Sleep Study

Yesterday during nap I got a call from the sleep clinic saying that they had a cancellation and asking if we could come for Justin's sleep study that night.  I am beginning to wonder if anyone actually has their study on the originally scheduled appointment time.  Anyway, we were out the door and on our way in record time.  (I am getting good at last minute packing jobs...)  We had time for dinner with Daddy at Chick-fil-A and I left Travis with him before Justin and I went to the hospital.  You will be very pleased to note that unlike last year, I remembered my camera!

Here's brushing our teeth to get ready for bed.

Here are all the supplies ready to go.  The sensors are the wires laying across the front of the table.  Very multi-colored!

Cheri, our nurse, put on Justin's leg sensors first, the ones that check for leg movement.  She asked which I thought she should do first, head or legs.  I said I didn't think it mattered.  I was wrong, it did.  He did NOT like the sensors on his legs, and they didn't even hurt.  She marked the spots with the grease pencil, cleaned them off and then attached they with a waxy glue.  Then they got tape and purple self-stick wrap.  (You'll see that in a later picture.)  Then she set to marking his head.  He was too into Barney to pay much attention, but you'll notice the red, swollen eyes from earlier tears.  Most of the head spots were easy!  The lines down his shirt go to the leg sensors and EKG monitors.   

Here's the grease pencil and scrubbing to prepare for the sensors.  She did each spot several times so she would have to push too hard and bother him.

All the head sensors are on.  She switched to cotton balls to hold on the sensors.  I didn't get it, but they stayed on so who am I to question?  She then moved on to the spots on his forehead and chin.

Almost all done.  Here's the stocking hat/ski mask cover.  She didn't cut it down the middle and make ears since we planned to use the CPAP machine during the night and it doesn't fit over the ears.  Again, not questioning...  Here you can see the purple tape on his legs.

Cheri gave him a mirror to check himself out.  He stared very intently.

Very intently...

Here's all the lines coming together at the back of his head.  Cheri put a stocking over all the lines so they wouldn't get tangled during the night.  Really good plan!

All the lines attach to this box that then feed the information to her computer in the room behind ours.

All ready for bed!  Now he also has on the nose cannula for carbon dioxide output and the temperature sensor (that's what makes his nose glow!)

She checked his pulse ox reading on his finger since his toe was reading low (96%).  It checked out the same so that might be something to watch.

And then the lights went out.  I haven't been to bed before 9 pm in forever, but I guess I needed it because I think I was asleep before Justin!  Justin flopped and woke up quite a bit, but with me in bed with him he slept better than usual.  He woke up, saw me, and went right back to sleep.  Cheri came in at about 2:40 am to readjust a sensor and she said that he hadn't met the criteria before 2 am in order to justify switching to using the CPAP.   I wasn't sure what to think, but she said we were just going to finish up the night.  When she came in at 6 am she said to Justin, "You must really like sleeping with your mom."   He said, "Yah!"  Little stinker!  We have a follow up appointment for the beginning of August to go over the results.  I am not sure how the night went according to their criteria.  They ask all sorts of questions about how long I think it took him to get to sleep, how long he slept, how often he woke up, etc.  I just feel stupid because it's like a test where they know all the answers already and they want to see what I guess.  I know that they recognize it's difficult to replicate home sleep at a lab, but that's the best they can do.

So here's Justin's morning stretch.  They hadn't turned on the lights yet, but it's still a funny picture!

Then it was time to remove all the sensors.  His hair was a matted mess.  Oh, and we're watching Barney again, that's why we're getting the completely disinterested chin up stare. 

I did my best in the shower getting all the goo out of his hair, but that grease pencil is tough to scrub off!   I had to hold him since there was no bench in the shower, and the minute I stood him on the floor of the shower he ended up on his bottom.  I scrubbed all around his head and then when we got to therapy I noticed that I missed the big spot in the center of his head!  Not sure how I missed that.  I also missed a spot behind his ear.  I somehow got some in my hair too.  All our PJs are going in the laundry!  It's always an adventure.  Cheri kept saying how cute Justin is and he kept agreeing.  We all had a good night.  I might need a nap though.

A Trip

When I go to work, I usually try to work as much of the time I am gone as possible.  That means I have very short layovers (or none at all - just day trips/turns).  But this month I decided that the best use of my time would be to do a couple of longer trips with longer layovers.  So I ended up with a 36 hour layover in Buenos Aires.  Completely unheard of for me, but it doubled by providing me with some much needed rest and down time.  I wanted to do a little sight seeing, so I found this fun little cemetery close to our hotel.  It's called La Recoleta Cemetery.  It happens to be when Eva Peron is buried, so it's plenty popular.

It's set up like a city, with streets.  It holds 4800 mausoleums, all above ground.  Most of the coffins are underground, but a few are visible through the windows or doors of the mausoleums.  This is the map you'll find at the entrance.

Here's a view walking down one of the "streets".  Eerily pretty is my description!

Eva Peron's mausoleum.  She is buried with her father and siblings.  This cemetery only lists dates of death, not of birth.  And these plates have the date of when they are installed, so some are only a few years old.

This was one of my favorite.  The next picture is of the right side of this mausoleum.

Here's one where you can see the coffins inside.  The next picture is the close up of the inside.

Some of the designs and architecture is amazing!

It almost looks like a park!

It was a nice walk and a fun visit.  You notice everyone has coats on.  It's winter in South America!  That was another bonus for us being from hot and humid Texas.  It was cloudy and very windy so we got the true winter experience.  I am going back this weekend and I think I am going to do some more walking and a little shopping!  Maybe some early Christmas shopping?

Father's Day

Sorry I am just getting to this, but I forgot to download the pictures.  We spent Father's Day with Me-Me and Pop.  They cooked a fabulous meal, featuring beef brisket.  I contributed absolutely nothing to the meal since I had only just arrived on the flight from Argentina.  My in-laws are just great!  I am also fortunate to have an awesome husband who served me on Father's Day by having coffee ready when I got home.  (They also had to deal with Justin throwing up profusely on Friday while I was gone.  The whole gang ended up in the ER.  Major cudos for dealing with that scare and all that clean up!  Justin's just fine now, but we skipped church just in case he had passed it to Travis or Randy.)

We didn't do anything special, but here's a few pictures from the day:

It took about 6 shots to get this picture since Justin is such a fast kisser!

Me-Me and Pop just went to a family reunion last weekend and they came back with a book detailing the account of how Pop's family made it to Texas.  So Me-Me thought she would tell the boys the true story of Pop's life, but she only held their interest for a few minutes.  Maybe another day.  But they look really interested, don't they?

Knees

My boys are growing.  Especially Travis.   Do you know how I know?

I can see his knees.

This is the first summer that Travis' knees peek out from underneath his shorts.

To fit at the waist, the length was always excessive, but what could I do?  His shorts have always been more like boot-cut capris than shorts.  Travis put on his shorts this summer I thought maybe they didn't fit him.

(Here's Justin's "shorts".)

I pondered and considered and watched him and realized, he's just growing up.

Growing up.

A major accomplishment and yet sad for mommy to see.  Travis is definitely NOT a toddler.  He's growing up and moving on.  Makes me proud, excited, and scared.  Another new phase.  Glad it's coming, but sad to see the old going.

Another Down Syndrome Clinic Visit

This week we made our semi-annual trip to the DS Clinic.  It was a crazy morning getting everything ready for the day.  I had to go to work that night so I had to pack bags for the boys' overnight stay at Me-Me and Pop's and make sure the boys had everything they would need for day.  Travis went to a friend's house while we were at the doctor's and he needed to be dropped off by 7:15 to ensure our timely arrival at the Med Center.  So the boys ate breakfast on the road.  I am always surprised that somehow it always works out.  I have to say that it is in part due to my traffic reporter (Randy) who always gives me the best route to take.

We saw the doctor, OT and speech this visit.  Speech and the doctor were first.  I reported all the latest to the doctor - no ER visits, no major illnesses throughout the winter, what was happening with endochrin and the sleep clinic.  I still hadn't heard from the sleep clinic about scheduling the sleep study so I was planning to stop by after this appointment to see if I could work on that since they don't give out their phone number.  Well, fortunately, the doctor fixed me up and later that day I was able to get us in for January of 2012.  In the month since our appointment, they have gone from scheduling in November to January.  Yikes!  Back to this appointment:  She (the doctor) wants to be sure Justin does not have celiac disease now that I told her Justin is not eating wheat.  There are other problems that go along with celiac and she wants to send us to GI for a more confirmed diagnosis.  I think we'll go back to our pediatrician and talk things over with her before we make that call.  I don't want to go back on wheat while I am trying to potty train.  I hope that we can put that off for a little while at least.  The doctor said that she "aged" him at about 26 months, which is feasible for potty training so she gave us the go-ahead on that.  She was very impressed with his attention and good behavior.  He stuck his tongue out and said "ahh" on cue and went through all the steps just like she asked.

I really like their Speech therapist.  She is very kind and encouraging.  She was very impressed with Justin's progress and she showed his "age" at close to 27 months.  He answered some pretty hard questions like showing him pictures and asking which one do you read, which one is blue, and which baby is NOT crying (he didn't get that one- that was hard!)  She also was impressed by his attention and good manners.  They both recognized how that aspect of growth and development often get left behind and how important it is later in life.

Justin had a smattering of skills up to 36 months of both of their scales, which really encouraged me.

The OT came in later and she was beyond amazed at the way he sat and strung beads for her.  He hasn't done that in a while in OT and he did fabulously!!  She kept giving him more and he kept going.  He cut a piece of paper and made crosses and circles on the paper.  He stacked blocks and of course knocked them down.  He followed her directions very well.  She wants him to string smaller beads and build more intricate designs with blocks.  (Like tunnels and pyramids)

The doctor wanted x-rays of Justin's neck since there is a chance he could have a weak spot common in DS.  It's something they do around age 3-5 and since Justin is fairly active and also compliant they felt now was a good time.  That took hardly any time at all and we were out in less that two hours total!  I have never felt so good leaving the DS Clinic.  I was prepared to make this our last appointment if I didn't get more encouragement and positive feedback and they must have known because they were on their game.  We even got cleared for a whole year between visits now!  He's not making quite as much progress quite as quickly anymore so they are giving him more time to learn and perfect more skills.  (I am kind of glad for that because that gives me a year to get the potty training down.)

Gearing Up

As you can tell from my previous post, we have great plans for the summer! 

My goals are to potty train Justin and teach Travis to ride a bike.
(I am thinking positively here!)

I hadn't really planned to start the potty training quite yet, but Justin woke up dry this morning and I asked him if he wanted to use the potty.  He said yes and did his business just fine!  Then we went for a walk and ate breakfast on our journey (Travis' word!)  We came home and started school and Justin went into the bathroom and shut the door.  Never good.  So I went in and asked if he needed to use the potty and he said yes.  I took off another dry diaper and he did quite a bit in the potty.  So we went for the big boy underwear and then it went downhill from there.  He wore a diaper for nap and I called it a day after that.  We have evening VBS this week and he will be in the nursery.  Too much for them!

And I have been psyching Travis up for the removal of the training wheels.  Now I have to psych myself up.  More coming soon!

Please pray for all these plans.  We ALL need it!

One of Those Days

The day by the numbers:

Number of times Justin went pee-pee in the potty:  2

Number of times Justin went pee-pee in his underwear: 1

Number of times Justin went poopy in his underwear: 3

Number of times Travis spilled his food: 5

All...before...lunch...

Number of loads of laundry created: 3

(sigh)

A Sad Trip

When I was working last week we got word that Mommy Sharon (my mom's good friend who stayed with her after surgery and a very special family friend) lost one of her daughters very unexpectedly.  She died at age 49 of complications from an aneurysm. 

We really wanted to be there for the funeral, but we weren't sure how to make it happen.  Her funeral was scheduled to be the same day that my mom started her radiation. And one of my aunts was visiting and not scheduled to leave until that day as well.  So we considered options and debated the best plan.  The holiday made flights a little crazy and they kept changing so we kept changing our minds:  First we were all going, then we were leaving my aunt and just going the four of us (mom, me and the boys), then it was just me.  We just couldn't decide.  I drove my aunt crazy to hear us going back and forth!  She likes everything nice and planned out, and that's just not the way we travel.  We don't have that luxury when we travel on my passes.  She just finally said that she trusted me.  That made me laugh, but I was glad that she would go with whatever we decided.

So we went to bed still undecided and the next day we got up and went to our appointments.  (It was Doughnut Day after all!)   I got back to the house first and checked the flights.  Of course, the next flight looked great, but it left in 2 1/2 hours, and I had nothing packed.  The next flights looked bad, so it was this one, or a dead-of-the-night adventure.  Since traveling and lack of sleep are always constant companions for our family, I opted for trying to conserve sleep as much as possible.  So I kicked into high gear and made the reservations, checked us in, printed boarding passes, and packed myself and the boys and we were out of the house in 40 minutes.  The house was a disaster, I was certain I forgot something, and I think we almost gave my aunt a heart attack.

But we made it!

I called Randy from the airplane and told him we were on and he couldn't believe it.  He was checking the flights and he only saw one seat available.  But we were on and we were on our way.  We made it to Chicago and we had to put both my mom and aunt in wheelchairs.  One fabulous wheelchair pusher pushed my aunt AND my mother, laden with her suitcase, handbag, and Justin.  Travis wore his backpack and pulled one small suitcase. I had our backpack and pulled both car seats on our handy travel wheels and two rolling suitcases, one stacked on the other.  We looked like vagabonds, I am sure.  We had to go to the bus station at O'Hare, which requires going down an elevator, through a tunnel, and up another elevator.  Each elevator required two trips since we didn't all fit into one.  (Go figure...)  That man earned his tips that day! 

We made it, with only minimal complaining, and bought our tickets.  We sent my aunt home to Indiana with quite a story to tell and we headed up to Wisconsin.  We got on the bus and Travis found a seat next to a girl on her way home from a trip to Sweden.  She was exhausted, but somehow managed to entertain Travis for 3 1/2 hours.  I kept trying to get Travis into the empty seat beside my mother, but she insisted she wanted him to sit with her.  Travis shared his Jelly Bellys with her.  They played with Travis' cars and people.  Travis invited her to our house.  He laid his head on her lap.  She raced around with him at one of the stops.  She even let him use her phone to call Randy!   They were best buds by the time we got to Madison and Travis was crushed to leave her.  He was barely consoled by the knowledge that she had his phone number in her phone.

And then the adventure began.  We stayed at my mom's condo in Madison.  She has a roommate who lives with her, but my mom hasn't been there since November.  The boys got in the bath and Justin pooped, not once, but twice.  Then when we were getting them into bed, we found that the cat had peed in the bed.  All the way through to the mattress.  So we had to change sheets (this was just the beginning) and then we pushed the twin beds together and all slept together.  Some more than others.  I am pretty sure Justin didn't go to sleep until 5 am and then he woke up at 6:30 ready for the day.   I had forgotten that since it's nice weather they leave the windows open all night and they also live very close to the airport.  Where fighter planes take off regularly for training assignments  Starting early in the morning.  Gotta love it...

So we were up and watching TV quite early.  By this time I figured out what I had forgotten: my camera and my belt.  So no pictures of the trip and I spent the whole time with my pants falling down.  I tried Travis'.  It didn't work.  No worries!  We managed to get breakfast, get dressed, and get to the funeral in plenty of time.  It was beyond awesome that we could be there.  I think Mommy Sharon nearly crushed the boys with her hugs as she murmured, "You came.  I can't believe you came.  I am so glad you came."

Since the funeral was at the church my mom attends, she was able to see lots of friends and people who have written her cards faithfully for the past nine months.   The boys both fell asleep during the funeral (go figure...) which was a beautiful tribute to Mindy.  (The funeral, not the sleep...)  Mommy Sharon and Daddy Jack are both very involved at church and many people came to support them.  There is also a Laotian church which uses the building and several of its members were there.  There was a sandwich pot luck afterwards and we spent time with the family.  Justin made friends with one of their grandsons, Josh.  He jumped right up on Josh's lap and settled in.  He was quite comfortable and did not want to leave.


It was hard to say goodbye, even though we planned to see them the next day.  No one wanted to leave.  I think that's how funerals are.  A simple good-bye means so much more.  Justin added some humor to our departure by doing his tiger impressions.  The routine goes like this:

Travis:  Justin, what does a tiger say?
Justin:  ROAR!
Travis:  Justin, what does a tiger say?
Justin:  ROAR!
(Repeat endlessly)

Justin has a pretty fierce roar and it's hysterical coming from a body so small.

We went to my grandmother's house next.  The plan was for the boys to nap during the car ride, but the funeral nap was just enough to take the edge off the sleepiness.  And since we were going right by the cookie factory, we had to stop there.  So sugar took away whatever drowsiness remained and they were both bursting with energy by the time we made it to grandma's. It was great for my mom to be able to see her mom, if only for a few hours.  And I always treasure whatever time I get with her.  The boys sang some songs, said some of their Bible verses, and in general hammed it up.  It was great!

The entire day was filled with dirty diapers.  I must have changed at least eight dirty diapers.  And Justin was incredibly wiggly.  Not being in his usual locations he wanted to squirm around and see everything and get away to play.  So I was forever attempting to contain the contents of the diapers and forever failing.  Since Justin is starting to become familiar with using the potty I always let him try whenever he asks.  He asked at grandma's and so I put him on the toilet only to get poopy smeared all over my arm.  By the end of the day there was not enough soap to take away the smell.  My hands had the aura of poop.  Or at least flower-scented poop.  It was too much!  Oh, and to end the visit Justin pooped in my grandmother's bathtub.

We got back to my mom's condo late and tried to put the boys right to bed.  It was close to 11 by the time the succumbed, but of course it was another night of rolling and flopping.  Justin crawled over Travis to be next to me and then he slept on top of me and Travis in the crook of my shoulder and by 7 am they were still sleeping and I had to go to the bathroom like you would not believe!  Of all mornings!  I was able to get out from under them and make it to the bathroom before we had to change the sheets again.  But it was not long before their sleepy smiling faces appeared in the living room.

It was time to get packed and make one final visit to Mommy Sharon and Daddy Jack.  We had a great time visiting with them.  Most of the family had already gone home, but a few remained.  There was the business of cleaning out Mindy's house and signing more papers.  Nothing fun.  So we allowed for some diversions.  We ate lunch with them to help eat up some of the food brought by friends.  A funny story was that the older kids were left to receive food the first days as the adults were at the funeral home making arrangements.  They were left with strict instructions to write down what everyone brought so that appropriate thank you cards could be mailed.  But they didn't know who the people were bringing food!  So they did what any technologically savvy youngster would do these days:  take a picture of the person!  Pretty smart I think!

We enjoyed nibbling at the mountains of food that remained from feeding the family of 25!  Justin was enjoying some salsa and got a bit of jalapeno that just about sent him to the roof.  I ate some mighty delicious carrot cake.  Travis got some awesome whipped creamy jello something.  We did not leave hungry!

But eventually we had to leave.  When we got to the airport our flight was delayed two hours taking our 2 1/2 hour connecting time down to only 20 minutes.  My mom had managed to reschedule her radiation to start the next morning at 7:45 so we really needed to get home.  The airport we connected through had another tunnel we needed to navigate (I am starting to dislike tunnels...) so I took off with the boys to get to the other plane and beg them to wait for my mom.  I planned to pull the radiation card if necessary.  Fortunately her hair is still really short so it's obvious she is going through chemo.  We made it, with time to spare to watch a little Direct TV on the airplane before leaving.  I am starting to like the TVs on the plane.  We never pay for them but the free preview lasts long enough to settle the kids down so I can say that it's time for nap/sleep when the free preview ends.  It worked this night and we got at least an hour of sleep before landing.  And after some crazy car swapping we got home and in bed close to midnight. 

So when did the kids wake up, you ask?

6:40 am

Bring on the coffee...

Memorial Day, Water Play Day

This past week was a very busy week. And when I talk about last week, I am probably referring to your week before last, because that's where I left off writing so there is some catching up to do.

It was my birthday, and that started out a few days early because Travis has been talking about doing something special for my birthday for about a month and now it was time to execute his plan.  When I got home from work the Saturday before my birthday, Randy and my mom were hanging streamers and balloons in the kitchen.  And Sunday Travis told me that I had to leave the room because he was going to make me a picture that he didn't want me to see until it was done.  So he and Randy created this: 

Pretty cool, huh?  It's the best picture he has ever drawn for me so this is very special.  Randy colored the bottom three colors of the rainbow and Travis did the top three.  They cut off the bottom of the paper so they wouldn't have to make more grass.  I love it!

I ended up almost not having a cake or a birthday dinner since I already had my birthday party for this year last year!  My in-laws relented and made a yummy dinner and cake - with no numbers just in case!

Then I had to work several days and Randy finished the fence.  Really!  All done!  I am so proud of him.  It looks fabulous.  At least that's one thing off the list for a while!

So by Memorial Day we were ready for some fun in the sun.  We had a nice dinner with our friends, the Judds.  The kids did some playing in the water.  They couldn't manage to figure out the slip and slide so we "threw" them.  They had a great time.  Justin wasn't sure what to make of it all, but he kept going back for more!

Chris even sent the kids down backwards so they wouldn't get water in the face.

Clara and Robert just got a new sand play table.  Travis and Clara convinced Kelsey to add water and they had fun making mud.  All four kids were covered with sandy mud, but it was beyond fun.  All the kids were exhausted by the time it started getting dark.  It was a great day playing with friends and celebrating freedom.