YOU'VE COME A LONG WAY BABY!!!

Happy Birthday Mr. Maxwell!!!

All day today I could not stop just staring at you with complete adoration and amazement...you are absolutely incredible. Every day I fall more and more in love with you and am overwhelmed with the intensity of my feelings!

Sweet Max, you have endured so much in your first eight months and have come out swingin'!!! You are a fighter and have definitely earned your nickname, "MIGHTY MAX"!!!

Tomorrow (the 22nd) you will be EIGHT months old...wow! To remind everyone how far you have come, I thought we'd share with your fan club photo highlights from your very first month. What an overwhelming and difficult beginning...it was such an intense, frightening, unknown time. In just your first few weeks, you endured many life saving medical interventions, a hospital transfer, an intense surgery on your nose, and had been diagnosed with some very serious medical conditions. You were having such a hard time keeping weight on your lil' fragile body, each of your organs took their turn to temporarily shut down, and notice your skin color? Yep, you went through about every color...from brown to gray to yellow...but nothing even close to healthy baby pink.

What a month Maxwell! As they say, "You've come a long way baby!" HAPPY BIRTHDAY TO THE LOVE OF MY LIFE!!! :) YOU ARE INCREDIBLE!!!

A DAY IN OUR LIFE

Many people have asked what a day in our life is like…well here it is. (Having to prepare this for something else, so thought I'd share it with you too!) Of course our schedule is a bit thrown off when we have an extra appointment or a trip to Children’s, but this at least gives you a rough idea of a typical day.

With all the various therapies and medical care involved, we certainly have a lot to accomplish every day. But most importantly, I do my best to fit in as much love and giggles for Maxwell throughout each and every “session.” :)

6:30 a.m. Wake up and get report from nurse
7:00 a.m. Give Maxwell morning greetings!
7:15 a.m. Pump (and use internet – must multi task of course!)
7:45 a.m. Clean pump supplies from throughout the night
8:00 a.m. Morning care (ointments, nebulizers/inhalers) and medicines (SEE CHART BELOW)
9:00 a.m. Work with Maxwell on different OT/PT positions
9:30 a.m. Oral therapy
10:00 a.m. Pump and make phone calls

ONE OF MORE OF THE FOLLOWING

• Call doctors and make weekly appointments
• Calls in to pharmacy and doctors for prescription refills – arrange for pick up (takes multiple calls to finally happen)
• Review medical supplies (oxygen, tape, feeding bags) and place order.

10:45 a.m. Clean pump supplies and prepare milk with formula
11:00 a.m. Get Max ready for play time by switching pump, change oxygen tank, etc.
11:30 a.m. Walk with Maxwell outside or play time inside
12:00 p.m. Get Max back on pump, change oxygen tank, etc.
12:30 p.m. Mid-day care and medicines
1:15 p.m. Get Max onto portable tank, oximeter and feeding machine and prepare for appointment.
2:00 p.m. Physical Therapy, Occupational Therapy or Speech Therapy Appointment or appointment with Primary Care Physician
3:30 p.m. Get Max back on regular tank, prepare milk, start feeds.
3:45 p.m. Pump (and use internet – must multi task of course!)
4:00 p.m. Clean pump supplies and prepare milk with formula
4:15 p.m. Inhalers and care
4:30 p.m. ONE OF MORE OF THE FOLLOWING

• Call doctors and make weekly appointments
• Calls in to pharmacy and doctors for prescription refills – arrange for pick up (takes multiple calls to finally happen)
• Review medical supplies (oxygen, tape, feeding bags) and place order.

5:00 p.m. Oral therapy
5:15 p.m. OT/PT Exercises with Max
5:45 p.m. Medications
6:00 p.m. Research CHARGE and associated issues relevant to current age (feeding, hearing, OT/PT different styles)
7:00 p.m. Pump
7:30 p.m. Clean pump supplies and prepare milk with formula
7:45 p.m. Bath and evening care (ointments, inhalers) and medicines
9:00 p.m. Rock Maxwell to sleep
9:30 p.m. Clean Max’s room, bathroom and kitchen – sanitize, empty garbage, etc.
10:00 p.m. Give report to nurse
10:30 p.m. Do Max’s laundry
11:00 p.m. Research CHARGE and associated issues relevant to current age (feeding, hearing, OT/PT different styles) or sometimes I will unwind with some scrapbooking and/or cardmaking ( much more fun!).
12:00 a.m. Pump
12:30 a.m. Clean supplies and prepare milk for the night.
12:45 a.m. Check in with nurse.
1:00 a.m. Go to bed and get ready for another day!

MAX’S MEDS

(You probably won't recognize most of these medicines, but I share it with you "Max's Fan Club" just to give you an idea of how many meds our lil' guy is currently having to take. I have this list posted on my refrigerator with his drugs and this weekend my dad was quite surprised to see such a lengthy list! I don't think twice about it much anymore because I have grown so accustomed to Max's routine. But we are working on slowly but surely reducing this list very soon, which will be wonderful!!!)

6 am
Lorazepam 1.2 mg
Morphine .5 mg
Calcium Gluconate 400 mg
Celluvisc

8 am
Albuterol 4 puffs/6 breaths each
Fluticasone 2 puffs/6 breaths each
Atrovent 1 puff
Chlorothiazide 60 mg
Metolazone 0.3 mg
Lansoprazole 4 mg
Poly-vi-sol 0.5 mg (with 2 hours of food)
Spironolactone 2 mg
Potassium Chloride 6 mg
Prednisone
Saline nose drops
*MOVE OXIMETER PROBE
*CLEAN GTUBE SITE

12 pm
Albuterol 4 puffs/6 breaths each
Lorazepam 1.2 mg
Morphine .5 mg
Calcium Gluconate 400 mg
Celluvisc
*MOVE OXIMETER PROBE

4 pm
Albuterol 4 puffs/6 breaths each
Atrovent 1 puff
*MOVE OXIMETER PROBE
*CLEAN GTUBE SITE

6 pm
Lorazepam 1.2 mg
Morphine .5 mg
Calcium Gluconate 400 mg
Spironolactone 2 mg
Potassium Chloride 6 mg

8 pm
Albuterol 4 puffs/6 breaths each
Fluticasone 2 puffs/6 breaths each
Atrovent 1 puff
Chlorothiazide 60 mg
Metolazone 0.3 mg
Prednisone
Celluvisc
Saline nose drops
*MOVE OXIMETER PROBE
*CLEAN GTUBE SITE

12 am
Albuterol 4 puffs/6 breaths each
Lorazepam 1.2 mg
Morphine .5 mg
Calcium Gluconate 400 mg
Spironolactone 2 mg
Potassium Chloride 6 mg
Celluvisc
*MOVE OXIMETER PROBE
*CLEAN GTUBE SITE

4 am
Albuterol 4 puffs/6 breaths each
*MOVE OXIMETER PROBE

MED ROTATION
Morphine Q6
Ativan Q6
Potassium 3 times daily
Spironolactone Q8
Calcium Gluconate Q6

BIRTHDAY WEEKEND

Greetings from Mighty Max!!!

Mom and Aunt Eliz celebrated their 33rd birthday this weekend, and Papa and Grandma joined us for the celebration! What a good time! :) And what made Mom's birthday extra special was that I was here...this is her very first birthday as a mommy...last year I was just a little wee one still in her belly!

Here are some photo highlights of our weekend!

How absolutely beautiful am I? I'm just chillin' in my swing and watching the WVU Basketball game with my grandparents. (Sorry Mountaineers...you'll get 'em next time!)

Silly Shakespeare...he is always right by my side!

Papa's cheeks are sooooo delicious...yum yum!

Papa and I had so much fun cuddling and snuggling. He is sooo impressed with how good I look...and heck he is quite handsome himself! Must be where I get my good looks! :)

He and Grandma were blown away with how different I am than before...I am really making progress! Last time they saw me was right before heart surgery in November...I wasn't feeling too good then. Those holes in my heart were giving me some serious problems. But boy did the surgery work wonders!

Grandma was telling me a funny story about Mommy...she says there are lots more!!! :)

Papa and Grandma joined us for church...we loved sharing our wonderful family in Christ with them! Christ the King has provided us with so much love and warmth and we are forever grateful.

Today Mommy introduced me to our wonderful Pastor. He saw us in the nursing room as he was going into service and stopped by to see how everything was going. Mommy had prayed with him after service one day when I was struggling in the hospital...and even though he has thousands of church members, he remembered us and was so excited to hear how great I am doing. Thank you Christ the King!!!

DO YOU SMELL THAT?

I have been sent this wonderful, amazingly touching story several times and it always brings grateful tears to my eyes. Thought it would touch your heart too.

DO YOU SMELL THAT?

A cold March wind danced around the dead of night in Dallas as the doctor walked into the small hospital room of Diana Blessing. She was still groggy from surgery. Her husband, David, held her hand as they braced themselves for the latest news.

That afternoon of March 10, 1991, complications had forced Diana, only 24-weeks pregnant, to undergo an emergency Cesarean to deliver the couple's new daughter, Dana Lu Blessing. At 12 inches long and weighing only one pound nine ounces, they already knew she was perilously premature.

Still, the doctor's soft words dropped like bombs. "I don't think she's going to make it," he said, as kindly as he could. "There's only a 10-percent chance she will live through the night, and even then, if by some slim chance she does make it, her future could be a very cruel one."

Numb with disbelief, David and Diana listened as the doctor described the devastating problems Dana would likely face if she survived. She would never walk, she would never talk, she would probably be blind, and she would certainly be prone to other catastrophic conditions from cerebral palsy to complete mental retardation, and on and on.

"No! No!" was all Diana could say. She and David, with their 5-year-old son Dustin, had long dreamedof the day they would have a daughter to become a family of four. Now, within a matter of hours, that dream was slipping away. But as those first days passed, a new agony set in for David and Diana. Because Dana's underdeveloped nervous system was essentially 'raw', the lightest kiss or caress only intensified her discomfort, so they couldn't even cradle their tiny baby girl against their chests to offer the strength of their love. All they could do, as Dana struggled alone beneath the ultraviolet light in the tangle of tubes and wires, was to pray that God would stay close to their precious little girl.

There was never a moment when Dana suddenly grew stronger. But as the weeks went by, she did slowly gain an ounce of weight here and an ounce of strength there. At last, when Dana turned two months old, her parents were able to hold her in their arms for the very first time. And two months later, though doctors continued to gently but grimly warn that her chances of surviving, much less living any kind of normal life were next to zero, Dana went home from the hospital, just as her mother had predicted.

Five years later, when Dana was a petite but feisty young girl with glittering gray eyes and an unquenchable zest for life. She showed no signs whatsoever of any mental or physical impairment. Simply, she was everything a little girl can be and more.

But that happy ending is far from the end of her story. One blistering afternoon in the summer of 1996 near her home in Irving, Texas, Dana was sitting in her mother's lap in the bleachers of a local ball park where her brother Dustin's baseball team was practicing. As always, Dana was chattering nonstop with her mother and several other adults sitting nearby when she suddenly fell silent. Hugging her arms across her chest, little Dana asked, "Do you smell that?"

Smelling the air and detecting the approach of a thunderstorm, Diana replied, "Yes, it smells like rain." Dana closed her eyes and again asked, "Do you smell that?" Once again, her mother replied, "Yes, I think we're about to get wet. It smells like rain."

Still caught in the moment, Dana shook her head, patted her thinshoulders with her small hands and loudly announced, "No, it smells like Him.It smells like God when you lay your head on His chest."

Tears blurred Diana's eyes as Dana happily hopped down to play with the other children. Before the rains came, her daughter's words confirmed what Diana and all the members of the extended Blessing family had known, at least in their hearts, all along. During those long days and nights of her first two months of her life, when her nerves were too sensitive for them to touch her, God was holding Dana on His chest and it is His loving scent that she remembers so well.

GUILD KICK OFF REMINDER

Max met several more members of his "fan club" tonight and he really enjoyed all the attention! :) A group of us gathered together at my house to plan for the upcoming kickoff fundraiser for the Mighty Maxwell Guild benefiting Children's Hospital in Seattle. For those in the area, remember the dates for the 20 Hour Crop are Friday, March 31st and Saturday, April 1st. We promise a super fun time with loads of scrapbooking, delicious food and of course lots of laughter and smiles! Perhaps a visit by the lil' miracle himself! :)

And it's not too late to join the guild! :) Please send your $25 to:

Mighty Maxwell Guild
3204 Illinois Lane
Bellingham, WA 98226

If you have any questions, please call Treasury of Memories at 360-715-3125 or me at 360-527-0744. Thanks everyone!