I promise we are still alive!!

>> Wednesday, April 28, 2010

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

10 comments:

Becca April 28, 2010 at 10:47 PM  

he's looking great! Such a cute baby! I'm very happy for you guys.

Jaime's World April 29, 2010 at 6:24 AM  

Aww, Claire,
Thanks for the update! Max is so incredibly handsome! He's making some awesome strides! It's kind of funny to read your post, Jaime who is 4 months older is starting to reach the same goals that Maximus is. Jaime's a bit behind, and he's 3lbs heavier than Max, but exactly the same height. (Jaime's a little peanut.)
YEA for no head band! Both of my boys had torticollis, Jared was "fit" for a band, but like you, insurance delayed it, by then, Jared didn't need it. We tried to correct Jaime from the start so that he wouldn't need it either.
Jaime has feeding issues, too. Though, truly it is a good thing that Max isn't opposed to feeling his food...sometimes just feeling it gags Jaime. Hoping for some feeding success ahead!
Thank you for sharing Maximus with us, he's such a little miracle!

P.S. I'm chopped liver when Daddy's around, too! What is it with them? HA!

Jennifer Tenney April 29, 2010 at 6:42 AM  

What a cutie!! Good to see everything is going great!!!!
Hugs,
Jennifer
Mom to Dakota 12-25-2008

Stephanie May 3, 2010 at 10:08 AM  

Oh my goodness, I can't believe he's crawling. Neither one of the twins is crawling yet, but I think it's because of their weight factor. How fabulous that he's growing and developing so well. Hang in there!

Stephanie

Hayley May 4, 2010 at 7:58 AM  

just going to quote u here ***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! :)*****

oh my goodness that sounds so much like Lewis, only thing is we aren't getting any help :( my health visitor is chasing this up but Lewis is just coming 6 months now x

thanks for the pic of the G tube, Lewis goes back in hospital tomorro for PH staudy and Contrast study and while i was there was going to see if they would fit the G tube as currently 100% NG tube fed and he gags on the tube a lot as well which doesn't help his vomiting :s

oh and i'm also chopped liver when daddy's around :s

thanks for the update what a gorgeous wee champ xx

Anonymous August 29, 2010 at 7:56 AM  

Fantastic web site, I had not noticed clairegriffinsblog.blogspot.com earlier during my searches!
Keep up the great work!

Anonymous August 31, 2010 at 4:21 PM  

Would love to see update and photos of the amazing Max.

Suzanne September 12, 2010 at 7:48 PM  

very cute indeed. love the chunk cheeks! just met a new couple in G'ville about to start their adventure with CDH. Thought of you and Max. Prayin for you!
~Suzanne

Anonymous September 16, 2010 at 6:10 PM  

Wow neat! This is a really great site! I am wondering if anyone else has come across something
similar in the past? Keep up the great work!

The Roberts Family December 9, 2010 at 3:54 PM  

i love that sweet little man!!

  © Blogger templates Shiny by Ourblogtemplates.com 2008

Back to TOP