Sunday, February 27, 2011

Crazy little men

Let it be known that Jason is no longer ever allowed to wake up on Sunday mornings and say, "Is it Monday yet?"... that about sums up the boy's behavior over the weekend.
They were monsters no matter what we did or where we went. There were many tantrums and many time outs on the naughty couch! There was even one immediate "take out to the car from the store" moment. I'm hoping this week proves to be a bit calmer.

Jax's tummy is still upset if his tummy gets too full, so he's had a lot of puke this weekend. I thought he did well over his nap time today, but it turned out he ripped his tube out and fed the bed. He's been keeping his nightly feed down, so that's at least nice. I'm just putting the pump much lower and giving him modified feeds to see how he does this week.

Brady has been "singing" a lot lately. If someone is singing on TV or the radio, he sings along in his Brady voice. He must dance at all times when hearing a good beat as well. I LOVE listening to him sing with his goose-honking voice, it's adorable. We think he said "hot" when he sat in the bathtub tonight. He thinks hot= warm since I tried teaching him that touching the oven was HOT and dangerous, so I had him feel the warmth to associate the word. So it's possible he said it when sitting in the warm water. I've been working on shapes with the boys by drawing them on their magnadoodle, and Brady seems to be able to point out a star and circle... sometimes :)

Brady has also proven he can no longer be in his crib unless he has backward pj's on and that includes nap time. He took his pants and diaper off (under his onsie) again on Saturday and peed everywhere. He was SO upset when I came to get him (I may have scared him with my reaction when I walked in) that he was in a meltdown mode for a good 20 minutes after that. So now we put the pj's on backwards, and so far, so good.

Otherwise, business is as usual around here. Our snow blower broke, which is almost comical at this point if you know us. Every 4-6 wks, something major breaks with the house, our car or our appliances/machines of some sort. It is never, ever ending. We just replaced the struts in our SUV 2 weeks ago, we're finally replacing the carpet that was ripped out last July from a leaking pipe, we planned on fixing our AC unit in April which broke in July (along with our furnace) and now... the snow blower... of course! If I gave you a list of everything from just the past year, you would have to chuckle with how long and downright silly the list is. Ahhh yes, such is life!

We have a busy week of appointments, and a fun visit planned over at Casa de Bonins after the chiropractor tomorrow. We hope everyone's week starts off great!

Thursday, February 24, 2011

A bug?

Jaxon had a rough night last night (Wednesday night) and was up vomiting between 1:20 - 3:30 am. This is totally out of character for him to get up in the middle of the night and get sick hours after finishing his food. His tummy is usually upset with volume, so I suspect it was/is a bug. His vomit stunk something AWFUL since it was actually digested in comparison to him consuming and bringing it back up rather quickly.
He was fine today, but he emptied his tummy half way through his breakfast like he's been doing the last few mornings. He took a 3 hr nap and kept his lunch in fine and was happy the rest of the night. He was crabby through speech therapy because he was tired, but he did decent in feeding therapy with holding his own Popsicle and rubbing in on his lips to lick off. So I'm keeping my eye on him and hoping he's not up again tonight.

Brady has been obsessed with his NOSE lately. He loves to put his fingers or toys in it, and now tonight he stuck his PEAS up a nostril during dinner and I had to fish it out! That kid! I also am trying to outsmart him by putting his zip up pj's on backwards. I never thought I could since they have feet, but hey, just twist them around! I need to keep his clothes on in that crib!


The boys were playing with their monkey backpacks and I realized Brady couldn't wear his the way pro-Jax can!

Wednesday, February 23, 2011

Poop!

(Sigh...) Well, it finally happened. Brady took his pants off while in his crib during his nap and managed to get his diaper off and pull it through his onsie. I walked in on a HUGE mess of poo all over the crib, blankets, sheets, pillows and himself. Needless to say he went directly into the tub and once he was clean, I had to strip his bed, disinfect the bathroom floor, bag up the sacrificed onsie and start laundry so I could have his bed ready before bedtime.
The funny thing is that Jax woke up that morning with a diaper busting at the seams with poop which just confirms our decision of going up a size in diapers on our next purchase (the boys have been in a size 4 for more than a year). And the other odd thing is that I changed Brady's diaper right before his nap and while we were walking up the stairs, he pooped, which annoyed me that I had to change him again just five minutes later... so walking in on such a poopy mess just 2 hours later was not fun.

After the boys went to bed, I threw potatoes in the oven, bleached out the boy's bathtub, showered myself and then ate a loaded potato that could not have had much nutritional value after I was done with it. Yes, it's the little things in life that make me happy.
Hey Jason, if you're reading this, you're not allowed to complain about not sleeping well in your hotel when I talk to you tomorrow, mmkay!


The boys are actually starting to "chill" by one another once in awhile.
Yes, that's Jax drinking his water from the cup.
(Please ignore the random clothes, Jax vomited on himself AND Brady and I grabbed clean clothes from the basket.)

Oh this steals my heart! Brady pretended to feed every single animal his cracker before putting them each away.

I should've known how today would go. Here are the boys at 7am this morning waiting for me to get Jax's backpack and Brady's breakfast ready. Notice he took off his pj pants. (sigh...)

Monday, February 21, 2011

We're still here!

Time has escaped me the last few days with updated the old blog, sorry guys!
The boys are doing pretty well. Jax has started to take a day or two here and there off from his vomiting, which is usually a good sign when it starts to break up like that. He typically will get sick once a day, but in general I can tell he's keeping enough calories in to be gaining some weight.
The boys are starting to repeat words once in awhile, and while the words aren't quite quality (hot = ha), they're starting to seem interested in communication a little bit more. Everything is still called "dada" and Jax seems to say "byebye dada" about 100 times a day. He waves and says "byebye dada" to everything, including inanimate objects like pickles or cereal while grocery shopping.
We think Brady is saying "all done" but it's kind of unclear yet if he is. Brady still seems to understand more than Jax, but Jax says more words. They're sort of their own yin and yang that way.

Brady has decided he'll eat meat now that we've introduced "dipping" to him. If you put ketchup or BBQ sauce on his plate, he'll eat an entire hot dog, chicken nuggets or fish sticks now. That really helps me with his menu! Although nothing is off limits to his dipping, including bananas, string cheese or any other veggie or fruit... it all goes right into the ketchup!

I took Jax to the chiropractor today and his neck seems to be doing a lot better, but he's been limping/dragging/pronouncing his left leg the past 2 weeks. He hobbles a bit, so I've been keeping his braces and shoes on a lot more to try and help train his leg. The chiropractor has been doing some messaging and adjustments to it. He's just never acquired a seamless stride while walking yet.

We've been working on getting Jax's pump rate up, and it's slow, but steady. We're hanging around 80 ml's/hr (that's about 2.5 oz an hour) to keep him from getting sick. His oral feeding is still pretty slow, but we're also on an off-week of his medicine that induces hunger. If we can keep him cold and virus-free the next few weeks, we may see some progress there. We need to be training before Jax has his next Feeding Clinic follow up in April where they'll decide if he's ready for the inpatient program yet. We have our eyes on the prize.
Otherwise business is usual here at Casa de Lettenberger.

My cupboards will never be the same...
(Brady)

Jax is modeling Brady's crafting skills of necklace making.


Brady is holding up hearts for our friend Brook's sweet girlies, Sydney & Carynne. Tuesday and Wednesday this week mark 2 years since we lost these beautiful girls. They are loved and missed every day.

To donate to Families of SMA, follow this link, thank you. http://www.fsma.org/Fundraising/WaysToGive/

Wednesday, February 16, 2011

Missing and kissing Daddy


Jaxon went on a coloring spree all over the house. Thank goodness for washable crayons.

Brady pulled down our wedding photo and kissed Daddy.

Then Jax wanted in on the smooching.

So Brady grabbed our family photo and finished up the Love-Fest.

The boys tore apart the "naughty couch" and Brady stacked up the cushions to make a headrest at just the right angle to see Sesame Street from the playroom.
(Notice the path of destruction from room-to-room)

Monday, February 14, 2011

Happy Valentines Day!

I wish I had a cute photo of my little sweeties to share with you all for today, but I was gone through the weekend, and didn't catch one this busy Monday morning - sorry!
Jason was with the boys all weekend, and he did a great job. He said he enjoyed time alone with them since he's been gone so much (and is gone a lot these next two weeks as well). I had a nice break and was able to miss all my men to get re-charged.
Everyone is doing pretty well here, and I hope you all are too! Happy Valentines Day and happy 5 years together with my sweety!

Thursday, February 10, 2011

Mmmm popsicles!

The boys are doing well. Jax's tummy seems to be doing a little bit better and he's held down the last few meals just fine. It's time to slowly work his rate back up now.
The boys did well in speech therapy today working on UP and DOWN. They say "UH" and "DAW" and point in the directions. Jax tried a juice popsicle today. He liked it against his lips to taste, but when the therapist took a spoon of it to his mouth, Jax was NOT happy with that. But he didn't gag, so that's a plus! Although he wouldn't open his mouth anymore after that, not surprisingly!
Brady has been taking his pants and socks off every chance he has. He loves to take them off in the bathroom and stand by the toilet like Dad. He has zero clue WHY Dad does this, but it's nice to see him copy some of it.

Jax's first popsicle taste!

Tuesday, February 8, 2011

Feeding Tube Awareness Week

It's true... we love a Tubie named Jaxon, and if you know him, you love one too.

Feb 6 - Feb 12, 2011 is Feeding Tube Awareness Week

This organization is trying to get a Tubie on Sesame Street, so please click and support.
http://feedingtubeawareness.com

Decent weigh-in!

I was quite shocked at Jaxon's appointment yesterday. He actually gained some weight! He weighed in at 22lbs 15 oz, yay! I met with the pediatric psychologist and the dietitian and they were so pleased to see that Jax made it through a fever and cold without a hospitalization or weight lose. I'm really learning how to manipulate his pump rate and food volume to avoid dehydration decently.
Jax is getting better, but he's definitely not 100% yet. He still needs a rather slow pump and will have a vomiting episode about once a day. Last night I thought he went the entire day without a vomit, but he woke up when I took him off his pump last night and had quite the tummy-emptying episode. His diaper was also filled to the brim, so I don't think he was in a deep sleep when I came in.
My job is to work on getting his pump rate back up very slowly, but not to push him. The boys have rather runny noses today (where does this come from??) but were wrestling most of the morning, so nothing that's too big of deal at all. I'll be wiping noses and hopefully avoiding vomit today, I hope the rest of you have a good day! :)

Update: Jax is actually not keeping much food down again and his poo has gotten runny, as well as his nose. Looks like I'll be slowing the pump down even further and starting his humidifier back up to see if it helps.

Sunday, February 6, 2011

Football in the house

We spent the entire weekend home trying to keep the germs away. We managed to get some errands done on Saturday, but for the most part, we soaked up some time at home since Jason has been gone so much and also since we've all been sick. Brady is totally better, and Jax is certainly getting there. He wasn't able to keep all his breakfast down, but today was the first time I gave his full amount and turned the pump up a little. The morning is always hardest for him (as are all our tummies), but he did fine the rest of the day and night.
I'll be bringing Jax to the dietitian for a weigh-in tomorrow morning and I'm sure she won't be happy with his weight, but hopefully she'll take in consideration his illness. I'll be bringing Jax to the chiropractor directly after since his last adjustment on Friday showed his neck and back to be pretty screwed up from all the heaving last week.
The boys had a fun day today (Sunday) with Nana Jayne visiting and with the Superbowl on later in the day. Jaxon and I represented Green Bay and Brady and Jason represented Pittsburgh. The boys LOVED the halftime show right before bed. Jaxon and I danced through the whole thing.
Titletown brought the Lombardi trophy back home! That would be the Packers for any of you non-midwest folks. I'd like to give a shout-out to my Grandpa (who Jaxon is named after) since some of my earlier football memories as a child is watching the games at Grandpa's house while he yelled at Lindy Infante on the TV, and I ate cheese curds and drank root beer. Good times Grandpa!


I made popsicles out of organic yogurts, puddings and juice to start working with Jax's feeding therapy this week. I have no idea how he's going to take this!

Jaxon is a superstar getting his haircut by Nana now!
Brady... not so much anymore...

The boys representin'

Friday, February 4, 2011

On the mend

We're trying to finish this nasty bug up in the house. I've been able to manipulate Jax's pump enough to where he only had 1 vomit yesterday, but also not his full amount of food. I've got him on a very low pump rate of 60ml's/hr (2 oz every hour) and I only gave him 5 oz of food this morning at the very slow rate. He still vomited, but he was having a meltdown when he did it, and only a little came up since the slow rate allows him to digest most of his food before he can accumulate too much food in there. So he's staying hydrated and hopefully he'll be able to handle more food in his tummy over the weekend.

He had a very runny nose this morning, so it was good timing to start him back up on his medication that he was on a 2 week hiatus of. It's an antihistamine, so it should dry him up when sleeping and laying down and hopefully cause less gagging. He's enjoying a long nap right now on a slow pump and I'll keep you all updated!

Jaxon yesterday. Lookin' a little sick, but still smiling.

Wednesday, February 2, 2011

Sick bunnies

It's hit the entire house. The boys both had fevers today and Jax didn't keep any food down. I let his tummy calm down from his last afternoon vomit and then hand-syringed in 10ml's of Pedialyte every 20 minutes, which equaled a total of 1.5 oz. Then I gave him Zofran (anti-vomiting medication) 15 minutes before bedtime and then started 7 oz of food on a very low rate of his pump. He fell asleep fast even with a 2 hr nap, so time will tell how he does through the night.
I gave Brady some Tylenol for his fever and he's soundly sleeping as well. Jason called in a plow for our driveway so I have access out if need be. I hope this doesn't last very long!

Tuesday, February 1, 2011

Normal EEG!

I received a call from a nurse to tell me that Jax's EEG results were normal, yay! But the Neurologist needs to review the information and decide if it's sufficient enough, or if he wants a longer EEG performed with Jaxon sleeping. So I'll be waiting for a call with that decision.

Jax has had diarrhea for the last day and a half now, so he clearly has some sort of bug. Brady has a runny nose, and of course Jason and I are sick. My cold seems to be getting worse rather than better, so I'm hoping it doesn't blow up into anything worse and goes away soon. Jax continues with his daily vomits lately, but thankfully with no other cold symptoms. I think I may cut his morning feed down and try to squeeze it in through the day to keep some of those calories in.
The boys and I are snowed in until Jason is home late Thursday night, so we're just hangin' tough at the house.

I love finding Brady coloring on things he's supposed to!

He's been reading magazines a lot lately. Here's Brady reading during his snack. It's so cute!
And yes, he took off his pj's and ran around in his onsie.
(Yes, I let the boys stay in pj's today)