Tuesday, October 29, 2013

Life is a party

Well, at least for these kids lately. When is the schedule supposed to slow down?? The boys had a birthday party on Saturday afternoon, and then a Halloween party that night. My brother is in Wisconsin this week and stayed with us for a few days, so the boys have had so much fun! They have another Halloween party on Thursday prior to trick-or-treating this week, so the fun will continue...

Painting pumpkins at Ethan's birthday party.

Loving the pinata!

Ohhh, Brady's a vampire!

Jax's FIRST balloon to blow up!

The house was non-stop "hut hut HIKE" with Uncle Adam.

Adam and the boys.

Brady in the waiting room with Jay's cousin Ben. I was inside the NICU looking at baby Grayson.

Thursday, October 24, 2013

Time to bring in the big guns

The week has been a bit of a roller coaster. I gave Jax a half dose of his Prednisolone (liquid steroid) on Monday night to wean him down, and by Tuesday afternoon, the school nurse called me to pick him up. He was having asthma that she didn't feel was controlled, so I picked him up and headed straight to the doctor before Brady was home.

The doctor said she could hear wheezing in his lungs (about 2 hrs after his inhaler) and he wasn't ready to wean off the steroids. So, he was put back on the full doses with the plan for a follow up on Friday. I gave him a full dose that night and he was doing great on Wednesday. He had a class trip out to a farm that day, so the teachers kept a close eye on him. Sure enough, I was called just before 3pm to let me know they had to give him a dose of Albuterol (even though it was only 3 hrs since I gave him some). Then I was called 15 minutes later by the teacher saying she wasn't comfortable putting him on the bus, so I ran and got both boys. The teachers and aide said he was great through the farm, but noticed he got quiet on the short bus ride back to school and then he started his symptoms (red cheeks, short of breath when talking, less energy).

Our pediatrician called me that night to talk about what was going on. I said he was stable and I was comfortable waiting to see her until Friday (I have a pulse ox monitor at home). She has decided that Jax needs to start seeing a specialist to try and control this. We just can not go through this winter with so much missed school, activities, events and of course, it's not safe to keep pumping Jax full of so many steroids, that aren't really working! I feel so bad for him.

Jax will see the Allergy/Immunologist that I actually saw this past summer (he did his residency at Childrens Hospital) and hopefully he can find the right preventative medications to help Jax from going down these dangerous roads! Our pediatrician works with him often, so she said she'll have a full phone conference with him before our appointment (Nov 11).
Hopefully the pediatrician will clear Jax tomorrow to start weaning off this high dose of Prednisolone!

In Brady-news, he's been working SO hard on new sounds and words with his therapist. She emailed us and said he's doing really great with these words:

They are currently working on these three words:
scary (holiday theme)

He is cruising along so much faster than he was last year. Last year he had to have his IEP goals changed when they realized he couldn't work on words, but rather only sounds. His IEP goals this year is 15 words, and he's got 7 already! The therapist is over the moon!
I can't wait for him to master his m-sounds and move to 'B' some day. I smile thinking of him being able to say his NAME some day :)

The boys didn't have school today, so we spent a few hours down in the playroom (away from technology) and built a new train route. *I* kinda want more tracks to really pimp it out!

Saturday, October 19, 2013

Fun Ride

We've been riding the croup/asthma merry-go-round all week. The boys finished up their steroids on Wednesday, and they were looking good with a left over cough. They went to school on Thursday (I went with to volunteer and keep an eye on Jax) and we watched him totally deteriorate that afternoon. He got pale, nauseous, and the coughing picked up again. I took him home early and I noticed he started a low grade fever. He went straight to the doctor Friday morning and the doctor definitely didn't like his decline on day 5, so he was given 6 more days of steroids (3 full days and 3 days of tapering off). She said his asthma wasn't holding with the croup virus and he started declining 24 hrs after his last dose, so back on he went!
Jax has to go back in next week for a lung-check and to get his flu shot. He's also going to get his daily preventative medication changed to Advair now as well to try and avoid these awful weeks.
Brady got his shot on Friday when I brought Jax in and WHEW, that kid is NOT good at getting shots. He threw himself against the wall and fought me hard! Good thing he doesn't get shots often, geeze.

We were all supposed to go to Valparaiso, IN this weekend with Jason's family to see his cousin play football, but the doctor said no traveling for Jax this weekend. So Jax and I had a "Jaxon and Mama" day today, which was actually really enjoyable. He didn't know where Jason and the rest of the family went this weekend, and since Brady can't communicate well enough to tell him, he just thinks it's a "Daddy and Brady" day.

Jax and I started his Christmas list at Toyland at Fleet Farm and he was in HEAVEN. He thought it was even cool to pick out Christmas pj's for him and Brady. Oddly, we were encountered by some staff and asked to be in the commercial they were shooting. Um, sure, shoot, wish I had showered this day, gah!

Jax and I had movie-time cuddled up on the couch with some great books. He seemed like a rather happy camper when going to bed.

Jax last Monday feeling good on the way to school. I hope he looks like that this Monday!

Big B kicking back at the doctor's office last week. Given his love of costumes, you can imagine his love for the face mask... for days.

Jax's turn the next day. It really wipes him out though. Poor peanut fell into a deep sleep while the doctor and I were talking.

Some 'roid rage' moments from the boys...

This is when I knew Brady felt better!

I took pictures of toys that Jax picked out for his Christmas list. This one really cracked me up!

A ride in the Batmobile is a MUST on a date-day with Mama.

Monday, October 14, 2013


I've got to start updating more often so these posts aren't so long. I know, I know...

Well the good and fun things to report are that the teacher meeting I had at the house on Friday for Jax went really well. The meeting lasted almost 2 hours! But it was a great meeting, and I can officially say it's nice to get 'good' news about your child's academic achievements.  It's not that the boys have never had good reports from teachers, but there's been a lot of discussions about what they need to work on more than anything.
The teachers (his regular 4k teacher and his 'SN' teacher) said he is such a JOY in their class and they always look to him for the hard questions during group sessions. I was shocked, and I felt slightly bad for being shocked, but really?! They had the biggest smiles on their faces and said YES, he is one of the brightest and smartest kids, he just soaks up everything. Um... my heart SOARED in that moment!
I had volunteered in Jax's class the day before, so I was able to see him in his element and I'm so glad I did. He is great in class, but I was definitely reminded that his speech still needs a lot of work. At home, he's known as the talker, but comparing him to Brady isn't reality to how other 4-5 yr olds speak. If I wasn't looking at Jax and what the teacher was holding up, I actually didn't understand what he said half the time. I think we are so used to the language used in the house, we forget that words outside the home and out of context for us are much harder for him to pronounce.
The teachers also said they had zero concern about ADHD for Jax like their was concern last year. He attends and is extremely engaged during group sessions and story time. They see his 'attention' really flutter around when he is asked to do something he is uncomfortable with like writing and drawing. His IEP states he needs to sit by a teacher or aide during this time, and they said it really does help to keep him focused.
He also 'flutters' during play time and is very interested in what everyone else is doing, so he'll go from one activity to the next rather quick. So those are the 'attention' things they need to work on.

Otherwise, Friday evening was fun for the boys. Rachel and Janel came over and tried to bake up as many of our apples that we could that we picked last weekend. We made three recipes and there's STILL a ton left!

On Saturday, we hung at the house and babysat baby Santina for a bit. Jason worked in the yard a lot this weekend  getting more of our bushes/trees cleared away.
Brady started a fever and slight cough this day, and instead of getting better, he was actually a bit worse today (Monday). We thought his cough was a bit too 'croupy' sounding, so I brought him to the doctor and sent Jax to school. Sure enough, he has croup, ugh. The doc said there's some really bad strains going around right now which is making it last 4-5 bad nights instead of the 2-3 as usual. So we'll be on 'stridor' watch with him. He is starting a steroid, so hopefully that will help...

Jax came off the bus looking ill. Say it with me everyone, L.O.V.E.L.Y.
A note in his backpack said he started going downhill the last hour of school and looked nauseous.  The bus driver said he didn't say a word the whole way home. I got him in and checked his temp. About 100 already. Boo. I have a call into the doc asking if we could treat with steroids as a preventative, or if that's something that people don't do and I just made that up, lol. He's already vomited once. I'm just cringing at the thought of what this is going to do to him!

I did however get a phone call from Brady's speech therapist saying that while Brady was out sick today, she took the time to talk to the kids about his iPad and how Brady talks differently than they do. She showed them how it's only for him and her to touch and how he'll use it to talk with them. She said they were all so receptive and sweet about it and they talked about how they still want to play with him and they will try to be patient and kind when he's trying to tell them things. They recorded their voices for many of the photos, so it's the voice of children instead of her. Um... I cried. Heart strings pulled!

Jax peeling up some apples. We kept Santina busy with lots of SNACKS :)

Brady and Rachel measuring the ingredients. And yes, he's in his Halloween costume. He wears it most every second of every day now.

Look at all the leftover apples!!!

Wednesday, October 9, 2013

Need planting help!

Wanna know what makes me happy? Well, one thing that makes me happy? Carpet cleaning day! Woo, I'm wild and crazy these days! We've had a busy little day at Casa de Lettenberger with the cable guy coming by to fix things, Jax's medical supply order arriving, his monthly hGH being delivered and prepping the house this morning for our carpets and area rugs to be cleaned. I LOVE clean things, but now we'll be on the boys to be careful about shoes and spills for awhile. WHICH, a certain little boy spilled his chocolate Pediasure on the basement carpet Sunday night prompted me to get the carpets cleaned this week rather than waiting until November as planned. We eat dinner downstairs most Sundays, and there was a bit of an unexpected mess with a dropped cup, oops. I think we're going to enforce cups with lids while eating/drinking over carpet to avoid that drama for awhile.

Otherwise it's business as usual. Jax has stayed on task with announcing LIBRARY DAY when waking up... so we wonder if he'll do that EVERY Wednesday this year, lol!

We had a great time at the apple orchard and pumpkin farm on Sunday, but the lines definitely made the day drag on about 90 minutes longer than we would've liked, but ce la vie. I can't wait to see the pictures from the photo shoot we did while out there! I'm glad we picked that activity to do the photos because the boys were really having such a great time and those are the best memories and moments to capture at this age, isn't it? They REALLY thought picking apples off trees was just so cool.

So, we're in the process of trimming down and back as much of our FORREST as possible, and the trees/bushes/shrubs in front of the garage are all coming down. I have photos below, please help with suggestions!

Jax loving his Packers sweatshirt that used to belong to cousin Aidan!

Our apple bounty! Rachel and I are going to bake them all up with the boys on Friday.

Apple Cidar donuts. MMMM we ate these warm and fresh from the farm while waiting in line for the hay ride :)

(sigh...) Jason is in the process of cutting down, grinding down, pulling out (etc) ALL of our front bushes/trees.

The problem is, we have NO plan for what should go back in! HELP! We'd love to plant this fall yet, any ideas?!

Saturday, October 5, 2013

School Progress

We are just scootin' along this week. The boys were so happy to be back in school, and Jax woke us up early on Wednesday morning to proclaim that it was 'LIBRARY DAY'. Yeah, slightly obsessed.

I spoke with his teacher about some difficulties they've been having at snack-time with him. He WANTS to 'eat' the snack with the other kids, but since it takes him so long, there's not enough time for him to drink all his Pediasure. So they've been taking him out of playtime to drink half of it. This of course has been upsetting him. I told the teacher to let him 'eat' with the kids and to only expect him to drink as much Pediasure as the kids are expected water. It's just one snack and we'll worry about calorie consumption at home. So that's all set, and I also start volunteering at the boy's school each Thursday starting this week. I'll switch between their classrooms every other week.

Brady's therapist emailed us his progress so far and he can say "school" and "house" now! He has to think about it first, but he definitely says it properly, WOOT WOOT! He's now working on "My, More and Mess". His therapist is so happy to be getting words out of him this year since she realized last year they could only work on sounds. She said it feels like a major accomplishment as a therapist to get a severely apraxic child to accomplish goals, yes!!

Jax's therapist emailed me back about how he'll struggle through sentences with repeating the first part many times. She said it happens when children are rapidly expanding their sentences while trying to figure out the new structures to use, and especially when they are really excited and trying to get their thoughts out quickly. We all know Jax's speeds are fast, faster and fastest when organizing his thoughts and language, so this makes sense. She said we'll keep an eye on it for sure, especially if the repeating starts with parts of a word, rather than a sentence. What would work best for Jax right now is to stop the activity and give him our full attention. Asking him to slow down may make him forget his thought (given his speed, and lack of attention at times) so we'll be working on that.

I love all this communication with the boy's school staff!

Jax had feeding therapy and occupational therapy on Friday, and we've noticed he's taken a slight step back with his oral feeding. He's been pocketing his food again. Of course his therapy sessions are up and he hasn't been approved for more since we've submitted for more. The insurance keeps coming back asking for more and more info including Jax's latest IEP from school. So, hopefully that comes through quickly to keep Jax on track.

It's the weekend and we're home on this rainy Saturday, trying to keep the boys healthy! We did scoot out to a friend's restaurant in Slinger last night. Brady decided to wear his police uniform costume. That's normal, right?
Jay is outside cutting down, pulling out and winterizing our yard. I'm pretty sure I have no bushes left around my yard. Who wants to come plant for us in the spring?!
Tomorrow we are having family photos out at a pumpkin/apple farm, and the weather looks decent. Wish us luck on a few good shots... and a farm that's not SO busy that it's impossible to enjoy the day!

The boys play soccer most days while waiting for the bus.

Jax working on his "homework".

Brady and I having milk and cookies while we wait for Jax in OT.

The boys just LOVE this thing at the hospital. Can you tell?

Tuesday, October 1, 2013

Fun times

That is meant to be serious and sarcastic all at the same time!
Jason helped run and participate in a celebrity softball tournament this weekend and the boys were in heaven of course. Jose Canseco and his ID twin brother Ozzy were on Jason's team which raised money for childhood cancer. The weather was beautiful (until the home run derby portion later on Saturday night after we left) and everyone got oustide, great!

The bad part is that I got the boy's bug and it started on Saturday. I felt tired all day and had a headache, but I just kept attributing it to not eating or drinking enough water that busy day. By the time I left the ballpark, BAM, the fever started and I was down and out until Monday morning, boo. But hey, that's life, right? Just a reminder to get the flu shot/mist soon so I don't get the 'actual' flu, blah!

Jax's nose is running and he had asthma again after coming home from the park on Sunday evening, so that's another great monitoring we're doing. I think we're going to have to consider bringing him to a specialist this winter since his asthma keeps coming around even on the highest dose of his daily preventative. He takes the highest dose inhaler of Flovent twice daily, do any other asthma-moms out there have opinions/advice on daily meds for this? He doesn't have allergy-induced asthma (under developed lungs from IUGR) if that makes a difference - in other words, he'll never grow out of this.

Otherwise, we'll be trying to enjoy this random last burst of beautiful WARM weather these next few days (which I noticed drops 30 degrees to COLD by our picture-day on Sunday, of course!). In the wise words of Phil Robertson, "happy, happy, happy!".

Jason with the Canseco and Lettenberger twins

Watching some softball!