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

>> Friday, January 22, 2010


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



11 comments:

holly January 23, 2010 at 5:44 AM  

Hi,

I wanted to let you know our Ruby had to have helmet, too. I was really upset about it. She on the other hand doesn't even notice it. Plus you can put stickers on it :)

I know not what you wanted, but it will help. PT also helps with the torticollis.

If you have any questions just let me know.

Holly
Mom to Ruby LCDH 4/10/09, 26 days on ECMO.

meme January 23, 2010 at 8:08 AM  

OH, my what a cute baby!!! He is adorable...thank you so much for sending out pixs!! We thought of ya'll over Christmas and I thought of what a neat Christmas gift God had given you.....Max!! So glad to hear that he is doing so well!! Enjoy...enjoy...enjoy! love, martha

AllieKat January 23, 2010 at 5:05 PM  

What a sweet little boy! I have checked your blog every day and have asked your mom several times how Max was doing, so it was great to all the wonderful pictures and updates of the little guy!

Thanks for sharing all the good news and hang in there with the less-than-good news. All things considered, it's a small price to pay and even that will be over soon!

Cindy
(from Brinton)

Jaime's World January 23, 2010 at 10:56 PM  

Thanks for the update...Max is adorable!
Just so you know...Jared my 6yr old and Jaime (my CDH'er) BOTH have torticollis. They both tilted their head to the left and preferred to look right. Jared was in therapy for a very long time for it, had a flat head and everything. He never wore a band and no one would ever even know he had torticollis unless I told them. As for Jaime, well, we're still working on his. He is a tummy sleeper these days (he's still on O2 at night with his pulse ox, so it's "safe.")
We were told he would not need a band, but we'll see. Jared's head was much worse than Jaime's, he was referred to get a band, we couldn't afford it at the time, but like I said, it doesn't even matter now!
Anyway, thank you for the awesome update! Good luck with everything!
Sheryl

Liz and Shane January 24, 2010 at 8:56 AM  

Max is so cute! I love the last picture. Nayeli sleeps that way too. They are so cute in that position. thank you for the update. I love reading all the hurdles Max has jumped. He is an amazing little guy. He is an inspiration to other CDH families.
Greetings from Cali
Liz
Nayeli's mama LCDH

Annie January 24, 2010 at 2:50 PM  

Yay!! Thanks for the update! He looks SO good!!! Glad you guys are dong well, and that you survived the tough transition. Someone in our SS class asked about you guys just last week, I'll be glad to give her the latest update!

The Gault Family January 25, 2010 at 2:43 PM  

Claire, he is adorable!! I am so proud of you and your strength throughout this small bump in your life. It looks like he is doing great!! I hope to see you soon! My hair is due to see my mom so I will stop in and see you!!!

Suzanne January 25, 2010 at 8:39 PM  

what a cutie!

Stephanie January 26, 2010 at 12:38 PM  

Oh, it's so good to see him off that oxygen!!! He looks fabulous! Thanks for the update. We think of y'all often and are so glad y'all are doing so well. Much love to you!

Stephanie
Kamryn's mama

Anonymous January 27, 2010 at 5:57 AM  

nice post. thanks.

Amber January 28, 2010 at 12:52 AM  

He is so adorable!

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