Friday, September 27, 2013

Sunnier Day

Whew! Jax woke up MUCH better today. I stayed ahead of his issues with Albuterol and Zofran in the middle of the night and he woke up smiling and asking for cartoons with an empty feeding bag of Pedialyte, yay!
We had a quiet morning of just going to the chiropractor, but we got out and enjoyed the beautiful fall day for the afternoon. I picked up 2 out of the 3 Rx's for Jax and apparently the insurance co is putting the nurse and pharmacy through the ringer to get Jax some Zofran. At this point it's to have it on hand given his issues when he gets sick, but how crazy is that? I understand that it's an extremely expensive drug, but how could anyone even question that Jax needs this? It's the only thing that keeps him out of the hospital when his GI system acts up with illness. So odd... I wonder if it makes a difference if the GI specialist orders it? Because Jax used to get it by the gallon back in the day. Hmm.
 

Have you ever wondered what I do when I'm stuck in the house with two sick kids? In between cleaning up puke, doing laundry, changing their clothes, giving baths, giving meds, checking temps, checking O2 and giving sips of fluids, apparently I do this...
Clean out, organize and label my spice cabinet...

Clean out the kitchen medicine cabinet resulting in an ENTIRE GARBAGE BAG full of old medication. 95% of Jax's and boy it brought back some memories!


Jax's old med-schedule... I left this up on the cabinet door to remind me that we are blessed.



The boys watching Mickey while I prepared lunch today.

Loving our walk around the neighborhood after lunch.

Jax at the barber.

A hot towel and shampoo?? Fabulous!

Thursday, September 26, 2013

The Sickies

Don't we all have a love/hate relationship with 'back-to-school'?? Ahh yes, the illnesses that the kids share, so lovely.
I had to pick Brady up from school on Tuesday because he started a fever. He then continued to decline once he was home and it turned out he had a full blown stomach bug. He vomited only twice, but slept off and on most of the time.
By Wednesday morning it was Jax's turn. Brady was better by that evening, but Jax is having a tough time kickin' this thing. He was up through the night with issues last night and today I just didn't like his breathing, or the fact I couldn't keep fluid in him for the second day, so we headed to the pediatrician.
The doc confirmed he was asthmatic and not moving air well through his lungs, so he received a breathing treatment, got a throat swab and did a little dehydration test for the doc. After one of his vomiting sessions, we noticed he had dried blood flakes in his vomit. ((sigh)) So we had to wait for the GI doctor to call our pediatrician back to discuss. Since Jax just had a good looking EGD with the GI doc, he suspected that Jax has irritated his tummy/throat from the constant vomiting over the past couple days, so he is going to start taking Prevacid to try and heal things up.
So the game plan is to keep Jax on Zofran (anti-vomiting med), start Prevacid, continue the Albuterol inhaler every 4 hrs and start a slow 2oz/hr Pedialyte pump on him tonight. I assume we'll be plugging him with Zofran as much as we can to actually keep some of that Pedialyte in him!
It's amazing how different the boys are with the same stomach bug, oy. I can't say enough how much HEALTH is a blessing.

Oh, and the pharmacy says they never received the Rx's, but they 'may' be in the voice mail and they'll get back to me tonight if it is in there. Um... thanks. The kid goes to bed at 7:30pm, so at this point I'm definitely annoyed that he didn't get that Prevacid. And I'm tired. And I'll probably be up tonight. People need to tread lightly, lol!

My sickies on Wednesday

Jax at the doctor. He told me after that he was smiling, lol.

Brady's school photo. There's actually a story as to why he's half smiling :) Love this kid.

Jax!

Tuesday, September 24, 2013

Part of Apraxia?

Gack, I'm so behind!
We've had a busy, yet quiet past week. The boys stayed by Rachel and Dennis' house Saturday night while Jay and I had a night in Chicago for our anniversary. It was so nice! The boys were both pretty pumped up to go back to school this week, so they're still liking that thankfully. I'm trying to figure out who all their teachers/therapists are and to keep them straight for each kiddo.
I found out yesterday that Jax has his original speech therapist that he he had the first time he was in 3k (he took it twice), so it's nice to have a familiar face for that knowing it's the most 'involved' therapy he needs.

The latest thing we've really noticed going on with Jax and his Speech Apraxia is that he will repeat the first part of a sentence up to eight times before he can spit out the end of the sentence. Almost like Porky Pig (for lack of a better example). If he's excited or talking too fast, he struggles to spit out the end of a sentence. I'm wondering if that's just a phase of the disorder, like if his language is just developing faster than his speech production so he stumbles a lot... ?? I'm not sure, but am happy to have the contact info again for his new therapist. Mostly he just does it quickly, like he'll say, "Are we, are we, are we, going to kool (school)?" But other times, it can be painful to watch him struggle and say it so many times that you just want to finish the sentence for him!
We have no idea if Brady really does this since his words are still rather difficult to understand, so it's hard to tell if it's just part of the process. If that makes any sense.

The boys are SO into books right now. So even though the speech/language is an issue for them, they still LOVE the written word with pictures. They can't get enough and 'library day' is their favorite day at school. I hope that lasts forever!

I visited a new part of the medical campus on Monday afternoon. I'm always on the east side of the grounds for Childrens Hospital, but now I've seen the other side - The Cancer Center, which is rather impressive. My grandmother has Stage 3 Multiple Myeloma and had an appointment with a specialist at Froedtert's Cancer Center. I was able to attend the appointment with my mom and Grandma and am so glad I did. She got some answers and a new game plan. And of course, a little hope - we're always looking for that in life, right?



With my Grandma.


Wednesday, September 18, 2013

Hello Nurse!

The boys got to know the school nurse this week! I called the nurse twice to inform her that Jax's asthma was acting up a tiny bit and that I gave him Albuterol at a specific time and I wanted her to check on him at certain times. That all worked out just fine, but when she called my phone yesterday, my heart sank assuming it was because of his asthma. Nope. He fell down hard in the gym. The therapy he is in for balance and coordination - how ironic, hey!?
He was fine, but we had to watch for head injury signs that night. I had an appointment set for Jax after school that day already for a lung check since Jax used Albuterol into day 3 (even though I felt confident he turned the corner that day and was ok). So the doc checked him out and he was fine.
The great news is that his pulse ox was 100%! Well, it was 99 and bumped up to 100 off and on. Um, Jax has NEVER had a pulse ox reading that high without oxygen on him. How great is that?!

Mr Brady had to see the nurse that day as well because he cut his finger open on the metal fence outside (trying to climb?). Well, the nurse has gotten to know the Lettenberger boys pretty well already! They didn't need to see her for any accidents all of last year, but they're ahead of schedule this year already!

Jax's cold is much better already, and he had a great feeding session at therapy tonight (appointment was moved to today after school instead of his usual Friday). Jax had been vomiting his snacks at school the past two days because of the runny nose/mucus, so today's therapy was good timing. He had some cheesy potato soup that I had made the night prior, two bites of cold pizza, half a cheese stick and a couple crackers (with a cup of Pediasure with heavy whipping cream of course). The therapist said he can tell Jax has regressed just a tiny bit from the cold, but hopefully he'll be back on course again.


Silly boys.


Is this Brady or Clay Matthews?


Jay and the kids playing a little ball after dinner tonight (Wed).

Sunday, September 15, 2013

Laid Back

We've had an extremely laid back weekend, which has been nice to relax together as a family, but it's mainly because of the weather and some sickie-bugs in the house. Jason was up all night Thursday night/Friday morning with a stomach virus. He actually stayed in bed most of the day Friday, EEK, that's how bad it was! This hustler never stops working, so you know it was bad! I was so scared that the boys or I would start it shortly after, but knock on wood, none so far. Jax started a runny nose on Friday as well, so taking it easy this weekend wasn't a hard sell.

They were able to get some good outdoor play in on Saturday since it was pretty nice and Jay and I tooled around in the yard working on various mini-projects.
I've been literally waiting for the boys to start a cold since starting school back up, and I'm pleasantly surprised at how minor it's been. KNOCK ON WOOD again of course. Jax's asthma came up a tiny bit today from the cold, so I treated him with some Albuterol and he's been running around like a monkey just fine so far. I'm going to put his humidifier on him tonight and turn his feeding pump waaay down. The last two nights of night feeding bothered him, so I'll learn my lesson!
Jason left this evening for work (blech, I hate it on Sunday nights too!) so here's to hoping the sickies stay manageable and this cold rain lifts soon!


Last Thursday. There are very few days, if any, of wearing shorts to school I think!

The boys at Childrens Hospital after Jax's Occupational Therapy on Friday.

Jax eating his first piece of cereal that was in a bowl with milk! He ate 3 pieces and was very weirded out by the whole situation, lol!

The boys are such goofballs while watching football on Sundays. They pretend to play the game and pretty much just wrestle the entire day.

Tuesday, September 10, 2013

Culture clubs

I went to a wedding back home (2 hrs north in Green Bay) with my mom this past weekend, and the gal I was talking to asked why the HECK does everyone know the same line dances and polka? I said I didn't know... oh, well, maybe the fact we had to take line dancing and polka in gym class during our middle school years could've had something to do with it. She almost spit out her drink laughing so hard. Well, DUH, YEAH, that's why all you northern Wisconsin people dance like this at weddings!!
So, is it like that elsewhere around the country? There are Electric Slides and a whole slew of line dancing/group dancing that goes on. I understand the polka given the extreme German/Polish influence in Wisconsin, but why all the line dancing?
She was also really disturbed by the random coleslaw and cranberry sauce sitting out on the tables before dinner was served. I told her all banquet/supper club type of restaurants always did that. She was mui confused. All the things people never think of or question if it's always been their way of life!


Exhibit A - Polka dancing and loving it.

Exhibit B - Group Dancing/Line Dancing and living the dream.


The "Green Bay Pour". During my last year of college I worked at a bar in GB. My friends from college came up to visit me one night. They could NOT get over how we poured our drinks, wine especially. So when I'm back home and receive a glass a wine, I still have to text photos of it to my old college buddies. Never gets old. Not even 11 years later.

I can't stop with the bus photos. I assume it will get chilly soon and I won't be doing this much longer, so hang in there with me please, lol!


Jax is showing me his boo-boo on his knee.



Just to annoy Nana Letts... (and this was right after a morning bath so their hair was wet, it looked better by school-time, but... still bad ass nonetheless.)

Friday, September 6, 2013

Biopsy results and a home visit

The biopsy results from Jax's EGD came back normal/negative, which is great, and mostly expected news. The doc believes Jax has an extremely sensitive GI system due to prematurity, that will hopefully continue to get better with time and growth.

The GI nurse called to tell me that the doc had called in a prescription (Cyproheptadine) for Jax to use that could help. It induces hunger and also relaxes the stomach. Buuuut it's an antihistamine drug as well, so it would make him sleepy. How in the heck am I supposed to give that to him when he wakes up and expect a productive day? So I decided to hold off on the med until I can talk to the doctor more about it.

The boy's school is closed every Friday for the months of Sept/Oct so the teachers can do home visits. The boys only have school Mon-Thurs anyway, so it makes no difference to us, but Brady's teacher already came to visit us on this first Friday! She said that "due to Brady's disability, she'd prefer to meet right away"... ouch.
The meeting went well. She brought Brady's speech therapist along as well and the scheduled 30 minute meeting lasted 90 minutes! We chatted for quite awhile. I told her that I loved the question, "What are your hopes and dreams for your child this year?" stated on her paperwork that she sent to the parents. I liked the way it was phrased for some reason.

I said that we don't have expectations of our preschooler learning how to do math or become seasoned readers. We just really want our kids to learn a lifetime foundation of kindness, generosity, compassion and how to start deep meaningful relationships. I think THAT will bring them the most happiness throughout their lives.
I know the academic stuff will come.. I mean, come on... like we'd ever let our kids go to bed without going over homework? We know they're cognitively healthy, and we're in it to help them learn 'academics' and be on top of whatever we can.  But that little window of soul-shaping is right NOW, and we'd really like THAT to happen.

Of course I have extreme fears that Brady's lack of expressive speech will really get in the way of learning and social situations, but we're going to just have to do what we can today, to help tomorrow.
One. Day. At. A. Time.

The ladies loved a baby photo of the boys that I had out, and Jax had an NG feeding tube in his nose and an oxygen cannula on his face. The teacher said, "Would you ever have imagined that you'd worry more about Brady in school when they were this age?"

Nope.
Not in our wildest dreams.

I mean... I might have a photo-taking-problem when we're waiting for the bus...

Brady was my lunch date while Jax was in feeding therapy. Look at his paper bib, HILARIOUS! He is an awesome one-on-one date at restaurants by the way. He eats every last crumb between both our plates.

We had a beautiful Friday afternoon outside today. I wish I could've bottled the day up to keep forever.

Tuesday, September 3, 2013

Back to School!

The boys started 4k today, too cute!
We soaked up the final days of summer this past week. The boys had their Open House and school photos on Thursday after Jax's OT appointment at the hospital. It was pretty chaotic, but I'm glad to drop off all those supplies and get familiar with their classrooms in advance. The boys are on different floors, but they didn't seem to mind. I think splitting them up now versus a year or two from now is probably best since we were able to make them think it was 'cool' to have their own teachers.
I just need to get used to two sets of teachers/aides/therapists/programs - there's so many for each of them!
Their teachers were SO nice and I could tell they examined the boy's IEPs in advance when meeting them. Brady's teacher only asked him "yes or no" questions and introduced him to his "special teacher" right away (he has a special needs teacher who observes him each day). I was so impressed that she knew to not ask him questions that required detailed speech responses, whew!
I've been trying to iron out the bus schedule since at first the boys were scheduled to be on the bus for over an HOUR each way... um, no. I got a call last night saying they gave them their own bus, but then the time was too close to class starting, so they were late today, so hopefully that all gets figured out by tomorrow. It's a new bus company with super cool 6 point harness seats, so no more harnesses, woot!

Jason with Derek and Kurt (graduated HS together) and all their kids Saturday afternoon for the Badger game. Our boys were just scolded for sticking out their tongues!

Yes, Saturday night football was on our patio with some neighbors.

Large water slide for a Labor Day party at our neighbor's house. The kids played from 12-8!

Large scavenger hunt after dinner!

I found Jay up in a tree on Sunday with our neighbor. Yup, cutting down branches and trees.. you know, totally normal...
First day of 4k!



Bus Driver - Mr Eric!

Jax looking HEALTHY! His new shoes that camo his ankle braces pretty good!

Brady during his Open House. I see he wrote his name front and CENTER on his class board.