The winter bug finally caught up to our family and we've spent the entire week in our PJ's doing absolutely nothing productive. We've all had different symptoms of fever, chills, aches, congestion and the only thing we have in common is complete exhaustion. It's nice to lounge around and not always on the go.
Enjoy the new look! I'm off to wrap presents for our Birthday Girl... I can't believe she'll be 10 tomorrow!!
Saturday, January 2, 2010
Thursday, December 31, 2009
Happy New Year!!
2009 in Review...
January
- Kamryn celebrated her 9th Birthday.. sleepover style.
- Owen spent three days in ICU recovering from his 5th Cardiac Catherization and starting his IVIG treatments
- Owen spent another two days in ICU recovering from his first round of Rituxin (chemo) and came home on his 1st Birthday!!
- Owen was doing the treatments, per the UCLA transplant team request, to lower Owen's antibodies so that he could be listed for a Heart Transplant
February
-Owen spent another few days in ICU getting more Rituxin treatments
-Owen celebrated his first Birthday with a Family
-Owen took his first bath ever... he prefers showers.
-Owen spent a few more days in the hospital and this time he endured six IV's over a 36 hour period.
-Owen learned to drink from a cup
March
-Kamryn takes her first AIMS test and loves it!
- We spent lots of time outdoors
- We patiently wait to hear back from UCLA on our next steps with Owen
- Owen shows further signs of heart failure and all the antibody treatments take their toll on his little body
April
-We finally hear back from UCLA and the Cardiology team tells me "We're not sure what to do next with Owen."
- I start researching every transplant center in the nation and spent two weeks finding out that Stanford, Boston and Pittsburg were our best choices for Owen to move forward with transplant
- We schedule a trip to Stanford for May 15th, to meet with their transplant team
- Fox 10 does a special feature story on the Adorable Mister Owen and his broken heart
- Kamryn gets another report card with straight A's!!!
- We celebrated the ONE YEAR Anniversary of Owen's Glenn (his last open heart surgery)
May
-I get 10 cavities filled in one day.... good times.
- We take our trip to Stanford and meet with their transplant team. It's a perfect fit for Owen!
- We come home and start increasing his medications to superhuman doses, a little at a time, to see if we can push transplant off a little longer
- We learn that all of Owen's antibody treatments in Jan and Feb did nothing for him. Poor guy.
- Kamryn finishes 3rd grade.
June
- Carson and I celebrated our 10 year wedding anniversary
- One week later, I turned 30!
- Carson is admitted to the hospital for a staph infection
- My sister gives birth at that same hospital on the same day
- Owen learns the art of butt-scooting and the freedom to move around
July
- Owen has two cardiology appointments where we continue to increase his medications and he pukes ALOT
- Owen has his first Pulmonologist appointment to rule out any lung issues.
- Owen starts talking
August
- Kamryn starts 4th Grade
- Owen continues to get pushed to the limits with his medications
September
- Stanford calls and notifies us that Owen needs to be fully immunized prior to transplant and he hasn't had a single immunization... the catch-up begins
- Kamryn starts Volleyball
- Owen has surgery to place a Gtube, after 20 months with the NG tube
October
-We take a well deserved vacation to Oceanside, the beach, Sea World and The American Girl Place on our way to Stanford
- Owen hasn't gained an ounce in six months, so we stay in Palo Alto for a week
- Owen has his 6th Cardiac Catherization and it turns out better than expected!!!
- Owen is allowed to come home, with the condition that he is closely monitored by Cardiology here, and that he continues to gain weight
November
-We sold our house
- Owen continues on 1300 calories a day and is gaining weight like a champ
- Owen continues to puke like a champ too :(
December
-Carson turns 33!
- We enjoy the holidays as a family
- Kamryn and I make some of our gifts for family and friends for the first time ever
- Owen continues to gain weight and energy!
This year has been wonderful in everyway. We have been so very blessed. We started out the year thinking that Owen would need a transplant right away and he had some rocky times. Here we are today and he is doing great. We are anxious to see what 2010 has in store for our family... a new home, a thriving family, a healthy daughter and hopefully another year with Owen at home! We know that it might be a trying year as well... bring it on! HAPPY NEW YEAR!!
January
- Kamryn celebrated her 9th Birthday.. sleepover style.
- Owen spent three days in ICU recovering from his 5th Cardiac Catherization and starting his IVIG treatments
- Owen spent another two days in ICU recovering from his first round of Rituxin (chemo) and came home on his 1st Birthday!!
- Owen was doing the treatments, per the UCLA transplant team request, to lower Owen's antibodies so that he could be listed for a Heart Transplant
February
-Owen spent another few days in ICU getting more Rituxin treatments
-Owen celebrated his first Birthday with a Family
-Owen took his first bath ever... he prefers showers.
-Owen spent a few more days in the hospital and this time he endured six IV's over a 36 hour period.
-Owen learned to drink from a cup
March
-Kamryn takes her first AIMS test and loves it!
- We spent lots of time outdoors
- We patiently wait to hear back from UCLA on our next steps with Owen
- Owen shows further signs of heart failure and all the antibody treatments take their toll on his little body
April
-We finally hear back from UCLA and the Cardiology team tells me "We're not sure what to do next with Owen."
- I start researching every transplant center in the nation and spent two weeks finding out that Stanford, Boston and Pittsburg were our best choices for Owen to move forward with transplant
- We schedule a trip to Stanford for May 15th, to meet with their transplant team
- Fox 10 does a special feature story on the Adorable Mister Owen and his broken heart
- Kamryn gets another report card with straight A's!!!
- We celebrated the ONE YEAR Anniversary of Owen's Glenn (his last open heart surgery)
May
-I get 10 cavities filled in one day.... good times.
- We take our trip to Stanford and meet with their transplant team. It's a perfect fit for Owen!
- We come home and start increasing his medications to superhuman doses, a little at a time, to see if we can push transplant off a little longer
- We learn that all of Owen's antibody treatments in Jan and Feb did nothing for him. Poor guy.
- Kamryn finishes 3rd grade.
June
- Carson and I celebrated our 10 year wedding anniversary
- One week later, I turned 30!
- Carson is admitted to the hospital for a staph infection
- My sister gives birth at that same hospital on the same day
- Owen learns the art of butt-scooting and the freedom to move around
July
- Owen has two cardiology appointments where we continue to increase his medications and he pukes ALOT
- Owen has his first Pulmonologist appointment to rule out any lung issues.
- Owen starts talking
August
- Kamryn starts 4th Grade
- Owen continues to get pushed to the limits with his medications
September
- Stanford calls and notifies us that Owen needs to be fully immunized prior to transplant and he hasn't had a single immunization... the catch-up begins
- Kamryn starts Volleyball
- Owen has surgery to place a Gtube, after 20 months with the NG tube
October
-We take a well deserved vacation to Oceanside, the beach, Sea World and The American Girl Place on our way to Stanford
- Owen hasn't gained an ounce in six months, so we stay in Palo Alto for a week
- Owen has his 6th Cardiac Catherization and it turns out better than expected!!!
- Owen is allowed to come home, with the condition that he is closely monitored by Cardiology here, and that he continues to gain weight
November
-We sold our house
- Owen continues on 1300 calories a day and is gaining weight like a champ
- Owen continues to puke like a champ too :(
December
-Carson turns 33!
- We enjoy the holidays as a family
- Kamryn and I make some of our gifts for family and friends for the first time ever
- Owen continues to gain weight and energy!
This year has been wonderful in everyway. We have been so very blessed. We started out the year thinking that Owen would need a transplant right away and he had some rocky times. Here we are today and he is doing great. We are anxious to see what 2010 has in store for our family... a new home, a thriving family, a healthy daughter and hopefully another year with Owen at home! We know that it might be a trying year as well... bring it on! HAPPY NEW YEAR!!
Wednesday, December 30, 2009
23 Months on the 28th
I can't believe that this little guy will be celebrating his 2nd Birthday next month! He is changing everyday from a baby to a toddler. I haven't weighed him in a week, but he was up to 26.6lbs last week. Naps are far and few between, but thankfully he'll sleep from 8pm-6am, most days. Owen's speech has taken off and he always has new things to say and makes up sign language for things he can't find the words for. Our favorites are...- Hands up to his ear and he says "HeeeeRRRRoooo" when he wants to talk on the phone.
- Hugs himself with his arms across his chest when he wants to be held.
- Puts his hands up to his lips when he wants food and usually asks for "Cheesssseee?"
- Loves to pretend to put deodorant on his armpits, curl his eyelashes and put on chapstick... such a copycat!
The list goes on and on, but these are the favorites of the month! Owen is eating like a champ... but still can't get a good quantity of food down. He loves to stuff his cheeks with any food and then he chews on it for a while, sometimes all night, until we scoop it out of his cheeks. He's got his drinking skills down perfectly and loves to blow bubbles in his milk. He still gets 100% of his feeds through his Gtube so that we can continue to keep his nutrition up. All the other foods he eats are extra calories.
Owen is still not walking, but seriously could win for Olympic Speed in butt-scooting! He is starting to pull up on furniture and he'll walk if we hold both his hands. We got his fancy Gait Trainer (walker with support) from the Healthcare company, and it was way too big for him. So we had to do an exchange and are still waiting on it. We only ordered it in September, so why would we have it any sooner than January, sigh. I don't know what I'll do when he starts walking... oxygen tanks and feeding pumps alone are going to be a chore. Also, the demands on his heart when he walks will be more. We continue to work with PT every week, we encourage him to walk throughout the day and he's getting stronger. We can't ask for anything more.
Cardiacwise (is that a word?)... Owen is doing pretty well. No puffiness, no desaturations, he's showing decent energy levels and he's gaining weight! We have an echo scheduled the end of January and I'm anxious to see what his ticker is up to. It looks like, thus far, we have found his perfect cocktail of 7 medications.
The only downside of things is tat Owen still has the pukes multiple times a day and it's NO fun. He's on a pretty hefty dose of Prevacid and it seems to be helping a little, but he still pukes multiple times a day. Not little spit-ups, but his entire feed (4oz or so) comes flooding out. It's not phasing him too much, and he goes about his business afterwards, but it makes me so sad for him every time. We go to GI in a few weeks and if they don't have any ideas, I'm switching GI docs.
Happy 23rd Month Birthday little guy!! You continue to amaze us everyday!
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