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!!!