Happy 3rd Birthday McKayla!!!!!

Dear McKayla,

It has been three indescribable years since I first laid my anxiously anticipating eyes on your beautiful little face.  Since then, the time with you has been filled with fun, wonder, excitement, worry and absolute joy.  I am so proud and honored to be your mother, and to have taken part in your transformation from a completely dependent and helpless infant to a thriving little girl.  This past year you have grown by leaps and bounds.  You have gone from saying only a few words to speaking in complex sentences.  You've learned so many things and you constantly amaze your daddy and I with what you know.  Each day, you astound us with a new phrase or saying.  Some of it may be you regurgitating what you have heard us say, but it is so cute to hear in your voice and to see it take shape in your personality.

  

I think, though, what we find most wonderful about you is how nurturing you are towards your brother.  You love to give him hugs and kisses; you ask every day to hold him or want him to sit with you; you like to help feed him, both his bottles and and his solid food; if he cries or fusses, you will pat him on the head or back and say, "it's okay brudder."  If you are in a different room, you will yell out, "it's okay brudder, I'll be right there."  You are a great big sister.

You are such a beautiful little girl.  Definitely on the outside, but especially on the inside.  We love you immensely, baby girl.  Happy Birthday!

A walk down memory lane....

McKayla in the making...

Your first day in the world

Look at all that red hair!

6 months old

9 months old

1 year old

15 months old

18 months old

This is before we cut that beautiful hair...

(and you were just over 2 years old)

This is you now!

The cataract surgery

Landon's surgery this past Wednesday went very well.  The cataract removal and insertion of the implant went just as the doctor wanted it to.  When we took Landon home, we were instructed to leave his eye as it was - covered with a metal shield over gauze - until we went for his follow-up the next morning.  Landon had the shield off by the time we got home.  I had to re-tape the shield back on. 

When McKayla first saw Landon after she got home, she was speechless.  Then finally, she asked what was on his face.  I explained that Landon had surgery on his eye, just as she had and he had to wear the patch to make his eye feel better.  Later, she told me she didn't want to see the patch.

Landon checked out fine at his follow-up appointment the next morning and we were given our instructions for home care.  One type of eye drop medication 2 times per day.  Another 4 times per day.  And finally, a third eye drop - every two hours.   Oh boy.

After I got home, I laid Landon down on the changing table and glanced at his eye, which was uncovered at this point.  What I saw made me panic.  A bubble floating in his eye.  I ran for the phone and dialed the number of the opthamologist -which I know by heart now.  I explained what I saw and was put on hold, my heart pounding, imagining the worst - they were going to have to operate on his eye again.  BUT, the receptionist came back on the line and said it was perfectly normal.  The opthamologist actually inserted the air bubble herself and it should dissolve within a few days.  I was so relieved to hear that it was okay that I didn't even think to ask what the purpose of the bubble was.

So far this weekend he has actually done pretty well with both the drops and the shield.  We only put the shield on him when he sleeps and rides in the car (since we can't keep him from rubbing his eye then).  Monday, we see the opthamologist again for what will be one of many more visits to come as we get the newly seeing eye healed and working again.  

Eye alignment

In an effort to just get things done, we also scheduled McKayla's eye surgery for this past week.  Hers was Wednesday and was to correct the misalignment of her eyes.  The opthamologist had to clip a muscle and reattach it for each eye. 

We arrived at the surgical center about 20 minutes early (I know, how did the "late shift" manage that?)  While sitting in the parking lot waiting for the front doors to open, a little crack in my windshield made a pop! and extended tentacles out across the lower part.  Oh yay - something else to deal with.

After we got inside, it wasn't long before McKayla was called back.  Now, we were instructed no to let her have anything to eat and drink after midnight, but she was hungry and kept asking for something to eat and drink.  This made my tummy growl harder.  It wasn't long before she was whisked back to where they would put her under anesthesia and perform the surgery.  No sooner than I get outside, sit down and Dustin makes a quick run for coffee at the Starbucks next to the surgical center, the doctor came out and said McKayla did just fine.  We went back and she was crying, most likely confused.

The rest of the day was nice.  She and I spent the entire day in "mommy and daddy's" bed watching the Backyardigans.  We also took a nap (which mommy really needed as well!).  She was quite tickled to eat lunch in bed on the tray that Dustin built for me.  Lunch consisted of her favorites - strawberries, grapes and "tatoes".

Landon joined McKayla for breakfast in bed the next morning.

Minus the surgery, I could use more days like this!

Eye measurement and ear tubes

I'm sorry it has been a while and that I have not done a good job at keeping everyone up to date.  Let's just say that things have been, hmm...crazy is a good way to put it...and I've been, as always, tired.  

So, by reading previous posts, you were aware that Landon was scheduled to be at the hospital bright and early this past Monday morning.  6:00 a.m. to be precise.  The Friday before was Landon's pre-op check-up with the pediatrician.

So, wouldn't you know, poor little Landon started throwing everything up Friday morning.  We mentioned it to the pediatrician, but he didn't seem concerned at that point, since the upchucking came on the heels of a coughing spell.  Landon has remained congested, with periods of improvement, since he was 3 weeks old.  Every now and then, he'll actually cough and get the mess up.  But Friday, he would cough, gag, choke and puke.

This continued on Saturday.  We knew the pediatrician's office closed at noon, and had no clue what would impact it would have on surgery if it didn't improve over the weekend.  We put a call into the pediatrician's office and they recommended that we take him to the ER so he could have blood work done, electrolytes checked and possibly get some IV fluids if need be.  

After being in the ER for a while, an xray technician came in to take Landon for an xray.  She was met with two confused faces, tilted to the side, with the question, "what the...?" written on our faces.  She had the doctor come speak with us, and he explained that it is for pre-surgery purposes?   Well, we wanted to make sure he was okay for surgery, so, sure, why not?  The xray showed that Landon had pneumonia and they wanted to admit him to "monitor" him for low oxygen saturation.  So our hearts begin to pound - is he going to be okay?  Will they still be able to do surgery?  Why has the pneumonia come back?  

Let me interject here that ear tubes and eye measurement are not procedures to correct a life threatening illness. However, Landon cannot see out of his eye.  His eye has begun to wander off and tracts with the other eye only part of the time.  I'm terrified of him loosing use, even though the opthamologist has tried to reassure me that we are not there yet, but the surgery needs to happen sooner rather than later.  The surgery cannot happen without the eye measurement, and the eye measurement has been postponed twice because of Landon being sick.  All of this information is to help explain the intensity of my frustration with the doctor at the hospital that I'm about fill you in on.

Saturday evening, Landon was admitted and we got settled in to the hospital room.  On Sunday, the doctor came in and explained that he was mostly concerned about Landon being on oxygen and pretty much figured since we were there, why not wean him off.  I promptly explained that a pulmonologist was looking into the issue and planned to address it once we got past the surgeries, knowing that was the pressing matter.  The doctor seemed annoyed that we had Landon put on the oxygen Saturday night as soon as he fell asleep.  He didn't know how long Landon stayed down or how low he went.  The doctor called the pulmonologist and told us that the pulmonologist was on board with his decision.   The doctor instructed the nurse Sunday evening not to put Landon on oxygen unless his sats dropped and stayed below 92.  He also said he couldn't give his blessing for the surgery until he had figured out the pneumonia and oxygen saturation issue.  Another xray would be done Monday (yes, the day of surgery) to see the status of the pneumonia.

Now, something that has made my blood boil since Landon's hospitalization with RSV is the number of medical professionals who explain that Landon's baseline oxygen saturation may be lower than most and that may be okay for him and that kids with Down syndrome may have lower baselines...blah, blah, blah.  Knowing what low oxygen saturation does to a person does not make it OKAY to me, especially since he has Down syndrome.

After Landon fell asleep, his sats hovered between 88 and 92.  The nurse tried and tried to do everything she could to get his sats to go up and stay up - to no avail.  She had to put him on oxygen.  I really wanted to scream, "I TOLD YOU SO!"  But, I bit my tongue.  She was just following orders.

Monday morning I awoke to a knock on the door.  In walks the doctor (a different one from Sunday) as well as Landon's opthamologist.  I explained everything that had been going on.   The doctor had a misunderstanding of the situation and our opthamologist explained Landon's history.  I could have kissed her.  If she hadn't come in and interjected, the surgery would have never taken place.  

They said Landon did just fine under anesthesia and when they wheeled him back to the room, he was sitting up and looking around.  The ENT said that he was able to get tubes in both ears, though the left one gave him a bit of trouble.  He had to use the smallest tube manufactured and it was a bit tricky as Landon has teeny tiny ear drums.  The ENT said that the fluid behind his eardrums was thick and gooey.  

After the surgery Landon had the xray.  The hospitalist on duty at that time said that she didn't think it was pneumonia, but most likely atelectasis, or partial lung collapse.  She knew we would be following up with the pulmonologist and that he had home oxygen and a pulse oximeter, so she recommended chest PT and sent us on our way.

I feel like it was a weekend wasted, but at least we got the result we were looking for on Monday - Landon's surgery happened.  And, too, Landon is okay.  The diarrhea continued for a couple of days, but now is gone and he is back to his playful, talkative little self.  

Just a few pictures

It was a nice day out, so we went out for a little bit.  Landon really enjoyed it until the sun went behind the clouds and the temperature started dropping.

Yesterday was fun with hair - McKayla and Mommy with pigtails!

McKayla dancing with Landon.

McKayla trying to hold Landon up.  "Oof, brudder's heavy!"

Last weekend when the weather was fairly nice out, McKayla and I went for a walk.  One of her babies went with us.  She is quite the nurturing little mommy!

Look at the big guy standing up!  That nifty thing on his back is a little backpack that Dustin hand-sewed to keep the hose to the cannula in when Landon is awake.  When we don't leave the cannula in and we have to try to put it on when he falls asleep, he gets mad, puts up a fight and nap time is over.

 

Next Friday begins the medical adventure for the next two weeks.  Landon has his pre-op appointment and then Monday will be the eye measurement and ear tube surgery.  We'll keep you posted on how everything goes!

Dreams in Reality

When you have a couple of minutes, go to this link and watch this excellent video about adults with Down syndrome living in Sacramento, California.

Of Cases and Cows

Yesterday, McKayla spent much of the day playing in her new "case", or cave for those of you who do not speak McKaylanese.  I initially called it a fortress, so I don't know where she gets "case" from.  Nonetheless, it was very fun for her.  I'm not sure what it is about building a fortress out of random things with a blanket draped over, but I remeber staying with my Great Aunt Pattie as a kid and building one out of a card table over many weekend trips and summers.

For some reason, McKayla seems to like to bring every toy she owns into the "case".  I hope this doesn't mean she will be a hoarder late in life.  She even let Landon come in to play.  

Later, McKayla went outside to play and Landon and I stayed in.  It was the perfect opportunity for me to snap some pictures of him sitting up and the cute faces he makes:

"ahhhhhh"

"yeah!"

fishyface

look at those hands!

airplane!

maybe he's signing Daddy?

"yeah, again!"

airplane nosedive

So, last night, Dustin told McKayla that she is a silly girl.  McKayla replied to Dustin that he is a silly boy.  Dustin and I were so impressed that she made that distinction, so Dustin asked, "what is Mommy?"  McKayla replied, "a boy."  Dustin asked again, "what is Mommy?"  McKayla replied, "a cow."  What the...?!?!  Dustin, of course, began laughing hysterically, while I began to think this is not the year to throw all resolutions out the window (since you never follow them anyway).