Saturday, September 26, 2009

weekend update

This will be quick because it's my night tonight, and I don't want to be up too late.

After dressing change today, we fed Jonah, took showers, and went out to the mall. It was rainy and gross here, so although I would much rather be outside than at the mall, it was a one stop kind of place that killed lots of time. Aunt Kim is here (all the way from NY!!!) this weekend, so we had a great time getting out and about with Baby Jonut. Bad news, though. Apparently the new car seat is just as bad as the old one, because as soon as Matt got him hooked in, GUSHER. But thankfully, he caught it all in a cup. Disaster averted. What can I say? Matt's always been very athletically inclined. True, he never thought he'd be using his mad skills in quite this capacity, but all the same, I'm thankful he's a baller. Nice Catch, Mathew! I mean, Matthew. Ahem.

I was a little ticked before we left because we couldn't get Jonah to eat any substantial amount. He only ate two and a half ounces, so I knew we were going to have to do an "out in public" feeding (which, if you knew what it was like to feed him, you'd understand why that scares me). And THEN he gushed it ALL. So then I was really ticked. But he got really fussy around four, so we found the feeding area in JCPenny you guys told me about, and he ate better than he does at home. Go figure. He fell asleep while he was eating, which was good, except that the toilets flush REALLY loudly in the bathroom next door, so he jumped out of his skin and started screaming. So then we had to move from the feeding area to the lobby outside of that, and I got him settled back down. I actually like the lobby area better because Matt can be there with me for an extra set of hands.

He, yet again, was an angel. He loves being out... when we can actually get him to eat and not gush enough to get out.

Anyway, I got him lots of new onsies (I only had six he could wear, and as much as he's spitting up, we were going through ALL of them in a day), and a couple Wake onsies for basketball season. (Matt's parents got us season tickets for an early Christmas present! Woohoo!) It was a very pleasant, successful trip, and that's saying a lot considering how I typically feel about the mall. It was really crowded today, and we definitely got lots of stares, several dirty looks, and one "What happened to the face?" but I guess we're just going to have to get used to that. I don't mind the looking, but I do mind when the looking turns into staring, and when we get the judgmental "Why did you let your child hurt himself?" look (aka "You're a bad parent" stare), I really have to hold myself back.

But just so you know, those people are lucky I don't kick their teeth in.

Err... Um... I mean... I put them on my prayer list, naturally. Yeah. That's it. That's what I meant to say.


Toni :O) said...

People can be so cruel. I'm so sorry it's incredibly hard to just *go to the mall* with your sweet boy. My heart aches that you have such difficulty with that. Maybe it's the type of formula? If you switched to one that might be easier on his tummy or would that not really matter because reflux comes along with his skin issues? Just wondering and trying to think of things that might make it easier on you. Have a good rest of the weekend with your sister...always in my prayers and sending you lots of hugs (( )) (( )) for support.

Tracy said...

Glad you got out and about today. Does a mind good to get out of the house!

Peoples looks can be rude, I have a child with autism and I get the "your'e a bad parent look" quite often, it stinks. But, I always think the people that really matter to me know whats really going on and try not to worry about what strangers think (easier said than done though)!

Katherine @ Grass Stains said...

When Nathaniel had to wear the helmet for 6 months to fix his plagiocephaly, I was very surprised at the number of people who felt free to comment and ask questions. For the most part, they were gentle questions and genuine curiosity, but there were also some REALLY rude people who just said the most off-the-wall things. I fervently hope that the more you get out, the more you find the first kind of people rather than the second.

Give "Mat" a hug from me. And can't wait to see the Wake onesies!

Anonymous said...

So glad you got out,hope your 'peeps' from TARGET didn't see you!
Wish I had an answer for the gushers. Really glad to hear about the basketball tickets. Hope to see you there.
prayers always,

Amy said...

Maybe you've found a new trick...when Jonah refuses to eat...go out and try again. :) Maybe he's just a natural people person like his mama.

I almost put another smiley face, but stopped myself.

Laura A said...

Hi Pattrice- um,er I mean Patrice!

Congrats on the Wake tickets - what an awesome gift! As much as my hubby loves college football, my heart is with college hoops! I hope you'll be able to get to lots of games.

People can be so ridiculous - I'll pray that those types of incidents will be minimal. I'm glad you're getting Jonah out, though - gushers and all!

Hope your night is an easy one - and that you can keep your PJs up. Am STILL laughing at that one!!

Love ,

Stacey said...

I'm still laughing! It's great that you got out today. Unfortunately, strangers can be so ignorant. Like Tracy, I have a high functioning autistic son and I've gotten some weird stares. I even had a stranger call my son a brat and needless to say it made the situation worse and of course I wanted to say something...fortunately, I was able to hold back my feelings. Before coming across your blog a few months back, I never knew of EB. Although I will probably never see you and Jonah at Target in CA, your posts have helped to educate me and if I ever saw another child with EB, I'd know exactly how to respond. =)

Anonymous said...

Like the last part...funny!

It's a shame how judgemental people can be but that is life. Maybe Jonah will teach them a thing or two.

Would it be possible to somehow lay a towel across Jonah and tuck it in the carseat to catch the gushers or would that be one more thing to irritate his skin?

Hugs and prayers!

M J said...

I can only imagine the dirty looks. My oldest was born with a strawberry thumb and people were always asking me what I did to it. Because yes, I was going to bite my little girl and give her a blister. Grrrrrrrr. Makes you want to put a sign on it. Glad you got out, though. I know it does wonders for the way you feel just to get out of the house!

Christian said...

So I've spent the last two hours re-reading your blog, once again reminded about how far your baby boy has come, and what a miracle it is that he's been so healthy. God is amazing and has His hand on little Jonut. Never loose sight of His faithfulness. Much love to your family!

Claire said...

Laughing a tonne at the Mathew/Matthew quip!

I'm so sorry people are like that, honey. They'd make me mad also, and I'd have to put them on my prayer list (or fantasise about kicking their teeth in...).

Praying for you guys as ever.


Erin said...

you crack me up..i would want to kick someone in the teeth also...that is awesome that you don't let people keep you from living ya'll's life the way you want too..prayer, blessings and much love~erin

Ebeling Family said...

I am SO glad you got got get out. I'll keep prayin' for the little man that he keeps his food down. It'll happen!!

vanettens said...

So glad you got out! When my son has allergy symptoms (not that I'm trying to compare allergies to EB, you win hands down:) I feel like making a shirt/sign that says "I HAVE ALLERGIES!" because people should not judge, they have no idea what the people they are giving dirty looks to go through at home. I went to the mall yesterday too but mine was in Florida... it would have been awesome to run into you, no dirty looks from me:)

Katie said...

I went to a store called Buy Buy Baby yesterday and they have all sorts of onesies and jammies that all have the seams on the outside. I tried to memorize the name, but of course I forgot it. Anyway, they are made of organic cotton and they might have them on the website. With all of Ella's padding we've never had problems with seams, but I know a lot of kids do, so these might be something to look into.


Lisa said...

We had a child with severe eating problems when he was a baby (had an ng tube until over a year) and we found that he ate best under the most distracting of circumstances, like at the mall. We also found he loved the show The Golden Girls and if we got to feed him during that show he would take 15-30mls instead of 5-10 culminating in a gag and projectile vomit session and any cartoon with lots of flashy scenes. Babies are amazing though and our son grew even though he was vomiting up what the doctors calculated to be 80+% of what he took in because of his congestive heart failure.

Wanda Wilkinson said...

Happy 7th month birthday Jonah!!!!!!

Learning about EB & watching Jonah grow (through the pictures you post) has opened my heart to acceptance of others.

When I look at Jonah all I see is a handsome blue-eye miracle boy..Jonah is ADORABLE!!!

Glad you got out & glad that you had family visiting.

Enjoy the b'ball games..I'll be looking for you when I am home watching tv.

Hope you have a great weekend.

sending love & prayers

Amanda said...

I'm so excited that you guys got a family outing! Ten points to Mat*t* for catching the gusher in a cup (those are some mad skills right there).

Sorry for the stares. Just wait until Jonah starts talking and exhibiting his momma's sarcasm. ;)

Pam, mom, honey, said...

People are cruel and honestly just ignorant. i say you start handing out business cards with your blog address. i see the love you have through your blog. then you attach a site that explains his condition. otherwise hold your heard high and know this is your blessing and you are a great momma.

Shosh said...

people are so rude. but glad you had a good outing anyway!!

Anonymous said...

So Happy you got out, and as we both know you are sooo NOT a mall girl !!! You have to set aside the looks and whispers of strangers and know how very loved and perfect Jonah is in the eyes of those who love him, and most of all in the eyes of his heavenly Father, he is beautifully made. Missed ya at church, get out and enjoy this beautiful day. tell Kim I said hello.
Always Praying for Healing
Love Gina

Anonymous said...

So do you have a really easy quick answer for the one liners people give/ask? It must be hard not to go into a huge explanation. Maybe you could have little EB moo cards (through flikr) made up and pass them out so people could look it up at home and donate to EB research!

I guess you may be taking some more trips to the mall regardless, since he ate pretty good!

Anonymous said...

So sorry for the gaulkers in your outing. I am sure most of them have never seen a baby like Jonah. I am sure that I WOULD kick in a few teeth so your restraint is admired. So glad you got out though! That's the main thing.
Jennifer in Southeast, NC

Laura aka Mama Ham said...

People can be really hurtful sometimes without even knowing it! My son was born was some dysmorphic features and sometimes people stare at him and even ask me what is wrong with him, or gosh, he really needs a nap - he looks so tired in which I quickly reply, no, he's not tired and nothing is wrong with him, in fact he is perfect - just like God made him. That usually does it - people don't know how to respond to that so they just leave feeling guilty and hopefully the next time they come across another child who doesn't look "normal" they will think twice about making a comment!

Kim and Asa said...

Yeah for the cup!!! I'm so sorry you need a puke cup but I'm glad it made your day easier!

I took my Asa into the church nursery with his cup today....just in case, although I'm pretty sure he was empty by the time we left the house! Anyway, nothing says "watch my baby" like handing the nursery worker a puke cup! :)

When I started nursing with my first child....12 years ago!....I used a few public restrooms, then I got disgusted! I started using the dressing rooms! Plenty of room and quiet. It is pretty bright though so may not led to napping! BUT, much, much, nicer than the restrooms!

My son has a feeding tube but still takes a cup sometimes. He is usually tough to feed! Half the time a distraction is good and the other half he needs calm and quiet! Who can figure it out!

You are in my prayers!


Krystal said...

Glad you got out...don't worry about what the other people think. Keep your head up, looking towards God. He gave you this so that He could see you through it. Trust in Him, and maybe, He will use this to turn others towards Him!

This is me.. said...

Love your sense of humor, it keeps me coming back for more. And love the photos of your precious boy. You sound like fantastic mom who has managed to make the best of a not so great situation. Hang in there.
Love your blog,

LV said...

I have read your beautiful blog for quite sometime. You have such a beautiful family. I do have one suggestion about the covers for the straps for the car seat. Can Jonak tolerate sheep skin? I have been a nurse for a long time and we used this for our patients all the time. Like others have suggested about formula is Jonah milk intolerant? Enfamil make this kind that AR behing it. It get thick when you mix it up. I have some nephews who had this same problem with gushers and this formula worked like a charm. Hope this helps.

Jill said...

I'm so happy I have found your blog and have been reading since Jonah was born because if I ever see a baby whose face looks like Jonah's I can walk up and say, "oh what an adorable baby!! Does he have EB? I know all about that disease, I'll pray for your family. Have a nice day!" And hopefully that family will be pleasantly relieved!

Anonymous said...

I read your blog faithfully and am absolutely amazed and awed by your spirit.

I would like to suggest that you have a button (badge) made for Jonah that says something like "I have EB. I am NOT injured. Please smile at me."

I have a disability and sometimes wear a similar button when I am in public. I just point to the button when it seems that people are being judgmental. It has turned many unhappy interactions into actually nice ones.

Vicki in Tennessee
p.s. You and your husband really are amazing people.

Caleb and Emily's Mommy said...

Have you tried the large crumb catcher bibs to help soak up the gushers? I found some at Wal-Mart. They are large vinyl material bibs with a big pocket to catch messes. They button in the back so there is no rough velcro to scratch. They aren't very tight at the neck so it might not irritate Jonah's skin. My daughter spit up a huge amount the other day and it caught all of it and prevented a really big mess. Good luck!

dg darling said...

Just smile real big and kick em in the shins!

Linda said...

Hi Patrice:
I just ready your blog again and I am so glad. You are such a hoot and make me laugh. I liked the comment about the ignorant people staring at Jonah. One of your readers suggested a button saying I have EB, I am not injured, smile at me. I like that idea. Maybe we can try that with Leah if we ever take her out. With the trach and everything, it's a little hard for Meg to take her out. The button idea is neat. Take care Williams family and Bless You. Love Leah's grandmother