Saturday, May 29, 2010

this and that

This will be short, but I just wanted to check in.

Jonah and I have had a very rough week. Sunday through Thursday was spent with him not being able to tolerate his formula and throwing up and me cleaning up vomit and trying to figure out what in the crap was going on. The last few days I've spent blending food, cleaning up my kitchen over and over and over again, calculating calories, working on a ridiculously detailed spreadsheet, and struggling to keep Jonah fed and hydrated. He's not throwing up now because I've cut out bottles completely. He's getting three tube meals a day (and whatever solids he'll eat by mouth) and getting an overnight drip of water and/or Pedialyte. Right now we're doing 20 ml per hour. I can't get him to drink any fluids by mouth during the day.

And on top of all that, he has been EXTREMELY fussy and often times inconsolable. I don't think it's physical pain because when I put him in the car or put on one very specific video or let him play with his ball popper, he's fine. But ANYTHING else ticks him off - including going places, even Target. He's never been unhappy in Target. My mom moved into a new house today, and I took him over there for about an hour and a half this afternoon, and he fussed and cried the entire time. We're having a hard time finding time to leave the house between nap times, food prep, 45 min to one hour feeding sessions, clean up and dressing change. This past week, he got to go to church on Sunday and Target on Friday. And then we got out once today. But even when we do get out, the only time he's happy is in the car... not when we arrive at our destination.

I haven't blogged much about all of this because honestly, I've been so tired, frustrated, and ticked off, I knew I would just sound whiny and be a downer. So anyway, I'm going to try not to complain too much, but it has been a long week.

I really ask for prayers for whatever is going on with Jonah that's making him so difficult. Maybe it's teething, but it sure is selective teething. I'm really wondering if it's behavioral and if it's that Jonah is cooped up in this house so much, he's really starting to have trouble adjusting to situations outside of the normal (our toys, our house, me). That makes me so sad.

So anyway, I'm looking forward to next week, and I'm so glad Matt's off work on Monday.

32 comments:

Amanda said...

Sounds like he's right at that age to get his molars in. My 17 month old just cut his a little over a month ago, and let me tell you, that was a LONG week. Certain things would tick him off, and he would just cry. I think they "forget" about the teething pain until they get upset, and then once their upset--they remember their mouth hurts----at least that is how it has been with my kids that whine when they cut teeth.

I know Jonah pretty much hates eating anything, but a good way to try a curb the teething pain (if that's what it is_ is to freeze a banana for 3-4 hours, and then let him bite on it. It will provide something cool to the gums, and if Jonah likes bananas--well--it's a 2 for 1 special for you.

HTH, and I'll be praying for him this week.

Jennifer said...

Praying for you. I know you are all going through what I hope is growing pains. It's tough. No doubt about that. I will keep on praying for you guys. One step forward (I know you keep thinking, yeah, and two steps back but hang in there) You DO have forward progress. He is crawling! Love to you! Jennifer in Southeast, NC

Laura A said...

Hi Patrice -

Sorry this week's been so yucky. My first thought was teeth as well - it can seem selective, because as long as there's something to distract him or he's doing something he enjoys, he's not thinking about the pain so much. It could also be one of those famous, inexplicable "toddler phases!"

All that to say - once again I'm out of wisdom. Happens alot these days. Praise God that He will give you wisdom, peace and encouragement! I'm praying for sweet Jonah to have peace as well - and ALWAYS for healing.

Love,
Laura

Robin said...

he also is at a stage where he is developing his behavior patterns. this is when children start to act up and test their boundaries. he is seeing how far he has to go to get his way. put rules and consequences in place--he's a smart cookie and you're going to have to NIP IT in the bud!! all kiddoes go through it and i'm sure his special needs make it even more difficult, but it must be done.

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

I am so sorry for you Patrice. I know this is the frustrating part for you because you don't know if it is an EB thing or just a little baby Jonah growing into Toddler Jonah thing.

I hope you know you have our prayers and love...I wish I really "knew" you...I would so help you out with anything you needed...groceries, errond running...what ever. I know sometimes no one can really help...as a stay home mom myself, there are days where you just wanna pull your hair out. The kids are ill because they are inside, so...you take them out and they go CRAZY and people look at you like...hey CRAZY lady, get your CRAZY kids out of here...then, next time your child is the angel and the other googly eyed mom's kid is the CRAZY one...and suddenly, you realize...the world works it all out. EVERYONE has those days wheather they want to admit it or not! Love to you and yours...praying for a FANTASTIC day tomorrow!

Mommy Attorney said...

I'm sorry. I'm sure it's so hard to know if this is normal stuff or EB stuff. I do remember having weeks like that when MP was around Jonah's age. The molars can be awful. We always found that advil or motrin worked better for pain relief than tylenol, if it's something he can have. I'll pray for you, as always.

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

Just me again...please forgive the grammer and spelling...placed it before I checked it...and it is late, been a long day in this neck of the woods too...

The Simmons Family said...

Sorry about the crappy week. It sounds like ours! :) I keep saying that tomorrow will be a better day!

Teething? Constipation? Weather Changes? I wish they came with a manual sometimes.

Praying your weekend goes a little better with Matt home. Does Jonah like to swing? That is Owen's favorite thing to do, even when he is grumpy. A little bucket swing hung from the patio works wonders!

The calorie counting, spreedsheet making, kitchen cleaning... it will get easier with time. I promise.

Jennifer Strosnider said...

oh sister! you need to vent! i don't know how you do it, you are my hero! i'll be praying for you guys, it makes my little complaints seem like nothing. you're doing such a great job. hang in there pal. xo

the-mommy-person said...

My son is almost 2 and we're just on the verge of getting over a similar experience. For a couple of days there was a fever to go along with his inconsolableness, but now that's gone and he still has been out of this world hysterical. Like, "DON'T even THINK about looking at me!" Can't look, touch, or talk to him when he's got that look on his face. lol

Stef said...

Going along with the molars and in conjunction with that, he could be getting overstimulated with all of the adjustments going on right now in his little world, especially when taken somewhere like Target (target even overstimulates me sometimes lol) Maybe try "little trips" outside the house, like walking to the park or around the neighborhood, since you said he likes the car maybe he likes the stroller too? If the weather isnt nice outside you can go to the local mall before it opens and walk inside (with the mall-walkers)...anything to get out of the house!
Also, does Jonah have a lovie/soothie? If there is a blanket or bear or such that he is especially partial too make sure you have that with you when you go out, maybe it can help bring him down a bit.

as written by Barbara said...

Patrice,
Lots of prayers and hugs!!
Barbara Lyman :-)
Marysville, WA

Sara said...

Patrice,
I have never commented before but I just wanted you to know you have prayers coming from Ok. Jonah is so precious and you are doing a tremendous job... keep persevering friend! May God's peace fill your heart through these tough days.
Sara

Bridgesfam said...

My daughter (who is 2.5)went from being really easygoing to having seemingly random moments of crankiness throughout the day when she was around 1 1/2. Some days she'd only have a couple of moments and others she'd have quite a bit more. I had no idea what was going on but did notice that once all her molars were in, she went back to normal (until the terrible twos reared its ugly head). The reason I wasn't sure of it being her teeth was because of the randomness of her crankiness. But I can't be for sure if this was it. It could have been a development stage for all I really know. But I just wanted you to know it could be his molars. Kids like to switch things up on us all the time. Hopefully he'll go back to his normal self soon.

Ryley @ That's My Family! said...

I've said it before.. but I sincerely wonder if he has a food intolerance or food allergy. Maybe keep a food journal for just a bit to see if the throwing up comes after eating a specific thing.
My son has a protien allergy and throws up if he eats anything with protien. His biggest triggers are rice and oats! The 2 things that are supposed to be the BEST for babies...
Just a thought. .as always.. the prayers will continue! :)

natalie said...

Every.single.mother can attest to what you just wrote. There are times (phases) that drive us bonkers and we feel whiny and fussy and out of sorts ourselves. Don't ever hesitate to let it all out. I know your burden is different (and often heavier), but we're here to support you and lift you up. Don't feel like you have to hide the bad days. I'll be praying for you that this week is much better for you and Jonah. {{hugs}}

Nancy said...

Oh Patrice, we will be praying for you. I know this is probably very very hard for you, but if you can, please try to get out for a tiny bit by yourself to recharge your batteries.

Crysgoss said...

Praying for you guys!

Just Me - MJ said...

Thinking of & praying for you all hoping that whatever's bugging Jonah will work its way out of his system soon enough!

Ellie said...

I can't even begin to imagine what you are going through, except for the stuck-at-home part. I can't drive for 6 months due to a seizure, so I am trying to figure out what to do with an 18 month old and 4 year old at home all day every day. It's hard!

Carol said...

You have done so far and so great. Don't get down...things will turn around. I would vote for the teething, and I know tons of babies who are fine in the car so I don't think it is behavioral. He really has been given a bum deal and maybe he is just expressing his frustration the only way he knows how. If I had to wear something tightly wrapped around my arms and legs all the time I would fuss too. You are awesome! Oh, and thanks for the cute thank you for Jonah's watercolor. I didn't expect that. You are so busy. Hope you enjoy it and find room for it. Love, Carol

Kat and Crew said...

could it be his ears? my boys always trick me with ear infections. they are fine one min and crazy crying the next. just a thought. PRAYERS for your cutie!!

Lari said...

So sorry you've had a rough week. Hope he's better and you can have a nice weekend all together. I think sometimes around this age they get frustrated too...they can't tell you exactly what they want or do exactly what they want, etc. My Caleb (almost 15 mo)has some days like that too. Hang in there...praying for you!

Tracie said...

I'm so sorry you had a rough week. I agree that it could be teething OR behavioral. I warn you...if you figure out it is behavioral, you still need to set rules and limits. I hated doing it with my dd because of her severe eczema and misery so I realize how hard it will be for you (because we all know that severe eczema isn't even a drop in the bucket compared to EB).
I'm not assuming that I know the answer to your problem and I hope it doesn't sound that way.
I'll be praying extra hard for all of you!

Heather said...

How frustrating! I'm so sorry!

It could be teething...my son has selective fussiness when teething, but he'll get happy when distracted. I can't imagine it would cause that much vomit though. I will be praying that God gives you wisdom on what is going on. You must be at your wit's end.

diane said...

hi, patricia :) i know you probably are getting overwhelmed w/advice, but i have to give my 2 cents. food allergies are GROSSLY undiagnosed, so i concur w/the food diary. are his poops really mucussy? runny? food allergies are tough to diagnose, but it makes a huge difference in all areas!

my first thought was an ear infection, but teething could alos be a possibility. you could try giving him some motrin/tylenol 20 min before a meal to see if that makes a difference in his eating.

so sorry you are going through this! i have a 3yo son, and i can't tell you how many times i've gone through these stages of wondering why he is so fussy and not eating. when i'm at the point of insanity, he gets better :)

take care, and we are praying for you!

the*4*of*us said...

ok, so my guy is right at the same age as Jonah...and I could have written this post, minus the feeding tube and switch puke with poop. The fussing is driving. me. nuts. He's cutting his top molars and that's all I can figure is going on. He cut his bottom a few weeks ago and it was nothing like this.
Praying for you (and myself, too!)

Courtney said...

Maybe the shots making Jonah grumpy? I've heard they do that...p.s. I love pediped shoes. They are the best ever!

Masto Mama said...

Could he have acid reflux? G-tubes can cause it in someone who didn't have it before, and it can make it worse in a person who had it already. My daughter had horrible silent acid reflux and acted just like you described all the time until we figured it out and treated it. I say silent because you can't see it happening like with vomiting, but I bet it's going on with all the vomiting he was doing.

I'll pray for you guys--((hugs))!

Tricia said...

sounds age appropriate to me... they all tend to get fussy and clingy and particular about everything at that age. oh the things the books don't tell you... hang in there. i am praying for you. :)

ANewKindOfPerfect said...

It is so hard to get through weeks like this! My Peanut had a rough, cranky week also. It is so tiring! When all they do is whine and cry and want to be held and nothing else, it's hard. I hope that this week is a better week!

Elizabeth said...

oh goodness...I know this kind of week. I follow your blog through my best friend Melissa - whose son Luke has EB. I have a one year old - and teething was NEVER a big deal until the molars started coming in. I went to the pediatrician 2 times in 2 weeks - because I swore something was just. not. right. i am praying that is all it is - and that your sweet little guy gets back to himself ASAP.