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!|