Saturday, September 19, 2009

jonah update

We're having a pretty quiet weekend around here. I tried to take Jonah out twice yesterday, and both times we had huge vomits as soon as he got in the car seat, so once again, our plans were thwarted. The first time I was able to catch most of it in his burp cloths/a garbage bag (only had to change his chest piece), but the second time we thought we were in the clear, on our way out the door, and then all of a sudden... all over the car seat. Frustrating to say the least. I can't even remember the last time Jonah's been out of the house. That makes me so sad.

So Matt kept him, and I ran through the Chick-fil-A drive thru, but other than that, I haven't been out since last Saturday. Matt always offers to keep him so I can get out, but then I'm spending time away from the two of them (after Matt's been at work all day), so that's not really fun. I want to go out WITH my family.

Oh well. I guess it's not a big deal in the scheme of things... but it feels big to me. I just feel like Jonah is missing out, and I'm missing out on memories with him. Maybe it's bigger in my head than it really is, but things start looking different when your cooped up all the time. I have spent all of this hot summer waiting for cool weather so we can get out. And now the cool weather is here, and we still can't get out.

Praying it'll work out for us to go to church tomorrow...

Jonah's doing very well other than the throwing up (three gushers today). His back, arms, and legs are completely clear. His belly is mostly clear except for some healing spots. I can keep his belly clear most of the time, but as soon as I take his bandages off, if I'm not quick enough, he starts rubbing. Sneaky boy. His toes have several blisters (from rubbing his feet), but his actual feet look good. We're still struggling with places on his face and hands (it's very day to day), but nothing we can't handle. His face looks so much better than only a couple months ago, and we are so thankful for that. His hands look about the same, but we are leaving them (when we can) completely unwrapped now. His right one is in pretty good shape, but we're having to keep the left one (hand, not fingers) wrapped right now because it has some pretty big raw areas. So overall, I feel so good about things. Right now the bandages are serving protection purposes more than healing purposes, and that's the way we want it.

He's taking about 21 ounces a day consistently. When he does take more than that, it's because he's vomited three to four ounces during the day, so it still evens out to about that same amount. I know that's not enough, but he continues to gain weight (he's at 17 lbs even now), so I've just tried to stop worrying so much. Things aren't good on the eating solids front. Today I maybe got him to eat about a half an ounce of solids, and that's been the most he's eaten in forever. He seems really excited when I get the bowl and spoon out, will take a couple bites, and then gets all done really quickly. I have no idea. If you could be praying about his eating solids specifically, we'd appreciate it so much. I know the extra nutrition and calories would be so beneficial for him.

And here's what he's been completely intrigued by the last couple days:



I know. Pretty amazing, right?
And a cute one of when he caught me taking pictures.

Well, that's it for now. So excited to hear so many of you eager to try the lasagna. You won't be sorry. I was also going to tell you that the bread was great too. It's just a nice change to regular garlic bread. It tastes like the bread at Macaroni Grill or something. Very tasty. But easy on the red pepper. I made it again tonight, and did equal parts of everything (last time I just eye-balled it), and it was too hot. I mean, I like spicy, but a little red pepper goes a long way. Lesson learned. :)

32 comments:

Stacey said...

Jonah's so cute! I love the adorable smile and blue eyes. BTW, I thought that Jonah's skin looked clearer. Either way, he's too precious! I'm continuing to pray for you and your family.

Stacey from CA

Kim and Asa said...

I've been following your journey for a while now and my son has massive pukes too! Not something you want to bond over, right! LOL But I have a tip for you.

After trying to catch these gushers in burp clothes and towels, we finally found the perfect thing. We carry cups around with us everywhere!!! They are easy for us to hold and they catch all but the worst messes. Use a big one though! The bigger the better! Really...t..he 32 oz ones! B.I.G. Hope that helps and might save you some dressing changes.

BTW, Jonah is adorable!!! Love the blog!

Check out our CaringBridge @
www.caringbridge.org/visit/asawilson

Tricia said...

I know it is hard to remember, but right now you are his world. Jonah doesn't need to get out of the house, but you do and that is understandable. He is not missing out on anything but infection and people asking inappropriate questions by staying home. Take care of you. It makes it easier to take care of him. I am praying for you. God bless.

Jen said...

I've never left a comment for you before but I just want you to know that you are doing an AMAZING job!!! Hold steady and take all your fears and worries to God. Jonah is here for a reason, just as you and Matt are his parents.
Always keeping you in my prayers!
Jen

Katherine @ Grass Stains said...

That look of assessment is just too cute to be believed. I love that kid! Thanks for the pictures. They are ADORABLE. Love to you all!

Miriam said...

17 pounds sounds pretty darn good for a 7 month old. I know you are stressing about his eating, but from his pictures, he really appears to be thriving.

My little boy was barely 17 lbs at his 1 year check up - he may have even been 14 lbs (he was born at 3 lbs 8 ounces, a twin). I know it's hard, but try to enjoy as much as you can, they grow up so fast!

KK said...

It must be hard to be "locked inside" all the time. This too shall pass, but take it as a blessing that he is safe at home away from the flu and everything else! Don't feel guilty taking time out for you though. You are doing a great job!!

jenlar3 said...

What about taking walks around the block in a stroller? Not the same as going to stores and such, but it is outside, a change of scenery and some fresh air. Might also help with sleeping. He is so adorable. Glad to hear he is doing well. Life won't always be like this Patrice, and you may be surprised to find yourself looking back longing for these simple "good ol' days." When do we get another Spanish lesson?! :)

*Mirage* said...

He's precious! I read every update, even when I don't have time to comment. I love the fascinated by his hand pics. :)

Ginster said...

Have you tried different temperatures of the solids you give Johah? If they hurt going down, I wonder if you served them really cold he might like it better. Just something to try!

Wanda Wilkinson said...

What is this thing attached to the end of my arm...maybe I can do something with it???Like put it in my mouth (haha) Jonah is so intense with focusing on that thumb..pretty good attention for a something that does not do any thing...He is going to be a thinker & smart man..

Great pictures, he is looking so healthy...I noticed how long he is in the pictures you posted earlier this week..He is growing by leaps & bounds.

Like others have said, take him out for walks on these cool days..that will get you outside. And it is so true, you & Matt are all that matter to him these days..hopefully he will soon stop "gushing".

Love & prayers

Kirsten said...

thinking about you and praying for you! that's gotta be really tough. do you know why he vomits so much? is it just an EB thing? just curious if the doctors know why...

Kelli said...

Fascinating discovery...hands!! Too cute. Praying fervently that Jonah's vomiting lessens so that the family is able to get out a little!!!!

katrynka said...

Sorry to hear that you haven't been able to get out. I would be very stressed!

Obviously your doctor and nutritionist (if you have one) are the people to give you the most advice. but I have worked with children with special needs for the past 25 years, and formula has everything he needs at present, and any solid foods are actually many fewer calories for the same volume. So formula give you "more bang for your buck" so to speak!

Anonymous said...

I can't wait until you ALL can go to a WFU game!
Prayers Always,
2shoes & WFU FAN.

Karen said...

Is there something like a little raincoat you put on backwards or a rain-cape like they sell at Disneyland that you could just rinse off and put back on when he vomits?

Anonymous said...

Hey Patrice...I have posted a few times before...I am Sara, the pediatric speech therapist from WI. Have you considered feeding therapy?? I assume you would have Birth-Three services available where the therapists come to your house? They may have some good oral motor/oral stim ideas to help Jonah with solids. While he does not need the solids for calories right now, developmentally you should continue to expose him to the solds.

And as far as the gushers go...do you see a nutritionist?? A nutritionist may be able to give you some ideas for lower volume, higher calorie formulas. So, basically you would be giving him less in quantity, but he would be getting more calories. So there would be less in him tummy to gush out.

I hope this helps! Let me know if you want to talk and I will email you my contact information!

That boy is adorable!! He looks like he is thriving!!

Sara from WI

Laura A said...

Hi Patrice-

Hope you were able to make it to church today. I know it must be so frustrating to be house-bound for so long, so this week I'll pray for a puke-free trip out for all of you. I keep Cool Whip bowls in our van for occasions such as this - but my kids are bigger, so don't know if it would work for Jonah yet.

Will also pray that he'll do better with solids. Maybe it's a texture thing with him? My youngest is like that - it takes quite a while for him to get used to a food, but then when he decides he likes it, there's no stopping him!

Jonah looks terrific, and I know you're so proud of him. Please give him a hug from his friends in TX! We love you all and pray for you daily.

Laura

Janelle said...

I have been following Jonah's story since day one, I had a puker and well hopefully the worst part is over since he is getting older. He is such a sweet boy. On another note I have the same Carters bouncer that Jonah has. My older son sat in it and well now the frame is broken and useless to us. I was going to toss it and than thought if you need a extra cover for Jonah's bouncer I will send it your way having a spare might come in handy since he likes to bless his mess all over everything. LOL!!
you can email me at
janellec2003@yahoo.com or
http://www.cavanagh4.blogspot.com/
I put my blog on here just so you know I'm a real person I'm sure you get lot of junk mail etc...

Best Wishes,
Janelle in AZ

M J said...

Don't know if it would make it too hot for him, but could you put a vinyl baby bib on Jonah so he didn't get his clothes dirty? Then it would be easier to clean him up and you could go out more easily.

Mimmy said...

Discovering hands was always one of my favorite times when my kids and grandkids were babies!! The look in their eyes is one of, "Hey, God made me these little things that stick out of this ball on the end of my arm. They move. They wiggle. I can feel things with them and, guess what, I can pick things up. Isn't God just great."

God Bless and love you to Heaven and back,
Mimmy aka Aunt Joyce

Anonymous said...

the bread ROCKS!!!! I mixed up a ton of the seasoning to keep on hand - my husband & I both love it! Thanks for sharing!

The Fowlers said...

My son threw up for the first six months of his life. Seriously. The one thing we realized, and the doctor later confirmed, it that car seats make it worse. The "sit-scrunch" position (car seat, Bumbo seat, etc.) was always the worst. After I cut out all dairy, he was better, but still threw up way more than most babies. He is wearing a huge bib in every picture we have of him. But, one day, magically between 6 & 7 months, he stopped!

Amanda said...

Hi Jonah's Mommy,

I think you are normal to want to get out and about with your entire family. It will come. . . but I don't blame you for going stir crazy!

Heather said...

It's very hard to be stuck inside so much. Hopefully, you'll all be able to get out soon!
Jonah is so cute : ) My son would vomit that much when he was Jonah's age, and we could never figure out how he gained weight. Slowly, but surely, the reflux did improve though. Praying it's soon for you guys.

Anonymous said...

Try mixing some fomula powder in his solid food. It may make it taste more like what he's used to eating and he'll get extra calories and vitamins per spoonful.

Kori said...

I lurk here and love following Jonah's progress. What an incredible family you are. All lucky to have each other! I just wanted to say: you are missing out on the day to day "stuff" and I think it's perfectly fine to mourn that loss. You seem to do a great job of being able to recognize that it's hard, but not wallow in it. That quality will go a LONG way in your journey with Jonah. So while it stinks that you can't run to Target and show off your beautiful baby on a whim, your ability to handle that is so much more important. Besides, you get to show him off to hundreds? thousands? of blog readers like me who would know NOTHING of EB or Jonah without this! You are a woman of strength and inspiration, and you know what? Some days I envy you. Keep up the good work.

Anonymous said...

Is Jonah able to wear a modified pelican bib to actually catch the vomit to make a change of clothes/bandages unnecessary?

Erin said...

I just wanted to encourage you not to worry too much about Jonah's eating. The proof is in his amazing growth! He's either getting plenty or God is working a miracle, so you should do your best to let that worry go. I know, easier said than done, but look at that big, beautiful baby! I have the same trouble-- my son has severe food allergies, is a terrible eater, and is on formula at age 2. I have to force myself to look at the big picture-- he's growing fine despite it all. Somehow their little bodies get what they need. Hang in there!

Amanda said...

Ha ha! He must be brilliant. ;)

10 points to Matt for offering to watch him after work. I'm sad with you that you aren't often able to do the "family thing". I hope you'll take Matt up on it every now and again (and maybe for a little longer than a ChickFilA drive through run :)). How amazing God has been with Jonah so far. I bet He'll be giving you the blessing of going out and about as a family soon too.

Hang in there Patrice! You have a following of blog stalkers cheering for you (and praying much).

Amanda

Anonymous said...

I read your blog everyday and love hearing about Jonah! (and I'm a Spanish teacher too :-) I get really motion sick (and so have vomited my fair share in life) and there are somethings that just the smell can make me feel queasy (but since I'm older now I can usually control myself). One of those things is the smell of car (or stuff that has been in the car for a while - it is a chemically smell). I was just going to suggest that maybe something about the carseat might be making Jonah feel sick. I realize he vomits other times too but you've said it happens everytime he goes in the seat! I'm praying for you!
-K

Angie said...

I'm a frequent lurker who decided to post. I am praying for you. My 10 year old son thinks that Jonah is adorable (because he is!) and he often prays for him. I agree with another reader - you are doing an amazing job! God knew what He was doing when he gave Jonah to you. Your journey is an encouragement to me in my walk with God. Know that so many of us are rooting for you....praying for you. Thank you for sharing your lives with us.