It's May! AGH! Where in the world has time gone....it's been a journey and without getting too sappy on you, here's the latest Bruce update ::
Infusions are going great - we're about to start the new drug trial with the adult version of his enzyme replacement therapy next month and Children's has been busy-busy getting paperwork finalized behind the scenes....better them than me, I say.
We met with neurology a couple weeks ago and she was PLEASED to see Bruce as he is now...seizure/spasm-free since November 2011, happy, smiling and growing well. I have NEVER seen that woman pleased so it made my day. Week. Year. Lifetime. She does want a MRI soon just to see what the abscess looks like and that's just a drop in the bucket for this pro.
PT/OT is making some amazing strides. Since starting in December, Bruce has mastered rolling over, sitting up, weight bearing on the legs and is close to pushing himself to sitting up, staying up on all fours and taking steps while holding hands. When he started after all of his hospital stays, it was way too fuzzy to say when he'd be doing any of this so to have these goals in the bag so soon is amazing. He's a strong little guy and practice makes perfect!! He's pretty much given up on the bottle so his calories are primarily baby food and bolus feeds down the g-tube. We're slowly working off the night time continuous feeds because sleep is nice for parents.....
During April, Bruce had a couple poor hearing exams. Yesterday he had an ABR where I kept the poor guy awake by rolling him in a wagon through the hospital after his morning PT appointment so he could people watch all the interesting people you see at Children's Mercy and then he slept through the hearing test of all the pitches. Low and medium pitches were normal but associated with meningitis as he had are damaged cloacaes...(I always thought that was chicken anatomy but apparently different spelling) and high pitches are affected. He is borderline failing and quite possibly going to get worse as the cloacae grows incorrectly as he grows. So, we get to add an ear doctor to the large team of Bruce's plethora and maybe I get to meet the entire staff at CMH! So, that doctor that asked me if I worked there last time could quite possibly be our new doctor.....Anyways, we'll do our best and take whatever treatment necessary to ensure that Bruce hears his momma say, 'Get out of that mud puddle' or 'Leave that poor dog alone' or 'Stop chasing the calves' or whatever this ornery little boy will be up to....
Coming up we have the Muscle and Nerve Rehab Clinic, Neurosurgery follow up and Cardiology follow up. We are not expecting any major changes and are looking forward to the rehab clinic for their initial assessment and if Bruce is a candidate for any specialized mobility tools. I don't think he'd use them too long as much progress as he's making but if it helps in the meantime, we'll take it!
On the family side - Congratulations to (my sister) Aunt Kacie and her new husband, Uncle Jake!! He's pretty much always been Uncle Jake but it was nice of her to finally make it official :) The wedding was beautiful and so much flippin fun and they had a great time living the honeymoon life in Mexico...now they're back in Iowa and ready to start the rest of their lives together!! I'm not even going to say it but Bruce would like some cousins.....ONE DAY.
Bruce's Uncle Seth (my brother) is now on his second deployment to the Helmand Region of Afghanistan and hopefully the last if politics and government ever get their heads out of their asses and ya, ask me how I really feel. We pray every day for Uncle Seth and all of the Marines and troops on deployment and will write him all the time!! WE LOVE YOU, UNCLE SETH!!!!!!!!!!!
Bruce has his first birthday this month!!! There is much to do yet for the big celebration but that'll all come in time...so I keep saying :) This coming weekend we will be walking with some friends and family in the KC March of Dimes Walk and I cannot wait to be a part of that!! Hopefully we'll get to see some familiar faces from the beginning days in the NICU and to be a part of such an amazing organization will be neat....Go TEAM BRUCE THE POMPE MOOSE!!
Little man wanted to take momma's chair and watch cartoons during his last infusion....of course I gave up my seat!
I think that's it...so much for keeping this blog updated with short and sweet posts :) Thanks for reading anyhow....God Bless!!!!!!!!!!!!!!!!!!
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