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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14 Weeks Old Today!

Happy 14 weeks to my son! It really blows my mind how far we have come through all of this, and we still feel so amazingly blessed to be here with Max. I have decided this weekend that Max absolutely LOVES Aunt Jaime. Every single time he would look at her, he would give this HUGE grin. See example below:


I kind of wish that we had more to report to you, but things have been pretty uneventful! We really consider this to be a good thing because we have had enough baby drama for a lifetime!

As far as development, Max is doing REALLY well. He is looking for voices, reaching for things, coloring, simple math, and basically being the coolest kid on the block. Being a dad is really the most awesome thing in the entire world. Life has totally changed from what I once knew, but it is all for the best. I couldn't be happier and more blessed. I look forward to my "Daddy Time" everyday when I come home and love our Saturdays together while Claire is at work.

Here is Max at bath time:

And getting ready to go to Grandmas:

As you can see, he is just a smiley ball of love. His is about 10lbs 6oz right now so he is still a little small, but he is catching up quickly to where he needs to be. That is all for now!

Jordan Griffin

PS: If you are a nurse at Shands and are reading this, can you comment and leave an address or way for us to send you all something and also a way to contact Dr. Kays if possible! Thanks so much! We miss you guys, but are glad we are not hanging out everyday anymore! ;) Go Gators!

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Still just chillin'!

Hey all! I'm sorry, again, that we are SO bad about keeping up. We've been home for a month now, and I am JUUUST starting to feel normal. I think I sort of expected to "squeeze" Max into my world, but as all you parents know...yeah right! I realized that I am squeezing MY life into his. :) But I love it. Man mornings don't really get going until around 10-11am, because Max is such a cuddly and sweet kid. I thought I would post a couple happy pics that I just love.
This is Max in the morning...I will prop him up in the corner of the couch, and he just thinks it is SO cool to be sitting up on his own. We have a smiling party every morning. He gives a good strong, "ha", but no real giggles yet. I can't WAIT for that!
Here he is in his little sling chair thingy while I clean up our room. Just an easy kid.
This is kinda funny to me, because Max really isn't sure he likes baths yet. He screamed his way through them in the hospital, and now he doesn't yell, but just sort of stares at me. You can see his G-tube button there, and his scar right above that from his repair and later the Nissen surgery (went through the same spot). He still has a sort of bulging tummy and NO waist at the hips...a side effect of reorganizing all of his organs! It has already smoothed out some, and when he bears down he no longer has huge lumps that look like hernias pushing out! I think that's because his side muscles are buffing up from lots of play time.

Max is twelve weeks old as of this past Monday, and he'll be three months on the 10th! :) He is almost to ten pounds, which is still only in the 5th percentile, but we feel like he's looking "chubby"! I guess it's all relative. Max is also quickly catching up motor skills-wise. I felt like he was pretty stiff, favored his right side mostly, and was a little "out of it" with his surroundings. He is now SO into faces, reaches up to things, is having funny spazzy muscle control issues as he tries to get things, etc. The home environment has of course been good medicine for him, and he seems to be thriving. I'd say he's probably still a few weeks behind normal, but heck, he was immobile for about a month, and then development is a grey area anyways from kid to kid. Either way he is daily better.

Our pulmonologist said he is okay without the oxygen now, but wants him to stay on it through he holiday/winter/sick season just to keep stress off of his body. Of course I want whatever is conservative and best, but I will NOT shed a tear the day I don't have to fight Max over his canulas, move tank regulators around, reorder O2, blah blah blah!! He doesn't know any better luckily, and only yanks at it when he's sleepy- kinda like kids rub their faces when theyre tired.

We are so blessed to have gotten to this place. I still look at him with relief, and it's all still so fresh in our minds. We don't take Max out much except to family's homes; no sense in pushing our luck, right??

So, that's the scoop! :)
Claire

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Psh, he's fine!

I'm so glad, the ultrasound on Max's spine was nice and BORING. woopeee!!!! So far in his life, all my "routine" tests have ended in the bad news nobody wants or thinks they'll get. SO, I'm happy to report nothing. No Spina Bifida or "tethering" (where one leg or the other wont work) to worry about. Just thought I'd get back on the blog to report that quickly.

Max has been feeling kinda sicky the last couple days, and I was so bummed because he was kind of faltering on his eating and acting really out of sorts. But tonight he "chomped" down his whole bottle and was smiling up a storm, so I hope he's feeling better! It's so weird when Max isn't quite himself, because I start worrying about the worst! I suppose any new mom does this, except I have some legitimate reason to freak out, haha! I'm just learning...

Random side note...hehe...I had gained 35 lbs during the pregnancy. The first 15 literally just fell off in the first 2 weeks, and then, nothing! I truly didn't lose even a half of a pound in the last 2 months, so I started to really worry! I know I've been stressed...BLAH BLAH BLAH!!! :) All I know is, I joined Weight Watchers, and I LOOOVE it. I already lost 4 lbs, and I'm eating really well. I like having a focused plan. It's kinda a game for my mind, and I'm so motivated now. I can't wait to be at least close to my previous weight. :) Gotta be a hot mom! Just kidding!!! (Mostly.)

Alrighty...
Claire :)

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Don't hold it against us...

We've been so busy!!


We got home two weeks ago from this last Friday, and it's been a blur since then. In fact, every day I've said, "I'll blog tonight!"...ok yeah right. I have had a crash course in mommyhood. Whew, what a life! I've always admired mothers, but NOW i GET IT!! :)

Max is still just doing great. When we got home, we met all our new doctors; a pediatrician, a pulmonologist, and a Gastroentinologist. We still have Max on oxygen, and maybe at our pulmonologist appointment on the 22nd, we can be free of it! No rush if he needs it, but I am excited to be free of the 7 foot tether called Max's oxygen tank! :)

Some kinda neat stuff: when we can home, Max was eating about 30 of his 70 mL's of milk by himself...and it was tough! When we went to the GI doc appointment right after coming home, he switched Max to a higher calorie formula. The next morning I started him on it, and he literally gulped the WHOLE bottle down. And then I proceeded to cry for a while! :) (Out of excitement) Since then, Max eats his whole 70mL's by mouth about 80% of the time! HOORAY! I am so happy...I wonder if it's because the formula is a bit thicker, or if it tastes better, or both. Either way, it's a victory for Mr. Max!

We've only taken him out a few times...I run errands with him if I have to, but not really any "group" things like church (just once but I was having an anxiety attack the whole time...maybe a bit later we can try again!). It's funny how ready I felt, but the second we were in a group of people paying attention to Max, my stomach was in total knots. For now, we'll stick to family visits!

I have an ultrasound appointment with Max tomorrow (for him), to check a dimple he has at the top of his behind-crack. The pediatrician said it's overly cautious, but could be a sign of spinabifida. We don't need to take any chances! I'll post how that goes.

Mr. Skinny got weighed at the pediatrician...5th percentile for height and weight! But, he's rapidly gained weight since we switched formulas, and earlier last week he was 8lbs, 15 oz. So, we are making progress! It's hard to remember he's already 2 months old...it feels like I've always had him!

Max is the nicest baby ever...he has such a happy disposition, never really fusses, just smiles and toots. ;)

I'm going back to work Saturday the 24th, part time; I'm excited and not! Pretty normal response I think. I feel a little crazy sometimes just in my house with Max all day, but I don't actually think I want to leave him either.

Here's a couple cute pics!
Max and Dad...chillin' on Sunday morning! (today!)...check out his "wild things" tattoo peeking at Max!

And, here's Max all hyped up for the Gators Game with Dad! He is a Floridian, ya know, so he has to represent!
And...Max discussing the serious things in life with his friend the blue elephant...he loves looking at him!
And...another cute one of Father and Son! I LOOOOVE this picture..do you all see the resemblance now? It's too bad Max doesn''t look more like his dad. ;)


Well, I think that's really it?? Max is great, we are good, Thank You God For You are Good!
Thanks for all the support folks!
Love ya,
Claire

Ps, never got to thank everyone for the "circ-support"...Max is looking great. We've had more highly opinionated but poorly educated (on this topic) people commenting...but oh well I have the delete button right?? :)

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Home Sweet Home

Can you believe it!? 2 months (more for Claire), 5 surgeries, 5,000+ miles, and over 65 hours of travel time later, we are finally HOME. I really cannot express the joy that Claire and I feel about being here right now. We got home at about 1:30am yesterday morning and when I went upstairs to Maxs room, I just broke down. All of the stress that we have been carrying with us for the past 7 months was now gone. My perfect, beautiful baby boy was where he belonged.

Yesterday was a little crazy with getting unpacked and all of our families that wanted to come see him. I think at one point there were 9 people here. It was totally overwhelming, but great to see. Our parents and brothers and sisters all got the chance to see him or hold him. Claire has one sister that lives in Oregon that will be able to meet him in a few months. She and her husband were not able to make it down, so we miss them. :)

One of the friends that came over yesterday to see him was our friend Misty Dunn. Misty is am AMAZING photographer and we wanted the first pictures of him home to be taken by her. She has a website (www.mistymichellephotography.com) that you can check out if you would like. She is super talented and we just wanted to share a few pictures of Max in his NEW place!

Thank you all again SO much for the prayers and thoughts. We really could not have done this without it. You have all been such a blessing for our little family as we went through this.

So, this ends that volume of our lives, and so we begin on a new journey with having our baby home. We will continue to post things as they happen, but it may not be as often as before. We will still be keeping you all updated though. :)

Make sure (if you have not already) that you fill in your information on the “subscribe” box on the left side of the page, and the blog will e-mail you whenever we update, so you don’t have to be checking all the time.

Again, we appreciate and love you all. Except for “Anonymous.” You know who you are.

From Arizona. From Home.

The Griffin Family

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