Saturday, April 4, 2009

may the force be with you

This one goes out to my friend Zack. Hope you like it.
Jonah the Jedi
Jonah had a rough go of it tonight. I can't figure out what's different from night to night. Jonah's a conundrum. Thanks for your continued prayers. Only two new blisters tonight - that's a good night. No new news to report.

Did I mention I'm tired?

34 comments:

Joanne said...

Dear Patrice,
If I were in your shoes, I would want to sleep for a month! Please do make an effort to get extra rest and take care of yourself. You've been through so much, and stress like this takes such a toll. Continuing to pray for your beautiful baby boy.
Joanne from Alexandria, VA
www.joanneredmond.com

Penny said...

He looks so good from where I sit. Two blisters is great! We never could understand if everything was the same what was different............... One night things would go great and the next well......... everything would fall apart. Then we would decide it was God's intersting sense of humor not wanting us to get too big for our britches in the parenting department....

Praying for sweet Jonah....

Anonymous said...

Cute picture! And WOW! nice diapering...looks like you are a professional :)

Dana Z.

LisaShaw said...

I pray you and hubby get some rest and Jonah too and may he have a wonderful day tomorrow and days/nights ahead in Jesus Name.

Beth said...

He is so cute! What a little Jedi!!

With all of issues associated with EB aside, Jonah is still a newborn and is still trying to figure out his new (the world, and now his house) surroundings!

One of the biggest things I have learned as a parent is just when you think you have "it" down, ie schedule, naps, feeding, etc....those stinkin kids go and change it up on you!! :) That is what keeps us on our toes!!

Praying for you guys!

Sandy More said...

Patrice,
Hope you get some sleep . . .hope you all get some sleep. Jonah is SO BEAUTIFUL. Thank you for sharing something about him everyday . . . especially the pictures!
Peace and joy,
Sandy Moore

brightleigh said...

Jonah looks very good. Rob said to tell you and Matt, "Welcome to Parenthood." He is correct in that statement...sometimes, I don't think if I will ever catch up on sleep, so grab it while you can, and don't feel guilty about it. Love you much, and talk to you soon. Still praying.

Much love,
Leigh

Anonymous said...

Jonah looks great - so sweet! Maybe he had such a busy day with his visitors, he had a rough time settling down for his dressing change tonight?? Praying Jonah does better tomorrow night.

Gail
Annapolis, MD

Watts Family said...

What an adorable Jedi!! Your post made me think of one of my new favorite songs...."It won't be like this for long" by Darius Rucker. You and Matt are doing a great job!! Get some rest and we are all still praying for you!

Many Blessings,

Amanda

CastingCares said...

He is so adorable! I was going back through some of your old posts tonight and realizing how far he has come by looking at the pictures. God's grace is amazing! Get some rest.
Praying for you all.

Anonymous said...

You are doing a great job and I hope you don't mind my making a suggestion (you may already be doing it). As an EB mom, I found it was important to make sure my son's thumb was pulled back and his hand was not in a fist when it was wrapped. When he was a newborn, we did not do this and within six weeks his thumb was pulling way under - it took us some time to get it back in the correct position. Have you seen the bandaging videos from Stanford?

http://dermatology.stanford.edu/gsdc/eb_clinic/eb-videos.html

They helped me a lot. As soon as we were able we started wrapping his fingers seperatly (under six months age) - it took some time to get it but it was worth it. As for the bath, we too made the mistake of trying it too soon - he lost the skin on both feet with one kick (on what I thought was a soft blanket) Prevention is so worth it.

Blessings to your family,

Barbara and AJ (RDEB 15 months)

avbernat said...

Awe all he needs is a brown micro fiber cloak and his costume is complete! Well that an a light saber, haha!!!

Get some well deserved rest Patrice! I've had sleepless nights for 8 years running... HAHA! Nap when he naps, although with that adorable face, I'd opt just stare at him at all hours.

You are all truly blessed and my continued prayers for the progressing health of Jonah and for strength and patience for you and Matt.

teacheroftwos said...

My son reminded me of Jonah today and made me think of Jonah. I was giving him a batha nd I remembered what you said about wishing you could give Jonah a real bath. my son looks a little like Jonah, so while he was laying in the bath I thought of you and Jonah and prayed that one day you will be able to give him a real bath!

Raising Olives said...

We continue to pray for you and sweet Jonah. Praying today for some extra sleep and peace for you.

Blessings,
Kimberly

The Peoples Family said...

I am so sorry you are so exhausted-I guess it has to be part of parenting and it never seems fair because they always have more energy than us. Call on people from church to prepare meals and come help clean house and do laundry for you so you can tend to that sweet baby and get some much needed rest yourself. It is hard to ask but you need your church family to step in right now and carry some of the load for you.

He looks so wonder. I read the post ever day to check up on him. Can't wait for you to be able to put him in his cute little outfits and see lots of healed skin.

Anonymous said...

As newborns my kids seemed out of sorts when company came.Every one wanted to see them,I couldn't wait to show them off.However when breastfeeding those little people can tell when you are stressed,and especially tired.Deep breath, you and Matt need to let some one(a nana or papa?) watch Jonah-- the 2 of you go outside walk around the block,soak up some vitamin D take 10 minutes alone. Big week next week while family is here USE them.
prayers for all
2shoes

Heidi said...

I remember after my first child came home I was so tired. I felt like I was hung over and living in a fog. By the time I had a second and third it was never a hard as the first one. It will get better. Your little boy looks so much better.

Anonymous said...

Even with a healthy newborn, you will be tired for months. Neither one of my children slept through the night (or napped during the day) for at least 7-8 months. I also had a preemie the first time who required a LOT of extra care so I feel your pain although in a different kind of way. There was a certain way we had to wrap him-onesie, socks, three blankets, hat, swaddle blanket,etc-took about 10 minutes for the whole thing. Then we would feed him, change him, re-wrap, and then it was time to do it all again when he would wake up to eat about an hour and a half later or sooner at times. It was misery. My mom (who just happens to be a nurse) lived with us for almost 2 months because he required so much care. As a parent and especially as a mother, I dont' think we sleep until they are at least teenagers! Good Luck. Jonah is beautiful!! Praying in Alabama.
Ashley

Hope said...

I'm sorry you all had a bad night. Hopefully today is much better! Lots of prayers for your sweet boy!

precious 3 said...

Sorry you had a rough night! Praying tonight will be better. Jonah is such a cutie! He really has improved. Praying improvements will keep coming.

Sarah @ Thrifty Decor Chick said...

If it makes you feel any better -- ALL babies his age are a conundrum!! :)

Anonymous said...

You are doing a wonderful job Mommy!!! He is so beautiful and we are continuing to pray!
Daisy (alabama)

Staci said...

Jonah is simply beautiful! I also want to say that the chances are VERY good that even without the EB, he may have had a rough night anyway. We always had good nights and thought things were "figured out" then the baby would go and change the whole routine on a whim :) Best of luck and I will continue to pray for Jonah and for you.

Anonymous said...

He is looking great. His dressings look so professional too, so you guys have learned well on how to do it, and remember when you wondered how you would do it with only your hands and not all the hands at the hospital---everyday, something more awesome seems to happen--hope you went to see Gabe's spot--the weekend has been beautiful---thinking of you and praying for you every single day! He's always beautiful, as are the two of you! Robin @ TR and the gang!

Jill said...

Hi Patrice,
I know you have TONS of comments to read through so I don't know if you will get to answer this one; however, on the chance that you do...
We were giving praises and prayer requests in Sunday School today and we were doing both for Jonah (as we do every week!) and someone was asking if he was still on morphine or other pain meds and I wasn't sure of the answer. I don't remember reading anything related to that since you've been home so if you have a chance to update us on that, it would be great.
Love and prayers from the Bennetts!

Anonymous said...

Jonah was just letting you know last night that he has the "last" word. With babies you never know what can make a difference in their normal routine. He may have just been over stimulated from the company. Little ones like to have the same routine & extra people around (even though they love him) makes a difference.

I agree with the post about you & Matt taking 10 minutes for the 2 of you to walk around the block. Take some deep breathes, & tell each other how much you love him/her.

Jonah is looking great & that is proof of what awesome parents you are...I will continue to pray for Jonah & his mommy & daddy..take care of yourselves. Your job is taking care of yourself & Jonah, others can do the cooking, cleaning, washing,etc...

Love to all of you Wanda Wilkinson Durham NC

Alisha said...

I love the Star Wars quote. lol.

Praying that the night time changes go smoother for you. I have to fight my kids down for diaper changes ... if I had to do dressing changes ... ugh ... i shudder thinking about it

Anonymous said...

He looks so peaceful now that he is resting at home with his mom and dad!! Love it!!

Erin Hingley said...

Patrice,
It used to be that as soon as I signed on to my computer I would immediately check my facebook page. That has changed since I found your blog. I am immediately drawn to find out how your sweet boy is doing. I've been showing my son, William (1), pictures of Jonah and he gets all excited and points when he sees them. Thank you so much for keeping us posted. As always, you are in our prayers.

Love,
Erin in VA
youmeandwipee.blogspot.com

Amber Schmidt said...

Too funny! Love that you guys have such a great sense of humor!!!

Praying for Jonah every single day in Kentucky!

Stephanie said...

Praying for a smooth day tomorrow!!!!! Hugs

Kelli said...

Bless his sweet little body. I just want to squish him. So cute. Praying for both of you, him to have less pain and for you to get a little rest!!

Alisa said...

You poor thing! I know how tired you must be. I've been there. I'll pray you can get some rest. Your Jonah just gets cuter everyday. Love the most recent pics.

Alyson said...

He looks so cute! You guys are doing such an awesome job with his dressing changes!!

I'm still praying for you!!

Blessings,

Alyson

http://wellensfamily.blogspot.com