Tuesday, June 16, 2009

jonah update and lack of posts

Hi all. This will be short, because I don't have much time. I just basically wanted to write and say that blog posts this week will likely be few and far between. Matt and I are planning to have a yard sale on Saturday, so any moment Jonah is sleeping or in a catatonic state watching TV reading an educational book on modern medicine, I'm going through closets and reorganizing. If I'm going to do a yard sale, I want to do it right... get all of our crap priceless treasures (seriously, come buy some) OUT OF MY HOUSE.

Jonah update: Jonah's doing well for the most part, although we are still having major feeding inconsistencies. I thought we had the acid reflux under control, but today he is back to his old ways arching his back and crying. He's been really tired today, though, so I'm hoping that's why. It's so frustrating when he's too sleepy to eat, but too hungry to sleep. He finally did pass out for about three hours this afternoon (woot woot!), so that was good. But all I could get him to take when he woke up was three ounces.

The nurse came today, and Jonah weighs 12 lbs 9 oz. That's up five ounces from two weeks ago. We'll take it. :) His hands are doing alright. I'm now wrapping the body of his hand, but leaving his fingers out. We haven't had any more swelling since doing it this way, so for now, that's what we're trying. He is getting about two big blisters on his finger at a time, but they are the clear ones, not the bloody ones, which seem to hurt him more. For the most part, the skin is staying intact after draining them, so that's great news. His thumbs both have raw spots on them now, so they are bandaged back up. I guess, unless he's acting like he's in pain, I'll keep his fingers unwrapped, but just wrap them as needed if he gets raw, exposed skin. I think it's so important that he be able to move his fingers, grab objects, and explore the world. I guess my thought process is that, at some point, he's going to have to get used to it, so I'd rather him go ahead and make the adjustment now before his hands get even more sensitive. Plus, he needs to be able to develop those fine motor skills.

I LOVE feeling his hands on my face or having him hold my finger. I can't explain how amazing it is to see him moving his hands or bringing them together and exploring his fingers. The other day he was giving me a fit not eating, and he kept putting his hands together up at his mouth. I said, "Oh, you're right. We forgot to say the blessing." So we did. And then he ate. WHAT was I thinking?

On a crazy note, the Facebook prayer group for Jonah has 7,997 members. That is amazing. We are continually blown away by the love, prayers, and support that Jonah inspires. He is one amazing child, and you guys are unbelievable. Thank you so much (just in case I haven't said it in a while).

Anyway, I better run. Milk to pump, dressings to change, hubby to hug (he just came in from work).

Please pray specifically for Jonah's feeding inconsistencies, and that the skin on his face and hands will toughen... and of course, for a healing.

40 comments:

Lyn said...

Sending lots of prayers for Jonah, and for his strong, loving Mommy as well!

Anonymous said...

If you're therapy for Jonah is through Early Intervention (or whatever it's called in your state - Together We Grow?), ask if they'll give you a consult with an occupational therapist or ask your PT to ask an OT she works with for information on making the reflux more manageable. I worked for EI as a Support coordinator and I know the OT's often did a consult for one visit for a feeding issues (particularly if they had experience/expertise in feeding issues). Reflux for little guys is extremely common.

Mandy and Russel said...

You are one busy woman! I don't know how you do it all, I truly don't. Hope you have a great yard sale. I've been praying for those little hands for days now and will continue to do so. ♥

Becca B. said...

Good luck on the garage sale! Those are always fun....we will miss your daily posts in the mean time, so hurry back!

Brittney Galloway said...

I hope the garage sale goes well!

Tribulation said...

hugs for jonah and mommy and daddy.

many prayers for you all.

Tricia said...

Will keep praying. Have fun this week with the garage sale. God bless.

Mel said...

Patrice,
Reading you describe the feeling of Jonah's hands on your face brought a smile to mine and tears to my eyes. Such preciousness is this age anyway but to experience it through you is even more so. Once again, thank you for sharing a piece of your lives with us and allowing us to love your family.

Mel

Wanda Wilkinson said...

As always lots of prayers for healing, fewer blisters & for his eating patterns to become easier.
I do not know how you do everything you have to do daily & then to add a yard sale on top of that!!! I hope you make hundreds, because I am sure whatever you are selling is very nice.

I remember the touch of those small hands & the feel of my babies holding my fingers, you never forget those feelings. I love to look at Jonah's little fingers in the pictures, they are so sweet.

Many blessings & prayers are being sent your way from Durham.

RLR said...

Hope your yard sale goes well - and the weather is nice for you!
Glad you are having some sweet times with Jonah amid the feeding issues.
Still praying!

dg darling said...

Lots of prayers for Jonah and you. Reflux is hard on everybody! I was wondering, judging from Weston's history, will Jonah eventually develop calluses where he repeatedly blisters? Just curious...

Rebecca said...

Nothing like a good yard sale to wear you out, clean out the closets, and earn some extra $...Good luck!

Praying for Jonah!

ashpuck said...

Thanks for the update! I would have definitely missed hearing about Jonah and maybe even worried a little. I'll be praying that your yard sale is a success also!

~Ashley

Laura A said...

Praying for all of the above!! And praying for sanity for you and Matt as you get ready for the yard sale. You are far braver than I! I hope it's a success!

Glad Jonah's gained a little weight and that he's getting to use his fingers.

Love from TX!
Laura

Mimmy said...

Patrice - Clean out those closets, get rid of anything you haven't used in the past 12 months except for family memorabilia, feel good about your house, sell all the "junk", make lots of money, and then spend it at the beach buying Jonah cute little outfits with no elastic and you a new purse. Surely you must need one by now and I know there must be a Target at the beach.

Seriously, I wish I could be there for your sale and that it is a great success.

More to the point, I pray that Jonah's hands will not be blistered too badly, that the blisters and raw places he has will heal quickly, that his feeding problems will subside and that your time at the beach will be a happy time for all of you.

Love you all to Heaven and back,
Mimmy

Butterfly said...

Its so cool that he knows you need to say the blessing at that age! Praying that he will get healed.

Kelli said...

You can count on us for prayers!! We pray often for Jonah to be healed completely. Hugs:)

Kelli said...

Good luck with the yard sale. Hope you get rid of stuff and Make some money!!!

Sandy said...

Prayers still coming your way!

Nikki said...

Hi there! Just wanted to give you encouragement about the feeding inconsistencies. Based on my experience (3 wee ones, the first named Jonah and the third about a month younger than your Jonah!), the arching back/fussing/"refusing to eat after 5 minutes even though you feel your other breast is about to explode" thing is a pretty normal baby thing. I deal with that at least once a day with our daughter, and dealt with it often with my two older boys. My daughter seems to do it more than they did (lovely, huh?!), so my approach of late when she does this is to give in for 20 minutes -- or until she starts gnawing on her hand -- and then try again. It's like she just needs a break sometimes. Anyway, I don't know if that helps, given the complications you have to deal with in feeding sweet little Jonah, but I hope it at least eases your mind a bit.

By the way, my Jonah (age 4) says "hi" to baby Jonah. He thinks baby Jonah is pretty dang cool. :)

Love, the Starrs in Colorado

Toni :O) said...

Will certainly pray hard for his feeding issues and keeping his hands healthy. Thanks for letting us know you'll be blogging less for a bit...I certainly would have been wondering! Best of luck for a profitable yard sale...always nice to get some cash for another person's treasure! Hugs and kisses to Jonah and support for ya'll from Michigan gal!

carrie jo said...

Just a thought..is Jonah maybe cutting teeth? You probably already thought about that or someone may have even commented on such. Teething may be contributing to his fussiness?
Jonah is an absolute doll! Love his eyes.

s'me said...

*hug* My darling boy used to do this, as a booby-baby and just push the breast out of the way, arch his back, have nothing to do with what had suddenly become POISON that I was trying to force down his throat. I used to put him down, do his nappy, and then he'd be ready for more.

Praying for Jonahs healing.

Sara said...

many prayers sent your way, for jonahs sweet little fingers and hands, for him to eat well, and for you to get everything ready for a big yard sale (yeah!) wish i lived closer, i LOVE yard sales!! and with your target addiction, i bet you have tons! :D
lots of love and prayers~
sara in texas

mandi @ it's come to this said...

Still praying!!!

Good luck on your sale this weekend:)

Martin Family said...

Praying for his eating and the skin on his face. Hope you have a really successful yard sale!

Anonymous said...

Praying for healing for sweet Jonah each day as well as strength for you and Matt. You guys do such an awesome job with Jonah. He is already a miracle!

Lots of prayers being sent up for all you from KY!!

Channe said...

I had a carport sale in 2005 & it was FABULOUS. One of the best things hubby & I have done. Once I saw it all laid out on the tables outside, I was like, all of this was in my house?

Sarah Joy said...

I must first confess that I haven't read your blog on a regular basis ... not enough hours in the day! (but praying always and visiting as often as I can) So I'm not sure what you've been trying or not trying for the acid reflux. But my nephew, who is 7 weeks old today, had the same problem. He fussed all the time, arched his back, you could just tell he was getting a belly ache after eating - it wasn't colic!

His doctor put him on prevacid twice a day, which helped a little bit. But the biggest help was when my sister took him to the chiropractor. He has done 2 adjustments on Langston now, and he is like a new baby. Hardly ever fusses, except when he's tired, eating is going great, and he doesn't cry and arch his back after he eats anymore.

I'm not sure how or if they could do adjustments on Jonah, with such fragile skin - but I would highly recommend it for the acid reflux. I'm not sure how it works, but it definitely did with my sister's little guy - and also with a friend of ours' little girl.

I hope you can get something figured out. Good luck with the yard sale!

chapinamom said...

Hey, Patrice! Check out the Riggs family blog from the 16th! He asked readers for their favorite blogs, and several said that your blog is their favorite - very special!

motherof3fellows said...

I WILL be praying for complete healing :)

Anonymous said...

So good to know that Jonah is already reading eduational material already! tee hee! Love a good yard sale. Too bad I am so far away for the "treasures' that abound! My husband has been known to cause traffic snarls to get over to a "good one!" How sweet he can hold your hand. That must do wonders for you (both). I will pray specifically about the feeding issues. Jennifer in Southeast, NC

Alisa said...

Oh girl! Do we ever feel your pain! Our sweet baby girl is the queen of feeding issues! I never can understand how eating doesn't seem to be a priority to her. Definitely not a problem for Mama!:) We will pray for Jonah. I know how time consuming and concerning this is. Hope your yard sale goes well.:)

Amber said...

Keeping Jonah in my prayers and you his wonderful parents.

Good luck with your garage sale.
ak

Melina said...

Lots of prayers for Jonah!

Genesis Costner said...

Dearest Williams family..

I too have a Jonah thats a miracle baby.. www.genesiscostner.blogspot.com.

Your little Jonah's story has touched me beyond.. know that I'm praying for your Jonah. Our God is still a healer.

Genesis

the-mommy-person said...

Jonah is beautiful as usual! Hope you sale goes well. If I was so far away I'd come by. I'd buy anything for a chance to see that little miracle! God bless!

Anonymous said...

Hi Patrice,

I'm one of your lurkers and prayer partners but have never left a comment until now. I just wanted you to know I was watching the Ion Television Network, a digital channel, and they had a series on called Profiles in Caring. One story featured a mom who has three children with EB. It showed a walk-in closet full of gauze and medicines and I immediately thought of you and Matt. I was so thrilled to see that the word about EB is getting out there!!

Blessings and Prayers,
Angie

Sandy said...

It's Thursday and I sure am missing your posts . . . I know, you're busy with the yard sale . . . looking forward to your next post. Hope the YS goes well.

With Love and Prayers,
Sandy Moore

mrs. mari said...

lots of prayers for jonah and you all too to keep your emotional and physical strength up.

good luck with your yard sale this weekend. i hope you have lots of shoppers with deep pockets :)