Sunday, October 31, 2010

Happy Holloween!

We've enjoyed the Halloween weekend. The boys got to meet up with their friends Cecilia and Marshall at the zoo, meet their new cousin Olivia AND wear costumes off and on throughout the weekend while having a blast.
Both kids are in pretty good health. Jax lost his breakfast on Saturday morning, but he was having a temper tantrum and we were on our way out the door, so that wasn't totally unexpected. His new drug Cholostyramine doesn't seem to working as well even though we've ramped him up to the 3x/day. His diarrhea has snuck back, although it's not as watery. We know it's not the GI virus that Brady had last week since that virus had a fever and the smelly bacteria diarrhea that came every hour or two. This is Jax's old standard once or twice a day without any unusual smell or fevers, lethargy or increase of occurrence. So, we'll be talking with the GI doc about it all at the next GI appt as to why he just can't shake this for so long (7 months).

I have so many pictures to share!


I found Brady giving his doll (Ben) a nebulizer treatment.

Cecilia and Marshall were dressed as yummy eats - a cupcake and a berger!

Yup, same costumes for these cats as last year... they got longer, but not much heavier!

All the kids watching fish at the zoo.

Brady Beans - roar!

Jax wanted to pick off Marhall's sesame seeds!

Amy with new cousin Olivia!

John with his gorgeous girl~

Yes... the boys wore their animal heads as hats while doing errands around town on Sunday.


Just a normal day at Sams Club!

BRADY!
(He always wears my sunglasses - my little diva!)

I love excuses to make cupcakes!

Pumpkin Pizza of course!

My Berger Boys!

Thursday, October 28, 2010

Baby girls!

The boys are doing well. Brady's symptoms are slowing way down and he's getting some great relief. Jax's vomiting has been absent these last few days which is great too.
We're excited to meet two new baby girls over the next week! Cousins John and Amy had little Olivia Marie a couple weeks ago and we get to meet her this weekend, and best friends Sidney and Scott had baby Macy Vera today! We're going to visit next weekend. I'm excited to hold these baby GIRLS :)

I received some AWESOME gifts from winning the Mindful Mama monthly contest. I was nominated for the August Mama of the Month (for a mother caring for a child with special needs) http://www.facebook.com/pages/Mindful-Mama/109104709107402#!/pages/Mindful-Mama/109104709107402. I can't believe I won, thanks everyone!. I received some fantastic books from Barefoot Books (http://www.barefootbooks.com/) for the kids and a wonderful assortment of things from Pangea Organics (http://www.pangeaorganics.com/). I also received a generous gift card to Fair Indigo (http://www.fairindigo.com/) of which I donated to another MoM who was in the contest. So a big THANK YOU to everyone who voted for me and to the sponsors who donated their products, so sweet!

Pangea Organics loot!
(Notice TWO eye creams... haha, ugh)

Awesome books we'll enjoy for years!

Tuesday, October 26, 2010

Love Monkeys

We took both kids to the pediatrician yesterday. Jax's follow up went well. His lungs sounded great so we were instructed on future use of the breathing treatments. He'll continue to get once a day nebs with Budesonide each morning and use the Albuterol as cough medicine in a sense when he has a cold to counter act an "attack".
He's rambunctious and totally normal other than the daily vomits. Although he went all day yesterday without any and I stopped his pump early this morning when he was gagging, so he's doing good in our world. He only weighed 22lbs with his diaper and socks on though, so that's not great. We'll be reassessing at the next GI appt next month with a dietitian and further talks about other GI issues. Jax weighed exactly 22lbs on Halloween last year, so that's one full year. That certainly bugs me a bit.

Brady definitely has a GI virus right now causing all this diarrhea (and AWFUL diaper rash). His fever has lifted and we're just "feeding through" the virus. I'm going to switch him to soy milk this week to see if it helps. Ick, viral diarrhea is MUCH more gross than the daily stuff Jax would have. There's certainly a difference! The diarrhea is expected for a full 10 days, so that's a good time here! We're nervous that Jax will get this since it's almost impossible to keep things from each other that are so contagious like this. Let's cross our fingers that it stays put! Brady only weighed in at 23.5lbs, so really, he's only 1.5lbs more! Since he's got an inch on Jax, they look very similar in size. The doctor said they're all muscle, haha!

I will say it's so interesting to see these boys at the doctor's office. The doctor was squatting on the floor listening to Jax's lungs (because he wanted to sit on the floor) and Brady walked up to her and played with her stethoscope and her hair and then Jax scooted into her and was basically hugging her. She said she loves it when the Lettenberger boys come with all their affection :)
My little love monkeys!

Sunday, October 24, 2010

Poo talk

What an eventful few days!
The Thumbraiser event was very successful and fun. We raised close to $4,500 by the end of the night, but I'm not sure of the final total since there are some donations still coming in. Awesome!
The boys had fun on Saturday with Nana Jayne and Nana Letts who stopped in from her trip. We even got our photo shoot done on Sunday at a nearby park. I'll admit it's much more enjoyable to take the boys to the park and play while getting photos taken, rather than sitting in front of a screen at a studio hoping they feel like smiling, so I really hope at least a few turn out. We shall see!

In kid-news, Brady is sick, boo! He started with diarrhea and a fever yesterday and it remains today. He's in good spirits, although VERY cuddly and clingy and his bottom is SUPER red and sore. He is miserable and waddling around uncomfortably. Changing his diaper is just awful... poor kiddo! We have our station all set up with Tylenol and all the diaper rash fixins to get through these nights. If his fever and diarrhea continues tomorrow, I'll try to get him into the pediatrician around the time I planned on bringing Jax in for his follow up to the "asthma" symptoms.

Jax is doing decent, although he's definitely vomiting about once a day. He has great energy and is just running EVERYWHERE. We've started him on Cholestyramine to help with his diarrhea. It's working pretty good, although we're not giving him the 3x/day amount recommended. We're giving it 1-2x/day to keep him going each day since he constipates easily. It's SO weird to see real poo come out of Jax!
So the plan is to remain on this and reassess in a few weeks. Jax has a Feeding Team appt at the end of next month where I'll get a second opinion from our other GI doctor. I just want to make sure we're not covering up a symptom of something bigger and to discuss the possible scope/colonoscopy to search for any culprits of the constant diarrhea and vomiting. We shall see, but until then, we'll keep on, keepin' on.


Our pumpkins we entered into the contest at our chiropractor's office.
It's Mama and her boys :)

Thursday, October 21, 2010

Thumbraiser!

Hey everyone!
One of my best friend's has had an unfortunate accident. Krista is a dear friend to me and is known as Auntie TeeTa to the boys. She had cut her hand which required surgery and is on the long road of recovery with physical therapy. Krista has dedicated her life to helping others through volunteer work and teaching troubled children. Krista was laid off and left without any health insurance before this accident, so you can imagine the mounting medical bills while she tirelessly has been looking for new employment. We've pulled a benefit together in Krista's name that will be taking place this Saturday. I wanted to help spread the word and hopefully some of you may want to help. The benefit will host a silent auction, drink specials, sales of bracelets that include food/drink, games with prizes and of course, lots of hugs from Krista I'm sure!
All the info of the event as well as a Paypal link for donations can be found on this website: http://www.thumbraiser.org/

Fifth Ward Pub
814 S. 2nd Street, Milwaukee
Saturday, October 23
5pm – 10pm
We’re crossing our fingers that you will join us.


Tuesday, October 19, 2010

Outdoor play

The boys are obsessed with the neighbor kid's and the swing set. Jax can now climb up the ladder which is cool, so the boys did plenty of laps. Brady is super brave with flying down the covered twisty slide, he's a maniac on that thing!
As fun as it is to bring them out to play, I don't look forward to the complete crying meltdowns that they have when you have to bring them in for lunch and dinner.

Jax is doing well. I'm going to only give him his once a day Budesonide breathing treatment now starting tomorrow. He has a check up with the pediatrician on Monday to check things out and make sure everything is okay. Jax had one small vomit about a half hour after his morning feed today. Usually we've been stopping his food early and giving him the rest later in the day, but I wanted to see if he could handle it yet (which isn't even the full recommended meal/calories that he SHOULD be getting), and he seemed totally fine by the end of the feed, so it was odd that he gagged 30 minutes later after it was done. His diarrhea has given him some bad diaper rash again. He was crying and holding his bottom tonight and sure enough it was very red and sore. Poor guy. I have a call into the GI nurse to discuss our options of next steps.

I took a bunch of photos today, enjoy...

The boys enjoying all the sea shells I brought them.

Brady mowing the lawn (shocking scene I know).

The boys playing peek-a-boo with me inside the play area of the swing set.

Jax was laughing hysterically.

The boys climbing up to the 2nd and then the 3rd level.

Brady!
Jax was escorted down the big slide by the neighbor kids.

Apparently a fireman's hat is what's needed to stop a tantrum.

Sunday, October 17, 2010

Homebound

Hello everyone! I wanted to update you all sooner, but unexpected things happen during travel. The day I arrived at my fellow MoM's home in Florida, her computer died, so I had planned to use her husband's laptop. Friday morning my friend and I woke up VERY sick. We got food poisoning from dinner on Thursday night and ended up in bed for a day and half. BOO!! I was so sad to see sunny skies and know I was a block from the beach, but I was so sick I couldn't move. But all is better now and I've tried to enjoy the day and a half I had left. I've walked the beach, enjoyed my friend and her family, collected shells for Jax and Brady and pretty much text messaged with Jason every 2 hrs through the whole trip. What can I say, I really miss my guys at home. I can't wait to see everyone tomorrow!

In kiddo-news, Jax is doing very well. His vomiting has subsided again since Wednesday and he's coming down on his breathing treatments. Jason said he's not coughing or wheezing and we're hoping to be done with the Albuterol treatments early this week and only use the morning Budesonide treatments now. His diarrhea is continuing, so I'll be addressing that with the GI nurse this week. I'd like to do a fructose test and discuss the scope/colonoscopy and see what the best options/course of action is. We shall see!
I think I'm going to keep the boys out of gymnastics this week yet to get them back on track (and they still have slight runny noses).
In total cuteness news, I hear both boys put their arms up and growl when you ask to see their muscles - swoon!

I'll throw a bunch of photos at you this week!

Tuesday, October 12, 2010

Breathing better

Jax is breathing much better today. The treatments are definitely helping. We can't believe how well he sits to take the treatments. He sits right on the couch holding a toy watching cartoons (turned way up since the machine is so loud).
Last night he got sick while in his crib, so we stripped everything down and gave him a 10pm bath. Jax was dozing off in my arms as we gave him a final breathing treatment. After the treatment he got sick again (thus another entire clothing change) and then was totally fine (a little hyper for a bit) and slept until 7:30am without a single cough. He was even better today and checked out great with the doctor, so we'll continue the treatment plan.
Jason and I are so exhausted because we were waiting on pins and needles to hear Jax cough and to check his breathing with the handy nebulizer in hand, but he never made a peep (while I'm turning into a crazy lady). He had a tiny bit of wheezing when he got up, but it was gone with the first treatment.
Hopefully we'll all get some rest tonight!

I'm leaving for Florida tomorrow afternoon (finally feel confident now that Jax is okay) so I will still try to update the blog with reports from Jason and Rachel. Here are a few pictures from Jax today with his fish mask nebulizer...

Morning treatment watching Handy Mandy and getting some breakfast too!

Lunch time Sesame Street.
He's so good at taking his treatments, so I assume they must make him feel better.

Monday, October 11, 2010

Chronic Lung Disease

We've had quite the eventful day (read: I'm exhausted). Jax was up through the night coughing and gagging, it was awful. I realized he was breathing very fast as if he had been running around. Today I realized you could see his ribs pretty sharply each time he breathed in as if it were hard for him to take each breath, but nothing emergent. I made a doctor appointment for the afternoon after his nap and in the meantime we got his final fitting for his braces done. Thankfully the boys were MUCH better behaved this time and did rather well.Jax will wear these braces inside his shoes a few hours each day and work our way up. He doesn't seem to mind them at all.

Jax was gagging all day and not keeping his food down with the coughing and such. By the time we got to the doctor's office, he seemed kind of fine and took his entire afternoon feed. About 10 minutes of being in the doctor's office, he coughed and vomited all over the waiting room's carpet. Oops. Good thing we were the only ones in there and the receptionist is practically family from knowing us so well.

The doctor listened to Jax and said she could actually hear him "wheezing" in his chest and agreed his chest retractions were bothersome. The fact he had no fever, was rather spunky when not gagging and was technically at the end of cold made her pretty confident as to what his problem was, but she waited to see how he'd do after an Albuterol nebulizer breathing treatment. As suspected, he did very well. She couldn't hear any more wheezing in his chest and seemed to be doing well.

Jax doesn't have a bacterial issue in his lungs (like bronchitis, RSV or pneumonia) but rather his lungs couldn't keep up any longer with his simple cold. All his running around now that he's mobile is just too much for him. Jason and I were warned about this when Jax came off the oxygen (looking at his lung X-Rays) that he may develop lung issues like Asthma.

Well, the doctor is not diagnosing him with Asthma just yet, but said he has a high chance of it happening. As for now, his Chronic Lung Disease is acting up (preemies who require oxygen support past 36wks of gestation) and this is a precursor to asthma. Meaning if this happens another time or two, he will be diagnosed with Asthma. We'll see what happens and cross that bridge when we get there.

So for now, we're giving Jax an Albuterol breathing treatment every 4-6 hrs during this cold. He also gets Budesonide twice a day (can be mixed with one of the other treatments at the same time) and when the cold is done, he'll be getting a daily treatment of this Budesonide through the winter to help protect his lungs during cold and flu season. We'll reassess in spring and go from there.
As for now, we'll give Jax these breathing treatments tonight and tomorrow morning and I'm bringing him back to the doctor at 11:30am tomorrow to check him out and make sure he's responding correctly to the current plan. If so, I'll remain as positive as possible and consider this some "medicine" to actually make him better. We never usually get handed something to make things better, so that will have to make up for my sinking feelings of another machine and more daily medicine.

Jax showing his new braces fit to his shoes.

Sunday, October 10, 2010

Sunny Days

We have been having beautiful weather and we know full well, this is the last of it until spring now. We took the boys to Apple Holler down in Racine on Saturday. We were all in jeans and sweating in the heat, despite my attempt to roll the boy's pants up higher. Apple Holler is a cute place with apple picking, pumpkin picking, hay rides, corn mazes, animals (you get the idea) but it was SO packed that it was hard to fully enjoy it. We spent the late morning in a toddler-friendly area and the boys just ran around and played.

On Sunday, we met a MoM-friend and her husband and kids (Valerie, Ryan, Cecilia and Marshall). Valerie had her twins at the same hospital as me, and her daughter Cecilia was spending her last week in the NICU when we got there. The kids all loved each other and were so well behaved! Well... if you don't count Jax being a bully on the playground and pushing a girl twice his size out of his way to get to the steering wheel on the jungle gym. He really has no idea how small he is - my little bruiser!

The boys now make the "touchdown" sign with both arms in the air in response to the word. Brady is in a phase where he mimics everything we do. He pretends to twirl his hair or sit with his chin in his hands or tap his fingers on the table. Basically anything we do, he does, he melts my heart!
Jax's vomiting is still doing "okay". He got sick at the end of gymnastics on Thursday which may have been because his stomach was full and he gulped down a bunch of water. And then today he woke up from his nap gagging. I got him out of his crib in time to catch a little vomit, but I can tell he's gagging on mucus. His nose is running like crazy, so we think it's setting off his gag reflex, rather than his stomach not feeling well. Right now Jason and I are listening to him gag in bed, so we're obviously really on our toes! So he's not doing "bad", just not super great. His diarrhea is pretty consistent again. He's such a little mystery.

Tomorrow Jax gets his Sure-Step foot braces, so wish me luck to keep my sanity with Jax getting a final fitting of these braces while wrangling Brady at the same time.

Jason with Jax in the corn maze


Brady on a big boy slide

My best attempt to get a photo with the boys

The boys walking unsteady on the hay hill

Oh Brady... he found the disposable sun glasses in the car from when he got his eyes dilated. Yes, he decided he needed to wear them into Target.

Brady and Cecilia on the playground at the zoo

Marshall and Jax

The ONLY picture of the 4 of them together. Jax just wanted to run. Brady, CeCe and Mars would've sat there all day if we let them!

Jax is a STINKER!

My guys with goats. Why are we always feeding goats??

The kids waiting for the train at the zoo
(Seriously, I have the shortest kids ever)

Brady looking at his new friends

Train ride!

Wednesday, October 6, 2010

Pucker up buttercup!

Jax's vomiting has been gone since the weekend, which is great. He's been taking his full feeds and doing really well. He had diarrhea for the past two days, and even some this morning and then suddenly this afternoon he had a diaper FULL of regular poo. I just don't get it. I've been giving him a little of his organic yogurt by mouth here and there which I can't tell if it's helping or making it worse since he's having good and bad poos. He had diarrhea for a full week when I gave him nothing, so that's not it. I'm going to see how he does over the next week and gauge things that way. As for now, we're enjoying the vomit-free days. Jax has been a bit crabby and clingy to me lately, but that could be any number of things at play.

Brady has been having the opposite problem of Jax lately. He's a bit on the constipated side (he can thank me for this update as a teenager I'm sure). Jason and I think it's his daily vitamin that has iron in it. So I'm going to try and give it to him every other day and give him a little fruit juice on the alternating days and see if that helps him. This kid has NEVER had an issue with this before, so this is new.

My new mission is to get the boys to kiss each other. They're SO good at kissing Jason and I multiple times a day, that I just want to see them do something nice to each other. They won't hug or hold hands at all, so I want to see this! Each time one of them is willing to do it and puckers up, the other decides he doesn't want to. It's my goal to see it before I leave on my trip next week. Ahhh yes, my trip to see my MoM friend Tamlyn in Florida. She surprised me with a ticket 2 months ago, and it's finally almost here. Exciting! I will get these kids to smooch before I leave!!!

Jax is scheduled to get his braces on Monday, but other than that, it's business as usual with gymnastics and therapy tomorrow.

Look at these bums watching TV while I make lunch!

* Side note.
Jax's chiropractor is helping me with finding a good balanced probiotic for him to use, so in doing research she also lent me a book about immunizations. I read some of it today and a few things really stuck out to me going through some of the horror stories some families went thru. (Disclaimer: I'm not starting controversy, this is purely me doing some research on a subject I have not had time to even consider given all the other medical issues needing addressing). Some of the stories included infants having reactions when given multiple immunizations at once. Some of the stories included intestinal bleeding, seizures, complete GI shut down, or nerve damage resulting in feeding tubes etc.
I had a light bulb moment about Jax being completely fine (fine meaning no vomiting or GI issues) for the first 2+ months of life while in the NICU and then suddenly started getting sick just before discharge. I frantically looked through old medical records to see if Jax was immunized before leaving the hospital or if it didn't happen until his first pediatrician appt afterwards. I found a record showing FIVE immunizations were given on 9/21/08 and he was released on 9/29/08 and seen in the ER on 9/30/08 and the rest was history.
I felt sick and started bawling my eyes out thinking of the possibility that we did this to him. Unknowningly of course, but still I couldn't stop the tears. I thought about it longer and realized the exact day of which Jax first vomited. I remember the day clearly because of who was visiting and the pictures from that day always stuck in my head. I frantically searched the blog (of which I did not chronical things nearly as detailed back then) and my online photo album which is labeled by date. I finally found the photos of the "day" and it was on 9/16/08. The day before Brady first started his reflux symptoms at home.
So it must not have been the source, I guess. But man, I sure had a panic moment that it could've been. Just another moment to add a wrinkle and take a day off my life...

Sunday, October 3, 2010

Donkeys and Firefighters, oh my!

We had a relaxing and interesting weekend. On Friday the boys received their flu shots... well... Brady got the inhalant flu shot, and Jax got the actual shot. The doctor said Jax doesn't qualify for the inhalant because of his respiratory history (chronic lung disease his first year) and he's labeled as "immunocompromised " because of his GI issues. The boys did pretty good through this process (read: small meltdowns vs complete meltdowns) and they loved saying hi to everyone. Brady weighed in at 23 1/2lbs, which is what we expected. It's nice to hear the nurse and receptionist say how HEALTHY the boys look. Even with runny noses, their energy level is high and they're happy little spit fires.

We took the boys to their eye exams afterwards (why not get it all done at once, hey?) and the boys were kind of monsters. They absolutely hated getting their eyes dilated, and didn't share very well in the play area, but thankfully we got through it and their eyes look great. We don't have to go back until they're 4 as long as there are no issues until then.

We took the boys to a petting farm/corn maze Friday evening (after a very nice long nap) for a birthday memorial for a friend of Jason's who passed away earlier in the summer. The family has a beautiful hobby farm out in Hartland that the boys just loved.

Our town fire department had an open house on Saturday, so the boys got a chance to get in their fire truck and hang out with the fire fighters. Sunday was a very laid back day with a trip to the grocery store and lots of football and playtime at home.

Jax is doing "okay" with his symptoms. He got sick on Saturday with some diarrhea (even though we did not give him any table food by mouth all week). It was odd though since he got sick within an hour of his morning feed and then was totally fine. He also gagged an hour AFTER his afternoon feed - not very common.
He didn't get sick at all today, although he had one normal stool and one "kind of" diarrhea stool. He still has a runny nose, so that may be a contributor, but as usual, who's to know!
We'll see how the next week or two plays out to decide what other steps to take. In the meantime (just in case) we picked up some organic yogurt and some pudding not containing fructose corn syrup (or added sugar for that matter) just to be safe to use in the meantime until we find out more answers.

I have TONS of photos for you all, enjoy!


The boys at the hobby farm on Friday.
They loved this dog, and of course Brady wanted to walk him by his leash!

Brady playing with gords

There were these hand made kid-sized houses for sale that the kids just loved!

Looking at the turkeys and the goat on the grass-roof!

The boys loved petting the minature donkeys with Olivia.
Both boys were rammed by the goats. Brady did not think it was funny!

Brady and his nice donkey.

Jason and Brady in the corn maze.

Jax and Olivia decided to lead the group.

Brady off in the corner with a cookie... shocking!

Boys in a tiny haunted house at the Fire Dept's open house.
Jax thought it was cool, and Brady was very unsure about it and wouldn't go all the way in.

A fireman helping the boys down the big inflatable slide.

Brady with his balloon and fire hat.

Jax too.

The boys driving the fire truck!

Mommy and Brady saving the day!

We all saved the day!

Jason and the boys rooting on the Steelers!
(Mommy wore a Packers fleece...)