Friday, April 10, 2009

all over the place

Jonah did really well tonight, and has for the last few nights. Hopefully we're getting into a routine that suits him. I still can't imagine how it will be when he's off the drugs, but we have plenty of time to pray about that. :) They are planning to do an auto-wean off the morphine and Ativan, just letting him outgrow his dose. But before we left the hospital, I asked at what weight we could discontinue the morphine (a weight where it would no longer be having an effect on him and we could quit cold-turkey), and they said 26 pounds!!! 26 pounds??? I'm going to talk to the pediatrician about weaning him off over time before that. I don't want him to be on morphine for a year. I thought we were talking a matter of weeks or months... not a whole year.

His last couple of feedings he's eaten a little better, so please pray for that to continue. It's hard for him to get healthy and have the energy he needs if he's not eating... which I guess is the case for any baby, but is especially hard for an EB baby since they need so many additional calories to stay hydrated and nourished. Thankfully, he doesn't have tons of blisters right now, so hopefully he's not losing a ton of fluids - or at least not as much as he could be if his blistering was worse.

He continues to be extremely stuffy and still has a very hoarse cry. It's the most pitiful thing.

Did I mention the mitten thing was a COMPLETE DISASTER??? His right hand was completely healed, so we just covered it in a mitten a couple nights ago... all with the hopes that he would be able to free his fingers and use his hands a little bit. The next day around midday, we checked on the hand (I could see drainage and blood coming through the mitten). His hand was completely red and swollen all over. His fingers were huge and had blisters across the knuckles and between almost all his fingers. His whole thumb was basically one big blister. I don't know how to let him move his fingers and work his hands some without him tearing himself up. Mittens are apparently NOT an option right now. It was so sad and disappointing.

I wonder if he'll have to be SO bandaged his whole life. His arms and legs look great, but if he's not protected, they'll blister. I can't even imagine when he starts crawling and walking. I'll be excited to hear everyone's ideas when the time comes. I'm sure you EB folks have come up with some creative stuff. You always do! I would like some suggestions for EB baby hands - is there any way to give him a little more freedom and range of motion without him causing so much damage?

On a side note, I LOVE Target. Random, I know, but seriously, I LOVE Target. I can never live in a place where there's not a Target within 10 minutes. Walmart will not suffice. It's go Target or go home. No substitutes. I think I could buy everything on their home decor aisle... and their baby aisle... and their scrapbooking aisle... and their furniture aisle... and their picture frame aisle... or not, whatever. (My love affair with Target may or may not have gained a certain desperate intensity after being cooped up for many a day - Can you guess where we did our Easter shopping today?)

Our friend Melissa has spoken with a pharmacy here in town and we are able to get a case of Aquaphor (12 tubs) for $140. That's 11 something a tub, which is much better than buying it from Walmart (the cheapest we've seen it on the shelf) for 14 something. We're also working on getting Eucerine to donate some. They have a program where they will donate a case for medical use every 3 months. That's in the works. I think a case will last us about a month, but it's really hard to know until we've been home for a while.

Matt's Aunt Katherine's friend Heather has graciously offered to design our birth announcement for Jonah. She's also giving us 150 FOR FREE and letting us have the digital image if we want to get more printed off. Check out her website if you are in the market for a super-cute announcement of any kind. SHE IS AWESOME! We're putting the final touches on it. I'm so excited. ADORABLE.

Here are some pictures from last weekend I never got posted.

(Sorry this post was all over the place)

Cute Ainsley
Ainsley's first picture with Cousin Jonah. Very intrigued with the diaper change (which also happens to occur on our dining room table - where else?).
Asher's first picture with Cousin Jonah.

Peyton, Asher, and Ainsley with Jonah. (Affectionately known by Ainsley - and now the rest of my family - as Jonut.)

Jonah and Daddy visit Gabe.

Aunt Amy rocks Jonah.

Uncle Peyton rocks Jonah.

Feeding the ducks and geese at Gabe's spot.


Lucy and Ethel said...

If it's any consolation, being 'all over the place' is the sign of ANY new mom!!! Or old, for that matter.

I know you're aware that you and Jonah are in the prayers of many, but you will never grasp how far-reaching your impact has been!!! Pretty far-reaching.

Hugs and prayers for a quiet night of good sleep -


Anonymous said...

Happy to hear Jonah's dressing changes are getting better; I am sure it is trial and error, but sounds like you are settling into a good routine. Jonah looks great...he is such a sweet, beautiful baby! You gotta get strong - keep drinking those bottles, Jonah :-)

Annapolis, MD

The Mind of a Mom said...

Thank you for sharing the great news about Jonah.
We don't have target here in Canada but I live very close to the border and try to cross often and when I do the first place I head for is Target!
Oh and as for all over the place, I am so there and her and over there... well you know what I mean. Really now-a-day I am just a bank machine with a GPS on wheels. You will know what I mean some day and that day will come faster then you wish for!
Take Care and Have a great rest of your weekend

Katherine said...

Patrice, They are building a SuperTarget a mile from our driveway. My checking account is very, very afraid.

Mae said...

Just found your blog tonight. And wanted to say that I am adding you and Jonah and your family to my prayers.

Anonymous said...

glad to hear he's doing better. Target is awesome and so are you!! The pictures are so sweet. Have a good Easter weekend. Jonah's first Easter...YAY!!

Beth said...

It is ok that you are all over the place! I think it is a badge that us Mothers, especially new Mommies, get wear! :) And don't get me started on loss of short term memory...scary really!!

Regarding Jonah's little hands. I have heard of burn patients wearing Juzos on their hands. Not sure if they would be helpful for Jonah, but just a thought. I read about them on Stephanie Nielson's blog, the Nie Nie Dialogues, on one of her January (?) posts.

Praying that dressing changes continue to go well and that little Jonah takes those bottles!!

Laura said...

Don't feel bad about your table being used for mulitple purposes. Our kitchen table was also used as Eli's changing table, holding clothes as well, for the first couple months of Eli's life.

I know the mitten experience was heart breaking, but you'll get them looking good again. You've done it before and you'll do it again.

You all continue to hold a special place in my prayers.

Laura S.

lisa and kids said...


Penny said...

So happy the dressing changes have gone better. I hope that Jonah starts to be less congested and is able to eat better.

I wish I knew something that would help you with Jonah's fingers. It must be heartbreaking to see the blisters pop up.

Stacey said...

I love that, Jonut, is too cute!!

I am glad that dressing changes are going good and I'm sure over time they will go even better.

I am with ya, sista! I love Target too. I just bought my girl's Easter stuff there too! So GREAT!!!

I will continue to pray for plans as to how he can use and exercise his body when he isn't covered. And I will pray for his pain level too.

Take Care and have a great EASTER!!
He is risen!!


CinderellaMommy said...

Holding you all up in our prayers!


Anonymous said...

I live in Pinehurst where there is not a Target, and it is a REAL hardship in my life! :) Wal-Mart just does not do it for me. I have to drive up to Apex periodically to get my "fix," and my husband is very afraid of these days! Praying daily for you all and sweet Jonah!

Anonymous said...

Patrice..I have nothing to offer in the way of advice or tips on the care of precious Jonah...but I want you to know that I pray for him many, many times everyday. I love that precious little fellow and oh the lives he has impacted already!!!

Anonymous said...

I know you have heard this but every child with EB is unique. It falls to trial and error to see what their skin can handle. Your glove story reminded me of last Easter. A (non EB) doctor suggested we remove some of our four month old son's dressings because he, "looked so good". We reluctantly followed his advice and by noon on Easter Sunday he broke our in horrible blisters and was screaming in pain. We learned two things through the experience; First that we needed to go very slow in making changes in his care, second, we needed to go with our instinct and not be swayed by any physician (friend, co-woker,relative, blog reader, etc...) that might think he knows our child's EB better than us. Your doing a good job. Keep him fed and hydrated, keep a very close eye on his breathing (our son had the same hoarse voice and noisy breathing and it was an EB related airway problem that was very serious) I don't want to scare you - just be wise and follow your best judgement. I belive God will give you the wisdom you need to do a great job of caring for your son. Have a Blessed Easter.

Barbara and AJ (RDEB 15 months)

Junior said...

I just found your blog and Jonah is such a precious little boy. Keeping your family in our prayers. God bless

brandie said...

Great post, your spirits seem to have been lifted some! I feel the same way about Target, and my husband can't quite understand! Bummer to hear about the gloves not working :( I have been curious about the bandaging, if he will have to be forever.
Good luck with his feedings and have a blessed Easter weekend!
In my prayers

The Peoples Family said...

I know you hate to even have to think that this might be a possibility but have you considered that Jonah might be allergic to the dog. Our son was constantly stuffy and tests showed he was allergic to cats. Our puppy had already gone on to puppy heaven and now we had to have Grandma and Grandpa take our cat but we did it because it was best for our son. I hope he clears up but just thought I would mention it since he seems to have gotten stuffy since coming home.

Lucie said...

I have never been to a Target!!!
They don't have them here...
Now I really want to check one out!
I hope Jonah feels better soon-
my son used to have bad reactions to dogs as an infant- do you think
the stuffiness is a cold or allergy?

Erin Hingley said...

So sorry about the mitten, Patrice. I was rooting for him to be able to have his hands free as well. Praying that he'll keep up his appetite...thanks for sharing those wonderful pictures. I loveeee Jonut!

-Erin in VA

Katie said...

Target... it's my favorite. :) That's one of my biggest concessions with this moving thing. I will be leaving a place where we are 3 minutes away from Target to being about 15 minutes away. It hurts me. Of course, it is a Super Target. That's gotta count for something, right? But, one positive about the move is that I'll be an hour closer to you. :)

Melissa said...

Glad to hear things are settling into a routine! Loved the pictures...those are too cute! Ya'll have a great Easter...

Amber Schmidt said...

What a beautiful family you have! Jonah continues to be cuter with every single picture! Happy first Easter Jonah!

Michelle said...

although i know nothing about the particulars of EB, i AM a chronic pain patient.

have you thought about using methadone for jonah's pain? it's a VERY powerful narcotic, BUT it doesn't have the usual side effects - i.e. mood changes, etc. - and it keeps pain medication in your system around the clock. if you took it for immediate pain, it wouldn't help much - for me, it's every 8 hours, pain or not, to keep that in there.

then i have other meds for breakthrough pain - in Jonah's case, morphine & ativan.

just a thought for long-term. :-)

- michelle

Anonymous said...

Costco sells Aquaphor in the big tub behind the pharmacy counter for around 12 dollars.

Anonymous said...

Okay, this looks like it would take forever and I'm not sure how it would work on an infant, but here are detailed EB hand wrapping instructions that allow for finger movement.


Cathy said...

So thankful he is eating better. Will pray specifically for his nourishment. Praying that you continue to get your nourishment and rest to keep up. And YES, can't agree with the Target or go home thing. I don't even think of entering the Wal-Mart for anything.

RLR said...

Love this post - the photos, the stories, and that it's 'all over the place.' Many of mine are like that :)

"Jonut" - haven't heard that one before! So cute!

Sandy said...

I love the picture of Matt and Jonah visiting Gabe. . . heart wrenching but precious.
Hope you all have a blessed Easter. HE'S ALIVE!
Prayers and Hugs,
Sandy Moore

Michelle said...

So sorry to hear about Jonah's poor hands. Poor guy :( I guess you wouldn't have known that would happen without trying it first. Please know that your family is always in my prayers.

BTW, I had to laugh at your Target comment. LOVE Target, can't stand Walmart. You're right, nothing compares!!

Rebekah said...

Hiya. Can't remember how I found your blog. I went to middle school and high school with a young lady with EB and I have a dear friend who has adopted and cared for three children with EB (there was a documentary made about her family -- "Flesh and Blood").

Anyway, my son has cystic fibrosis and not EB, but when he was an infant he needed special formula and other equipment that was not covered by insurance. Here in CA we have a program called California Children's Services (CCS) that, once you apply and are approved, pays for stuff like that which wouldn't be covered by insurance. It is wonderful. If you have something like that there perhaps it would be worth looking into for the Eucerin or Aquaphor.

Another thing we did was get samples from the pediatrician. He and his partners saved all of the sample cases of Ricky's kind of formula that came in and gave them all to us. Perhaps, if they're not doing it already, Jonah's doc(s) would consider doing that?

Hope you don't mind my suggestions. Be sure you take care of yourself, too (easy for me to say, sitting in a hospital room with my son). You are doing so well! I'm way impressed. :)

Jennifer said...

The URL I gave you a couple weeks ago has a few pages on bandaging...

here it is again:

Erin Edwards said...

Aquaphor will donate a case of Aquaphor, Eucerin, and Aquaphor Baby Wash every 3 months as needed & if your doctor writes a letter. We did that for a while. It really helped. We still had to buy it, but not as much:)

Anonymous said...

Hey honey, I just wanted to mention that you can call aquaphors distribution/main office and request orders just like a store would. There is no reason you should need to buy so many off the shelf. Cut out the middleman (Target), and buy direct for little Jonah. With anything you will use in bulk for him, you should be ale to make a few simple calls and get it done.
Hope that helps!
And I was prayign for his little hand, and wanted you to know that trial and error is part of parenting. Dont feel bad, you have to try and progress! There was no way to know mittens wouldn't work. Keep up with the ideas, you will find things to fit him.
And he will outgrow the "fisting" soon, and have his hands open up more, so mittens may work in a few months! He will gros, not be so crumpled together, and with his body growing and stretching, you will see less and less rubbing.
God works mircales, but sometimes it is not on our time schedule. Jonah will make it past these days and he will be a strong young man with a friend in christ because of this.
Good luck to you guys, we are praying for you always!

vanettens said...

Hello! My son has eczema and I also use Aquaphor. I'm not sure where you live so I'm not sure if there is a Bed Bath and Beyond near you, but if there is one with a pharmacy section, you can buy Aquaphor there and use a 20% off coupon. If you also have an Aquaphor coupon you can use that along with the 20% off coupon. I'm not sure if you can do that online, but if you can and you don't get coupons where you are, I would be happy to mail you some. Also, someone mentioned an allergy to your dog and my son is allergic to out dog and also gets a very runny nose when he is around her. Keep up the good work!!

Anonymous said...

Hi Patrice,
The person who suggested the special EB hand wrapping is correct. You can find it on the DEBRA sight it is called the ABC hand wrapping, it looks confusing at first, I can not tell you how many times I watched it until I finally got it.It does take a little time to do but well worth it so he can have movement. One thing they do not do on the video that I did when she was smaller is wrap each finger with 1" vaseline gauze with alot of aquaphor on it to keep them moist. We keep Alyssa's finger tips out so she can have the sensation of feeling things.
Good Luck..
Grandmother of Alyssa 9 months RDEB
China Grove, NC