Keeping up with the Kreinbrings: B Man

Time for an update on Beckett...

Fingers crossed we've almost made it through cold/flu/RSV season with no additional sicknesses besides the one around Thanksgiving. We've lived in our usual bubble - rarely taking B out in public and when we do I get plenty of stairs regarding my can of Lysol spray, Clorox wipes and full size pump of hand sanitizer, but whatever. There are very few people who understand my life and those who do see all this as completely necessary and normal.

There really haven't been a ton of changes for B since we returned from CHOP in December. His tolerance of the speaking valve has continued to lengthen (hopefully an indication that he is growing out of his floppy airway) and we continue to work on sign language. Today Beckett's consistent signs are:

More
Eat
Milk
All Done
Hat
Train (HIS FAVORITE)
Car
Telephone
Go!
Night-night
Open
Bath
Potty
Fish (second favorite)
Flower
Butterfly
Up/Down

Beckett definitely understands more than he can sign or express and is able to identify the following :

Body Parts: Hands/Feet/Nose/Eyes/Ears/Tongue/Chin/Mouth/Head/Hair/Belly Button
People: Mom/Dad/Gus/Family/Friends
Objects: Tree/Stairs/TV/Computer/Shoes/Coat/Chair/Animals/Table/CLOCK(B is SLIGHTLY OBSESSED WITH CLOCKS) and many other objects

In terms of vocalization he can say Mama and Dada. We are working to expand here, but when the speaking valve is on he still really likes he hear himself so we usually just hear lots of babbling - just like you would hear from a baby who is experimenting with their voice. Overall speech is moving right along and based upon he progress we've been able to make with signs and vocalization our speech therapist isn't concerned about speech. It will come one Beckett mechanically able to vocalize more.

Our real challenge these days...FOOD. We've put off really pushing table food with Beckett as we were more concerned with keeping him nutritionally sound for his surgeries. Thus he was sustained mainly by pediasure and some table food. In the past month or so we've made some drastic changes to Beckett's diet. Reducing his pedisure intake and adding in whole milk. Also reducing the overall amount of milk he receives in hopes to make him more hungry to eat table food. The first week was immensely challenging and by Friday afternoon I had a serious breakdown. I called the dietitian we had been working with and we made some changes which helped, but there is nothing more frustrating then a child who will not eat. I think it's especially emotionally draining for me for a couple of reasons...(1) When B got trached in March 2011 they also wanted to give him a feeding tube in his belly. Ryan and I decided against it as we wanted to give Beckett the opportunity to eat orally, but they told us if Beckett doesn't eat or doesn't gain weight it might become medically necessary. So since then I've always feared Beckett would need this if he didn't eat. (2) Right now we are just waiting for Beckett to grow and his airway to get bigger so that we can complete his second airway surgery at which point the trach will be removed. So if he doesn't eat he wont grow...further delaying decanulation :(

Thankfully we are making progress and it's slowly getting easier. Our big hurdles are that Beckett will not eat hardly any fruits, vegetables and proteins. He has some texture aversions as well as what they call a low-reg mouth which basically means he like really flavorful foods (i.e. he LOVES Pringles pickle chips). So fun, fun!

And finally a few pictures and videos as of late: