Wednesday, December 31, 2008

Tuesday, December 30, 2008

Of Course there are Christmas Pictures

First up, Christmas put on by the school. Jack's preschool class has this thing they are doing this year where they use the kids' hands in all these crafty projects throughout the year. It's a cute thing showing how much the kids grow throughout the years but, truly, I still count and almost cry each time I see those five fingers made into a craft. So....all these holiday goodies are extra special to me.



Jack colored!!!! See the scribbled green, orange, purple and red? That's Jack's work on this little plate. We plan to spend more of the new year talking to the vision folks about Jack's vision. We are beginning to notice more and more that he really does not seem to see very well. He has an amazing memory and that memory is how he gets by with alot of things. We'll keep you posted.


Next, Christmas Eve Eve...Mommy and Jack enjoyed reading one of Jack's "sound books". We call it Ding Dong because the doorbell is featured prominently in the story.

Elise, Holly, and Patrick came over for an early Smith celebration. It was late and Jack was tired so Elise helped him open up his present. It's a very musical Christmas this year!
I think Elise loved the dress up box that Uncle Jack gave her.
Holly and Patrick had to work Christmas Eve so they let Elise spend the night with us Christmas Eve Eve. Here are Elise and Jack reading The Night Before Christmas just before we left for the big Smith gathering late on Christmas Eve.
The Big Smith gathering--Lisa had a pile of kids sitting on her waiting for the present opening to begin. Where's Jack? Passed out in a bedroom upstairs!I opened Jack's presents for him since he was asleep upstairs. Nobody took a picture of me being an excited kid opening presents. It was a pretty good imitation I thought. :) (Don't worry Jack is not wild about unwrapping stuff yet so my opening it for him was a good thing. The stuff was ready to go the next morning.)
Looks like Grandma liked her present.

We all got a lot of really nice things for Christmas. Yes, it's a slide in our living room.
And a Little People Circus...
More practice sliding after breakfast.


After we played at home, it was time for the tired family to head to Nana's for the Big Phillips get-together.
Who is getting a picture of who?
Wandering through the crowd...







I had the mistaken idea that I could get Jack tired enough to take a nap so he would be nicely rested before the Petersons came over for our after Christmas get together. Anyway, he still loves riding in his little red car. What would Christmas be without two best buds and a train (and Kyle's shadow)?
Sidney likes to unwrap stuff.

He must have taught Sophie about gifts and unwrapping too!

Sophie likes her kitty cat!

Jack just watched Wall E (well the first part of it) and then he got a front loader from Sidney's Nana--cool to see how the wheels were turning. It's like he was thinking "Oh I get how this thing works. It's kind of like the movie."

We really enjoyed Christmas this year. We are all (still) very tired from all the running around and staying up late but it was really worth it. We made no trips to the emergency room and other than being a bit worn out Jack had a good time. He is really enjoying all the great things that everyone got him. It's a very musical Christmas!!! We love to hear him playing with his drums and bongos and maracas and jingle bells.
I don't know if I'll get a chance to post again before the New Year. I'm ending this year (maybe) with this final picture to show everyone just what we can look forward to in the coming year. At Jack's last IEP meeting held the week school let out for Christmas, the IEP team added a new goal to Jack's IEP. The new goal is that Jack will walk from the front door to his classroom with an appropriately sized backpack by the end of the school year. We were supposed to start out with an empty pack and build our way up. Well, the other day, I just thought I'd see how he did. He walked all around our neighborhood and out running errands wearing his little backpack with about 5-7 pounds of his stuff (and my stuff) in it. God is good and I look forward to posting about it in the new year!

Happy New Year!

Monday, December 29, 2008

Sleep Apnea/CPAP update

I looked back and realized that we got things all smoothed out and have a system going to control Jack's sleep apnea and I have not posted about it. If you go back and look at posts regarding CPAP/Bipap and sleep apnea, you will see that this has been a long hard road that involved over a year of functioning on little to no sleep. David and I both continued to work our full-time jobs, take care of Jack, keep our household running, and even do battle with well-meaning yet misguided school officials while getting it all worked out. Honestly, I don't know how we did it. I know that we did not do it alone. We had many many people praying for us and, of course, God had us in his hand with his plan in mind the whole time.
The end result is that earlier this year we got a Bipap AVAPs. It is a wonderful machine that measures each breath that Jack takes and automatically adjusts the inspiratory pressure up and down as needed. Jack tolerates this machine so much better and we are all actually sleeping most of the night through most nights. We still have difficulties when Jack is sick because he does not tolerate high levels of pressure then. Jack does not usually desaturate (drop his oxygen level) unless he has some extra congestion. Once we add a little oxygen, he does fine. Jack still does not tolerate putting the mask on while awake. We still walk the fine line of getting him to sleep deeply enough to get the mask on but not so deep that he drops his oxygen so low that he starts waking up again. He actually does get it now that the mask helps him to breathe. Sometimes, he rouses a bit while we are putting the mask on, we tell him that it's okay, it's just his breathing mask and he goes back to sleep while we get the mask strapped on correctly.

Here's all the stuff that I can think of right now that is important regarding using the Bipap.
1. The right machine: We had to research how the machines worked so we knew how to ask for the right machine for Jack. This part would have been a lot harder if I did not already understand respiratory terminology. You can learn and if you write to me, I will help you the best I can.
2. A mask that fits: If the mask does not fit correctly, you will hear air leaking around it. If you hear air, you can bet that your kiddo can feel it and who wants air blowing into their eye or around their face while sleeping? Also, if there is an air leak, the machine cannot deliver the needed pressure. Jack is currently using an adult large nasal mask as a full face mask. Having a craniofacial condition makes it a bit harder to find a mask that fits correctly. The ones that we have tried that were made for children just won't work with Jack. Your respiratory supplier should help you find a mask that fits your child.
3. Headgear that works: The purpose of the headgear is to hold the mask in place. Sometimes, the headgear that comes with the mask you order does not do the best job of holding the mask in place for your child. Experiment! If you've got sewing skills, sew something that you think will work. No sewing skills, just be creative! Pay attention to where the headgear and mask tends to slip on your child's head and find some way to make adjustments. We attached additional pieces of velcro to lessen slippage of Jack's mask.
4. Gentleness combined with a willingness to lose sleep if necessary to wait him out: As I mentioned before, we have to hit that special combination of asleep enough but not so deep that he drops his oxygen level. Some nights, if we don't get him hooked up pretty quickly, it takes a looooonnnnnnnggggg time to get that mask on. If Jack starts waking up and gets fussy, we stop and comfort him and let him get back to sleep. We wait and try again and again and again and again and again and again as many times as it takes. We have learned that it does not pay to try to fight him. He ends up awake and screaming and we feel like we've tortured him. We don't want to make him afraid to fall asleep.
5. Be willing to go your own way: Throw out all the advice given to you by the "professionals" about how to get your kid to wear the mask. It must work for some kids and that's great if it works for yours. If not, be willing to come up with your own plan! That's what we've done and we are all sleeping much better.
6. You may have to lose sleep and/or reconfigure your sleeping arrangements to maximize sleep: If your child is sleeping in another room down the hall from you, you will not be able to tell when he/she is gently rousing and needs gentle reassurance that all is well and that thing on his/her face is helping him/her to breathe. When learning to tolerate the mask, this rousing will happen more frequently. In Jack's case, gentle rousing lead to a panicked, frantic pulling at the mask to get it off. If we did not notice him gently rousing, we had a screaming child on our hands. If your child is gently rousing, you can hit the "ramp" button on your machine so that the pressure is immediately lowered and the child does not have such a high volume of pressure hitting him/her. Doing this before panic sets in can sometimes be the difference from having to take the mask off and start all over and keeping the mask on and everybody getting sleep.

That's all I can think of right now. I hope this post has been helpful. If your child wears CPAP/Bipap and you have tips of your own or your child needs CPAP/Bipap and you need more information, comment on this post and I will reply.

Sunday, December 14, 2008

Mixed Bag of Pics

Helping Mama cook. Those are PJs I'm wearing in that pic and they are very baggy and not figure flattering at all--so ignore me and focus on the adorableness of Jack!
Birthday girl enjoying her birthday cake.
Her parents call her Brookealicious. Cute, isn't she?
Craziness and pandemonium on the trampoline!
Brothers. Brothers with a huge height difference that makes it difficult to get a picture when the littler one decides to sit down.
Cute Anja getting waiting on some food.
My little niece who shares my birthday.
We were wearing matching PJs but somebody did not want to wear his shirt and that somebody's Daddy did not get our pants in the picture. :)
Deborah aka dun dun--that's tunnel in Jackspeak. She's got these long legs that she just props up and voila, tunnel for Jack. Boy was he mad when he tried to get me to duplicate Deborah's tunnel.
Watching some football together.
McCahill loves his go-cart.
Jeanie loves the camera.
Jack loves his cookies. Thanks, Michi, Pop, and GranJoy!
Way up high learning about science.
The science of playing the piano.
I thought this one looked like he was at the big wheel on The Price is Right. What you can't see is me standing to the side saying, "Come on $1."
Sweet!

Progress

Sometimes progress happens so right in front of your face that you don't appreciate it until you go for a walk.

It really wasn't that long ago that Jack disliked walking on grass. Most grassy surfaces are pretty uneven and it was hard for him to stay upright. Today we went for a walk in our neighborhood and for some reason he decided that he wanted to go up this grassy hill. Look at him go!

First Sweats

At 3.5 years old, this is the first time Jack has ever worn a sweat shirt. It was hard to find any to go over his head, he's kind of hot-natured and it does not really get that cold here. Who else could make sweats look so good?

Friday, December 12, 2008