Speech Therapy

Miss Sarah has been working on some vowel-consonant combinations with Justin.  He can do well beginning with the consonant, but this changes it up and makes the consonant sound the end sound.  She worked on vowels first and she gave us some "cues" to use to get Justin to make the sound.  Like to make the "eee"  sound, she touches the corners of her lips, and "o" (like "boat") she circles her index finger around her lips.  Justin does very well with this, and he even has the order of the vowels memorized so Miss Sarah had to switch them up a bit!   She did the same thing with consonants and now they are working in combination.  For this, she gave us some pictures of things that used basic vowel-consonant combinations (the ones he knows).  So we have all of this posted on the wall by Justin's seat at the table so we can practice while we're eating.  Justin loves the pictures and he points to them and practices by himself at every meal.  It looks funny, but Justin loves it.  Travis gets involved too.  He asks Justin to say a word and then he repeats it really fast in a twisted effort to encourage Justin to be able to say it better. (Boy logic: faster = better)  Justin's best words are up and out.  When he says "oat" there is a very defined break between the "o" and "t".  And with "arm" he just points to his own arm and babbles.  He somehow has forgotten how to make the "m" sound.  I'm not sure how that happened.  I am trying to remedy the situation and so far I am failing! 

The words are: out, eat, oat, up, arm. (I had to ask what "oat" was!)

This and That

Lots of happenings and no time to tell it all, so here's the short version:

• My mom had her last radiation last Monday!  She is officially done.  She got the go-ahead to remove her port, although it may take a few months to get scheduled.  She begins her "anti" hormone therapy pills in a couple of weeks.  She has to return for checks every three months and she will have a few more scans at her next visit in October/November.  She is tired, but upbeat.  Her neuropathy is improving, especially in her right hand.  Her hair is so cute!  Very short and very curly.  She will need a bit of shaping soon.  She said Randy would have to do it, not Travis this time!
• We have added some more therapy to our schedule.  Melissa has been great in manipulating our schedule and she got us time slots together so we only have to go three days a week, but two of those days we have two therapies back to back.  We've been having one day that has one therapy in the morning and then an hour and a half off before the next one.  This new schedule eliminates that break.  It works great for Travis' school because it gives us two days with an hour and a half of dedicated time to do school.  So now we'll have 2 speech, 2 PT, and 1 OT.
• Speaking of therapy, Justin is doing fabulously!  He is getting really close to being able to jump, he is learning his colors, and in speech he is working on putting consonants at the ends of words.  Justin has been practicing jumping off the edge of the pool!  It's more a squat/fall, but it's cute.
• Both of my brothers are getting married this fall.  Ben is getting married in August in Florida and Jon in October in Pennsylvania.  It affords us quite the chance for Travis to work on his state geography!
• My mom is planning to head back to Wisconsin the beginning of August.  It's going to be hard to have her place empty in our house.  She has been here since Thanksgiving last year.  Sad even to mention.
• Travis is about three-quarters of the way through kindergarten.  He doesn't like sitting down to do it, but once we get going he does fine.  Why is that?
• My mom went to LA this past weekend to meet a new grandson of hers.  Not newly born, but newly discovered.  His name is James and he just turned 15.  We learned about him last fall, right before all of my mom's treatment began so she didn't get to meet him.  She's been talking with him and now she got to meet him.  It was a great trip for her and James was thrilled to meet some family.  She took lots of family pictures and he loved seeing them.  We look forward to more time together in the future.
• Potty Training:  Ug, don't even ask about it.  Justin does great when I put him on the potty, but he's one of those who doesn't want to be interrupted when he is playing to take care of business.  We are now camping out in the kitchen so that if he has accidents they are less messy.  We have had our share, believe me.
• Bike Riding:  Yeah, haven't really done much with that yet.  Things keep coming up!  I mean to get Randy to lower the seat on his bicycle, but I keep forgetting.  Other things keep coming up!

Lots more in the works, but nothing else to report.  August is going to be busy.  I am not sure how I am going to fit work into it all!  Randy's got some busy weeks at work too.  I am helping mom get her things together to go home and then rearrange all the boys' things after she leaves.  Travis is excited to get his room back.  I think he forgot it was his for a bit there!

It's Outta There!

Travis lost his first tooth tonight!  It has been loose forever and about a week ago he finally mentioned that it seemed looser than before.  Uh, yeah!  It was really loose!  But it wasn't quite ready to come, so we said maybe another couple of weeks and then it would be ready.  Well, you know how tempting it is to keep wiggling that tooth.  And wiggling.  And wiggling!  I have to go to work tomorrow and it was so loose that I was sure it would come out while I was gone unless we took some decisive action tonight.  So when Daddy got home we tied some yarn to the tooth and I did a quick yank and it was out!  I think Travis was more surprised than anything.  After some rinsing and sucking on ice, he was in good spirits and we did a little skyping with the family to share the news.

Fortunately we did some crafting this afternoon to prepare for the big event.  I had been intending to make a tooth fairy pillow for Travis for about 6 months, but it never seemed urgent.  That got stepped up a little and today was the day.  It was good that I had done some research and had a plan, but I just needed a design.  So Travis picked pirates for the theme and we went to the craft store for a few supplies.  This was easy and very cheap!  A few pieces of felt and ribbon and we were set.  Most of it is glued with just the main body sewn plus the pocket on the back for the tooth, which gets exchanged for pirate treasure, I mean money.  Travis helped with the gluing.  He loved helping me so in a way I glad I waited until the last minute.  It's supposed to be a pirate tooth, and I know teeth are normally white, but Travis got to pick the color for the tooth and that's what he chose.  I say he lives on a boat in the sun so he has to be tanned.

It was another BIG first for Travis.  The beginning of the end of baby teeth, and the beginning of the end of thumb sucking.  I think that one's going to be a whole lot harder...

A Picnic, Pony Rides, and a Zebra

Before I begin, I have to tell you that I went to work this past Friday when Randy was off.  When I called home to check on everything, Randy said that he had gotten sick and that Justin had woken up with a swollen eye.  Randy was not doing well, and Justin was acting just fine, so we assumed it was a reaction to a bug bite or something.  Justin's eye was the size of a small citrus fruit all weekend and finally on Sunday I asked a optometrist friend to check it out and he said that it was infected and to take him to the doctor right away on Monday morning.  He said a few other things that put the fear of God in me and I watched him like a hawk the rest of the day to make certain he didn't develop a fever or lose vision.  Randy went to the doctor too, and he's staying home from work even tomorrow so you know he's bad.  Justin looks much better.  But some of the following pictures look pretty pitiful.  I just want you to know that Justin felt just fine, he never had a fever, and he had a great time!

Our friend, Melissa (the receptionist/insurance person/sticker purchaser/everything person at therapy) invited us to join her family for a movie in the park.  Her son just got a set of orthotics like Justin and he wanted to show them off to Justin.  So we met them and had a great park day.  The weather was hot, but there was a little breeze and the sun stayed behind the clouds so it was very pleasant.  They show a movie every month, and this month was Racing Stripes, about the zebra who wanted to be a racehorse, so they had pony rides and a zebra to pet.

Travis, Justin, Cheyenne, and Cody

They had a small pony and a large pony.  Both kids wanted to ride the big pony.  Justin did really well!  He held on and never lost his balance.  I was really impressed!

The zebra mostly wanted to eat grass so the kids pulled grass and fed him.  Travis got his finger nibbled so he's been telling everyone that a zebra bit him.  Justin pulled grass and threw it at the zebra.  Cody tried to help him figure it out, but Justin never got the hang of it. 

A Daisy Troop had games for the kids to play.  Travis and Cody played the bean bag toss.  Justin  just put the bean bags in the hole.  Then he clapped for himself!

They had a magnetic fishing game, but they put the fish in a metal tub so the fishing lure kept getting stuck to the side of the tub!  Justin was telling Cody which fish to get.  It was hard even for the bigger kids!  When Justin took a turn later he just dipped the lure into the water and then swung the pole around spraying water everywhere.  It was warm so we didn't mind very much.  They also had a sponge toss and water guns, but the big kids took over that area so it was too much for the littler kids.

Here's a good one of Justin's eye.  They also had visors for the kids to decorate. Justin didn't get much into the decorating, but he loved wearing it!  This was his favorite method of donning.

Travis and Justin had so much fun.  There weren't a ton of people so I could let Travis run and I could still keep an eye on him.  I meandered behind Justin and Melissa and I could alternatively talk and tell the children to stop doing whatever it was they were doing.  There was a caboose by the park because it was near the old train depot, and the kids had fun climbing on and running around it.  All my pictures of Travis are blurry because he wouldn't stop moving!

The movie started at dark, which was around nine.  Travis sat and watched the movie, but Justin was all over the place.  He borrowed Cody's chair, and then climbed in, and out, and in, and out.  I knew we wouldn't make it through the whole movie, but Justin was not settling down so we left earlier than I had planned.  Justin was supposed to fall asleep on the blanket and then Travis could watch the movie until he got tired.  Well that didn't work!  And I forgot to tell Travis that we weren't going to be able to watch the entire movie, so that was a little bit of a struggle.  But of course I promised we would rent it and watch it later, so he gave in.  The boys went to bed at 10:30.  Guess what time Travis woke up. 

6:25 am

4-0

We had a big party this past week because Randy had a big birthday.  It was the very special and monumental 4-0.  His birthday is close to the Fourth of July, so we celebrated on the 4th since everyone was available!   He's used to his cake being red, white, and blue, so I made a red, white, and blue trifle.  Okay, so it had a little brown in it too, but I didn't have time to make white chocolate pudding.  It tasted okay anyway.  And in spite of it being Randy's birthday, he manned the grill and cooked us some delicious beef and chicken kabobs!

Randy's parents put together a cute poster of pictures of his life.  Of course I forgot to take a picture and they wanted it back since several of the pictures are only copies.  Man, you can tell we're old when our baby pictures and even our wedding pictures are only in print form.  Way before the digital age!

Randy and I tend to wax eloquent in our cards to each other, and this birthday was no different.  Usually when I write cards I reminisce about where we've been and all we've been through, but this birthday really made me think forward instead of back.  We are often told that 40 is the "beginning of the end" and "it's all downhill from here" but now that's we're here (I am close you know) I see ahead much brighter than behind.  And while behind had some big bumps, it was still pretty great.  I just know the best is yet to come.  We may have been together for 15 years, but I hope that we are together for plenty more than that.  I pray that God has even bigger plans for where we are going.  I am glad to have a silly guy with whom to share it all.

Happy Birthday Randy!

Family

Randy's brother, Craig, his wife, Kristi and their daughter Lauren came for a visit the end of June.  It has been a long time since we have seen them since during their last few visits either the boys or Lauren has been sick.  This time we were all germ-free so we all spent the day together. 

They have a dog, and the boys are typically scared of dogs thanks to some neighbors and their huge boxer dog.  But before too long, both boys were willing to pet the dog and stopped making huge circles to get around her.

Uncle Craig and Travis did some wrestling.

And some arm wrestling...

Even Justin got in on the arm wrestling.  You know, whatever brother does...

Here's the whole gang (minus us of course).  They took some group pictures while we were gone at a wedding so we missed the "cousin" shot.  It's supposed to be coming via e-mail, so hopefully we'll get it soon!

It was so much fun and I am glad we were able to see them.  The cousins had a good time, and Lauren enjoyed playing with the boy toys!  I think her favorite was the garbage truck.  It's one of our faves too!

Results!

We went back to the sleep clinic this morning.  It was a very successful visit!  I was very pleasantly surprised.  Last year, Justin averaged 6.1 apnea episodes/hour, which put him in the mild apnea range.  Justin averaged nearly 12 apnea episodes/hour of sleep last week, which puts him in the moderate range.  So he has doubled his apnea episodes/hour in the past year.  And the more telling statistic is that during REM sleep, the average of apnea episodes goes up to 19/hour.  So Miss Terry said he's not getting good quality sleep.  That's what we've been saying, so it's good that we have someone acknowledging the problem and now we can make progress to fix it.

The next step is a visit to the ENT to rule out tonsils and adenoids.  That's of course where we started last year, but things can change so I am on the phone on hold attempting to make as appointment as I type this.  The ENT said that he wasn't a surgical candidate last year, but we will see if anything has changed since then.  If that is ruled out, then we move on to the CPAP machine.   It's a machine with a mask he will need to wear during sleep that pushes air into his nose to make it less difficult to breathe.  Sleep apnea is very common in DS because of the low muscle tone.  When everything relaxes during sleep, the tongue tends to fall back and block the airway.  The CPAP should correct this, but it is very uncomfortable and there will be a huge learning curve to get his used to wearing it.  Miss Terry ordered the sleep study needed to calibrate the CPAP machine since they are scheduling appointments for February already.  Once we visit the ENT then we can decided the next step.  So we're making progress!

And I'll end with a totally random picture of Justin.  This Fourth of July we went to a friend's birthday party and the kids all got to make stick horses.  This is Justin's.  Both boys are gaga over their horses, but I couldn't get a good picture of Travis, so Justin will have to suffice.  They are true cowboys!