Amelia and the Very Tiring Sleep Study

Amelia's sleep study was moved up to last night, so she and I headed to Boston at 6pm.  We had discussed this many times, and looked at all the photos of Micah and Sunny having their sleep studies, but Amelia was still quite unsure about the whole event.

Unfortunately I could not find the camera when it was time to leave, so all of the photos below were taken with my trusty old flip-up cell phone..and have a blurry spot from the scratch on the phone.

Amelia has the iPad, and is doing well.  She did start crying when it was time to take her blood pressure.  It was on the third try (second person) that it was successfully done.

I was honestly shocked at Amelia's level of cooperation during the measuring, marking, and gluing on of the wires.  She was so good!

Amelia did being to protest when it was time for the "stickers" on her face.  Thanks to wi-fi and the iPad, I was able to pull up this blog and show her the photos of Sunny and Micah getting the very same stickers.  This helped immensely.  She also called Daddy on my cell phone, and talking to him was very encouraging for her.

Amelia was bothered the most by the pulse-ox on her finger, oddly enough.  Despite her cooperation during the prep time, it ended up being a difficult night.  She simply could not fall asleep because she was so tense about moving with all the stuff attached to her.  Poor Amelia would drift off, then startle awake.  This happened repeatedly until the wee hours of the morning. 

Despite not being asleep for long, Amelia was very happy to be awakened at 6am and un-wired. She called Daddy again to let him know how well she did.

 We even arrived home in time to shower her hair and get her onto the bus for school!

We should have the results of her sleep study within 2 weeks, and given the number of times she had strep this past winter, I am honestly hoping they have found that her tonsils and adenoids are causing Obstructive Sleep Apnea (OSA) and need to be removed.

Micah's sleep study was normal, and we are still waiting to hear about Sunny's. althoug I do not expect a problem.

And Dante?  There is NO WAY we are going to try a sleep study for that guy!



Tilling the Land

Today Jamie prepared a strip of dirt for my tomato plants.  He received some help, and one helper wannabe.

ShanLin and the Amazing Sleep Study

Last night Sunny and I went into Boston Children's Hospital for her sleep study.

Sunny was more than happy to go for a drive with me,  and was excited as we headed in to the hospital.  She changed into her pajamas right away and hopped up onto the bed.

After her blood pressure check, height and weight taken, and urine sample was given, Sunny started playing with the iPad.  She looked up briefly when the technician started marking her head and attaching the wires, but did not utter a word, or pull away at all.

Sunny's way of dealing with the unknown is often to withdraw completely.  She spent 30 minutes doing the same Montessori Math page counting to 16.  Over and over and over.  Every now and then I would see her look out of the corner of her eye toward the technician, but she never moved her head or resisted at all.  She did not even need her head wrapped as Micah's had been.

When he told her to climb into bed, she did.  And within 20 minutes she was asleep.  

Jamie and I had discussed that we really had no idea how she would behave during all this, but I never expected this level of cooperation.  She never said one word through it all, so I know she was unsure of it but willing to go along silently.

At 6am the technician woke us up, unhooked all the wires, and we headed home!  I was able to give Sunny a quick shower and bowl of granola, then she was off to school and her animated self once again!!

Within a week we will hear if Sunny has any sleep issues.

In two weeks Amelia has her sleep study.  

I am almost certain it will be the exact opposite of Sunny's experience!

Micah and the Not So Good Sleep Study

The triplets are taking part in a study at Children's Hospital Boston, and it involves having a sleep study.  We were happy to participate since it is recommended that all children with Down Syndrome have a sleep study done...we get to accomplish that and help some research at the same time.

We were originally going to have Micah and Amelia at the same time, but there has been a slow moving stomach bug here, so we decided it was best if only one went first, so Jamie could stay home with everyone else in case someone gets sick.

The last few weeks we have been reading a photographic social story to help the kids prepare, as well as simulating the study with stickers.  Little did I know that the photos only presented a broad overview of the whole procedure.  It was a bit more than we anticipated, and I am soooo glad it was Micah who went first.  He spent a lot of time in hospitals before we adopted him at age 3, and he has very little problem with any medical procedures.  (He will actually help a nurse find a vein for blood draws, and then offer his other arm once the first is done!  He knows he has to choose between ice cream and fries after a blood draw, so maybe he thinks getting stuck in both arms would mean both ice cream and fries??)

 We arrived at the hospital at 7:30

 Micah was happy to put on his pajamas and jump into the bed with the iPad.

 He did not realize all these wires would soon be attached to his head.

 Micah was very good through the scrubbing of his head and gluing on of the wires.

Amelia would have been completely hysterical by now.

 He was not overly happy with the oxygen in his nose.  It baffles me that they can hook all these up to a child, including two on his chest plus the two belts with wires around his stomach, then tell him to lay down and go to sleep.  He was restless, and ended up needing some arm guards to keep him from pulling at the itchy and annoying spots.  This made it even more difficult for him to sleep.

 He was up several times in the night getting reattached.  At 5:45 the study was abruptly finished when Micah threw up.  It seems he did not escape the stomach bug after all.

 Micah finally fell into a deep sleep- on the way home.  It was a quiet drive, and I was thankful to be heading west since the traffic headed east in to Boston was heavy and very slow.

In the end the sleep study was a success.  Micah is now sleeping on the couch.  Poor Leif was sick in the night at home, so I am glad Jamie did stay here.  Of course this means Jamie and I did not get much sleep last night either!  

Next week ShanLin goes for her sleep study.  I really have no idea how that will go, but I already know it will be a nightmare when it is Amelia's turn in three weeks.

We are home safe, Micah, Leif, and Jamie are sleeping on the couches and Kimberly is sleeping on me.

God is good!

Photo Updates

My computer time has been pretty limited lately to random email and Facebook checks...sharing one computer with my man and three teens does limit me!  We have been busy enjoying the beautiful weather, getting Spring planting ready, and just (barely) keeping up with daily routines.  

Here are a few photos taken recently:

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 Leif has on a few occasions climbed into Kimberly's swing, turned it on, and fallen asleep.  22 months old and already missing the good ole days??

 We were given a bumbo seat for Kimberly, and she loves it!  Her head control is great, and she loves playing with toys.  It has been such a joy to watch her gaining new skills.

 A few days ago Leif snagged Dante's iPad and took off.  He discovered the only place his brothers could not get to him!

 Our amazing new playset is done, but those photos will have to be a post of their own.  Nikita and Kimberly are enjoying some time on the tire swing.

 Wearing a cowboy hat while folding the laundry makes it a manly chore.  Not that I needed the little tikes "help".

 Zachary's hen "Eleanor" sat on some eggs, and is now being a good momma. The eggs were not all hers, but she was happy to sit on whatever Zachary snuck under her!  (Can you see her eye under all those fluffy white feathers?  She is a beautiful hen.)

On Wednesday Amelia and Micah are each having a sleep study at Children's Hospital Boston.  We have been trying to prepare them for it, and did some role-playing tonight.  Leif of course had to have a turn getting stickered.  We would definitely appreciate prayers Wednesday night while we are there-- Amelia is definitely going to have issues with the process.  Shan Lin will be having her sleep study in a week.

Part One: Out with the Old

Can you see how it leans?  This playset is 12+ years old and needs to be retired.

Working hard!  These boys were 4 and 5 when Jamie and our friend Doug put this playset together.

Hardly working?  Perhaps the teens have paused to reminisce about the good old days?

A job well done.

But not nearly done...see the nice neat pile of lumber on the right side?

To be continued...

The Boy is Clueless

Leif has no idea that he lives in a very odd family.

 He does know that his big brothers are soft, and safe.

He has no idea that most families are not this big.  Or weird.

 He does know that Sunny is fun and their affection is mutual.

Leif does know that Dante likes it when Leif shares food with him.  Besides, then he doesn't feel so bad when he decides that Dante will share food too.

Leif has no clue what Down Syndrome is, or that five of his siblings have it. 

 He has no clue that most people are scared of people like his siblings, because they are different. 

Leif does know that there is nothing scary about them.

He thinks they are the 3 Musketeers.

And he is D'Artagnan.

Life is awesome with siblings like his.

He knows that he loves Micah, Sunny, and Amelia and he wants to do everything they do.

 Leif knows that big sister Amelia is great at helping him explore new things, like snow.

Leif knows that Amelia will comfort him when that other big sister won't let him play with the scissors.

Leif has learned love and affection from his amazing, weird, lovable, and fun siblings.

And he gives it right back.

He gives the love and affection right back, because sharing is good.

So while Leif might be clueless about Down syndrome and the world's values (or lack thereof),

he knows exactly what matters.

Love