December 2004 Archives
Lisa Perry
Maura Padula & Spiderman
Jodi Burns
Andy asked me today about tsunamis. I explained to Andy that tsunamis are very large waves formed by an underwater earthquake.
Then he asked, 'Do they reach the sky?', and I said, 'no, they don't reach the sky but they're about 6 times my size and very fast'. I told him about Sundays tragedy and we both agreed to pray for the people who were affected.
Then he asked, 'What about Shamu?', so I explained that Shamu lives in a tank, and Andy felt relief.
I showed him the following pictures:
BEFORE
AFTER
The best blog I've seen covering the tsunami is here.
Andy and Sofia's first experience with waves was on 8.8.04 in Cape Cod, a picture here.
The amount of generosity I've seen towards the victims of the Indian Ocean tsunami has been inspiring. Amazon.com and the Amazon Honor System is accepting donations to the American Red Cross. They've gathered US$6,545,595.40 from 99,335 donors at 9:30 PM EST. (Andy also has a Amazon Honor System that's collected US$280.00 from 7 donors.)
If you would like to make a donation to the tsunami victims Google has a list of links here.
Kelli Cole with some orders.
A sampling of specialists and what they do from CHOP - Children's Health Tip of the Day - December 30, 2004
Endocrinologist
Sees children with problems with growth, puberty, diabetes, or disorders related to hormones or glands.
- Short stature
- Early or delayed puberty
- Enlarged, underactive or overactive thyroid
- Ovarian, testicular or ambiguous genital dysfunction
- Diabetes
- Obesity
Geneticist
Trained to identify the causes and natural history of defects in body structures, brain development or body chemistry.
- Birth defects (physical differences present at birth)
- Conditions with one or more defects (Down syndrome)
- Conditions that cause disabilities (fetal alcohol syndrome)
- Inborn errors of metabolism (cystic fibrosis)
- Familial or hereditary problems (congenital heart defect)
Infectious Disease
Treats recurring or persistent disease caused by bacteria, fungus, parasite or other rare infection.
- Respiratory infections
- Bone or joint infections
- Tuberculosis
- AIDS
- Hepatitis
- Meningitis
Neonatologist
Handles the most high risk situations in newborns.
- Breathing disorders, infections or birth defects
- Prematurity, critically illnesses or surgeries
- Life-threatening medical problems
- Medical problems in mother or baby in the delivery room that may compromise an infant’s health
Nephrologist
Treats kidney, urinary tract disease, bladder problems or high blood pressure.
- Dialysis
- Kidney transplant
- X-ray and lab studies related to kidney disease
- Blood pressure monitoring
Rheumatologist
Treats children with pain in joints, muscles, bones or tendons.
- Arthritis
- Autoimmune disorders like lupus, and scleroderma
- Unexplained complaints of chronic musculoskeletal pain, weakness and fatigue
- Inflammatory disease
Otolaryngologist
Treats illnesses affecting the ear, nose or throat.
- ENT disorders
- Surgery of the head and neck
- Communication disorders diagnosis
Hematologist/Oncologist
Diagnoses and treats blood diseases and cancer.
- Cancers including leukemias, lymphomas and brain tumors
- Diseases of the blood (sickle cell disease)
- Bleeding disorders (hemophilia)
Jeniffer Cuchinata
Picture here.
Erin Bourke
Jeniffer Cuchinata
Melissa Mancuso
Nancy Chisholm
Jilian Davido
Elizabeth Ashley
Jodi Burns
Click on each picture:
Jan Spear
Kelli Cole
Jilian Davido
The Thornley Family's Beef Stew is delicious. Thank you very much!
And it didnt need salt.
Families from Andy's school 'The Burr School' from the PTO (Parent Teacher Organization) bring some food to help us during Andy's isolation period.
More about the Burr School PTO here.
Thank you!
Julie Tarbox
Denise Braddock
W. Nicholas Haining, BM, BCh
Instructor in Pediatrics, Harvard Medical School
More here.
Jilian Davido
Thank you for noticing that the blood pressure monitor was set for adult instead of children and that was the reason why Andy's blood pressure was coming back high.
Nancy Chisholm
Victor y Nat vienen a pasar navidad con nosotros!
The Bressler Family's lasagna is delicious. Thank you very much!
Families from Andy's school 'The Burr School' with help from the PTO (Parent Teacher Organization) bring some food to help us during Andy's isolation period.
More about the Burr School PTO here.
Thank you!
ATF
Timothy Stephen Wakefield a.k.a. Tim Wakefield, number 49, Boston Red Sox 2004 World Series Champs signed Andy's pillowcase with his autograph at Room 'D' of the Jimmy Fund Clinic today.
Robin O'Connell, Andy's Primary Nurse at the Jimmy Fund Clinic arranged his visit. Tim Wakefield was holding the World Series trophy when he steped into the room followed by a photographer. He said hello to Andy, who at the time was watching a Batman movie. Tim Wakefield knealed down next to Andy's bed (still holding the trophy) and signed the pillow case with the following message:
"To Andy, Best Wishes! Tim Wakefield 04 WS CHAMPS"
Here's a picture of the autographed pillowcase:
More about Tim Wakefield here.
The Shah Family's Pasta and bread are delicious. Thank you very much!
Families from Andy's school 'The Burr School' with help from the PTO (Parent Teacher Organization) bring some food to help us during Andy's isolation period.
More about the Burr School PTO here.
Thank you!
Nicolle Quinn
CLinical Dietitian
Robin O'Connell
Dr. Jessica Sachs, Andy's Primary Fellow called a few minutes ago with a medication change.
We're moving Neoral from .40 to .45 ml. twice a day.
List of meds here.
I got a deal from Oreck. If you buy this Air Purifier for your home or office Andy receives a comission.
Oreck Super Air 8 Professional Air Purifier
El programa se llama "Un milagro de amor", es un programa grabado que va a salir el 13 de Enero 20 de Enero en Radio Centro (website) en la Ciudad de Mexico.
Abuela Marilu dice lo siguiente via chat:
"Maruja me presento les dijo 'hace tiempo que tenia ganas de traerles una sorpresa, se trata de mi quiridisima amiga Marilu quien les va a platicar una historia que yo le titule Un Milagro de Amor acerca de su nieto Andy'."
Y tambien,
".. y hable yo casi todo el tiempo y resulta que le gusto tanto al productor que no me interrumpio ni para comerciales y al final me felicito y me dijo que si yo ya habia hablado en el radio. Le dije, para nada es la primera vez que lo hago, estuvo tan emotivo que todavia no me sobrepongo. El programa es cada jueves a las 2 de la tarde en Radio Centro que es de Radio Red.
Y luego,
"Creo que tengo la facilidad de poder resumir, porque claro que no tienes todo el tiempo que te gustaria, pero yo tambien pensaba, creo que ya es hora de comerciales, pero pues si no me hacian la senal yo seguia... dije la historia de Andy desde el dia que nacio a la fecha"
Y tambien,
"si yo no crei que podia hacerlo, cuando oia a Victor pensaba que que valiente, ya que estaba ahi se me venia un pensamiento y cuando me daba cuenta me estaba saliendo por la boca"
Derek Callaway, MS, PA-C
Physician Assistant
Hematopoietic Stem Cell Transplantation Program
Children's Hospital
Andres & Paulina
Kelli Cole, certainly one of the strongest, upbeat, gracious nurses we have ever met.
Thank you for Mr. Incredible for Andy.
And Boobah for Sofia:
Jilian Davido
Kelli Cole
Lisa Perry
We've got 2 of these air purifiers working 24 hours a day at our apartment.
Buy one here for your houme and help Andy:
Christina Hodge
Nurses Top List in Honesty and Ethics Poll
Grade school teachers second, with pharmacists and military officers
PRINCETON, NJ -- Gallup's annual survey on the honesty and ethical standards of various professions finds nurses at the top of the list, as they have been all but one year since they were first added to the poll in 1999. Almost 8 in 10 Americans, 79%, give the nurses a "very high" or "high" rating, down slightly from 83% last year. In 2001, shortly after the Sept. 11 terrorist attacks, nurses were topped by firefighters, who received a very high/high rating from 90% of Americans.
More here.
Kelli Cole
Jilian Davido
Technology Review: Massachusetts Institute of Technology magazine of innovation that covers the world of practical technology talks about Preimplantation Genetic Diagnosis (PGD) on their December 2004 issue.
They define PGD as follows:
PGD is a state-of-the-art diagnostic procedure used with in vitro fertilization to test embryos for genetic disorders. It is also used to detect aneuploidy (the wrong number of chromosomes) and other chromosomal abnormalities, which result in birth defects, cognitive disabilities, early miscarriage, and implantation failure. About 1,000 babies worlwide have been born following PGD.
Download PDF image of article here.
Subscribe to Technology Review / MIT and help Andy:
Every morning Andy manufactures bugs in his hospital bed in room 613 at the Stem Cell Transplant Unit at Children's Hospital Boston. He uses bottles of 'Plasti-Goop Compound' and fills the 'bug molds', holds them with the 'mold handlers' and uses the 'Creepy Crawlers Molder Oven'.
Buy your own 'Creepy Crawlers Bug Maker Oven' and help Andy:
Some of the bugs end up as 'presents' for nurses who measure Andy's 'output'.
But he likes to keep the other bugs, the best ones.
Here's a picture of Andy's inventory of bugs:
Adam Fitzpatrick
Julie Tarbox
Elyse Topp-Poirier visited Andy today!
Elyse ran the Boston Marathon last April, teamed up with Andy to raise funds for Children's Hospital Boston.
Click here for a picture of Elyse and Andy.
Elyse gave Andy as a present her running shirt she used to run the marathon. The running shirt is hanging next to Andy's hospital bed.
Here's a picture of her Children's Hospital running shirt:
And next April Elyse will run again! Fundraising starts today!
Visit www.elyseforandy.com, wait for this years updated website. All the top ten ways to help are working. You can also leave messages for Elyse there.
ATF
Sofia shows her fist tooth here.
Paty Liberta
Christina Hodge
Specific NEMO mutations impair CD40-mediated c-Rel activation and B cell terminal differentiation.
Jain, A., Ma, C. A., Lopez-Granados, E., Means, G., Brady, W., Orange, J. S., Liu, S., Holland, S., Derry, J. M.J.
J. Clin. Invest. 2004 114: p. 1593-1602
Read the article here.
Paty Liberta
Lisa Perry
Andy was able to go to the garden for the first time with his new immune system.
Here's a picture of Andy with Kelli Cole, getting ready to go:
He had to wear the Power Rangers mask (we don't like hospital face masks) and he rides the elevator alone.
A picture in the garden @ The Picture of the Day here.
Super Fan nursing student Katy Philips.
Abu "Lopita" como dice Andy, desde Boston, Massachusetts a Tuxtla Gutierrez, Chiapas.
Gracias por tu ayuda! Nos vemos pronto.
Kelli Cole
Maura Paulsen
Kelli Cole
Julie Tarbox
Jeniffer Cuchinata
