Monday, May 11, 2009

answers, part 3

What kind of clothing does Jonah need / can he wear?
My friend Kathryn's mom, Jeannie (who is also my friend), sewed Jonah some satin lined shirts. He can wear regular pants because between his diaper and his leg bandages, they don't directly touch his skin. He could probably wear most things if I did a halter bandage around his neck, and then put a onsie on inside out under the outfit. The only problem is that it's already getting pretty hot here, and three layers when it's 85 degrees out certainly doesn't help Jonah stay cool. So... what I'm concerned about are the seams under the armpits (one of the few places not bandaged) and around the collar. Every where else is pretty much covered with bandages. That's why I've been putting him in those little overalls with no shirts. He could wear anything if it was lined with a soft material, and no seams would be touching his skin. I may get more brave and try regular clothes with just the halter bandage (without the onsie inside out), but so far I'm not there yet. I figure I'll just look out for more of those overall outfits and let him wear those shirtless to get us through the summer.



What will we do when Jonah starts crawling/walking to protect him?
Um...Er... I dunno. I'll have to educate myself and defer to the EB pro moms on this one. I'm sure - just like anything with Jonah - it will involve some creative problem solving and layers of padding. Probably no matter what we do, he will get banged up. Maybe a couple layers of bandaging with soft tube socks over his knees to hold them on? I'm so flying by the seat of my pants these days... crossing those bridges when I come to them... (and other such cliches to tell you guys that I don't know what the heck I'm doing...)

Will EB affect his diet as he gets older?
EB can very much affect a person's diet, although with Junctional I don't think this is as likely as with Dystrophic. Junctional doesn't usually affect the esophagus (I don't think). He will have very weak enamel, so is likely to have many dental issues as well as blisters in his mouth, so in that way, it could affect his diet. The mom I go to for all my info (her daughter has Junctional non-Herlitz and is now three years old) says she can eat most anything, even taco chips if she softens them in her mouth before chewing and swallowing. I'm encouraged that Jonah hasn't yet had to have a g-tube (like many JEB kids do), and hope this is a good sign as far as what his esophagus and stomach are able to handle. I think the bigger issue affecting his diet will be blisters in his mouth and weak teeth.

What kind of dog do we have, and how is he dealing with all the new change?
Deac is a Lhasa Apso. He is four years old and pretty much the BEST dog you could ever ask for. He comes when you tell him to, stays when you tell him to, and if you say, "Deac, stand up for Jesus," he'll stand up on his hind legs (thanks to Grandaddy). He's having a rough go of things right now. Not that he's being bad or anything, but he's just being super needy and always lying right under our feet. A couple times (I posted a picture), he jumped up on the rocking chair with me while I was feeding Jonah. And believe me, the rocker is not that big. When everyone now talks to the new kid the way they used to talk to you, I imagine it's all pretty confusing. I feel bad for him, and we try to show him plenty of attention, but it's tough to convince him that things are like they were... because they obviously aren't. I think he will come to love Jonah as he gets older, and they can play together.

How did we choose Gabe and Jonah's names?
I think Matt's dad was the first to mention Gabriel as a name choice. Then, when we looked it up and it meant "devoted to God," that kind of settled it for us. I always like Bible names, but not the ones that are so common. I also liked that Gabriel works in Spanish and English, as it was my hope that I would speak Spanish to him from the beginning, and he would be bilingual. Jonah we also chose because we liked the fact that it was a lesser used Bible name. I didn't think Matt would like it, but was going through the baby book and suggested Jonas. He said he preferred Jonah. I said that I did too. We had a couple other names we were considering, but we settled on Jonah within a couple days. It was really important to me to name him early in order to help me with the bonding process. I had a really hard time the whole pregnancy letting myself be hopeful enough to imagine we'd be bringing a baby home. Calling him "Jonah" instead of "the baby" was really instrumental in helping me separate him from Gabe and helped grow the bond I was not letting myself feel.

Speaking of Gabe, I'm really missing him tonight. I was just looking at their pictures at the top of the blog and thinking how much they look alike. I get sad that I can't imagine Gabe as a one-year-old, but can only picture him as the newborn I have pictures of. I've been frustrated today - Jonah has been high maintenance, dressing change was extremely hard tonight, in an attempt to get boogies out of his nose so he can breathe and eat, I pulled some of the skin lining his nose out... etc. I'm just feeling a little overwhelmed. I'm tired. I know tomorrow will be better. But in these moments of weakness, not only do I feel guilt (although I know irrational) for feeling frustrated with Jonah, I also think of Gabe. I wonder how in the world I can feel irritated with Jonah when I lost all my time with Gabe and begged and begged for Jonah to live. I miss him so much and love both of them so much. And I just wish I was good at showing it all the time. I feel like all I want to do is make him proud of me, and I fail over and over again. I need to get out of the house. :)

I wrapped Jonah in his miracle blanket tonight. His great Aunt Melanie gave it to him, and I've yet to try it, just because I wasn't sure he could be swaddled. But most of him is bandaged, and the seams aren't thick or rough, so I'm giving it a shot. He's getting really strong with his arms, and although he's wearing satin mittens over his bandages, he's really wacking the crap out of his face. It's my attempt at preventing further blisters. He's face was healing up really well, but yesterday, he started getting a lot of new blisters around his eyes and forehead.

Maybe it will make him sleep all night??? (yeah, right)

I'm going to pretend. If I go to bed right away, I might can get four hours of consecutive sleep. I need about 48. Seriously, I'm pretty sure I could sleep that long.

43 comments:

Laura A said...

Hang in there, Patrice! I appreciate you being so open and transparent about things that cannot be easy for you to share, especially with people you don't really know! But am glad you do, because it helps me to know how best to pray for you and Matt and sweet Jonah.

Will pray for peace for you as well as rest. It's amazing what just a little extra rest can do for you (even if it's not all night yet!) And am always praying for Jonah's healing.

Love,
TX Laura

mrs. mari said...

i'm praying you jonah and your family daily. praying. praying. praying.

all i know, from your blog, is that you are a strong, loving, caring mommy to your precious jonah. i appreciate your being so honest here so i know how to pray for you all.

blessings, mari

Rachelle said...

Hi Patrice. I hope your miracle blanket helps! We are using ours for the first time too! (on our 6 week old boy, Eli). I just want you to know that a lot of what you are feeling is sooooo! normal for a mommy, especially the mommy guilt and exasperation. I can imagine that you experience it tenfold compared to moms of children who are not struggling with a difficult disease. PLEASE cut yourself some slack...you are doing a great job! Remember God is with you wherever you go, even if it is the land of booger picking, arm wrapping, satin mitten dressing, mommy-ing. HE is guiding you and we are praying for you and Jonah! Hope you get some much needed rest.

Love,
Rachelle (Nicole's sister)

Just'N Angel said...

I'm sure you know that the lack of sleep doesn't help your mental state. However, I also know you wouldn't trade this time for anything in the world. I know you will make it through this tough time and will find ways to cope with all Jonah's needs. You are doing a great job! Still praying for you all.

Granna said...

I just want you to know you are doing a great job with Jonah. Your complete love and devotion to him are obvious. Of course you get tired and down, any Mom does and you have a thousand more reasons to feel that way. I don't think I've commented before but I want you to know how cute and sweet I think Jonah is. I'm glad you had a good mother's day. Hope you get some good sleep tonight. Praying for you.
Love,
Donna from Alvin, TX

justcindy2 said...

Prayers being said right now for your overdue, much needed rest. Thank you for sharing honestly what you are experiencing. Every word you write, every struggle you share, every tear you let us help to wipe is for a reason. It may be just what another EB mother needs to hear, it unites fellow christians in their desire to lift you up in prayer, and maybe someday it will serve as a reminder of the strength you dug deep find to finally get you thru moment.

Rebekah said...

We all go through those feelings in one way or the other. I do know that yours are accelerated becaue Jonah has many more needs to be met...but my goodness girl....YOUR AMAZING!!!! I expect to hear that you are impatient with Jonah or that you are frusterated with him....shoot....I was frusterated and impatient with my three year old today. LOL It never ends as long as your a mom, but I think the sleep will get better because he is such a little tike still. I dont think I slept well for the first year. LOL You truly are amazing, stay strong and YES...try and get out of the house. I wish I could. I only get out to go to Walmart. LOL

Sara said...

just suggestion about his nose. Since a little skin came off, it would be a good idea to put a small amt of antibiotic in there the best you can. The majority of the bacteria on a person's body is in the nose and with an open spot, the bacteria could get in there and cause an infection. When my daughter was a baby she would get lots of wound inside her nose and constantly battled strep and staph infection in there!

You can use a q-tip to apply it or if he'll let you, apply the antibiotic to the opening of his nose and then gently tilt his head back or hold him upside down for a minute and his body heat will melt the ointment and it will drip into his nose! But I know much easier said than done with a wiggly baby!

As for crawling, I know some EB moms have used nursing pads as knee and elbow pads to protect those areas when crawling. Some EB babies never crawl and despite what anyone tells you that is OK!

A while back I did a survey among many EB families about developmental issues in those with EB and here are the results for those with Junctional that participated. EVERY baby with EB is different and Jonah may do things sooner (or later) than others with EB, but this is the average for those with Junctional surveyed to give you an idea of what to expect:

Junctional
The average age:

Rolled over:10-11 months

Sat unassisted: 8-9 months

Crawled: 22 months

Pulled to a standing position: 15-16 months

Walked: 26-27 months

Got 1st tooth: 9-10 months

Began sleeping through the night on a regular bases: 10-11 months

Length of hospital stay after birth: 62.4 days

Received some type of therapy (OT, PT, speech,feeding): 100% of those surveyed

Found it to be helpful: 100%

Suffered from reflux: 80%

Are lactose intolerant: 20%

Have/had a G-tube: 40%

Age they received a g-tube: 5.5 months

Issues with constipation: 20%

Thanks for sharing your days, thoughts and feeling with everyone!
~Sara
www.garrettshouse.org

lifelaughsandlove said...

I'm praying that the Miracle Blanket works a miracle for you! I've used it for both of my kids and it really does help them sleep better, although my 7 month old is addicted to it and we are desperately trying to break him of it. I'm pretty sure he is on the way to being swaddled well into his teenage years :)

You're such a great mom to Jonah and we all can get frustrated even under the best of circumstances. Lack of sleep really contributes to it for me, and it sounds like you are working on quite a deficit right now. I'll be keeping you in my prayers!

~Amy

as written by Barbara said...

Patrice...
... never had/nor heard of the "miracle blanket", but I'm sure it will live it up to the name...
... now: "rock-a-bye-Jonah's Mommy"!!!
Sweet dreams,
Barbara Lyman :o
Marysville, WA

Anonymous said...

Don't be so hard on yourself about your feelings.

It's okay to be fustrated about things and you don't need to feel guilty. All parents feel this at one time or another. No one is perfect.

Just cut yourself some slack and realize it's okay to feel what you're feeling. Even though your a Mom now, you're still a person with emotions & feelings. Times get tough, don't beat yourself up over it.

Alison said...

As mothers we ALL wish we were better at showing our kids how much we love them all the time. I don't know you personally but from reading your blog it sounds like you are doing a fantastic job with Jonah.

Debbie,mother of two said...

The Mother's Day 2008 was beautiful. God is so good. He can send things to us in so many ways.I am glad you had a good Mother's Day. Still praying for you all everyday.

Mindy said...

I completely understand looking for Bible names that are not as common. That is where we found the name Justus. Not many people know that we got that from the Bible. Justus was one of Paul's friends and is described to be a worshiper of God.

Wanda Wilkinson said...

What a great post..for some reason it never fails, you have you have a GREAT day (Mother's Day) and then of course the let down..back to the same routine. You have talent for letting your frustration out, so much better than keeping it inside. Hope Jonah slept last night so you can rest & sounds like a visit to Target should be on the schedule today.

I am following up on the medical supplies, will let you know when I hear something.

Take care, have a great day & lots of prayers are being sent your way.

By the way, what is a miracle blanket, if it helps you sleep then I need one...(ha!)

Mandy said...

Patrice, I have recently been following your blog off of a friend's blog. We live local to you and pray for you daily. Today, I am also thankful for you transparency. It is tough being a mother, when your heart is torn over loving the job and hating it. There are so many frustrations and so many moments that can lead to guilt. The great news is that we have been freed and rescued. Our Savior has no condemnation for us. There is no shame. We are loved for exactly who we are right now; even when it's not our vision of perfect. We will stumble as mothers, and thankfully there is forgiveness and redemption. He heals the brokenhearted and binds up their wounds. (Ps. 147:3) Just as you care for Jonah and physically bandage his wounds, the Lord binds yours. Rest in Him always. You are doing such a fabulous job! Jonah and Gabe are very lucky to have you to call their mother.

Channe said...

thanks for posting all the pics yesterday - you have a beautiful family! hope the swaddling helps both you & Jonah get some rest!

Claire said...

Patrice, I love how open and honest you are on your blog. All the things you are dealing with are so tough and you get them done so well. You're a true inspiration.

Cxx

Amanda said...

I read your blog every day, but never comment. I just wanted to say that my little boy slept through the night when we started swaddling him using something other than a regular blanket. We didn't have the Miracle Blanket, but it was the same idea. So you most definitely can hope! :)

Heather said...

I lost 8 babies to miscarriage, so when my daughter had colic & cried all the time, I was amazed at how frustrated & overwhelmed I got. You are only human, and you are doing such a great job taking care of Jonah. Sleep and getting out of the house helps a lot when you feel overwhelmed. I cannot imagine how much you miss Gabe, but I pray that God wraps His arms around you in comfort and gives you glimpses of Gabe when you need them. Praying often for Jonah, you & Matt. May God's blessings surround you, and may Jonah be blessed with blister-free skin in the future...praying that God will heal him.
Heather
Charleston, SC

Amy B said...

Praying that you have awoken with a new sense of love- God's love for you & your precious family, and most importantly- love for yourself. You are doing such a FANTASTIC job. My 5 month old drains me, and I, too, am amazed at how quickly I can snap at him (unfair, b/c it's not as though he knows what he is doing). And, you are right, you need sleep!!! It's so exhausting! I will be praying that you ignore the lies from the devil, and listen to the precious, TRUE, promises of our loving Lord & Saviour.
Peace, joy and rest I pray over you today... and a trip to Target!
Blessings & prayers,
Amy in WA

CastingCares said...

Praying for you today. All your frustrations are normal although many moms don't want to admit it. We can't wait to have a few minutes to ourselves. The kids are driving us crazy. Our patience is wearing thin. But then we get time to ourselves, and we can't stop thinking about our babies and how much we miss them. It is always easy to be patient when they are sleeping. :-) Just hang in there. Isn't it great that we get to start each day new.

Anonymous said...

yeah,i was so exicited when you said lhaso apso! i just knew he looked like my lilly. they are great dogs. my lilly stands and i love the standing for jesus idea. (i will get my dog to do that). miracle blankets are just that, miracles. i work with infants and numerous parents LOVE them. you can't beat yourself up all the time! you are a great mom and have so much love for your child. EB is difficult and you are doing great! you can do all things through christ who strengthens you. worry about nothing and pray about everything. i will continue to pray for you, matt, jonah, and for Deac.
much love from Arkansas
julie

Katherine Klegin said...

Hey There! I found your blog on facebook, and wanted to connect you with my friend Katie. She has a daughter that also has EB and she'd a be GREAT resource for you. Here is her blog... http://teamjoella.blogspot.com/

I have been praying for sweet Jonah and your family.

Michelle in Va said...

You are not alone in feeling guilty in feeling frustrated with Jonah. I am a new mommy myself and I can get so overwhelmed and frustrated with my son, who is 19 months old. He is healthy and has always been a good baby and I feel so ashamed of myself for getting frustrated with him b/c I know how blessed I am, I can't even imagine how frustrated you get with a baby with special needs. As my friends reassured me, it is so normal. As mommies we have ALOT to deal with. I pray for rest for you. Never doubt how proud your boys are of you- you were chosen to be these 2 sweet angels mommy for a reason. It is so obvious in the pics we see the adoration Jonah has for you. Keep your head up you are doing such a great job!!! Go to Target and enjoy yourself, and spend those gift cards on something for yourself, you so deserve it. Continuing to Pray for Jonah, you, and Matt. Much love.

Melinda in Ohio said...

I stumbled upon your blog through another blog. I have been reading your journey over the past few days and I am inspired. I would like to tell you that you are an incredible mother. Don't beat yourself up for trying to do what's best for your child. No one knows what's best for little Jonah better than you. I will be adding your family and Jonah to my daily prayers and have asked my church family to pray not only for his daily comfort, but for his healing. Thru God all things are possible. Your faith and love for God are truly beautiful. God knew what he was doing when he gave you your beautiful boys. Keep your head high and stay confident in your decisions and God's healing power. May God continue to bless you and give you strength. Depend on Him and he will pull you through. I will also pray that you get the much needed rest that you need. Jonah is adorable and truly blessed to have you for his mother.

Lorraine-bo said...

Sometimes it's so difficult to get our hearts to believe what our head knows, isn't it?! You are FAR from failing Jonah!

Good thing that the LORD is strong when we are weak.

You are darling! I pray the Lord provides an opportunity for you to have some rest (before Jonah is 18 :)

Stars in the sky said...

Just thinking about when Jonah is moving a bit more....have you seen the baby leg warmers? they go up mid thigh and you can still have bare feet. They fit snug and no seams, at least in ours. Was looking at ours and thought of you~

Anonymous said...

Patrice -

You guys are amazing! We continue to pray for all of you and can't imagine what you are going through.

Our son has multiple medical issues. When he was very small, I found some Gerber onsies that were like tank tops. Would something like that work? The arm holes came down a little lower, and obviously the neckline did as well. I will keep my eye out for some, and if I can find them, I will send them to you. I remember they were in a 3 pack at Wal-mart. I also have a link (somewhere) to a lady that makes adaptive clothing. I will get that to you as I remember that she somehow makes onsies/shirts with no seams on the inside.

God Bless!

Steph and Christopher in IL
www.carepages.com OurLittleMan

K said...

I've been thinking of your little guy and his wardrobe. I wonder if sewing baby-sized tubes out of panty hose, especially for his arms, and perhaps using surgical hose, would give his skin enough support to not need to bandage as much? I heard William Shatner's advice for making movies where horses are involved, is to wear two pairs of nylons. Apparently, the friction occurs between the two layers of hose and the skin is protected.

Jenny Hintze said...

You are such a strong, wonderful mother! And it's okay to feel frustrated and overwhelmed with a miracle child that you have ached for so badly. You can't consider him an absolute 100% glorious gift 24/7. He's a child after all and part of his job as your son is to try your patience. Both of my boys are miracles and so wanted and prayed for....but they drive me nutso. That doesn't mean that I love them any less. Don't let the guilt creep in.

Anonymous said...

Dear Patrice. I just yelled at my kids (well, sort of) for their progress reports at school. Not really yelling but not the loving mother conversations I have in my head. Then I read your blog and your "issues' and I remember, I want to be loving at all times. It's so hard ain't it?
On another note, I sew and I have been praying for a way to minister to you. I saw that you had people who sew so I was praying and waiting. I was wondering, what if you put the seams on the OUTSIDE and sort of made them decorative? I have a serging machine and you can put different colored threads in there and sometimes I hem or do things for my kids with a contrast thread (or thread) to make it more interesting, etc. Usually seams are under the clothes but I don't see why they could not possibly be on the outside. Especially cute little boy clothes for boys. I like the shirtless overalls idea. That works great too here. I also think you could have a sleeve that has "NO" underarm seam persay. Such as one that sews from "cuff" to hem in one long line. That's a thought too. Not so many seams but much trickier to think of. I am going to put my email address if you want to "talk" more about it. I think you have a great handle on many things. I fly by the seat of my pants often and I even have a background in child development and a teaching license. It's called parenting! On the job training! Hang in there!
Jennifer in Southeast, NC
jengjoy@aol.com

Mandy said...

Patrice, what size is Jonah in? I'm pretty sure I have some more of the little overall outfits from my son. I'm local and can meet you somewhere to hand them off if you like. I can also make custom outfits. mandyboyce@gmail.com

cari said...

my apologies if this has been suggested already... or if you have already ruled it out as a viable option... but one thing you could do for his nose is spray saline nasal spray up there first and then suction him with the bulb thingy. my prayers are with you all!

elle said...

i see i'm a little late for the q and a, but i just wanted to know if you had heard they are successfully doing bone marrow treatments for eb? i'm SURE you know all there is to know about eb but i thought i would mention it just in case...

your sons are beautiful.

Melissa said...

I have a friend who had some knee pads for her son for when he started crawling. I'm not sure where she got them or if they would be something you could use with Jonah, but perhaps the Internet could yield some info on the subject.

I am so glad you've shared so much info with us here. I will be praying for strong tooth enamel for Jonah, among other things.

The irritation and stress you feel from caring for Jonah sounds so completely normal of any new mom. Yes, you need sleep, and yes, you need to get out of the house. You are so correct. It is amazing how normal those two things can make you feel. And with Jonah's situation, coupled with still grieving the loss of Gabe, I'm sure you need those things more than most new mommies.

I think you are right on when you say that Jonah and Gabe look a lot alike. I totally agree and have thought the same for many weeks. They definitely look like brothers! That is something I prayed for for my own Jonah and his older brother -- that they wouldn't be cookie-cutter images of one another, but that people could tell they were brothers. God definitely crafted Gabe and Jonah the same way. They are so beautiful!

Still praying in NM!

Anonymous said...

Stand up straight Matt!

Katie said...

I have a stupid question for you. I know that poor Jonahs EB and dressing changes must be painful for him right? If they are then why are you needing or wanting to take him off the morphine to help him deal with that pain? I'm not trying to criticize or anything, just trying to understand! Thanks!

Anonymous said...

Patrice, you are doing a GREAT job raising Jonah. We moms are often too hard on ourselves, and we tend to remember our harshness - especially when we are tired. You and Matt have been stressed beyond what I could ever imagine, yet you both manage to remain strong and do the best you can for Jonah. You both are WONDERFUL parents. Praying for a restful sleep for all of you.

Gail
Annapolis, MD

Jenny said...

Hi Patrice,
Reading about your dog "standing up for Jesus" made me laugh! But then I read about how frustrated you are and I teared up. I wanted to tell you that I think about some of these fools who have kids who can't take care of them, and I'm so grateful that God gave you and Matt Jonah. You two take amazing care of him. I won't tell you not to feel guilty or helpless (two feelings that we moms perfect, it seems!). Just know that you do a wonderful job with him, even when you feel like you don't.

Anonymous said...

sometimes you think you are failing. But you are not failing!!! You are an amazing mother!!

Christy said...

Please don't beat yourself up about the little things that go wrong. Every mother I know goes through times that they feel like the worst mother ever created. You have every reason to feel overwhelmed and frustrated at times. Rest will help, but I know that can be hard even with a newborn without Jonah's problems. Tomorrow will be better!

Praying for peace and rest for you, and no new blisters tomorrow for Jonah!

Christy in AZ

calle23 said...

Maybe you could try Baby Legs for his legs when he starts crawling. Here is the website. They are pretty amazing. And pretty resonable. http://www.babylegs.net/newWeb/home.php?main=home&sub=home