An Update on the Man Himself - Mr. B

Well you would think that with working less I would be much better at keeping the blog updated, but reality is that I am putting up an honest effort to NOT be online every day. However it’s time for a good one so here is the latest with Beckett…

Next month (June 12-15) we will head back out to CHOP for another evaluation for Beckett. He will have some clinic appointments on that Thursday and then Friday morning will make another trip back to the OR for a bronch to take a look at his airway. We are hoping with all our might that they tell us Beckett’s growth over the past 6-months since his last bronch in December has been sufficient enough that his tracheal malacia (floppy airways) is no longer as big of a concern and we can start using the speaking valve during waking hours and eventually start the capping process (completely closing off trach). This essentially means that we will be able to start the process of Beckett relying on his trach less and less and moving forward the final goal…decannulation (trach removal). Ideally we would LOVE it if they were able to give us a timeline for when they believe that Beckett will be ready for his second LTR (airway surgery) and decannualtion, but are expectations have been set that Beckett will be 3-4 years of age so our earliest expectations would be next spring. Fingers crossed though – God is a miracle worker!

In terms of speech we continue to hear more and more vocalization from Beckett. In fact, he makes this “screaming” noise now. Not really screaming, but for him it is. And the positive note is that we are hearing him vocalize without his speaking valve on - a sign that his airway must be growing and opening up. We continue to work with a speech therapist weekly and have been able to start expanding some of Beckett’s vowels/consonants and the combination of them. The new one recently is the letter “F”, which we’ve had great success with in that Beckett loves “Fire” and “Frogs”. We are still signing, but have started to move away from sign some since we know he is able to vocalize now. Although I did make the mistake of teaching him the sign for “shoes” which he signs ALL THE TIME – probably the new favorite. The best is when we walk through the shoe department at the store – he points and signs so much I’m afraid he is going to get carpal tunnel!! So overall speech is still slow going, but he’s SO smart and so I know he is going to take off one of these days and probably just start talking in full sentences :-)

Beckett's new FROG in his fish tank.  He's been helping us practice our letter "F"

In terms of weight gain and eating, we continue to make GREAT strides. During his last weigh-in with the nutritionist who comes to our home month he finally topped the 25 pound mark, which seemed to be elusive for awhile. His height has always been good – he’s tall like his mama and dada. His height for weight puts him at about the 15% on the growth chats. Small, but mighty is what I like to say! We are continuing to wean him from the PediaSure formula and have made additional reductions in the amounts he is receiving. I imagine that within the next month he will be solely on whole milk. Fruits and veggies continue to be a challenge, but we keep trying. Last weekend we fried up some Morel Mushrooms, which are a rarity if you have even ever heard of them. Of course Beckett ate them like it was no big deal!!! Ryan made the comment, “Of course Beckett would like the vegetable which is $50/pound”. Touche!!! So we keep trying and trying and trying. I’ve found that persistence is key here.

Beckett and the Morel mushrooms as we cleaned them


And of course no update would be complete without a few pictures of the man himself – Mr. B:

Seriously - can he get any cuter?!

His sophisticated look

On a walk with our Monday morning play-date Miss. B

Who needs pants?

Or any clothes at all?!

These two are always in cahoots!

Both love the water!

And then there is Cramer, whom we met on a walk.  He was huge, but a gentle giant and Beckett really got a kick out of how big he was!

A kiss from Cramer!

Spring Reaction

As with most of the country we've had a long winter this year.  In fact, it snowed at the beginning of May here in Kansas City.  Yes that's right snow in MAY!  Insane.  And so I've been yearning for the warm weather to come.  To be able to enjoy sometime with Beckett outside before the blazing heat of summer arrives. 
But a few weeks ago, mid-morning Beckett and I went for a walk to the pond near our house to get some fresh air and to see the ducks.  It was the first day in awhile that the temperature was above 60 and you could smell the sweetness in the breeze from the blooming flowers and trees.  We returned home and I fixed Beckett lunch and then he went down for a nap.  He seemed well until he woke up from his nap a couple hours later.  He woke up crying with a low-grade fever and SUPER congested.  Now anyone who knows me knows that I am an absolute germ freak and so I was baffled on how Beckett could have woken up with a cold when I am SO careful with him and he was fine just hours ago. 

So as the afternoon went on I continued to have to suction Beckett, but his temperature was within the normal range.  As I put him to bed I hoped for the best, but knew when I went to bed at 10:30pm it was going to be a long night.  At 11:45 Beckett was awake and crying and a HOT MESS.  I went into his room and his chest was full of congestion and his nose was running like a faucet.  It's in moments like these that I would give anything to have Ryan not travel.  As here I am trying to calm Beckett and gather the items I need to care for him (inhalers, Tylenol, suction machine, etc.) and of course putting him down even for a moment is NOT acceptable to him.  So I tote him around the house half awake gathering items I need and soothing him.  I sat with him in the chair in his room until 1:00am.  He slept and was much less congested sitting up right, but I was awake.  Finally I inched Beckett back into his bed and went to sleep in the bedroom next door.  I was up to suction him about every 1.5-2hrs, but he seemed to sleep.

When morning rolled around I wasn't sure what to expect...upon entering his room he seemed in decent spirits but the congestion in his chest and that which I suctioned out of his trach was so thick and nasty colored I thought surely he had some kind of infection in his airway.  We had a new nursing coming that day since our regular one had the day off.  Thankfully she was excellent and advised that she thought Beckett's symptoms were characteristic of a severe allergic reaction to the spring pollens.  After a call to Children's that is exactly what we confirmed.  Youzer!!! 

So for the past couple of weeks we've been managing Beckett's allergy symptoms with inhalers and Claratin.  I was bummed to think that after the long winter we might have to remain indoors for additional time, but I am happy to say that since everything has now completed the blooming process, Beckett is doing much better!!! 

New Victories

Well folks I've been doing this part-time gig for almost 1-month now and can honestly say that it's treating all of us Kreinbrings well.  Stress levels are lower, family time on the weekend is actually happening (instead of rushing to get everything that needed to be done, done) and Beckett is talking up a storm! 

We are starting to settle into new routines and activities and celebrating new victories.  These days instead of persuading someone to move to Doha, Qatar I am convincing Beckett to let me brush his teeth one more time.  And instead of running from one meeting to the next I am chasing Beckett around the house from one activity to the next.  Things are much different now, but a good different.

Here are some pictures of our recent doings:

Going for a walk at the pond to see the ducks, which Beckett now says "du, du, du" when he sees them :-)

Planted some spring flowers

Was invited to a neighbors house to play on their swing set

First time to "Story Time" at the Library

Exploring the characteristics of water in our new water table

Family golf outing!  Beckett LOVED riding in the golf cart :-)

Video Update

More updates to come, but some videos to share for now...

Trying on some slippers before bath time

Practicing my speaking valve and being silly!

 

Easter Weekend 2013

On Friday of Easter weekend Grandpa Kim came to Kansas City for a visit.  Dorice was also suppose to come, but was feeling under the weather.  While we were sad not to be able to visit with her we were thankful she was kind enough not to expose Beckett to any cold germs.  Thanks again Dorice!!  The weather on Friday was just beautiful so we were able to play outside and BBQ for dinner.  Beckett also got an Easter basket a little early from Grandpa Kim and Dorice which contained some goodies and new trains for his train set.  This kid is slightly obsessive about trains I tell you!!!

Playing with the water toys...not sure who enjoyed it more...Gus or Beckett!!



Football!



Run Beckett!!



A wagon ride after dinner to the pond..Grandpa, Grandson and Son...3 generations

On Saturday we dyed Easter Eggs.  This was the first time we had ever done this with Beckett.  He was more into cracking all the hard boiled eggs open than dying them, but would smile and laugh when we would pull out a freshly colored egg!  Guess he thought it was funny - who knows!

Yikes!!  Good thing my table didn't turn green.

Finished Product

On Saturday afternoon we took Beckett to Crown Center for the first time.  More specifically we wanted to take him to Fritz's Railroad Restaurant which if you couldn't tell from the name is train themed.  It was actually pretty cool.   You get seated...pick-up a phone on your table to place your order and then your drinks are delivered by a waitress, but your food gets delivered by a train system.  The track is at the top of the restaurant and when it arrives at a table a tray drops from the train and lowers to your table.  Pretty fun!  Only Beckett was so over stimulated by all the trains he hardly ate!  Ryan and I joked that we needed such entertainment at other restaurants when we go out to eat!!!

Watching the fountains outside

WOWIE!!!  This is awesome

The next day was of course Easter and the bunny sure didn't miss our house!  Beckett enjoyed carefully going through each item in his Easter basket - he's so delicate when opening gifts it's almost painful, but I'm sure it won't be long and he'll be ripping through them.

Easter Basket #1

Peeps!

Trying some cotton candy

Easter Brunch

Easter Basket #2

Before Grandpa Kim left to drive home

Later that evening Ryan and I took Beckett for a walk and Beckett got quite a surprise...our friend Mike was taking his motorcycle out for a ride.  Beckett has recently been noticing airplanes and trucks and all sorts of things so he was in awe by Mike's Bike:

Spring Break

Two weeks ago I took another week off of work.  Originally Beckett and I were planning on traveling with Ryan to Nashville for the week, but with the snow storm on Sunday and then it ending up being a busy week for Ryan we decided to reschedule for another week.  So instead Beckett and I had our own little Spring Break week!  Picture highlight below:

Practiced our flash card/puzzles

Beckett's new thing is climbing on the chairs in the kitchen!  Bad thing is he usually doesn't sit on them as nicely as he is in the picture above.

We built towers with blocks

Watched Sprout TV and practiced collecting Easter Eggs

Discovered umbrellas

Yep got the hang of this now!

Bought some new rugs for the house which we thenn enjoyed playing on.

And finally towards the end of the week we were able to get outside some and play

It was a great week - being able to spend so much time with Beckett and is a preview to what life will soon be like when I am no longer working full-time.  Just one more week to go!  

Another Snow Storm

Today we had another snow storm...I'm so ready for spring I can't even express how annoyed I am with the snow, but we are trying to make the best of it around here...

Helping Daddy shovel

Snowman Mama built for me in the backyard.