Tuesday, October 21, 2008
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.
Thursday, October 9, 2008
Today we had our big date with Dr.Bach. It was so exciting to have all my entourage around me, going out of the house and facing daylight! I saw my old friends Enrique, Loui and Bach. Mommy and Daddy asked some questions about me (they had a list, and it all was addressed). TherapistEllen was there with us too, and when asked if I could sit the doctor just asked the paramedics to lift up the bed to seating position. Oh, I showed everyone what I can do when I’m in a good mood. My stats stayed high, and Ellen was so excited about it! I got a prescription so a cardiologist can check up my heart rate, but besides that everything is just fine. My lungs are ok, the doctor was happy to hear I am following the Amino acid Diet… So everything I’ve been doing is exactly what I should stay doing. Mommy got a green light to try carnitine again, and to find when to get my flu shot so I’m more protected at home. The team that provide transport today was very nice people. Everything was fast, so in a blink I was back home watching Little Mermaid 3.
Mommy started this month being sick. The weather is really cold (at least for us). It’s funny, mommy went to a doctor’s appointment on Friday and the trip (cold wind) put her in bed for almost 4 days! He also started her fall session at the online university… It’s been a tiresome busy week for her. Mommy and Daddy have also been filling up much paperwork, trying to figure out if we can find another home. We cannot keep living where we are right now, rent is too high, and it does not include utilities… They are trying everything they can to comply with requisites and with finding something that they can afford and that is safe for me.
Mommy contacted the CP Loaning Center so I will soon get a switch and an adapted toy to try it… That will be fun! I will also begin having a nighttime nurse soon, so I can have an additional treatment during the night. Let’s see if Mommy and Daddy can keep up with having a stranger in the house at night… They were not thrilled with that idea in the beginning… We’ll see how that goes.
NurseGlenna is going to Chicago for the weekend. Wish her a good trip! We’ll miss you! TherapistPat will also go travel, this one to Hawaii. Someday I will travel, to Disney and then back home to my beloved little island. Time runs so fast, that I know it will be soon enough. I miss Auntie and Sti and Maria and Granma and everyone else… I miss the beautiful sunrises and the quiet starry nights. I wish I could be home for Christmas… Soon enough. Wishes come true.
Thank you, God, for you have granted so many good things to me! I am unique and precious, and so much love is always around me! Thank you for you open doors when there seems no hope and no way out… Thank you for protecting Mommy and Daddy, for the courage you give them to face every day with a smile and belief that things WILL get better. Thank you, God, for helping so many kids out there that have been in the hospital and have been in need of Your healing touch! Bless so many families that need hope with Your presence, keep granting so many small miracles that make such a big difference!