In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Thursday, May 13, 2010
D&D: DOCTORS AND DRAMA!
Before I forget to say it: HAPPY MOTHER's DAY! (Belated, but better late than never!). I made sure Mommy smiled, and Daddy made sure that his divas were happy, so it was a good day. Now to my news: This month started out with a smooth visit to see Dr. Bach. I was checked-up, and everything about me was updated. I’m happy that I’ve been healthy and ailment free, so the basics remain the same. Because of the cold weather and the ups and downs of the overall climate I cannot be without my vent further than an hour, but hopefully that will change in Summer. Spring has been very bad to me and to mommy, our sinuses getting swollen and pollen really bothering us… Can’t way to catch some sunshine!
This week I travelled to the Columbia University to see an endocrinologist. That was an appointment made 8 months ago, so I was quite excited to finally be able to be there! They drew some blood to run some tests, but couldn’t do the hand x-ray and the CAT scan because of out of state insurance issues, so those will probably happen either at Children’s Specialized or at UMDNJ. Seems like mommy and me share the same fate… Everyone wants to probe us for things we don’t have. Oh, well… better to have the empirical/statistical/lab tested proof so they all leave us alone!
School scouting for me will begin soon. Mommy has been researching all schools in the area, and all alternatives available… There’s plenty of uncertainty because of the large amount of kids in the classrooms and what that implies for my health safety. So far Horizons from CPNJ seem to be the best bet for starters, but that is still pending. The main targets for my Pre-K is to gain maximum control of my communication device (when it finally gets here), of my other adaptive gadgets, and of my power chair (when it is finally ordered… first we need a handicap-friendly home in a first floor or with accessibility).
Drama has also been present in our nurses’ lives. Nurse Peronette’s hubby had a heart attack last weekend. We are sending out many prayers and good thoughts so his health comes back. And Nurse Mashaila’s hubby was also in the hospital. Prayers sent his way too. We hope things can get back to normal, whatever “normal” means… We’ve been hosting these substitute nurses that don’t cut it… I really want my A-Team back!
Little Kalisto should be arriving to this world around June 25th via C-section. I’m so excited about it! Mommy is very stressed out, and Daddy is trying his best to get plenty done in so little time. From what I hear there’s been some difficulties with housing and job hunting, but one thing that is always constant is that Mommy and Daddy somehow manage to do what they focus on. I know they’ll push through. I just wish I could help somehow… I know managing the overall family things and then my stuff must be overwhelming. They are my champions!
God: I pray for unity and peace. May we experience bliss and certainty, may problems find a sound solution, and may I keep on been healthy so things keep moving forward. Bring what is best for all of us into our lives; we are in your hands. Bring the gift of healing to everyone who needs it, and compassion and love to those with hearts hardened by daily events. Thank you for all the miracles big and small that you bring into my life, and to my loved ones. Make me a channel of Your peace and of Your will… Amen.
Lord, make me a channel of thy peace;
that where there is hatred,
I may bring love;
that where there is wrong,
I may bring the spirit of forgiveness;
that where there is discord,
I may bring harmony;
that where there is error,
I may bring truth;
that where there is doubt,
I may bring faith;
that where there is despair,
I may bring hope;
that where there are shadows,
I may bring light;
that where there is sadness,
I may bring joy.
Lord, grant that I may seek
rather to comfort than to be comforted;
to understand,
than to be understood;
to love, than to be loved.
For it is by self-forgetting
that one finds.
It is by forgiving
that one is forgiven.
It is by dying
that one awakens to eternal life.
Amen.
-Saint Francis's Prayer
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