Thursday, May 21, 2009

a smorgasbord

Warning: All I have in my head as I begin to type this post are weird, random snippets. Please do not expect a cohesive post. If you came here with that expectation, stop reading now. Seriously. Stop.

Jonah Update - Jonah is doing well. He's gaining weight (they tell me he's getting fat) and his weight at last check was 11 lbs 15 oz (with bandages on). My guess is that the bandages weigh a good pound. He's smiling and cooing on a regular basis now, and I can't tell you what this does for my morale. He seems to love me the most (and daddy too, of course) which is how it's supposed to be, and that makes me happy too. For a while I felt like whenever he was awake, he cried, and that he hated me for all the crappy stuff I put him through. But nope, he seems to love me a lot, so no worries. He smells delicious, and has the sweetest little grin you've ever seen. I'm going to try to get some video here pretty soon, but you know how they'll never do their tricks when you want them to. He's getting to where he's happy most of the time unless there's an issue (tired, hungry, poopy). Speaking of poopy, he has pooped A LOT today, so I don't know what's in the breast milk that he's drinking today that's cleaning him out. That's the bad thing about pumping... you never know what you ate a month ago that's having X effect on him. But man, I wish I knew because I'd be sure to eat that again when we're having our constipation issues. We're having a better go of it as far as nose boogies are concerned in that he's not getting dried up ones in the back as much, and he's able to eat much easier. Aren't you so glad you get to hear about my son's nose boogies?

OT tomorrow - The OT comes tomorrow. I'm really nervous about it. I don't know why, except that I know he needs a lot of help with his hands (his thumbs are pulled in and the top joints of his fingers are crooked), and I'm sure the reality of it all is about to smack me in the face. Although you saw pictures of mittens in the last photos I posted, his hands were still wrapped underneath. The mittens were just there to protect his face. I feel like they are softer than the outer layer of bandaging. Anyway, after tomorrow, it will probably be time to start unwrapping his hands, and it makes me want to vomit when I think about the blisters that he's going to have. His sweet little hands are just perfect as far as his skin is concerned. But I can't wait to feel him hold my finger and touch me with his bare hand. So far he's only grasped my finger when I have an Aquaphored glove on, and usually it's in protest of me trying to wrap him. Please be in prayer for his evaluation tomorrow and our inevitable unwrapping of his hands (whenever that ends up happening). We are getting his services free through Child Development Services something something, so that's great. So far, I have just set up appts with OT and a nutritionist, although there are other services available as we need them.

Dressing Changes - We have started doing them around 5:30 every night, and it is GREAT! We do it on no pain meds, and he's totally cool with it. I mean, sometimes he gets fussy, but not because of pain... just because he's ticked to be lying on the table for over an hour. Sometimes he's the happiest during dressing change that he is all day - surrounded by people giving him attention, diggin' some Baby Einstein, lying there getting to kick his legs - he's a lot of fun. We're so happy to be getting it OUT OF THE WAY, so we can either have free time (yeah, right) or at least spend our evening doing "normal" parent stuff (feeding, changing etc). Matt and I are both less stressed and more relaxed now. It's been a life-saver.

Night time - Oh, please don't get me started. Jonah was up yesterday from 4pm to after midnight... not AT ALL interested in sleep. We tried rocking and bouncing and letting him fuss it out. All to no avail. And because he stayed up so long, we had to do a midnight feeding (that he's usually asleep for). I was SURE he would sleep through his 3:00 since he had eaten that extra feeding and hadn't slept in forever, but nope. Old Faithful was up at twelve, three, and seven. And to top it all off, he didn't go back to sleep between eight and ten like he usually does. Little stinker. I guess when you've drugged your kid to sleep for 11 weeks of their life, they really don't know how to go to sleep on their own. (Note: Jonah is not completely off of Morphine and Ativan. He should be off of them completely in 15 days if he doesn't show any signs of withdrawal. We are now giving him Morphine at 8pm and Ativan at 9pm in hopes that if they do zonk him out, they will zonk him out at bedtime, not at 7pm. I can't wait for him to be completely off. He doesn't need them now, but it's a slow process to get him off without causing him different issues.)

Sunday - Thank you for all your comments on Sunday's post. They've yet again lifted me up and renewed my spirit. I'm so thankful for this crazy blogging world - to be connected so intimately with the Body of Christ - Amazing. I hope to meet you all someday to thank you in person. But sorry, people, no cruises in our future. Heat and humidity - HELLO! Maybe we could all go to Alaska... oooohhhh, what about a cruise to Alaska? Anybody want to donate a cruise for about 500 people to Alaska? Anyone? Hello? Are you out there? Tim Duncan? Help a girl out. (Go Deacs! Go Spurs! You're way more awesome than Ginobili and so on and so forth).

A few short questions answered:
- I have help during the day (taking care of Jonah, laundry, dishes, but more than anything, emotional support - I'm not so great at being alone... never have been), and either that person stays til 7:00 to help with dressing change or someone else (my mom, Matt's mom, Kathryn etc) comes to help so person A can go home.
- We were married at Bonner Point in Bath, NC (east of little Washington). Supposedly it's where Black Beard was born and called home. It was a beautiful (but hot!) day, and I couldn't imagine a more perfect wedding. I always knew I wanted to get married outdoors, and it was the absolute PERFECT spot (and free too... it's a public park).
- Yes, we can (and do... an insane amount) kiss Jonah. I all the time give him very gentle hugs and squeezes. We usually do hold him in a blanket (to prevent accidentally rubbing him), unless it's just to pick him up to switch out blankets. A lot of times we hold him with a gel pillow behind his head to help cushion his little (seriously little - in the less than fifth percentile) head.

And finally, Happy Birthday to Gerry (Matt's dad - yesterday) and Trent (Matt's best friend - today). Thanks to both of you for being so incredibly wonderful and such a huge part of our support network. WE LOVE YOU!

That's all for now. See? I told you it would be random. Next time maybe you'll listen. You're so stubborn, always having to learn stuff the hard way. Won't you ever learn? Sheesh.

43 comments:

beach2lady said...

That was a great post to read ! ..full of information and love. I am so glad you are all feeling better. Many prayers continue for baby Jonah and all of you.
Love,
Linda G. ( Alabama)

Anonymous said...

When there is a specific need for a Williams Family Prayer u bet'cha, RANDOM is good. Good luck tomorrow.
love & prayers
2shoes

Stephanie said...

I loved reading about real life and getting the updates. I cannot wait until he can grab your finger too!! It is amazing how much joy you get out of things we all take for granted. I am sorry that is the case but know how God is using you and that this world is not our home as horrible as it can get here.
Jonah is a gift to all of us.
Love,
Stephanie

Toni :O) said...

Once again loved your post! I think an Alaskan Cruise would be SO awesome to meet the adorable little guy we all pray for (in addition to Stellan of course!). I'm sending you lots of uplifting prayers and hugs for support that everything goes will with the OT tomorrow. He's a trooper and he'll get through it. Hope you get some sleep tonight and thanks for sharing your wonderful little Prince with all of us. He's such a gem and I just love checkin in on the sweet little man in your life. Take care and can't wait for the next update!

brightleigh said...

Patrice, thanks for the nod tonight--I have a suggestion on getting Jonah to sleep when he doesn't want to go. I imagine it would be a little more trouble for you guys, but we put Seth in the car and rode around for about 10 minutes or so--he usually was out before we got back home. Just a suggestion--glad to know things are better and I love you guys and miss you ALOT!

The Alger Family said...

Glad to hear things are going better. Good luck with the OT tomorrow and thank you for sharing all your random thoughts with us!

Lauren said...

glad to hear this random concoction of thoughts. i hope so much that he starts sleeping regularly and that he makes the transition without mittens and morphine easily.

i miss you terribly and would love to come visit in early june.

and i ate moe's yesterday. it was delicious and i thought of jonah and his bag of doughnuts. :)

Rebekah said...

Sheesh, his head doesnt look small. He looks very well preportioned. Who knows?? I am glad things are going better. I hope the hand situation with Jonah goes well. Ive seen some EB kids with there fingers wrapped individually and just the tips sticking out...that way they can still touch and be protected to some extent.

RLR said...

Ahh, so glad to 'see' you're having a good day! I have been thinking about you a lot this week, remembering what it was like for me to be so down after the births of each of my kids. It's a pretty miserable place to be, and unfortunately not enough people talk about it.

Hope all goes well with the OT tomorrow, and that you get some good strategies for working with Jonah's hands.

I know that you've posted about you pump talking to you at night. Has it, perhaps, asked you to label the milk with what you ate at your last meal? (what was your meal? you're heidi klum... what was your meal? you're heidi klum...)

Sign me up now for the Alaskan cruise!

Random post = random comments

Continuing to enjoy your writing and your humor.

Take care - thinking of you often. Can't wait to go get my magnet!

Donna said...

Your random thoughts are awesome - and so is your family. You are as always in my prayers.

Sarah @ Thrifty Decor Chick said...

Oh my goodness, their sleep till about five months is SO random, I'm not kidding. Our son slept through at five weeks and we were in heaven...it was hit or miss for a while but around three months, I was like, WHERE is my child???? He would NOT sleep. It was torture. :) The good kind of torture.

Sarah @ Thrifty Decor Chick said...

Oh and praying about the OT!!

Rachaellh said...

So glad to read your blog tonight. You sound much more upbeat. Praying for you and Jonah both for tomorrow. I imagine that it will be much harder for you than for Jonah. I hope that you all have a restful night tonight.

Mike and Molly Spivey said...

We got our magnet in the mail today and it went IMMEDIATELY on our car!!! I was so excited that I was going to take a picture of it and send it to you - corny, I know.. but I still may do it! We are always praying for you guys!

Anonymous said...

I love your blog! I check it all the time for updates on little Jonah. What a precious little guy you have in him.
Love your writing, too!
I'm not sure how many hits you get a day on your blog, but have you considered applying for one of those "blogher" ads or the like? I don't know how much money they bring in, but from what I have heard they do ok. Just thinking the $$ could be used to help buy supplies and stuff.
Anyway, always thinking of you guys and hoping for the best.
Thanks for sharing Jonah with us. He is teaching the world so much.

Rachel
UT

lifelaughsandlove said...

I like hearing your random, daily stuff updates. It helps me to understand what you are going through, even if it is just "random stuff" to you.

I will definitely start saying some prayers for Jonah's hand situation. I can't imagine how difficult it will be for you to have to put him into a situation that will be painful for him, yet so important for him at the same time.

I'm also so happy to hear that you can recognize how important you are to Jonah based upon his interactions with you. Just the other day I was thinking to myself how cool it is to be the most important person in the world to somebody, and to have their total unconditional love. Babies are so cool for that! I have a 7 month old who acts like the sun rises and sets in my eyes, and it is the best! His head is also VERY tiny...I think it's in about the 3rd percentile, although his weight is also in the 3rd percentile so he is just a peanut! I always joke that I'm thankful to have babies with small heads...at least during the whole labor part :)

~Amy

MelH said...

I will be saying prayers for the OT visit tomorrow and for Jonah's sweet little baby hands. And of course, prayers for you momma!

Mel

Anonymous said...

Will definitely be saying special prayers (even more than normal) for sweet Jonah and you tomorrow! May God's peace and calm surround you.

I also have a question...where at Target did you find the hands-free pumping bustiere? I've looked everywhere and can't seem to find it??

Hope you all have a more restful night tonight.

Anonymous said...

Your post made me smile! =-D
Thanks for updates on how to pray for you and Jonah too!
I would love to meet you too! Perhaps someday! My daughter's in-laws live in Greenville, NC. I've been there once a couple of years ago. Wanted to visit Bath, but could fit it in! Nice to see your wedding pics from there!
Blessings to you all!
Luann

Nora Lee said...

What a wonderful post! Prayers are with you all for the OT visit...but moving forward is good, right!?! Give Jonah a little hug from me!

as written by Barbara said...

Random is great...
WA state is close to Alaska ... a Cruise would be so cool (no pun intended)... we can go on my imaginary $$... (hehehe)
I will pray for the OT appointment tomorrow. The thought of you holding Jonah's fingers skin to skin is exciting!
Hugs,
Barbara Lyman :-)
Marysville WA

Melissa said...

It's so great that you get to hug and kiss little Jonah. How can you stop, he's so precious? I'll bet when you do eventually leave off the hand wrappings, he will love holding your fingers and exploring with his. Praying for some tough little hands for him that won't blister badly with all his exploring.

And the random post was great. I love me a good buffet!

Wanda Wilkinson said...

I could hear the smile in our post, awesome. I will be praying for Jonah's OT visit & his hands.

Jonah may be going through a growing spurt, the reason he is waking up for extra feedings. Who knows with babies, he make just be "eating" up the extra attention (like he never gets any haha).

So glad to hear you feeling better, and I know his smiling, cooing & interacting with you & Matt makes a big difference.

Glad the dressing changes are better & that it allows you & Matt to be able to have some free time.

My magnets are on my car, my daughter's car & the fling cabinet in my office & my daughter's office in Boone. Will probably be ordering more!!!!!!!

Love, kisses & prayers.

chinamoon1420 said...

I am glad you are in better spirits today! I know you are just going to cry when you feel that little finger around yours! I can't wait to hear about it! You will get through taking his bandages off of his hands. Look back at all you have gotten through so far! I bet then you never thought you could be this strong! Yes it sucks but you can do it! I was so glad to hear you can give Jonah all the kisses and little huggies he needs! That brought so much joy to my heart! I remember a time when my son was in the PICU in a coma at 12 mo and we couldn't talk to him or touch him for 72 hours. It was torture in some ways but also it wasn't because I knew this is what was going to save his life. Anyway, enough about me again! You brought so much joy to me tonight! I am glad you are seeing some joy in your son and know that he loves you unconditionally! Your his mom, his lifesaver! It is nice that he is going through his happy stage!

I had an idea for your milk...every time you pump you could write on the bag what you had eaten previously with a sharpie or something to that effect....Might help in knowing if he can't tolerate something you are eating. I had to cut out anything with preservatives. My pediatrician told me that if it doesn't grow in the ground, walk around in a field then don't eat it! I did eat a little bit of catfish but that is all! IT was tought but I lost soooo much weight!
Glad you are reaping the rewards of motherhood today!
Catch you at the next post! Now kiss that beautiful baby boy for me!

chinamoon1420 said...

Ooops! I am still praying for you and hoping the OT isn't as bad as what you are thinking. Like the other person said, it will probably be rougher on you than him. Of course that doesn't help you any though. Hopefully all of us praying for you will lighten the load a little for you.

Anonymous said...

hi patrice an matt,
ive never commented before, but wanted to tell you that your sweet little boy is always on my mind and in my prayers, thank you so much for sharing your story, jonah's story, and gabe's story.
my 20 month old little girl has som serious "boogie" issues too, and the best thing ive found to loosen them up from way in the back is Simply Saline for Babies. The mist is not forceful at all, very gentle, and the nozzle is safe and will not damage nasal tissues. it is preservative and drug free, and remains sterile throughout use. im not sure if you can even use somethng like that for his little boogies, but if you can, its worth a try. we always try to do a little bulb suction afterward to help remove them, but it isnt necessary.
i will try to comment more often, i always enjoy reading your blog. i have to stop in daily and get my jonah fix! your faith is an inspiration to me and many others as well i am sure) even if you dont feel that you are close to God right now, it is absolutely evident that you are.
much love and many prayers, <3
sara k.
kingwood, tx

Garrett and Carrie Kell said...

Patrice,

It is 2am in Texas, I am up feeding my 9 month old (as you said, old faithful is up again - not to discourage you, I am sure Jonah will be sleeping through then night by now, like all other babies with good mamas who train well ;) ), and the Lord brought you to mind.
As I was nursing Eden, my precious gift, we prayed for your precious Jonah and you (I am sure she would love to meet him one day). We asked the Lord to cover you and bless you with His comfort. We are anxious to see how God continues using all that you have been entrusted with to glorify His Son.
As I came to your blog to share that God had laid you upon our hearts this early morn, I was so encouraged by your post! Praise the Lord for a good report! We will continue you lifting you before our Lord! Prayers for the OT tomorrow will be lifted up as well!
Sidenote: I just had my 3rd miscarriage about 2 weeks ago, and because of your precious words, and God's amazing grace in your life I was able to embrace the trial as His grace in my life. Thank you for being faithful to Him. He is using you all over the world! I don't know if you have ever heard Sara Grove's, He's Always Been Faithful, but it came to mind as I was writing the comment. It is a beautiful song.
God's grace,
Carrie

Holly Aytes said...

I too have those smorgasbord posts every once and awhile. I haven't had much time for blogging or blog readying lately as school has been finishing up here in Knoxville, TN and we have been too busy to sit :) I had to go back and read a few posts to catch up on what has been going on. When I read your post on being mad it reminding me of something a friend once said and something we have been talking about in our ladies class....praying for others when they aren't "physically" able to pray for themselves. My friend said that when her oldest left the church and went on a rebellious streak she was mad at God and wasn't able to pray. A friend of hers offered to "do her praying for her until she was able to pray herself" :) I thought that was wonderful. That is our job to pray for our fellow Christians. I wanted you to know I am praying for you right now and will continue to as you walk this journey.

Sarah Sharp said...

As if you don't already have enough to keep up with - have you thought about keeping a simple food journal? If you write what you eat each day with the date and you are dating the milk, you could reference your food that caused x reaction with Jonah. Just a thought! Love reading your blog!

Anonymous said...

I loved the "random" post! Love reading your post and pray for you, your family and Jonah.

Laurel in Alabama

Jane said...

Enjoyed your random post Patrice, sounds like things are going a little smoother. As time goes by, it will just be routine all that you are doing now. You will look back on it and wonder how you did it all. But our God is with you every step of the way and He will see you through all of your trials and tribulations. Can hardly wait to see more pictures of Jonah. So glad he is cooing and smiling, that brings every mother joy. Continuing to pray for all of you and will especially pray for the OT today. May God Bless.

Heather said...

Praying for Jonah's little hands and the OT appointment. Praying for strength for you and wisdom for everyone involved.
Heather
Charleston, SC

Lorraine-bo said...

1 Thes.5:18: "give thanks in all circumstances, for this is God's will for you in Christ Jesus." ... that includes good baby poops and baby noses clear from boogies ... because those are good for Jonah's health ... and your sanity :)

Praying for the OT appt and Jonah's continued progress!

Also praying y'all have an enjoyable holiday weekend!

Anonymous said...

YOU CRACK ME UP!!!!

Kim M said...

I loved reading your random thoughts! Know I am in Michigan praying for the OT appointment today. You are a wonderful mother and I am glad that Jonah is learning to communicate that with you! Hang in ther girl - we are out here praying and cheering you on!

Laura A said...

Great post, Patrice! Glad things are on the "up" for now, and will be praying today for the OT visit.

BTW, my oldest, Caroline (9), is planning to draw Jonah a picture, so will send it as soon as that happens. I showed her Jonah's story last night and she (like all of us!) fell in love with him!!

Can't wait to hear how things go with the OT - continuing to pray!

Love,
Laura

Missy said...

We'll be praying things go well at OT. And Alaska sounds amazing! :-) BTW if you have a second please stop by my blog because you won an award! I know you don't know who the heck I am but you've really encouraged me through you journey! God bless.

Sal said...

Hey Patrice, it's Sandy from college! I always just read your posts, but today something caught my eye I should respond to. If you guys wanna go on vacation...I LIVE in Alaska...at least for the next 2 years and I'm expecting, Jonah will have a little buddy to play with...:-)

Peggi said...

Check out this site http://www.ebinfoworld.com/hands.htm. It shows how to wrap hands so that each finger is wrapped seperately. Not sure if Jonah is too young or not. A while back someone commented about wrapping and left a site to check out. It had great wrapping techniques also.

Anonymous said...

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

Liz Beall said...

Hi! My name is Liz and I have been reading your posts with great interest for a while now. I have a daughter 10, Lucy who has RDEB. Your story has brought back so many memories from Lucy's first months and I can totally relate to much of waht you have been going through. I just wanted to comment on the wrapping the hands issue. I kept Lucy's hands completely wrapped until she was a year old. She looked like she had boxing gloves on! I have a degree in child developement and 2 older kids with fine motor skill issues and was very concerned about my decision to keep them wrapped. I am so glad I did because it spared her so much injury both to her face as you have said but also to her fingers. She has had absolutely no problems with her fine motor skills.She has had no developemental problems at all. It was a good decision for her. Sometimes with EB you have to throw out all the rules. Hope this helps a little!

dragonflyz in June said...

I am so happy to hear that things are going so well, my son sometimes pulls the same sleep tricks on me and I am so zonked the next day, I KNOW how you feel ;-)

I had clicked on a link that a commenter left once and it gives tips on how to wrap the hands to avoid the thumb pulling in and to keep the fingers straight. Here it is...

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

I hope it helps with Jonah's hands!

Michele said...

I didn't realize Jonah has a small head. Do they know why it is so small?