Sunday, March 14, 2010

jonah update

Thought I'd give you a little Jonah update since it's been a while.

We're now down to three bottles a day: 9:00, 2:30, and bedtime (around 8:00). We're trying solids in between at 1:00 and 6:30. He's still not interested and won't take more than about three bites. I've tried everything. Really. So now we're down by a bottle, eating anywhere from four to seven ounces less than he was getting when he was taking four. BUT it was a struggle to feed him that 4:00 bottle. He didn't want it. He wasn't sleepy so there was no forcing it, and it had gotten to where if he ate four ounces that was good. And it was pulling teeth to get him to do that. I think he wanted to cut back, and as much as I can, I'm trying to let him set his schedule. But it bothers me that he's getting fewer ounces and not eating solids. He still won't touch a sippy cup. I've tried most of them and several cups the OT gave me to try.

Whatever. It is what it is. We have an appointment with Kids Eat (a children's eating therapy program comprised of a speech therapist, nutritionist, and a pediatric doctor specializing in feeding issues) on April 5th. Honestly, I'm not sure anything short of a miracle can help him. It's all psychological.

Sleeping has gotten a TON better. Jonah, for the most part, now puts himself to sleep. I still hold him for his morning nap since he falls asleep while he's eating, but he now takes an afternoon nap in his bed. True, it's only for thirty minutes, but I also get the thirty minutes he lies in bed and talks himself to sleep. I go up to his room and feed him at 2:30. He falls asleep during the bottle and then I put him in bed. He immediately wakes up. I get him out, make sure he doesn't need to burp, and then put him back in bed. He cries for one to two minutes. I lie in the floor (out of sight) and listen out for puke noises and if he seems okay, I come downstairs. The problem is there's about a 25% chance that laying him down and him crying hard (if even only for a minute) on a full stomach will make him gush. Which is really bad when he's lying down... but still, worth the risk.

AND he's sleeping through the night. Going down around 8:30 or 9:00 and we don't have to go up there until 7:00 or 7:15 in the morning. Even if he wakes up, he usually lets out a cry or two and SELF SOOTHES himself back to sleep.


Even before when he'd sleep through the night, he'd wake up screaming around 10 or 11, and we'd typically have to go back up and re-rock him and it was a struggle to get him back to sleep. But now he's really got it. And so far, his face has looked better than before, so apparently he's not doing any face rubbing as part of his self-soothing process. The puke risk is the only thing that worries me and like I said, so far, has been totally worth it.

His toes are blistered, but aren't doing too badly. Basically he got some big blisters the first few days and they've spread. But we're not getting big ones daily or anything. His left foot really worries me. His second and third toes are badly webbed to the bottom of his foot. And I worry that leaving his feet unwrapped won't stop the webbing. But there's really no way to wrap his toes separate from the bottom of his foot since the space there is already gone. I don't know. It causes me lots of anxiety. I'll probably know more after his April 15 dermatology appointment.

We are on the last two tiers of genetic testing for Junctional EB. I think they are testing LAMA3 and Collagen 17 now. If he has Junctional, I think we will find a defect in Collagen 17. If they don't find anything on these last two genes, it's likely that his biopsies were wrong, and he may have RDEB. I got nauseous just typing that last sentence. I can't even go there at this point. I'm praying he's just a more mild Junctional. The webbing scares me though. It really does. We should know in about ten weeks.

So that's where we stand right now. He's eating enough but not interested in solids or a sippy cup, and for anything over four ounces has to be asleep to take a bottle. He's sleeping like a champ. His feet are worrying me, and we're still waiting on genetic testing results. Lots to be anxious about but even more to be thankful for.

And he's as adorable as ever (with lots of "Mommy, if you are anywhere in my line of sight and NOT paying direct attention to me" whining thrown in).

Hope everyone had a good weekend. We didn't make it to church. With the time change, we wouldn't have been able to get dressing change and his morning bottle/nap done in time without having to wake him up and get him out of bed an hour early. I didn't feel good about that. But I did miss getting to go to church. Hopefully next week.


Laura said...

So glad to hear he's sleeping better. That just makes life a little easier. Eli woke a lot at night for a long time, but I survived.

Laura S

Me, the boys and a Farm... said...

So glad to hear the sleeping is getting better. A total win - win for you! I know you don't really want or need advice and I am not really trying to "give" it...just an option, didn't know if it would work,or help. I used to be a dental assistant (before becoming a stay home mommy) and in the wonderful world of dentistry we couldn't make it without 2X2 gauze since those are thin and small could you place those between the toes prior to wrapping to keep them from webbing? I don't really "KNOW" anything about your forgive if it is a ridiculous idea...just a thought.

Jonah is so beautiful and our family loves keeping up with yours and praying for you. My 3 year old knows baby Jonah and Baby Tripp by sight...any time I am looking he comes and sits on my lap...he says he wants to "meet those babies some time..." I just giggled and said well, maybe one day...we will see baby Jonah at Target!

I hope good things continue to happen! Take care.

Jill said...

Glad to hear you are seeing some sunshine through all these great things that are happening for Jonah these days. And full nights of sleep are a very wonderful thing.

Here's hoping for a terrific eating week.

Katherine @ Grass Stains said...

Even though the webbing is scary, I'm SO HAPPY that he's sleeping so well! I hope it's permanent and that you will feel more rested every day and more prepared to deal with The Tough Stuff. Sleep really does make a huge difference. Love you so much!

Sara Denslaw said...

don't be surprised if the feeding clinic isn't much help. Most of the techniques they normally use, are not EB Friendly. We never found it helpful for Sami mostly because she refused to corporate(but every kid is different!) and we started at a much later age than Jonah is now, and by the time I gave up fighting her on food (age 4) she started eating better! Go figure! hopefully Jonah will corporate:)

Kelsey said...

What a relief for you that he is sleeping through the night now! You seem a lot more upbeat in this post, very glad to read that. Keep hanging in there, you are one amazing woman!

Unknown said...

Glad to hear the sleeping is better and I hope that it continues to go well. I also hope the eating gets better. It's so hard to deal with eating problems! Praying for you and yours.

Nashville TV Show said...

YAY! For sleep!! So good for all three of you!! Definitely praying for his little feet and for those test results!!

Joe, Christina, & Rocky said...

No sure if this would help at all - but I had huge textural / food issues when I was little and my doctor had my mom feed me food from an ice cube tray - with different foods in each one. Just little bits in each cube, to limit boredom and make the variety "exciting" to eat. Not sure how this would help, and if with EB there's all that much you can vary, but I figured I'd put it out there :)

Shari said...

I just thought of something. I wonder if he's not hungry because he's not moving like crawling etc that uses up more calories. Maybe it's just not moving through him fast enough to feel hungry. Just a thought. That's all! He's such a beautiful kid. I pray daily for Jonah and you and Matt.

Laura A said...

Hi Patrice-

So glad the sleeping is going well! I know the nutrition is worrisome for you, and will pray specifically for that and those sweet toes.

Tonight, I was praying with my two oldest boys, and as I was closing, Jackson (my 5-yr old) quickly chimed in "and please help Jonah and Tripp to feel better soon." He's been asking a lot of questions about Jonah and EB - he loves Jonah, and fell in love with Tripp today too.

All that to say (just in case you need a reminder) that you, Matt and Jonah are loved and are being prayed for all over the place!

Hope you have a great Monday!

Love from TX!

Sewconsult said...

Sleeping is wonderful! I know you must be getting some much needed rest for the challenges of the day.

jenlar3 said...

Maybe with warmer weather coming, you can sit outside with him and try things like applesauce, oatmeal, etc... finger painting with foods. Give him and spoon and let him play and maybe get some in his mouth and maybe start to get the idea and like it. I don't quite understand the webbed toes stuff. Are you willing to post a picture? I am glad he is sleeping well for you!

God Bless!

Carrie said...

I will pray that feeding therapy will help Jonah. My son was in outpatient feeding therapy for two years (his eating problems were all psychological). When we started, he would only eat maybe three different solids. By the time we finished feeding therapy, he started eating a variety of things. He still isn't the best eater, but I can definitely say that feeding therapy changed our lives for the better. Jacob actually looked forward to going to feeding therapy. They made it fun for him.

Ani said...

Praise God for sleeping through the night! I'm sure you have tried this, but will he eat finger foods (instead of pureed?) like overcooked pasta, puffs, etc?
Good luck on the eating front.

Valerie said...

So glad he's sleeping better. I'm sure that makes a world of difference in your energy level! Just out of curiosity - is RDEB alot worse than JEB? I don't know much about the difference.

Joe Murray said...

I'm SO jealous on the sleeping front. Ella used to only get up once, but she must have taken Jonah's old sleep vibes because now she's waking up 4-5 times a night. It's torture. I'm glad that at least one of us is getting sleep.


JenandAsh said...

My daughter is your average kid and she refused a sippy cup until she was almost 14 months old. We tried several brands and got nothing.

Now she'll use whatever brand is handed to her :)

Amber said...

We had a wonderful experience with Brenner's KidsEat. My 40lb 6yr old hates to eat and has little use for food. I was floored at the first appointment when we sat down with 5 specialists at one time and they went through everything from every angle. I couldn't believe all those specialists were in one room :)

Go in with all your questions, suggestions, notes, history, EB knowledge, and mom's instinct. They want to work with you and the really do listen. I made all kinds of lists and notes before we went so I didn't forget anything or get distracted by my son and miss an opportunity.

I pray they have some great insight and you guys find some success.

K said...

Yay for you all on the sleep! I hope it makes you feel tons better to be getting more rest.

I don't quite understand about the toes webbing to the bottoms of his feet. To me webbing would happen in between the toes. Does it mean that the toes are always curled and have attached that way or has extra skin formed?

I am very curious to find out what an eating therapist does. I hope it makes a difference.

Can Jonah have jello? Even jello that hasn't set and is still liquid tastes wonderful and is smooth. Then again, I wonder how it would effect his teeth due to the sugar.

My heart goes out to you because every single thing is so complicated for Jonah. My prayers are with you all.

ishatrisha said...

i have been thinking about you and jonah ever since i read about the basketball game. getting disappointed just sucks! it wouldn't bother me too bad that my kid got sick on somebody. i just know that feeling of wanting things to go the way i have planned and all that being dash to you know where. and now you have to wait 10 weeks to find out about his you don't have enough on your mind! just wanted to let you know on the other side of your computer screen, there are a lot of people praying and rooting for you guys!


the-mommy-person said...

Love to Jonut!!!

Gail said...

Glad to hear Jonah is sleeping better...through the night is wonderful!

Island Jack's Travel said...

It is great that Jonah is sleeping so much better! My kids didn't sleep much ... EVER. They outgrew naps for the most part by the time they were a year old. If they did take a nap, then they were absolutely wild until midnight ... to much energy.

Eating was up and down for us too. Jason refused a bottle so he was only breastfed until he was almost a year old. He finally decided it was fun to use a straw and that was when I weaned him. Solids were sometimes accepted ... and sometimes refused. Somehow they all managed to grow up. Jo was in the 99th percentile for height and about the 40-50th for weight. Jason was just the opposite (short and round!).

I'm glad you are getting more professional opinions about his eating and growth. I just want you to know that the eating/sleeping problems happen a lot. Our kids seem to never do things like "the Gerber baby" is supposed to.

I am praying that all the tests come back conclusively that your dear Jonah is on the mild side. As for the webbing of his feet, I don't know how severe it is or if it will cause problems. However, webbed toes run in my family and I am no exception. My 2nd/3rd toes on both feet are webbed almost up to the joint. It never caused any problems except that they look a little funny. In fact, it was a great conversation starter! Hopefully it will be no big deal for Jonah either.

Love, Janet

Holly said...

I'm a loyal reader of your blog. To the point that I feel like a stalker. Anyways, I'm obsessed with beautiful Jonah - he is perfection! I don't normally comment, but I am curious what RDEB means. Can you let us know?? So that we can worry along with you, of course.

It Is Worth It said...

it made me so happy to hear you have a sleeping thru the night jonah!! that's awesome. praying for your peace about the webbing and test results. still hate eb. but seriously...sleeping thru the night? so awesome!

YAY jonah!


Unknown said...

Just wanted to say thanks for keeping us updated on Tripp. I've been following them and praying for them and commenting on Courtney's blog. I'm so sorry that she (and you) have to endure this terrible EB.