Monday, November 25, 2013

Teacher Conferences and Recovery

The boys are recovering nicely from the nasty bug last week. Jax finished his antibiotics for his ear infection, and the neb treatments have stopped too. It's so nice to drop a few steps in the daily process! Brady's croup has stayed away and he just has the lingering slight cough and runny nose, but he's doing great.
That bug just couldn't resist taking ME down though, haha! Ugh. I knew Jax had been swabbed and cultured showing he didn't have strep, so I let my sore throat go... and go... and go... asking Jason repeatedly if he still had his (we both got the bug, which is impossible not to when the boys are coughing in our face) and he kept saying his was gone. Why wasn't MINE?
So, finally after a sleepless night Saturday night, I couldn't take it any longer and hit up the Urgent Care on Sunday morning. Sure enough, my gland is all infected, so I bought myself a week of antibiotics. It IS slightly just a running joke around here now.

Otherwise, the boys had a great weekend during their annual deer-hunting trip back home at Nana and Papa's, while this mama got a jump on her Christmas shopping for the weekend. Which was all done via computer since I wasn't feeling the best. The boys think it's SO cool that Daddy 'deer hunts', but they have no idea what that actually means. We live in a conservancy with a LOT of deer that we feed and watch grow around the house, so the boys are just not ready to understand what 'hunting' really means for another year... or three, lol.
Although at bath time last night, Brady started bawling, saying that he was scared because "Daddy shot a deer"... whaaaaaat?! Jason thinks he may have pieced it together because there was a 'Hunting Video Game' at the restaurant they were at the night before. So we had to do some damage control to calm him down for bed. Kids are much more observant than we give them credit!

I totally forgot to update about the boy's teacher conferences last week. They went great. It's always so intimidating to meet for Jaxon's because it's a TEAM of people circled around a tiny table. His OT, PT, Speech, SN teacher and 4k teacher and us makes 7 people! But it was nice to touch base with everyone.
His gross motor skills are cruising along so nice, and he's trying so hard with his fine motor skills, but that definitely remains his biggest challenge (writing and drawing). The SN teacher is so impressed with his pre-reading skills, which is more like word-recognition we assume, but she wants to actually test him since he randomly 'reads' things we wouldn't assume he'd have word recognition for. His speech therapist said he's working hard and gave us some flash cards she specially made for him to work on at home. The 4k teacher is just over the moon for Jax in general and said he's the kindest, funniest and most popular of the class. Jason and I were SO happy with his report. We always feared for the boys socially given their differences.

Brady's report was great too, but he only has a speech therapist, SN teacher and the 4k teacher, but yet he has the bigger disability that interferes with his school-needs. He's doing great using his computer to communicate and so far it hasn't caused issues with having friends, and the boys all want to sit at his table, so that made us smile.
I asked if his speech disorder was going to be a major roadblock for him learning to read and write, and they said they think he has an advantage since he SEES all the words written that he uses on his computer. So his word-recognition is slightly higher than his peers right now. So, that was nice to hear, but there will definitely be some roadblocks he'll have to work hard to overcome. They're already talking about how they'll have a big meeting at the end of the year with the kindergarten team for next year for him, since his 'need' for the computer will most likely be necessary.
He IS actually doing well in speech this year and using sounds and letters he wasn't able to last year, so we have tons of hope!


My lunch date during Jax's therapy. Brady is so fun.

Jax's 'stuff' to be packed each time! My counters were so clear over the weekend!

Our neighbor's dropped a large box of costumes at our front door that their boys outgrew (she works for a costume company). So guess what our boys have been doing since 6:30am today?


Wednesday, November 20, 2013

It's just a cruel joke at this point

Jax is definitely improving and doing well, but Brady was a different story over the past few days. He started coughing Sunday night, and we've been HOPING it's Jax's cold. The cough got worse each day and it blew up Tuesday night to croup. Again.
For reals.
I tried a bunch of croup-tricks to get the barking seal-cough to subside, but it was relentless getting late into the night, and we were all just so tired from being up nights prior. Finally, I found an old Rx of Prednisolone from his last bout of croup and it was like ANGELS SINGING when I saw that! I gave him a dose and gave him ice chips thru the nebulizer. His coughing came down and he got some rest. I had Jax in the guest room by this point to get some rest and to not be around a hacking child in fear it was a different virus.
We were woken up to Jax holding his g-tube in his hand at 6am telling me his tubie fell out. (sigh) I could tell then that this week just keeps on going!

I took both boys to the doctor before school today and the doc was more than ok with me giving Brady the steroid dose and she actually gave me extra to keep on hand for future issues. I just need to bring Brady in the next day any time I choose to use it. She also wants his ENT (who we see Monday) to review the fact that Brady continues to struggle with croup. I'm not sure what he would do or suggest, but I've got that noted.

Jax checked out pretty good too. The fact he still needs Albuterol on day 12 is a bit of a bummer. The doc called his asthma specialist and they both agreed things need to be changed again. So now Jax is starting an Advair inhaler twice a day with a dose of Singular through his tube as his daily preventative. When he becomes ill, then he'll also use the nebulizer for the Budesonide and Albuterol. So, when he's not sick, it will be nice to not have to use the nebulizer... I guess that's the silver lining. Otherwise it feels like being a nurse with all his meds lately. Jax needs to see the asthma specialist in 4 weeks to see how it's working - hopefully no more issues like all this!

The boys also saw the dentist yesterday before school. They did great! No cavities, but Jax had a lot of calcification on his back molars since we can't always get in there when he's sick and gagging/pukey. They got that off and they were able to get X-Rays of the back teeth (not the front) so we're so proud how far he's come with having all these instruments and tools in his mouth now! This pediatric dentist crew is so amazing with children who have extra 'needs'.

Tomorrow, we have parent-teacher conferences, so I'm sure I'll have news to report about that!


They do this non-stop around the house. I love how Brady always takes it one step further, lol!



Sunday, November 17, 2013

Couldn't kick it

Looking forward to the weekend didn't prove to be restful. Jax got pretty sick later in the day on Friday. He said his throat hurt, his vomiting picked up and we could barely keep up with his breathing treatments. We were up all night trying to help him (he sounded like Darth Vadar with his congestion), but we were able to forge through. Our pediatrician's office was closed Saturday (they hold Saturday hours every other weekend) but we were referred out to their partner facility who saw us right away in the morning.

The doctor was so nice and great with Jax. He said he could hear wheezing in his lungs even after 1 hour of his Albuterol treatment, so he was put on a 4-day steroid dose. I'm praying this doesn't end up like the last time he was on it and needing it for 10 days. He also found an ear infection (in the ear that doesn't have the tube) so Jax got some antibiotics as well. It's been since last spring since either boys had an antibiotic, so I can't even remember if this one causes GI upset or not.

I hate hearing anything is wrong with Jax, but at least it answered why things got worse on day 5/6 of a cold. I may try to get Jax in to see his regular pediatrician tomorrow to have her listen to his lungs to see if things are going in the right direction. We can tell he's definitely better already, but he still has this lingering cough between breathing treatments that isn't typical for him. Who knows, maybe tomorrow that will clear up too.

Just when we think things are simplifying for Jax medically, we find ourselves feeling like around-the-clock nurses for him day after day. He has to get his neb treatment immediately when waking (possibly through the night as well if he has issues) and every 4 hrs after, then he gets his Prilosec (reflux med) through the tube and sometimes I give Zofran at this point depending on his tummy, then after waiting a bit, he gets his antibiotic and steroid with some food through the tube. He's still getting his eye drops 3x/day for the next few days as well. I'm hoping this week heals him up nicely and we can drop some of these!

The good news is that after an entire week of having to be tube-fed, he's stared taking food a bit by mouth again. He took 2 bites of mashed potatoes on Saturday night, and about 10 bites of yogurt with 3oz of Pediasure on Sunday night. We kind of 'made him', but that's not untypical. He's getting feeding therapy before school on Thursday and then at lunch on Friday. Hopefully two sessions back-to-back will help get back on track.

Brady has been a trooper and not sick at all (KNOCK ON WOOD), while Jay and I started sore throats and headaches Friday night. The lack of sleep doesn't help, but at least Jax got his throat swabbed so we know it's just part of a cold that should clear up.

We actually have a busy week of appointments (shocking I know), but a few of the appointments are ones that were moved from 4 weeks ago when the boys were sick, so I'm praying we can keep them. I have to see the dentist Monday, the boys do on Tuesday - which they are SO excited about and I don't know why, then the chiropractor Wednesday and then Thursday/Friday is feeding therapy with OT. I'm hoping they'll actually get a full week (Mon-Thurs) of school for once too on top of that. The boys will be going up to Manitowoc for their yearly deer-hunting weekend with Jason next weekend, so let's hope they all are healthy!



Brady and I waiting for the bus last Thursday (Jax stayed home).

This is how Jax came out to me from Occupational Therapy on Friday. Working on that muscle tone!

And here he went downhill. Thank goodness for iPads to help get through these long and loud treatments.

Wednesday, November 13, 2013

Ready for the weekend already!

What a WEEK and it's only Wednesday, huh.

Jax saw the specialist on Monday for his asthma and the plan of attack is to go back to using the nebulizer (he used it as a toddler) and to use Albuterol in it at the first sign of a cold no matter what, and to continue the twice daily preventatives as well.
While at the doctor's office, Jax had a temperature of 100.3. (sigh) He started a cold. Which we were kind of expecting since his stomach was upset over the weekend (see last post). So I've been tube-feeding him half feeds and doing all the extra neb-treatments. He stayed home on Monday, but went yesterday and today.
When I saw the school nurse calling me today, I seriously starred at the phone in disbelief. Well... she was calling because his eyes were having a lot of drainage. What? She wasn't calling because of vomit or asthma, but his eyes.

The boys came home about an hour later on the bus, and HOLY GUACAMOLE (in Jax's words) Jax looked awful. He had nasty yellow goop flowing all over his face and he just looked miserable. I called the pediatrician right away and got drops called in, along with a refill on Zofran (anti-nausea med). About an hour later, right before Jason was going to pick up the med, we noticed Brady had some sliiiiight yellow drainage coming from his eye. Oy. I called the pediatrician back (just before closing) to request another bottle of drops for him as well.

Ask me how fun it was to put drops in their eyes.

Jason will be gone all day/evening tomorrow and the thought of how I will have to literally sit on my kids to get these drops in makes me not want tomorrow to come, gah!

Our baby girl that we were watching went home this morning, so I had to text Rachel the news that we have a big pink-eye breakout happen. Real nice. Downright lovely!

I can't help but laugh at the circus-like life in this house sometimes. I swear I have a rather clean, tidy and downright (mostly) organized home. I feel like it sounds like we live in a pig pen with all the viruses, infections, asthma flair ups and bugs that the kids get! Ick.

In funny news, Jax asked me during one of Santina's diaper changes, if all girls had pee-pees on the inside.
Priceless.
I wish I could bottle up that innocence forever.



Brady and I cooking dinner on Tuesday night.



Sunday, November 10, 2013

Party of five

We are getting a little taste of what it's like to be a family of five this week. We're watching our friend's baby, Santina, and it sure does bring back old memories. I found myself wondering how people handle twins at this age?! I think we blocked it out, LOL! She's been fun for all of us.

We're wondering if Jax will be starting a cold or something here in the next day or two because his GI system has been acting up since Friday. He's gagged or puked each day and even did it at Feeding Therapy too. We shall see... boo, I hate this for the little elf.
He did well at his Occupational Therapy session on Friday and showed me how he was learning zippers. He did the vest from the clinic pretty well, but he still struggles with his own jacket. His fine motor skills would be better if he had better muscle tone and strength, but he's working on it! His penmanship is what lacks the most, but I'm getting Jax a chalkboard/dry erase board table top easel this Christmas that should really help. Brady will enjoy it more, but we'll have to really push Jax.

Brady is really into writing (copying words/letters) and drawing in a notebook lately. He even crosses off each day of the week on a calendar. The boys couldn't be more different with that kind of stuff!

Jax has his appointment with the specialist for his asthma tomorrow. I'm hoping we find a new preventative to help him this winter! He keeps saying he'll see "the doctor who will help him with his breathing medicine tomorrow". He's very methodical, and likes to know who he's going to see, for what, and at which clinic/building/office and how it will affect his school day (will he still ride the bus, or am I driving him). It's pretty cute!


So smiley in the morning!

We took advantage of a tree-trade-in sale at Steins and got a new tree this year. The boys were a bit bummed that it was stored away when we got home. I think they're a bit confused about Thanksgiving/Christmas/Holidays etc from the stores. But they sure do LOVE Christmas decorations! Jax informed us that we needed a lot more inside this year...

Love Brady!

Some fall-ball.

After tree-shopping, we had a Saturday night dinner date!

This is what happens when you leave your child with me :) (Rachel is a Bear's fan)

Sunday Funday in the basement.

Priceless.

Wednesday, November 6, 2013

He's on his way!

Jax had an amazing GI/Feeding team followup at the hospital this week. He gained 6% of his body weight in the past quarter and now weighs 29.5lbs! His height is 38 1/4", so he's definitely growing, but we won't know if he's doing any 'catch up growth' until his appointment with the Endocrinologist in February. Maybe Brady is having a growth spurt, because Jax's height compared to him, doesn't seem to be closing any gap, eh, but who knows!
Jax is currently at 91% ideal body weight. He's doing great! (which being short helps those percentages obviously!)
We'll see if he can get his % up at his next appointment in 3 months to see if we can start reducing his tube-feedings. He's on his way! The team was blown away by Jax's speech/language development and his overall matured demeanor. They said they've seen the most development out of him this year, so that was nice to hear!
We started him back on Prevacid daily to help with the night/morning gagging and reflux he's been doing, which seems to aggravate his asthma (or it's the other way around). I noticed he was doing a little cough or gag (not sure) in the past week at night and early morning and I realized we were done with his Prevacid that the doc put him on for the past month (he had dried blood in his vomit with that stomach virus a month ago). So the GI doc thinks it helps him overall and we should give it a try for a few months to see if it helps again.


What's on your face Brady? Oh... marker... (and yes, he's in his costume every moment that he's not at school).

Jax all proud at the GI specialist's office. He told the doc he wanted to be a doctor when he grew up and the doc gave him his stethoscope to keep!

The boys before school on Tuesday. Their summer hair is growing out and you can see Brady has my hair texture and Jax has Jason's!

Sunday, November 3, 2013

Hello November!

The boys had a blast on Halloween, although we could've done without the downpour of rain halfway through trick-or-treating! We attended a small gathering at the neighbor's house and then headed out with a slight drizzle, which got nasty. We got home pretty wet, but the boys were so happy.

I don't mean to sound negative toward October and all the festivities, but I'm so happy to see it go! Gah, it was just non-stop and I'm ready for things to maybe slow down a bit?? You know, right before all the major holidays, ha!

We headed up to Green Bay on Saturday for a quick visit with my mom and grandma for lunch, and to see Uncle Adam and cousin Marley one last time before Adam headed back home to Texas. It was a nice visit, and we were still able to get the boys home in time for dinner and bed in time... NOT that they slept accordingly to day light savings like every other little kid in the country I'm sure!

Jax has his quarterly Feeding/GI team followup at the hospital tomorrow afternoon, and I'm actually excited to see how his growth has been. We haven't noticed much height-growth on him, but he's definitely gained weight. I'm hoping we can start coming down on his night-tube-feeding. We'll see what the dietician says!

My cute Halloween lunch date.

Mario and Luigi ready to trick-or-treat!

The boys with their cousin Marley.

Nana Jayne, Marley and the boys playing some games.

 A little Twister action.

The great grandkids with Grandma Carol.