Chunk-a-Monk on a Diet??

I can't believe how long it has been since I've blogged. And no, Holden is not really on a diet, but the little Monkey did have his daily calories reduced. He jumped from the 7th percentile in weight before the holidays to the 20 something percentile as of this week. And while all of his doctors are happy that he is growing, they want it to be at a slower pace - keeping a curve on the growth chart instead of a spike.

We've also made some changes to his feedings and he is making great progress. Without getting into all the details, I can tell you he's on the feeding pump less now during the day and has been consistently drinking at least one full bottle each day. Progress with solid foods have been a slower, but he's at least open to trying different foods. Now were trying to establish hunger so he will be inclined to each more. I never imagined we'd have to work so hard to get him to "want" to eat. But fortunately he's slowly going in the right direction. And with lots of support and patience, he'll get to the point when he'll no longer need the G-Tube/Feeding pump!

I love this picture with Holden putting the bottom of his bottle in his mouth. He's teething again and everything goes in the mouth. Tooth 7 just cut and I think 8 is on the way. He seems to get them in, in pairs. Unfortunately Holden is one of those kids who does not do well with teething, so we've had some sleepless nights and long (cranky) days. But he slept great last night, so I am hoping the worst is behind us for tooth 7 and 8!! Only 12 more to go, right!!??

It has been exciting to see him make more progress with his mobility. He's rolling all of the place and still doing the military crawl. I think as he gets stronger, the crawling and walking will happen quickly, because he definitely wants to be on the move.

I've noticed that as Holden's gotten stronger, he likes staying active and playing a lot more! Some days we go through nearly every toy in the toy box. His favorite still seems to be his trucks, however, lately he is also fascinated with Mommy's laptop. I've been pulling up some kid friendly sites and trying to teach him words, letters, etc. But mostly, he just like mashing the keys!! And with the warmer weather, we've been loving spending time outside. We've been taking walks (well Alex and I walk, Holden rides in his little red car!) and sitting in the grass blowing bubbles.
Last weekend took Holden to the Circus. The White family joined us with their adorable son Campbell who is 2 years old. Holden did great the 1st hour, but then started to get fussy and sleepy during the second half.

I was impressed at how attentive he was to the performances. His face lit up when the dog act came out. He was able to focus on the performers - even the acrobats flying through the air. Reece and I probably spent more time watching him than the show. It was so great!!


I used to think Holden looked so much like Reece. This week (I say that because he does seem to change every week), I think he looks like a blend between the two of us. He has Daddy's eyes, eyebrows, nose and chin (and same cheeks as Reece had as a baby). But he has my curly hair, lips and ears.

He plays with his toys like an engineer (like Reece used to), trying to figure out how it works and turning everything upside down and inside out.

He is stubborn like his Mommy and very persistent. And as we well know, he's a little fighter. Definitely a trait both Mommy and Daddy have!!

I just dug out some baby pictures of Reece and I. I'll scan them in for my next blog, so y'all can decide for yourself who he looks like.

In the meantime, we'll be enjoying the outdoors as much as possible. And as cold and flu season wraps up within the next month, we'll be able to be out and about much more. Look out world here we come!

Snow Day for Holden

Look Mommy, the sky is falling!!

Holden saw snow for the first time today. We mostly watched it from the warmth of our house, but eventually, we got bundled up and headed outside. He was fascinated by the fluffy wet stuff that kept landing on his face. He would turn and look at me, smile and then look back up at the sky.

He touched the snow and didn't seem at all phased by how cold and wet it was.

It has been so great to see what an easygoing baby Holden is when he's feeling well. It amazes me how well he deals with new experiences. He loves getting out - anyplace other than the doctors office or hospital. This week we went for a walk at Stone Mountain Park. We must have walked 3-4 miles (well he rode in his little car) and he did great! Other than the same 2 teeth that seem to be taking their time cutting, Holden continues to do well.

He has become so active and loves to play with his toys, read books and ride in his little red car. It has been great to see him feeling so well. I pray this becomes the norm and the icky days are few and far between.

"I'm a Big Boy Now"

I've been amazed at how much Holden is suddenly showing an interest in doing things. Someone must have told him that it was okay to coast (okay, he really wasn't coasting. He was spending lots of time in the hospital and trying to get strong) until he turned one years old. So suddenly, he wants to crawl, roll, sit up, etc. It was not that he was not doing any of these things before, it was just not daily. He would do them when he had the energy. But even then, he did not seem to want to. Now, all of the sudden, he "wants" to do everything and has more energy. Holden is amazed by Grandpa. In this photo, he is trying to get Grandpa's glasses!

Holden is now rolling all around to get where he wants to go. And although he is not full out crawling, he is pulling himself up and kind of doing the commando crawl. I've noticed that he does more when I leave the room. So now I peek around the corner. That's how I got this photo.

Holden has also been taking more bottles ever since his Cath last month. Starting this week, we'll be focusing more on bottles and solids and trying to cut down the amount of hours each day that he is fed by the feeding pump.

Several of you have asked why Holden seems to always have a pacifier and stuffed animal in his face. It is called a Wubba Nub (or as we call it, the Wubby) and is actually a stuffed animal attached to the pacifier. What a great invention!! It was a great tool for keeping Holden interested in having something in his mouth, all these months that he was being fed exclusively by the feeding pump. It also taught him to hold things and kept Mommy from having to get up every hour when the pacifier would fall out of his mouth. With the Wubby, he can easily find it on his own. I suspect there will come a day when we won't think the Wubby was such a good idea, but we'll cross that bridge when we come to it.

Just to show you that the Wubby is not really permanently attached to his face, I've attached a photo below with Holden flashing Mommy one of his charming "melt my heart" smiles.

Holden's 1st Birthday & Valentine's Day

February 14, 2009

Dearest Holden,

Happy 1st Birthday Monkey! It has been an incredible first year for you - filled with challenges, excitement, but most importantly...love. And despite all the obstacles you faced, here you are celebrating your first birthday! I don't think there are words to fully express how proud I am of you for persevering and fighting your way through your health problems. I would do anything to take away the pain you've had to endure.

Never did I imagine how much I would learn from you. You've taught me to appreciate today and look "forward" to tomorrow. You've reminded me not to sweat the small stuff and that it's the simple things in life that truly matter. But most importantly you've made me realize how deeply we are capable of loving one another - unconditionally. I know I've changed so much in the past year. And I like to think I'm a much better person because of you!

Someone recently told me that babies choose their parents. I don't pretend to know how that works. Whether it was God -or you -or if the two of you decided together, it doesn't matter. I just know that we are so blessed to have you as our son. And as we look forward to the future - I can't wait to teach you everything I can and introduce you to the exciting world that awaits you!

We will continue to pray every day for our miracle, asking God to heal your body. Yet, as a very wise woman pointed out, you are already a living miracle. So as we celebrate your birthday, just know we are not only celebrating your birth, and your first year - we are celebrating the lifetime of memories we will enjoy together. I love you, Monkey. Always and forever.

Love,

Mommy

More Teeth for the Little Monkey

Mommy has been teaching Holden the "Happy Birthday" song this week, trying to prepare him for Saturday. I've been trying to explain why birthdays are so special - especially this one (for him). He just grins real big and looks at me as if he really understands what I am saying. Our little Birthday Valentine!!

Although Holden is doing okay, this week has been challenging. He's having another episode of retaining fluid. He is also cutting at another tooth (upper incisor, and possibly another). His pulmonologist wants to wait it out to see if his body can resolve it on its own - rather than just giving him an extra dose of diuretic. The doctor thinks it is possible that the teething is causing or contributing to the retention of fluid. So the Little Monkey has been cranky and not sleeping well. In the meantime, we are just watching him closely and hoping he starts to feel better soon. Looks like babies get 20 teeth. So we only have 14 more to go!! WOW!

Chunk-a-Monk

Holden has had a good week. He seems stronger than he's been in a long time - maybe ever. The Little Monkey (now also called Chunk-a-Monk now weighs 19 lbs. 10oz. He had an appointment today with his pulmonologist and she was very happy with how he's doing and she said his lungs sound clear. So the plan, for now, is to keep things as they are. We may make some adjustments (reductions) to his medications if he continues to do so well. We have an appointment with his GI Specialist later this month. We're looking forward to hopefully making some changes to his feeding, so he can drink more bottles. He's been doing great with what we offer him, so I think he will adjust well to incorporating more bottles into the day.


We are slowly but surely getting a chance to introduce Holden to our friends and extended family. I can't tell you how good it feels
for those in our life to be able to get to know and see us as a family. Our friends Paul and Collin met the Little Monkey a couple of weeks ago and then Brian and Jennifer (photo) got a chance to meet him (while in teething mode) this past weekend. Fortunately as cold and flu season winds down, we'll be able to do more socializing. I can't wait until he can have his first official play date with other babies his age! And although Holden's birthday is February 14, we are working on plans for a big birthday bash out at Stone Mountain Park this April.

Holden and I met Miss Doris this week. She is a friend of our neighbor, Miss Carol. Although Doris had never met Holden, she heard about him through Carol at church and has been praying for him since he was born. After meeting her, it really hit me that there are probably several "Doris's" out there whom we never met, yet they pray for my precious son. To all of you, I want to say thank you. Nearly a full year later, you've keep him on your prayer lists and take time out of your busy day to check on how he is doing. I feel that by allowing myself to be "public" and vulnerable with our struggles it has enabled us to be blessed with with this powerful support circle of prayers and positive thoughts. And every morning when I look into Holden's eyes, I know our prayers are being answered.

The one thing Holden and I do have is alot of time. Please be sure to let us know if you have things in your life that you'd like us to pray for, for you. We'd be happy to add you to our prayer list. Thank you all and God Bless!