Last week was so, so… boring, uneventful… I guess that can be good given my situation. I simply kept on minding my own business, watching my beloved videos, exercising so my baby muscles keep on flexing, and trying to figure out how to make the rooster sing (adaptive toy loan… the switch is not as simple as it appeared). I’ve been using the special stroller a-lot.
Now that I showed everyone that I can actually be a bit seated (30 degrees), I get to hang out using it… without much problems. Mommy & Daddy figured out it is better to use the suctioning catheter instead of the wand when I’m “seated” like that, so my throat is not damaged.
What a head start for this week! I had a date on Monday morning with my pulmonologist, Dr Aguila. Wow! I was beyond impressed. This lady asked everything from when I was born to the current facts, looked up my x-rays, and checked me up completely. Answered questions, was friendly, offered her assistants availability 24/7… Turns out that back when I was in ER I really had beginnings of pneumonia. She showed daddy the spots in the x-ray, and was mad that ER had not sent us to a specialist upon letting us go. Things that makes you go hmmm, I guess…
Anyway, that story should be over. She assessed my current needs. With the new cold season upon us, and this not so sunny weather, she prescribed a medication to help secretions come up at treatment time (what most know as nebulizer, using Xonopex), and a medication so my slaves can have a bit more time to breathe (Robinul, half a pill for starters). NurseGlenna wanted to start me on it right away, and so did she. Mommy recalled the process for the nebulizer from the hospital, not difficult at all. Just add 20 minutes before my scheduled treatment routine so it is done consistently.
UncleSti called in the afternoon. He’s alive! And kicking! And still a cool guy! I know, he doesn’t forget about me… He always make sure that people on his church pray a lot for me. That may be one reason I am big and beautiful and alive. I also got some pics of FatherEdwin and the changes at the Fatima Church. It is all so green! Like hope! I like it! It looks happy!
Today there was a meeting with my communication specialist and my physical therapists. They showed me a few tricks with the weird switch. I definitively like the rooster, it’s funny. There will be a meeting soon to see which services stay for a bit longer in a few weeks. Everyone is happy that I get to be off my back for a few hours. Yay!
Mommy has been a busy bee with her assignments. Geesh, these classes are bleeding her dry! Daddy is following those footsteps with his practice. I miss having everyone around me around the clock… But it is ok, I know that they are both there when I need it. They are my best support team!
It’s been one year since my baptism. Who would have known that it turned out to be one of the most important dates of my life, besides my being born! God watches over me day and night. He blesses me constantly, sending me so many good things. Yup, He sends not too much, not too less, just the right amount. I am humbled and grateful to Him…
Being here on Earth has been quite an experience! Most think I am in pain, as things are hard… a simple thing like breathing is a big thing for me… But you know what? Every little second is worth all my effort. Because of my hard work I keep receiving the greatest gift of all: Love. May all babies around the world get this gift as a reward for their effort, for their will to live. God, let this small request be.
Amen.
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