Christmas came early...

Holden had a doctor appointment on Monday and we were thrilled to hear that she thinks Holden is ready to come off the oxygen...completely! (He was still sleeping with it at night). So Monday night was the first night ever, that Monkey slept without any tubes attached to him! What a blessing...the best Christmas present we could have asked for!!

The doctor also took him off his steroid inhaler, as they think that, along with the nasal cannula have been aggravating the sores on his face and may be preventing them from healing.

We will obviously be watching him closely, but I have no doubt that he's ready...as the little stinker had been taking the cannula off in the middle of the night anyway!




Last month, we decided to stop his night time feeds using the feeding pump. Although his GI Doctor did not agree with the strategy, it was one of the smartest decisions I ever made...as now Holden wakes up hungry. His appetite has grown tremendously and he suddenly has an interest in food! He has continued to slowly put on weight and is definitely getting taller. So assuming all continues to go well with his growth, we will hopefully, soon, get rid of his G-Tube forever! Yet another prayer answered!!

We are in the process of moving into our new home in Grayson. It is a great house in a very family friendly subdivision...with lots of kids around Holden's age. Although as everyone knows, moving itself is not much fun, it has been an exciting time for all of us. It has been especially fun to watch Holden as he embraces this new phase of our life. He immediately took to his new surroundings...becoming very adventurous...exploring every room and claiming which ones were his. He is also acting more independent...wanting to explore and play some on his own.

We have not yet sold our old house, so this move is certainly risky. But I pray that in the long run we made the right decision!

I had a moment while driving to preschool the other day where I was very aware of everything around me. The crisp (freezing) morning air, my calm breathing and Holden riding in his car seat singing "Jingle Bells". Tears streamed down my face as I thought about how far Holden (and we) have come! Sure life still throws us some curve balls here and there, but I know how truly blessed we are! And I am very grateful for the love and support we continue to have from our friends and family.

We wish each and every one of you a Merry Christmas and a Happy New Year!

When it rains it pours...

It has been quite awhile since I've blogged. We've had so much going on...some good and some challenging.

Holden had a blast this Halloween. He has been talking about what he wanted to be for weeks. He finally settled on Pablo from The Backyardigans (little blue penguin) and he's been wearing his costume whenever and where ever we'd let him. He began his Halloween celebration on Friday morning with playgroup. He had a party with Mommy and Daddy Friday evening as we carved our pumpkin..then continued Saturday night at a neighborhood party and ended it last night with some trick or treating...and several pieces of candy before bed! He woke up Monday morning talking about this adventures these past couple of days.

The past 6 weeks have flown by. We've had 3 small trips. We went to visit Granma Deda in NC. Then the following week we headed south to Tifton to visit some of my family...and give Holden a chance to play with his 2nd cousins (who he adores!). Then we rented a lake house at Lake Lanier with one of my dear friends and her 1 1/2 year old son. Holden quickly found himself a new friend!

Shortly after all our travels, Monkey caught RSV and got pretty sick. In most cases, he would have been admitted to the hospital, but doctors felt comfortable with us treating him at home based on his history and to reduce the chance of him being exposed to something else. It was a rough week, but we made it through.

As you can see, Holden still has the sores on his face. It has been frustrating and doctors are really not sure what exactly is going on. He's now had two biopsies done. After 7 weeks, nothing grew in the lab from the 1st one. We're still waiting on results from the 2nd. We went to see an infectious disease doctor who has a couple of suspicions...but sent us to a 3rd dermatologist for another opinion. The 3rd dermatologist thinks it may be cystic acne brought on by prolonged use of steroids. At this point, that is what he's being treat for. The doctor prescribed an antibiotic and 2 topical creams. I pray this doctor is right and that we'll soon see improvement...as Holden is now making comments about his boo-boos. At night when we pray, he asks God for his "boo-boos to go bye-bye". It just breaks my heart!

We've also been in the process of buying a new home...with plans of moving in late November. We're excited, but we've been so busy, I don't think it has really hit us yet. Reece has already been playing tennis in the subdivision so we're starting to make friends. And best of all, there are a ton of kids...lots Holden's age. He's been playing with some of them on Saturday mornings while Daddy is playing tennis.

Holden's little personality is really blossoming. I honestly don't think he knows a stranger. He makes friends everywhere we go. It is fun to watch him take on some of the cranky people we encounter...at the hospital and at the stores we shop in. Holden is one persistent little guy and keeps at them until he gets a smile or response. I am so proud when I see him light up a room. He has learned to make the most out of any situation and that we can have fun just about anywhere! Even when things get crazy around here, I can count on Holden to keep me focused on what is truly important...family, love and God! So while it may be pouring, I have to remember that rain isn't all bad...and look forward to the flowers that bloom after the storm!

Bitter vs. Better

I love Church signs. Sometimes they make me laugh out loud...sometimes they inspire me and often they make me think. I read them aloud to Holden and his standard response is "yeah yeah"...said in a very cute and agreeable way! Yesterday, I saw a sign that said "challenges can make us bitter or better." So true. I think about how much we've been through since Holden was born. It would have been easy to become bitter and let the challenges consume me. Don't get me wrong, I did have my moments...probably even "my days"...but all-in-all, I'd like to think that I've become a better person.

Our latest challenge, which I have to remind myself pales in comparison to everything else Holden has faced, is sores on Monkey's face. He's had them for over 3 months now. They showed up after doing yard work with Daddy. We've been to see 2 dermatologists. Holden's had over 12 shots of cortizone in his face. And he was on antibiotics for more than 4 weeks. Yet, despite all we've done, Monkey is walking around looking like a boxer who lost his last fight. Finally, we decided to have a biopsy done. After waiting nearly a week, we got partial results that ruled out most of the big or incurable things (cancer being one of them). But now 2 weeks later, still nothing has grown in the lab. So doctors can't yet prescribe anything to treat his sores. All doctors know is that Holden has some kind of infection. The good news is that as soon as they know what it is...it will be treatable. I didn't realize how stressed out I was about all this until I read that Church sign. It was almost as if someone was sending me a reminder message...I can't let this situation get to me or bring me down. I need to have faith that the sores on Holden's face will heal and everything will be okay. And maybe someday I'll look back on it and find some way it made me, or Holden stronger.

Other than is "boo boos", Holden has been doing great. He just started his 3rd week of preschool. It is only a total of 6 hours a week, but he likes it and it is giving me a little time to clean the house, work out or catch up on my own doctor/dentist appointments.

Holden is talking up a storm. He learns new words every day and the two of us can now have conversations...which I think is very cool. With his new found "voice" comes a way to verbalize his strong opinion...."no Mommy. no that shirt. Mickey shirt." He now wants to pick out which shoes he is going to wear...even when they don't really match. "No nap Mommy. I play!" He continues to make me laugh every day. Through all our challenges, I can count on Holden to help me keep things in perspective!

We're Home!

Another long day...but Holden is doing great and we're home! Holden had a much better day today. And although he still has moments of being in pain, it is alot less than yesterday and the pain medication has helped tremendously. He was so happy to be home and immediately wanted to play with his toys. It is going to feel great to sleep in our beds tonight.

My Brave Kid!

So it is nearly 10pm and things have finally settled down long enough for me to post an update. Doctors were not able to give Holden a shot with pain medication following the surgery, so they recommended keeping him overnight so they could administer a stronger pain med via IV. As much as I would have liked to take him home, I think it was probably the right decision.

As excited as Holden was to see Mommy and Daddy...and Mommy and Daddy were to see Holden, it broke my heart to see how much discomfort/pain he was in. He just wanted to curl up in my lap and sleep. And when he did wake up, he would cry. Saying "Daddy, Mommy home. Holden's house". But as the day progressed and anaesthesia wore off, he seemed a little more comfortable. By this evening he was walking again on his own and we even took a little trip down to the gift shop to buy a toy for my brave kid...and a tooth brush and tooth paste for Mommy! He picked out a mail truck. He loves anything with wheels. And when we got back to the room we were racing the mail truck, the school bus (with big mudder tires) and Lightning McQueen. Assuming all continues to go well, he should be discharged in the morning! YEAH!!

It has been bitter sweet being back here....at Egleston, one of the hospitals that Holden has spent so much time in. I find myself thinking back to the 10+ weeks we spent here in Fall of 2008. I don't know how to explain this, but I love and hate this place. As much as I dread Holden having to be here, if any child needs medical attention, this is one of the best places to be. So my heart breaks watching him endure the pain, but there is a sense of comfort for me...knowing he is getting some of the best care. And so many of the nurses remember us and have come by to visit.

Reece commented that he was surprised, knowing me, that I had not packed an overnight bag...:"just in case." Sounded logical, but I intentionally did not pack a bag. I guess I prefer to live for the best and be flexible if things don't go as I hoped. I prefer to visualize the positive. So it means I'm sleeping in jeans tonight, but I can't complain. Ultimately, staying positive is what helps me make it through each day...especially ones like today.

I just glanced over at Monkey. He is sleeping and looks so precious. I'm so proud of my little guy. Seriously...when I stop and think about it...he's already been through more than some people have to deal with in a lifetime. But spend some time with him now...and you'd never know it. He loves life! And he has learned to make the most of every day!

Success...

Reece and I just met with the surgeons and they said Holden's procedures were a success. He did great. They are in the process of extubating him, so we have not yet been able to see him. Hard to sit here in the waiting room, when we want nothing more than to be with our little guy. But we're thrilled to know things went well, and we'll soon be able to hug on Monkey. If all continues to go well the next couple of hours (in recovery), then we should be able to take him home tonight. We'll post again soon. Thanks for all the prayers and positive energy you sent our way!