. He did not want to leave church and fussed and griped about getting into the car. I had to be firm and put him in the car even as he fussed about it. I reminded him that we needed to go shopping--an activity that he enjoys very much recently. Jack's been doing this fussing about getting in the car alot lately so when we got to the store, I reminded him before he got out that we were going to go into the store, walk around a bit and do our shopping and then we would check out and get back in the car. I told him that after check-out, we would not be delaying but getting straight into the car. He enjoyed shopping and waited patiently in the check-out line. But when it came time to go to the car......he made his protest loudly and initially tried to drop to the ground as our helpful grocery bagger pushed our cart to the car. I picked him up and reminded him that we needed to go directly to the car and since he was not getting up I would have to help him get there. As we got closer to the car he asked to be put down so I did. He continued to fuss as we got into the car. He continually said, "Get out. Get out." as he cried and HELPED ME get him in his carseat. It was almost funny. There he was crying and fussing but doing exactly what I asked him to. I feel so blessed to have such a great kid. He obviously did not want to get in the car but there he was doing exactly as I asked. Was he happy about it? No. Did he lie and pretend to be happy about it? No. Did he communicate with me? Yes, yes he did. How awesome is that!

Meet Irish!

It occurs to me that some of you have not gotten to meet Irish. Tom Hanks (in Castaway) had Wilson. Well, Jack has Irish. Irish is a green basketball with Luck of the Irish written on one side and a fairly fierce looking basketball playing leprechaun on the other side. Grandma gave Jack Irish some time ago but it wasn't until a couple of months ago that Jack & Irish grew close. Irish goes just about everywhere with us. Yes, we talk about the basketball as if he's a person. He's a versatile guy who is great for spinning, kicking, bouncing, rolling, balancing on, playing alone with or joining a friend or two.

Backyard Fun!

*sigh*

Well, you can't really feed a child two hamburgers, have him traumatized by allergy testing, then give him his apple pie and another burger (the leftover one that you ordered for yourself but did not eat) and then expect him to get excited about a pizza that wasn't even a very good pizza. $5 Little Caesar's cheese pizza, I'm sorry but we don't love you....he took a couple of bites of pizza, and he ate about 1/4 of a breadstick but that was it. We'll try again at lunch tomorrow. And next time, I'm getting a better pizza!

Ever been asked to pray for a pizza?

We're praying that Jack eats this pizza, enjoys this pizza, and still has a restful night of sleep without increased congestion.

Allergy Testing Results

The scratch test and intradermal tests were both negative. That's good. It really is good news...but it's also puzzling. The reason we finally proceeded with the allergy testing was because Jack's congestion became so bad that it was out of control recently. His nasal turbinates are still impressively huge. They are so big that our allergist did not even believe his own eyes and memory. He looked three times during the office visit today and had the nurse practitioner look too. The swollen turbinates are a pretty good sign that a person has allergies. There are other causes too. Dr. LaRussa said that it is possible that Jack has vasomotor rhinitis. Nobody knows what causes it. It is aggravated by fumes, odors, temperature and atmospheric changes, smoke, and other irritants. This type of rhinitis occurs year round so that does really sound like Jack. This could explain why Jack has increased difficulty with congestion when he is around strong smells such as cleaning productsand strong perfumes. Regarding the dairy, Dr. LaRussa says that based on the history we provided it's pretty clear that Jack has a dairy intolerance and it would be wise to continuing avoiding obvious forms of milk like milk, yogurt, milkshakes, ice cream, and forms of uncooked milk. However, he said that Jack may be able to tolerate cheese (YIPEEE!!!) and he stated that typically things like birthday cake, pancakes and waffles have their milk proteins so denatured by cooking that dairy intolerant people can tolerant them okay. He basically advised us to proceed with caution. He acknowledged that Jack's predisposition for congestion may cause him to need to avoid more than your average dairy intolerant person. So we proceed with caution.
Sent from my Palm Treo

More Allergy Testing

Scratch came back essentially negative. This is especially puzzling given Jack's swollen nasal turbinates. They are huge! Dr. LaRussa was scratching his head and so are we. So after much consideration, we opted to proceed with the intradermal testing. Jack screamed and cried and I feel like a punk. David who was holding Jack for the testing is currently not talking much. We're taking a break and letting Jack walk the halls for 10 minutes. Pray for us trying to take him back in and pray that we'll get to know something helpful.

Allergy Testing

It begins with a scratch test.

Really We Mean It! Let Your Kids Comment and Ask

If you have not read my previous post on children's comments, you can read it here. I wrote that almost two years ago and David and I still mean it and we meet people every day that simply refuse to believe us when we say, "It's okay. Your child is just being curious. Let him/her ask. We don't mind." So I'm saying it again....
We know that Jack is different. We are fairly confident in saying that Jack knows he is different. David, Jack, and I are very comfortable with his differences. He's a happy boy and we feel extremely blessed to be his parents. The truth is we feel unworthy to be his parents. But that's a whole other topic....
Young children open their mouths and their thoughts often spill out without any kind of filter. They use their immature vocabulary to speak their mind. I am quite sure that one day the shoe will be on the other foot and Jack will embarrass me by something he says quite innocently. So I'll ask you now to show mercy on me and be understanding that Jack will be speaking his mind with whatever vocabulary he has.
Jack loves being around other children especially laughing, squealing children. As he gets close to your laughing, squealing child, your child might begin to notice his obvious physical differences and point out that Jack has a big head or his face looks funny or he looks weird or I've never seen eyes like that. Your child may truly truly embarrass you by saying, quite loudly, "Hey, look at that kid." I promise you if you try to shush your child at this point, he or she will be even louder when they say again "Look at him." It's okay, really! Look, you know your kiddo. If you truly feel that your child is willfully being mean/spiteful/hateful, then please escort them far far far away from us and have whatever talk you need to have. But I'll bet most of the time you know that your child is just being curious and does not have a big enough vocabulary to express the curiousity he or she has. Please introduce that child to us. Escort him/her over to us and say, "Hello." Ask us for Jack's name. Introduce us to your child. If you ask us, we will answer so let your child ask. If it makes you feel better, help to rephrase your child's questions. For instance, your child has said "Look at that kid's funny face." You know your child is not being mean but he/she does not understand what he/she is seeing. Bring him/her over and say, "Hi, this is [insert your child's name here]. What's your son's name?" I will say (probably with a huge smile on my face), "Hi, [your child's name], this is Jack." Then I will turn to Jack and say, "Jack, this is [your child's name], 'can you say hi?'" He might say, "Hi" but then again he might not. At this point, please ask me about Jack in whatever way you feel comfortable. Or let your child ask. I'm really quite friendly and will try to explain things simply in a way your child can understand. Some days my responses are more in-depth than others. What's really important to us (David and Marie) is that you and your children not avoid us. By talking to us (David, Marie, and Jack) you will get to know us as regular folks. Everyone has differences. Jack's differences are just readily apparent.

Worn Out but Breathing Pretty Well

We were able to go back over to Jeanie and McCahill's again this evening. Our swimming got cut short by thunder, lightning, and a sudden "monsoon" but we still had great fun playing. Jack was worn out from all the fun. He is a bit congested but he was breathing fairly well on his own for a bit. Isn't he the cutest little sleeper?

Night Pool

Jack's cousins, Jeanie and McCahill have a pool in their backyard. They've been wanting us to come over and swim but we have not managed to make it over there at a good time or a good weather day for swimming until yesterday. It was night but it really wasn't as dark as this video appears. Bobbie took the video using her cool (sorry I don't remember what it's called) phone. At the beginning of the video, Jeanie and I (and Jack sort of) are chanting, "Night pool" because that's what Jeanie and McCahill call it when you go swimming in the dusk or dark. Bobbie is shining a flashlight on us so you can see us in the pool. It was like one of those old movies where the suspect is interogated with a light shining in their eyes. LOL

This year Jack is actually head and shoulders above the water. I kept his float suit on him just for additional protection but he loves being able to independently move about in the pool. "Night pool" was a lot of fun and we're going to try to get over there a bit more often. So many of Jack's favorite things in one place--cousins, water, outside, and walking and swimming and Mama, too!

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.

More Party Pictures

I had a request for MORE party pictures. It was hard to capture all the stuff there was to do. The swings, the pools, the slides, the bouncy house, the play house, the water table, and all the other fun backyard toys.

Sidney, Michael, and Jack going into cookie coma while Nana enjoys her hamburger.

I should have gotten all the kids together in the big pool. That would have been a great shot! Here's an idea of how many kids we had. There were more that you cannot see in this picture, though.

Rocking horse. I almost forgot to mention the rocking horse.

Everyone enjoyed some bubble fun.

Kyle took pictures on his camera too and has promised copies so there will probably be even more party pictures to come!

Thank you, Kyle!

Oh my goodness, I realized that I forgot to thank our party photographer. Thank you, Kyle, for running around after kids with two cameras draped around your neck and getting some fabulous pictures and even some great video. You're the best!