Tuesday, May 12, 2009

answers, part 4

What keeps Jonah's hair from falling out?
I'm not sure it isn't thinning out a little. It will thin out. That's a common thing with Junctional. I figure he'll probably want to keep it buzzed when he gets older, but I don't know how bad it will be. Right now he's got a bald spot in the back, but I don't know how much of that is EB and how much of it is just typical baby rubbing it bald.

What kind of breast pump do I use? Do I nurse at all?
I use a Medela Pump In Style that is almost eight years old. It is gently used (gasp!) and was given to me by my sister-in-law. I bought all new tubing and bottles, so basically all I'm using second hand is the pump itself. I like it a lot and even took it back and forth to the hospital because I liked it so much more than the stand Medela pumps they have there. It's a lot faster. I can't breast feed at all (as much as I'd like to) because we have to make the milk a 24 calorie formula, fortifying it with Similac Advance Soy Powder and Beneprotein. It's really important that EB babies get extra calories since they are constantly regenerating skin and trying to resist infection. Plus, if I nursed, I wouldn't know exactly how much he was getting, and I'm pretty neurotic when it comes to knowing his intake. I write it down (to the exact cc) every time he eats.

Would silk sleeves help protect his face? Is there anything we can do to protect him?
We do put satin mittens on him over his bandages although they tend to fall off (they have ribbon, not elastic). I've also begun swaddling him in his miracle blanket to keep him from hurting his face in the middle of the night. It seems to be helping some, although even with the mittens, he still gives his face a good wacking during the day. He's got a lot of blisters around his eyes and on his eyelids right now.

What kind of therapy services will Jonah get?
I'm not exactly sure. I have the nutritionist scheduled to come and the OT will come next Friday. If you looked at the comments on the previous post, you'll see that Sara posted some stats for Junctional EB babies and where they are slow in developing. Our first order of business will be working with his hands, but I'm sure we'll have to work on other things (sitting up, walking etc) as time goes on. I'm sure he'll be delayed in using his hands because of how painful it will probably be for him once they are unwrapped and blistered. Same thing with walking... he may not walk until two or three years old, because of pain/fear of pain.

Will the doctors give Jonah anything to counteract the withdrawal from Morphine? If he's in pain, why are we taking him off?
We're hoping he won't suffer withdrawal, and no alternative medicines have been brought up. I don't think he'll need any. We're going down on both the Morphine and Ativan by one hundredth of a ml every day, and so far so good. It's so slow I don't think it will affect him negatively. Plus, he weighs a lot more now than when he started that dose, so he's already weaning himself. We have read that EB kids have a high tolerance to pain, because it's just a constant part of their life. However, Jonah is in pretty good shape most of the time except some isolated areas, so I think the dressing changes are less painful to him and more just annoying. Matt and I feel his pain can mostly be controlled by occasional Tylenol or Motrin (once he's older). So when the Morphine and Ativan are more for our convenience than his pain, it's time to get him off. We should have him weaned of both in 20 days. I'm excited. At that point we'll start doing the dressing change as soon as Matt walks in the door. So hopefully we can get started by 5:30 (I'll hopefully have already given him his bath), and be done by 7:00. We'll be able to go out to dinner or to a movie or just sit on the couch and watch a TV show... in real time. Wow.

Let me know if you are getting bored of this question and answer stuff. I don't feel like this is all that interesting, but you guys asked. So there it is.

My mom came over right after work today, and she and Matt's Aunt Patsy kept Jonah so I could get out of the house. (Patsy and I were going to take Jonah to Target earlier in the day, but he hasn't pooped in over two days, and I was worried he would choose the Target trip for his poop escapades... which would mean not only a back of the car diaper change, but also a back of the car leg rebandaging - when he goes, he really goes. He acts really constipated and is not eating as well because of it, and I've tried juice twice - which usually does the trick - and still to no avail. Poor thing.) Anyway, I went to Target myself, and it was glorious. I have never liked shopping by myself, but now, for some reason (hmmm), I totally dig it. I won't do the "what was on my list" versus "what I actually bought" post today, because I would be ashamed. Let me just say the extras may or may not have included Little Debbie Fudge Brownies... and Fudge Rounds... and a new skirt... and eight cases of soda (hey, they were on sale). Maybe that can be my weekly post - you know, like Not Me Monday or Show Us Where You Live Friday. We could call it "Confessions of a Targetholic. Who the Heck Cares What Day of the Week it is?" Is that title too long? It's a work in progress.

Because I've been struggling for blog ideas, Katherine got me a new book called "No One Cares What You Had for Lunch. 100 Ideas for Your Blog." You guys are in for it now...

53 comments:

Laura A said...

Ooh, Target shopping alone. Dangerous, but fun! I went there yesterday and amazingly stuck to the items on my list for once. But I think it was only because I had to pick up children from school and they need room to sit!

Hope you enjoyed your day out, and that you've felt better today. I prayed for a more peaceful dressing change tonight - hope it went smoothly!

Continuing to pray - please kiss sweet Jonah for me!

Love,
TX Laura

Amanda said...

first time poster...long time reader. I love your Q & A. And i love everything you post. Jonah is in my prayers daily. keep it up! Your a great Mommy:) I have 2 boys...the newborn thing alone is hard! You are doing and AMAZING JOB!

dragonflyz in June said...

Wow, I am the first to comment, I feel so special ;-)
I find myself checking your blog several times a day to see if you have posted anything. I do find your question and answers interesting, I have so many questions and I absolutely adore your son. I look forward to what you will post about with your new book in tow as well....

brandi said...

you just like your precious son..amaze me!

Praying everyday for you in Ohio :)

Erica said...

Love reading about Jonah- what a precious miracle.

Have you tried dark Karo syrup for his constipation? We used that with Eli when he was really little and was drinking high-calorie formula (that tends to stop them up). You can put 1-2 tsp. in a bottle 1-2 times daily, until it resolves. It always worked really well for us, better than juice even did. Just a thought. :)

RZ said...

target shopping alone is just bad bad bad. I sometimes sneak out of work an hour (or two!) early just so I can hit target before I pick up my daughter from daycare. The last time I went alone, I actually left with *nothing* But I do love target. and ulta :)

still praying and thinking of you always!

rebecca in pittsburgh

Yocumotion said...

the Q and A is WONDERFUL!! Thank you for sharing and keep them coming

Merrilee said...

Ohhhh, Target Tuesdays! That gets my vote... :)

shannon in Mn said...

Dear Patrice, I only wish I was able to blog like you do! My life is far to boring and even if it weren't I still would not be able to do it!! We all love the Q and A so keep it coming!!
Many. Hugs!
Love, Shannon in Mn

Happiness is Here! said...

I enjoy hearing about how you take care of Jonah and how you are planning for his future!! The question and answers are great!! It helps me decide how to pray for you and what you need from our Lord!! Keep up the inspiring and amazing work as Jonah's Mama!!

PS I need blog post idea's too, yikes!

Shari said...

Bring on the new posts! I am ready! :) The questions/answers aren't boring at all. I think it's good for us to see what all you and your little family go through. It also helps so we know how to pray for you guys, too.

as written by Barbara said...

You are great and so are your blogs. I can hardly wait to see what comes next.
I, too, like the Q & A... I am learning, and know what to prayer for also.
Glad you had shopping alone time today... every Mom needs that, but especially ones with babes needing extra special time & tasks for them.
God Bless you all,
Barbara Lyman
Marysville, WA

Claire said...

I find your Q & A interesting and informative.

Cxx

chinamoon1420 said...

I love the Q&A. I also enjoy your blogs very much. I found you a long time ago through the babycenter site. Long story but I found you as I was reading others blogs. I found your story very interesting. I have been reading a lot about EB. My son has hemophila A severe. (he has no clotting factor in his blood.) And I thought we had challenges. I have been praying for all of you everyday. Jonah is beautiful! I look forward to reading your next entry. I love Target Tuesday too! Good idea. I am a stay at home mom and I love it. Maybe I will start a blog too! I do most of my computering at night though after my little one goes to bed. I hate being on here for so long but it is my little escape.

Prayers for you from Hixson Tn

Covey and Justin said...

FIrst time commenting (I think) but I wanted to tell you that the Little Remedies Constipation drops worked WONDERS with both of my children. It is like a super prune juice concentrate and it is wonderful. One drop even works on my two year old. Just an idea becauseI know you probably don't want to fill his little belly with juice when he could be getting something with good nutrition.

ashpuck said...

I love the Target idea! A Target just opened about a mile from my house and literally have to force myself to stay away at times! I love walking around and just looking. Unfortunately I end up buying many, many things I didn't "have on my list". Hey, It happens to the best of us. Right? ;o) I'm glad you got out for a little while to get some much needed "therapy"

Have a great week!

~Ashley

Buffy said...

Hey Patrice. I'm catching up on the last few days so maybe you have already addressed this, but do you know about the services available to you in your area? Services for therapy, I mean. We had to find all that stuff out with Tori and it was quite an education. It has saved us literally thousands in therapy bills, though. Let me know if I can help! ylbuffy@yahoo.com
Buffy Smith

Anonymous said...

I love Target. The problem is that there is only one in my town and I'm embarrassed to go every other day. My mom asks on Sundays, "have you done your Target run yet?".

Speaking of therapies....are you all going to enroll in the early intervention program? They will cover much of therapy at no cost or low cost to you. Here in KY the most that families pay is $30 a month for how many ever therapies the infant needs. Most however pay nothing.

truelifeofjess said...

I too love the Q&A!! Not sure if you are ready to try this yet with both my children I would put a little bit of prunes in a bottle. I did it as young as 2 months. Mother is a nurse and she said it would be a good idea.

I love target, yet we live an hour from target!!

Martin Family said...

LOL! You are too funny! Target definitely needs to offer a treatment clinic for those of us who become 'dependent'.

Sarah said...

Patrice,

I have children with pooping issues (one is five months and one is four years.) A while ago we took my daughter to a nutritionist and she recommended putting her on a probiotic called reuteri. For our daughter, who was severely impacted, it was only part of the treatment, but she told us that C-section babies don't get reuteri because it's delivered to the baby during the birthing process (all my babies are c-section babies). Anyway, I put my new baby on it and it definitely helps keep him regular AND soft. You might check it out. Not sure if Jonah was c-section or not, but meds can while the probiotics out of the system too.

I enjoy the blog! Keeping you in my prayers.

Tricia said...

Yes, it is interesting. I really want to know. I pray for your family daily. Sometimes I feel guilty, because you are the focus of my prayers and Jonah is more like an afterthought. It's easier to know what to pray for you because I can understand your needs parenting a special needs child. Like needing to get out of the house, etc. The Q&A helps me toknow what to pray for Jaonah. You are doing great! Keep it up! May God bless you with strrength and peace while you endure this.

Heather from Ontario Canada said...

Nope I'm not getting bored of your question/answer section. It's quite interesting actually. I'm learning a lot too. I'm so glad you had a fun Target shopping trip. Your deserve it !!!!!! I can't wait to see your NEW post ideas. It'll give me a few ideas of my own...no more talk about my cat ***grin***

Nora Lee said...

I haven't asked any questions, but I am interested in all of the answers to everyone elses. Trust me you are not boring us :)

Glad you got out of the house for a while. Thanks for all of the updates. Always remembering Jonah in prayer.

Jane said...

Patrice, still thinking about and praying for you all. I have read all your posts since I got home from the beach. Sounds like things are going as well as they can. So glad all went well with the doctor's visit. I am enjoying your Q & A's, it helps to understand a lot of things. Glad you are taking the opportunity to get out of the house some. A lot of babies have problems with constipation, especially if they are on formula. Jonah is really growing and looks great. Keep up the good work, you are doing a great job. ((((hugs)))

Mike and Mindy Aumann said...

I love the Q&A posts. It helps us with no EB experience to understand and know what to pray for.

I used pre- & pro-biotics to help keep my kids' colons healthy & "regular". Not knowing EB babies, I'm not sure if it would help, but thought I'd share the idea...

Mama10EE said...

Patrice, I am a Target Shopaholic too! I think a confessions post would be most hilarious. I hope you enjoyed your minor dose of retail therapy. Jonah is adorable, I love his "muscle shirt" pictures. What a babe! Love your Q and A posts as well. As a long time reader but first time poster, it is nice to have answers to some questions that can direct my prayer for Jonah.

Anonymous said...

I do enjoy the Q & A very much. People think of questions that I don't and wish I had or ask ones I wish I was brave enough. Whatever you want to do is fine. It's YOUR blog and you can do what you want! I too have a Target obsession. Mine is about 30 mins. away though so I have to make a list (but there are always things that I discovered there!). Jonah is amazing and so are his mom and dad. Hang in there. One day and step at a time. Jennifer in Southeast, NC

vanettens said...

That is a great idea - love it! I cannot go to Target without being sidetracked from what I am there for especially by the little red clearance stickers!!! Also love the questions and answers.

JC said...

I would so link into your "Confessions of a Targetaholic" posts. I am a known Target shopper and I spend way too much money every time I go. However, I went yesterday and walked out with nothing in my hands. Yep. You heard that right. Nothing. I guess that's what happens when you make a list and they don't have one single thing on your list! Ugh. Praying for Jonah!

Lorraine-bo said...

The only thing that keeps me from busting my bank at Target is that the closest one is 50 miles away!

I think you're doing just fine with your blog. I enjoy it!

Hope sweet Jonah poops today! :)

erika said...

I HEART alone Target shopping. It's like I can get lost in my own little world :) I totally think you need to do a Confessions of a Targetaholic.....post. That would be hilarious! I enjoy your Q and A's. Did the dr's talk about using methadone for withdrawl? I guess as long as you are doing a super slow wean (and he has gained wt as you had mentioned) and he's not showing signs of withdrawl, you'll probably be ok. We almost always used methadone on our kids in the PICU who were on long term morphine or fentanyl.

Take care and keep the posts coming! They are so not boring!
Erika

Melissa said...

I can't wait to see what you post with the prodding of your new blog ideas book!

And, by the way, I'm not bored at all with the Q & A sessions. All information is helpful in praying specifics for Jonah.

Just'N Angel said...

I can only imagine how nice it was to shop alone. Just a little "me" time makes for a much more refreshed mommy. I love learning about Jonah's needs so I know better how to pray for him. I still think you should write a book someday!

Jenni said...

I love the Q and A's! Keep them coming. I also think you're funny!!

Have you tried apple prune juice? It's worked at times for my little one, but she has pretty bad pooping issues so we're now using Miralax as a long term solution. I do remember those days those - once she went for 6 days with no poop! But, when she went, it was like 6 days in one! I even stayed home some times waiting for it, just because I knew what a mess it would be.

By the way, each state has their own version of free therapies for children under the age of 3. That falls under one of the federal disability laws.

The Buchanan Family said...

Try giving him Karo Syrup(dark)in his bottles-he will think its yummy and it always helped my babies go!

Susan said...

Hey Patrice! I just wanted to see if it would be okay for me to send you two cans of Similac Advance Soy that I received in the mail. Of course, they are unopened and I don't want to throw them away. Can I use the PO Box address on your blog to send them?

hellomorleen said...

Patrice,

I definitely think you should keep doing the Q&A. It helps us all learn about EB and what to pray for in regards to this little boy we have all grown to love :)

I love the Target idea as well. I know you feel that not many people out there can relate to you from an "EB" standpoint, however we can pretty much ALL relate from a Target standpoint! I think it would be fun to read people's lists because we are all guilty of leaving with more than we came for :)

Rachelle said...

love the q and a! Target Therapy is a super idea...it would be a fun diverson!

debbie said...

Patrice, I pray for your family daily and I enjoy your blog daily, the q & a's are interesting. I think TARGET should be sponsering you in some form, you are great advertisment for them, just a thought. keep up the great mothering, you are a wonderful mamma & I always get a chuckle from you!!!

Stacy aka Fahiima said...

You are such a good mom for breastfeeding Jonah even with the EB and calorie issues. I hate pumping so I can understand the issues. However, you are doing something that will help him resist infections as he gets older, which is great. I think the probitic is a great idea for trying to keep him regular since he is still too young for solids. Once he gets to be 8 or 9 most give him beans and prunes and you shouldn't have a problem again.

brenda in seattle said...

I thought of you today when I went to Target. On my list were paper towels, a swim suit for my daughter and milk. I got the paper towels and milk. I couldn't find the right swim suit so instead I got her some sandals, hair bows and a sun hat, oh, and a $1 water bottle for my son. So there's my Target trip for you. Not too exciting or funny. Maybe the next one will be better. I did say a prayer for you and Jonah while you were on my mind, though.

Kat and Crew said...

Karo has been GREAT for my kids constipation. 1 to 2 teaspoons in a bottle. Stir it well! We always use the dark Karo. Juice never worked for my boys either! GOOD LUCK. Still praying for Jonah.

Jen said...

I LOVE the Target title! Hilarious! I would totally participate--I was there today and came out with more hangers than I can use in a year, a gutter drainage "thingy" (that's how much I DON'T need it, I don't even know what it is!!) and a soft pretzel--that I definitely did NOT need!!!

You and Jonah are in our prayers!

Katie said...

I"m not sure what your pediatrician would think of this, but my daughter had problems with constipation and we used dark Karo syrup. One tablespoon in a bottle once a day (we did it every morning) and she would at least poop every 2 days. Just a thought!

K said...

My little boy struggled with constipation A LOT! We tried putting a tablespoon of dark Karo syrup in his bottle. That seemed to help.
Don't know if that would be an option or not, but it worked for us.

Michele said...

I love the blog feature idea! I think you should start one! Every woman out there loves Target!

jennifer said...
This comment has been removed by the author.
Anonymous said...

just wanted to let you know that pear juice works better than apple juice. working with infants for 15 years, pear juice always did the trick. also, when they haven't gone like that it is recommened to give it straight (no water added). good luck!
julie from arkansas

Missy said...

I had to laugh out loud at your post because I was at Target today by myself and it was BAD, VERY VERY BAD (well good for me, bad for the checkbook).

mrs. mari said...

i went to target today fir two things only, mind you i haven't been in a target in a few years, but it was closer than macy's which all the way to the mall, and i only needed new underwear and flip-flops, so target was good for that. you cannot imagine what all i came out of that store with. i had to come home and repack my suitcase to get it all in. (we're leaving on holiday tomorrow)

i need to go back to not shopping at target:)

Anonymous said...

goodness me.. I'm just amazed after reading through your blog. All the best to you and your family and especially to little Jonah.
I'm not sure if it would help. But we used this for our boy to stop him from scratching his eczema when we were weaning him from swaddling.. http://www.pekemoe.co.nz
my thoughts and prayers are with you xxxxx

Amy said...

Yeah! You got to go out alone! Dangerous, huh???

LOVE the Target list idea! Seriously? You mean clothes for the kids is not PERMANENTLY on my list??? Who would have thought?!?! But that shirt was just TOO cute and it was ONLY $3!

And I want to read that book! I'll have to look into it!

Amy