I promise we are still alive!!

I have no excuse! I am a sorry, sorry blogger. EEK. I keep thinkin, "okay, tomorrow I will have time to sit down and blog." Then, life happens! And, I cannot lie, if it's a choice between blogging and watching LOST or Grey's Anatomy (...or americas next top model shhhh) I am going to pick my shows! Can somebody tell me when motherhood starts smoothing out?? I know, all my clients say to hang on because nothing's changing anytime soon.

It's kind of bedtime for me, so here's the stats quickly! Max didn't end up needing the Cranial Band, because our insurance ran us around so long, that by the time they re-evaluated him for a fitting, they said he was improving enough to skip it. Hooray!

Max weighs 16 pounds, and is 29 inches long. That puts him around the 3rd % for weight and 70% for height. He's tall and skinny, but our GI doc says that his weight gain is "okay". He "should" weigh 20 pounds for his height, but Max is his own boy!

He is delayed ZERO developmentally and socially at this point!! Another HOORAY! He is crawling like a maniac, saying DA DA DA for every occasion, grew two teeth, sleeping like a champ...and he grew 3 inches last month alone. Our last physical therapy evaluation gave us a shining A+.

His feeding issues are large and in charge, however! We do therapy every week with an AMAZING therapist, and Max and I work together every day. He has such a severe oral aversion that the bottle is a nonexistent tool...we are 100% feeding tube. He gags if you even put the bottle near is face! We are trying to move into a sippy cup, and working towards baby food also. He doesn't mind playing in his food ( which some kids hate to even touch it with these troubles), but dont try to make him eat it. SO we work and wait! :) The best advice I've gotten is that we are on Max's timeline, not ours; and that the feeding tube is our FRIEND (not an enemy to be in a rush to discontinue).

All together, he's just perfect. Max pulled himself to standing today actually for the first time! :)

My only complaint is that he isn't scared of strangers, and if Jordan is in the room I am CHOPPED LIVER. Daddy is so dang cool...darn him.

Okay, I'll be more creative and exciting next time, but all my friends and clients are shaming me for my slackery ways. I had to throw something up. Here's a picture of this morning, when he was suddenly up on his own! ( like always I apoligize for my loser blackberry camera moments.)
I thought you might like to see what a g-tube looks like if you've never seen one. I describe it like the plastic "nipple" on a beach ball; a little part sticks up with a flap to close it. The feeding tube attached to that!

My super sweet little boy. Max! Getting a little chubby, and looking more like a little BOY than a baby, if you ask me...that's what Jordan said tonight and I agree.

TTYL!
Claire

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Family Pics

Well, I don't have the full "show" yet, but Misty just posted a preview of our pictures on her blog. Check them out...I'm loving them!! I can't wait to see the full gallery- Misty is a magician.

www.mistymichellephotography.com

Thanks Misty, you're so gifted.

-Claire

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I'm six months OLD!

Wow! How fast this part of life has gone. Jordan and I feel OLD, haha! I just thought I'd acknowledge the milestone. This funny picture is from this morning. I was just paying some bills online while Max played next to me on the floor. He is so very aware of everything right now, especially if the focus is not on him! He never actually has "fits", but he was grunting and yelling until I picked him to check out the laptop. He starting feeling all of the keys and staring at the screen. I don't know if he was copying what he saw, but he definitely wanted in on the action.

Max and I went to the pediatrician yesterday, and did some SHOTS to celebrate his six months!! Hehe, well we did do shots...six to be exact...but not the kind that make you feel good and do regrettable things. (kidddiinnggg...). Unfortunately Max celebrated by getting his vaccinations updated. Then he proceeded to sleep the day away in recovery.

Max weighs 13 pounds, 5 ounces, and is 27" long! That puts him in the FIRST percentile for weight, and the 65th for height. Yay Max! Good job getting on the growth chart!

We are starting an overnight pump for Max's food, to see if cutting down on his daytime eating will increase his desire to eat. I'm not sure how the pump will work, with the way that he rolls all over his crib at night. But, I am willing to try anything to help him out!

Misty, photographer extraordinaire, took our first family pics today, so I will put those up soon. You should peruse her site....www.mistymichellephotography.com....its an addictive blog watching her newest photographic adventures.

Happy 6 mos Maxi pants...you are a true miracle, a gift from God, my greatest joy.

Love,
Claire

*Here's Max after a bath in his "King of the Wild Things" Towel...cute huh. :)

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Mug Shots for Max

We knew that Max would probably give us a run for our money as a teen, being that Mom and Dad got into every kind of trouble there is (MOSTLY on Dad's side, ehem...) in the past, but now we have official mug shots...at six months old!!
Yeah yeah, just kidding! I went to the Cranial Technologies office today, to have a consultation about Max's plagiocephaly, also known as lumpy head! :) Is he the cutest or what?! Look at those lips. Anyways, the doc said that he's not severe (yet), and a great candidate for the Cranial Restructuring Band. Here's a pic I found on google of what they look like:
See? This little one looks so happy, why not join in? I don't want Max to miss out on any rare life experiences, so this is just one more off our bucket list. Just teasin... Max will get his helmet/hat/band/whatever in about 3 weeks, and he'll wear it for about 4 months. I'm not thrilled, only because I don't want it to be a hindrance to him at all. However, it will only benefit him, and I want my baby to have every last opportunity available to him. So, who cares, bring it on! I think we are going to decorate Max's to look like a football helmet!

On a different note! Since we have been super stretch-happy on Max's neck (after some education from the physical therapist), he has become the rolling over NINJA! I finally have seen him do it many times, but for about a week, every time I would look away and come back Max was on his tummy! So, clearly it is working! I'm really happy about it, because getting to that 6 months mark had me beginning to wonder about his delay in development.
Max is also a crazy laughing machine!! I just LOVE doing anything foolish, over and over, to hear that goofy deep laugh. I still need Jordan to teach me how to shrink video so I can upload it...then ya'll will REALLY see this silly boy.

We are doing great! Not too much else to tell for now, just the helmet fitting, and tons of physical growth, yay! I got to talk to my pal Lauren today, who's baby was in FL with me recovering from CDH as well. Jude is doing fantastic, and so is she! I miss my friend...going through everything with her was something that I can't compare to any other experience I've had with a friend, and we were just strangers! wow. I can't wait for September to roll around for our one year check up with Dr. Kays so that we can see Lauren, Jude, (and Aiden and Dereck!) and all the Shands staff again.

Goooood night!!
Claire

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Well it's only been 10 weeks since I blogged last...

Sorry sorry sorry! I know. I'm a loser since coming home...my blogging is depraved. I am going to attempt to buy your love with a ridiculous amount of pictures of Max!! Lemme know how it works for you!
So, Max is one happy child. He is just a few days shy of 25 weeks! I am really going to try to commit to blogging more often again, more like every week or every other...because now that I AM, I realize there is just TOO MUCH to type. I'm pretty sure it'd be fairly mundane news, but the daily increases in Max's drool production are something you all should really be up to speed on. Here's his tiny head next to my big one!
So...since we blogged last, maybe you noticed...no OXYGEN! yippee!! He was set free from his O2 the week before Christmas, and what a relief. I had a good cry over it (happy cry), because it was just such a physical reminder of what he went through. It also allowed me to get him busy with the tummy time, which is SO important for a baby's muscle development. He kept stroking his face the day that I took the tape off, like "where's that other part of my face??". I wonder what he felt like, never having his face all clear before. It was also a major relief for the sake of his skin!
Max. LOVES. Jordan. I can't punctuate that enough. I am chopped liver if Jordan is in the room. Jordan doesn't even have to entertain him...they just nap together (like above) and cuddle! Haha! I have to take a moment to give Jordan his due credit...whadda man whadda man whadda mighty good man!! He has Max all on his own two nights a week and Saturdays when I'm working in my salon, and he's a pro! There something really sweet about watching a dad and his son...love my boys!
Other than getting his oxygen off, Max's other hurdles have been allergies and weight gain. He was on a special formula for his liver and fat malabsorption issues called Pregestimil, and now he's on Elecare, which is the most broken down form of proteins that is on the market. It's also hypoallergenic, and what a difference that made. Max finally started gaining and holding weight after Elecare, and his skin has improved by miles. He WAS cracking and bleeding in his elbow and knee "pits", and they're perfect now. He skill has some sever eczema on his arms, so we have a dermatologist appt next week to see what else I can do (and i've done it ALL...I am going to start a black market ring of baby products with the inventory i have.)

So, the weight gain and allergies are under control...at 5 1/2 months Max weighs 12.5 pounds, and is 25 inches long! He is in the 2nd percentile for weight...and around the 50th for height.

Our next hurdle came today. Jordan and I(and our pediatrician of course) have been trying to stretch Max's neck, because it is obviously tight. I took him to a physical therapy evaluation today....uh oh...
So Max has "scattered delay" in his development due to his hospital stay. Let me just clarify up front that it is all stuff he will grow and work his way out of...with work. He has a torticollis, which causes his head to pull to the side and he favors looking to one side. Because of this, his head is becoming lopsided. SO, he's going to have to wear a cranial remodeling band. Maybe you've seen little kids with those open helmet looking hats? It's like that. BUMMER.

I was sort of horrified when the therapist told me, NOT for Max, because he's stinkin cute even in a poopy diaper. And it will only be for about three months. I felt badly because I REALLY work HARD to rotate and move him all the time. The therapist reassured me that the torticollis can cause it, and when Max sleeps he favors that one side of his head. So by doing the therapy and wearing the band, he should be all better.

But, really...can I catch a BREAK??? Ugh oh well...I am quickly reminded that I have my little bug with me at ALL when I feel stupid and whiny like this. Thanks, God.

Actually if you look at this picture above, you can see how he's looking to his right with his head cocked over a bit...that's how he likes to stay. But not for long, kid!
Here's a few more adorable pictures to make up for lost time, friends!
Max really thinks sitting in his BUMBO chair is too cool. He just grins when you step away from his and he realizes that he's sitting "on his own". :D

Well, I've covered where Max is at health-wise...off O2, gaining weight...goofy head but we're working on it. He is truly a blessing, ya'll. Max has THE HAPPIEST disposition of any baby I've ever met...mommy-ness aside. My mother in law and mom both keep commenting on how sweet he is. He has LITERALLY never had a crying fit, and he can lay down wide awake at bedtime and put himself to sleep (thanks 7 weeks in a hospital I guess?)

Jordan and I had a really tough time when we can home from Florida, and I got hit really really hard with much delayed post partum depression. "Our end" of coming home from Florida is a whole other story, but that's just too much of a downer to blog about! :) The good news is that we are ALL doing much better and thriving now...adjusting was just really hard. I had quite the series of anxiety attacks about Max in any and every public situation! haha. Well, haha now, not at the time!! ;) All's well that ends well.

I will truly try to be better about updating...thank you for caring and asking for updates. You are such loving people. Max is wonderful, and I thank you for your prayers for that reason!!
Talk to you soon....
Claire

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