Wednesday, March 28, 2012

Home

We have been out of town the past couple of days for Grandpa K's funeral services. It was so nice to see so much family, but it's never nice when it's for an occasion as sad as this. All I can hope is that the boys will have a memory or two of their great grandpa and enjoy stories about him when they're older.

The boys did extremely well at the funeral mass. We never attempted to have them sit through a church service to this point, so we were a little nervous of them disrupting things. Jax sat in the pew playing a silent video game and would watch the choir on the balcony. Brady was actually mesmerized with Father Dick conducting the service. I'm sure it helped that Brady knows Father Dick and Auntie Christa and Nana who also spoke, but wow, he sat silently for an entire hour watching all of it. Jason thinks Brady found his calling to be a pastor or priest some day. I'm sure Brady was thinking how neat it was that a person can stand in front of a crowd and everyone will watch and listen to this one person speak and sing, brilliant! :)
There were SO many people at the wake and the funeral. Many bishops, priests, nuns and a full congregation. They estimated 500 people just for the visitation... isn't that something? It's a testament to his life I believe.   

Back to reality...
Jason is out of town in Texas now for the rest of the week now, and the boys have their typical speech and school classes. I had a phone conversation with the district coordinator for early childhood development again expressing my concerns over Brady's progress. She is putting a team together to re-test Brady early to see if we can get him more help before the end of this school year. So hopefully I hear from her by the end of the week.

Our niece Marley is visiting this weekend, so that will be fun and a nice change of pace. Or I should say, it will be nice to add a female to the house for a little bit! I hope to sneak out of the house with her alone for some girly time at some point (did you hear that Uncle Jay?).

The fabulous foursome.

The boys "helping" me prepare some meals to freeze for this week.

The boys with Kelsey and Drew at their birthday party last Sunday. They were in HEAVEN and played non-stop.

Sunday, March 25, 2012

A good life

I feel like so much has happened since last posting. I will post about some things we did this weekend, but this particular post deserves it's complete respect to an amazing and loved person.

We received some really scary news on Friday night. Grandpa Klingeisen had gotten into a bad car accident and was flown up to St.Vincent's hospital in Green Bay. We had no further information than that, and we waited on pins and needles to hear from Jason's parents. Jason and his cousin planned to drive up to the ICU at the crack of dawn, but we received word from Jason's dad that Grandpa had passed away at 3am.
The cause of the accident is still unknown, but the doctors think he may have had a heart attack causing the accident. We're so sad and know that many people are as well. This is Jason's second grandparent to pass in just three months, and the third now in three years, it's just heart breaking.

Grandpa K was and is an inspiration to Jason's character, work ethic and love of family. He and Grandma cared deeply about the health and well being of our babies and because of them, I have my little family that are my world. I hope and pray for peace for all those who loved him and will miss him (and I know there are many).
http://www.legacy.com/obituaries/htrnews/obituary.aspx?page=lifestory&pid=156658177



"If Mama ain't happy, nobody is happy" - Grandpa K





Tuesday, March 20, 2012

What's your name?

Mr Jaxon can answer this question, yay! It sounds like, "Daxon" I think, but nonetheless, he answers! His teacher said that Jax will approximate each classmates name in class when doing the good morning song, and is pretty close with some of the names. His eating is getting better each day too. He still will have early meal gagging, but it much less intense and shorter (and not at every feed). He seems to sneeze a lot during meals which is funny... unless his mouth is full. Then it's not funny!

He ate manicotti, spaghettios and BBQ chicken just fine the last few days, so I'm very happy he's expanding what he'll accept. Oh, and some baby foods that I threw butter, sour cream or pudding in with for quick snacks.
Jax has his next clinic follow up in 2 weeks. If he gains weight, I will be discussing if we should pull an ounce out of his nightly tube-feeding. With the amount of food Jax is starting to take at each meal now, I would think that in two weeks, it may be a possibility to start weaning from the night feed - we shall see! Well, actually I'm supposed to do it myself if he takes a certain amount by mouth during the day, but I almost feel like it might be good to let Jax have "too much" food for a little bit before taking away that last tube feed. He could stand to gain a bit of weight!

I sat in on Brady's individual speech class today. It was with a sub-therapist who is usually the "aide" during Brady's regular class. I didn't find the session overly great, but noticed Brady was really squirrely and not very attentive to the therapist's requests. I wondered if it was because I was in the room, so I will wait outside for his next one on Tuesday (his group class is on Friday).
Brady went through a questionnaire with the therapist that Brady did his first day of class. He only scored one point above his baseline from last fall, so I'm sure that will be a discussion when his normal therapist comes back (she's on maternity leave). I was surprised (and slightly saddened for him) by some of Brady's answers.

A few questions he got wrong with flash card prompted answers (and were wrong 5 months ago) were:
Who feeds you breakfast? Mama or the mailman.
What is in the sky? Clouds or apples.
What is at a farm? Pigs or skittles (yes, the candy)
Does a cow meow?
(I can't remember the others)

So we'll see how this all correlates during the next IEP meeting this spring. I will say that Brady has so much INTENT when speaking back, so it kind of breaks your heart. I've noticed lately that it seems like he gives up trying to say words and immediately goes into whining mode when he wants something. I need to talk to the therapists about this and maybe start implementing a ring of flashcards for him to point to his need instead of the dreaded whining. The only problem is that there aren't flashcards for the daily 3 year old wants. Like... Spiderman's flipper...

The boys are starting to "get" that they should be going potty on the potty instead of their diapers. My neighbor gave me an old favorite book of her boys that she got in London. It's called, "Everybody Poos" and there's a great page of pictures that shows a baby pooing in his diaper (slightly graphic) a toddler boy on a potty, a big boy on a toilet and then a daddy on a toilet all on the same page. We talked about the pictures and they both had that "ah-ha" look like they suddenly understood that what they do in their DIAPER is what they're supposed to be doing on that darn potty that I always put them on!
So each morning now, I'll be putting them on their potties to sit while I make their breakfast. One of these mornings they'll be bound to tinkle and realize how to do it. I won't get my hopes up that it will be anytime soon, but if I have anything with "developments", it's patience!
So no formal training in that area yet (I'm actually not supposed to while food-training Jax) but I like to put the idea "out there" for them to maybe help things along when they do show they're ready.

Here's a few photos of the boys in their potty knowledge glory this morning!




They sat here looking at the book on the floor and taking peeks of the cartoon for an entire 20 minutes while I made them breakfast and prepped the school snacks etc. So cute!

Sunday, March 18, 2012

Happy St Pats weekend!

This weekend seemed to last forever! Now how many times will hear that??
The boys had fun at school on Friday and Jax ate some green pudding with his class. The boys played outside the entire afternoon with the neighbors and loved it. We all went to the YMCA in the afternoon and then we took the boys to Red Robin for dinner and we had a GREAT time. The boys were so well behaved and it was actually enjoyable. We fed Jax right before going to the restaurant, and that worked out good.
We were able to hang out with our neighbors a little bit after dinner to watch some of the basketball games. SPEAKING OF... Jason is immersed with his brackets and pools. His phone beeps with a text message pretty much hourly I swear! He was so happy to have lunch at a sports bar on Friday with some friends to talk non-stop brackets, and now this evening he's there with our neighbor - it just makes him so happy!

On Saturday, we took the boys down to Auntie Rachel's. She babysat for the afternoon so Jason and I could hit the outlet mall. The boys are NOT ready for such warm weather with their current wardrobe. They have mostly 24m/2t t-shirts from last season and this warm weather snuck up on us! The boys had a BLAST and of course took over the pugs like they own them. Jaxon ate great for Rachel and took his lunch and a snack for her (yay!).
We picked up the boys and then picked up Nana Letts from the airport and brought her back to her car at our house. Jason taught Jaxon how to blow a whistle. Let me tell you, I've heard enough whistle blowing now to fill a lifetime! Brady is hilarious because he doesn't get how to blow into the whistle yet, so he puts it up to his mouth and makes a whistle noise - love him!
We kept it low-key the rest of the night and after the boys were in bed, we actually did paperwork and worked the rest of the night. Now that I think of it, we should've drank some green beer or something to make it more festive!

On Sunday, the boys played outside most of the morning after coming home from the YMCA with Jason. We ran a few errands, but then used the rest of the day to let the kids outside while we did some spring cleaning. Jay cleaned out the garage (while chasing the boys) and I did all the bed linens and then odd things like getting the ladder upstairs to clean the ceiling fan. SUPER interesting isn't it??
We also did a small DIY home project today that turned out pretty decent. Jason is not the most patient or focused person when it comes to drawn out details, so I took most of it over.

And as of now, I'm going to eat cookies and watch Glee on Netflix and just SIT and be HAPPY myself! Enjoy the start of your week everyone!

Does this make us bad parents? We let Jax play a video game at the restaurant while we ate. He was engaged with us for half the time, but the other half he did this.

Brady having a blast hitting Jason with his balloon.

Our two leprechauns playing with their pugs at Rachels. (Thanks for the t-shirts Auntie Sidney!)


Ta-da! Some backsplash that we practiced on the butler pantry for the guinea pig. This small space took all day, and I can tell where I really figured out how to do it nicely, so I dislike half of it and like the other, go figure! Now to find time to do it to the kitchen or decide if we even want it there, hmm...

Thursday, March 15, 2012

Jump around!

There has been a LOT of playing outside and a lot of tears when having to come in. I've realized that since Jax is thirsty, I give him his high calorie milk as a drink for his snack and he will consume plenty for a "snack" so it cuts down on having to sit through a session.

Jax has been doing pretty good with food. A bit less behavioral puking, and a bit more volume back to where it's supposed to be. He is also accepting more tastes instead of just pb&j, pudding and yogurt. He's now taking mac & cheese, lasagna and veggies mixed with butter pretty good (all pureed of course).

I've been working with the boys on their Big Wheel bikes and Jax is starting to get it. His problem is that he's so short, he doesn't reach the peddles very well. Brady still doesn't understand the concept of PUSHING with his feet, but he'll get there. They love their scooters being outside now from Christmas and of course the good ole' Cozy Coops from last summer. Otherwise the kids have been running like crazy with the neighbor boys on swing sets, the trampoline and trying to make a basket with the basketballs. Spring is definitely in the air!

All the boys jumping around today.

I thought it was cute to see Jax play jungle safari with the neighbor's nanny. Notice he's pretending to look through binoculars with his hands, when he's wearing some around his neck!

Tuesday, March 13, 2012

A nice surprise

We got a nice surprise yesterday. My niece was in town shopping with her mom and they asked to stop by. Mondays are perfect for us, so it worked out nice! The boys were so excited to see Marley's games that she had on her IPod. They ran around like crazy monkeys playing tag and we had a nice little dinner.

Our weather continues to be unbelievably nice. I heard on the news that today tied a day in 1931 for being the warmest of this day. After I got the kids from school, we played outside for a bit. After Jay was done with work, we all went to the YMCA and now as I type this, the boys are walking with Jason around the block before an ice cream bed time snack.

I forgot to mention in my last post that I got a call from Jax's pediatrician checking in with things. She said she received a nice update from the GI specialist. She (the pedi) is contacting an Immunologist to discuss Jax's history. She said that she wanted to get a professional opinion on his immune system function since he showed some big system break downs over the last year. She said that she wasn't overly concerned that he got pneumonia given his lung history, but she was a bit concerned about how hard and fast his entire system would go down. She's hoping the specialist will order some specific tests, and the next time we're at the hospital for a feeding team checkup (in about 3 weeks) we'll stop by the lab for a blood draw.
If any treatable answer could come from it, I'm totally on board! So we'll see where that goes as I await a call back from the pediatrician with an update on all that.

Otherwise, we'll be enjoying this amazing weather and keep on, keeping on!

All the kids in stripes!

Sunday, March 11, 2012

Kicking off spring

What a gorgeous weekend we had!
On Friday, the boys enjoyed school and then Nana Letts came down on her way out of town. We all piled in and drove her to the airport and saw her off for her vacation with Auntie Christa and some other gals. On the drive back, we decided to stop up at a new pub that some friends own for dinner. The boys LOVED sharing a chair and playing video games. I was able to feed Jax an entire yogurt while he played the video game. We were a little nervous that he wouldn't eat anything while out of the house, and since we were on the road when we decided to go, we didn't feed him ahead of time like we're supposed to. Thankfully he ate a bit!

We got some much needed errands done on Saturday, as well as some work and play - it was so nice out!
We took the boys to the zoo first thing this morning (Sunday) and the boys just LOVED it. We went early, so there weren't a lot of people there. It was a lot of fun. We even tackled getting the boy's hair cut - very productive! Jay played with the boys outside for the afternoon and we got a taste of what summer will be when calling the boys in for dinner. WHEW! They HATE coming in and cry like crazy little people!

Jason took Brady to a batting cage to see some friends tonight and I got some alone time with Jax. It was a nice little weekend.
Jax was quite pukey with his feedings today. It's either behavioral or because of a slight runny nose. Either way, we still figure it out!


The boys all fired up by the gorilla exhibit!

Jax getting too close to a peacock.

The boys on a tracker in the family farm. We found ways to get Jax to take bites of ice cream during snack time.

Finishing up on a train ride!

Brady loving life!

Wednesday, March 7, 2012

Good behavior

Jax has been doing well with feeds regarding his behavior. He still has coughing, gagging and sometimes puking, but he is willing to sit and eat without much scolding or "therapy". He responds well to me counting to 3, since he knows he'll get a timeout no matter what.
I'm trying to feel him out when he's had enough, and today it worked well for lunch and dinner. I wish he could tell me he feels "full", but he still doesn't quite understand the feeling that ceasing food will make it feel better. He will learn!
He may live on yogurt, pudding and peanut butter sandwiches (pureed of course) for the rest of his life, but it's a start (smiley face!).

I kept Brady from speech therapy on Tuesday because he had explosive diarrhea and a slight rash (and gross nose). I was hoping to get him into the doctor thinking this is still from his fever last week (and possibly an untreated ear infection) while Jax was in school, but he couldn't be seen until 5pm. I monitored him, and he ran around like crazy and acted fine. He took a two hour nap and woke up with no rash and no sign of diarrhea for hours. I canceled his doctor appointment to see how he would be today. I don't want to take the boys inside a pediatrician's office unless absolutely necessary (germ purposes). Today he's fine!
We had a very low key day today which was nice. I got some work done and the boys did some time on the air hockey table, a game of jump-around on the furniture, a discovered play of The Cat in the Hat on Netflix (that's how I got some work done) and a lot of running around pretending to make action figures fly.

Doesn't this look exciting? No action has ever happened yet in the froggy potties...

The boys at 7am

Monday, March 5, 2012

Feeding team follow up

Today was such a great follow up ~
Jax weighed in at 23 lbs, 7oz - so he maintained his weight! Jason and I were sure he lost weight, but I think we were so worried about it, that we had it in our heads that he was getting smaller. When really, he's just so tiny it's easy to think that. So that part of the appointment was great.

Then I had a meeting with the entire feeding team (nurse, psychologist, speech therapist and dietitian) where we went through Jax's feeding behaviors at home, his volume acceptance and his overall health. As for his feeding behavior, we discussed his early meal vomiting and I was assured that we're handling it correctly with slightly ignoring it, yet being ready to support the actual puking. I told the doctor that I've been getting "annoyed" with it and feeling guilty, but she said that's how I SHOULD be portraying it. Don't give negative or positive attention. Don't ask if he's okay, but ask if he's done yet. So I guess what he's doing is normal, and he's basically having a physical reaction to his feelings about eating.

Jax's volume acceptance is supposed to slowly but surely get better. The more food he takes at each meal means less food at night through his tube. This basically is a natural self-weaning process that happens when his body is ready.

And finally, his health. I HATE putting this out into the universe to come back to bite my butt, but Jax's health since January has been amazing. Even with a bug in the house (Brady's fever) he's been fine. I'm sure part of it was being out of school for an immune system break, but I also wonder if his body is receiving nutrients differently with real food? I don't know, but I like it. And yes, you can expect a report that he started a cold any day now that I wrote that all out!

The team observed me feeding Jax his lunch. Brady apparently just hates the hospital because he was totally nuts through the whole thing. Jax ignored him and ate his lunch fine. He had a few gags in the middle, but I ignored and we got through it fine.

We saw the GI specialist after all of this and the doctor was amazed with the results from the clinic. He said Jax went from being 100% g-tube fed, to 32% in 5 weeks! He said Jax got his big push and now has the tools to keep going at home with out-patient support. I told the doc that Jax's stoma (the hole that his tube is inserted into) bleeds easily with friction. He looked it over and said that if Jax was going to have the tube long term, he'd need to have it repaired, but since he doesn't think Jax will have it past this year (OH MY GOD) that he wants to leave it alone until he will have it surgically sealed up.
SAY WHAT?
I asked the doc to back up and he laughed. He said that no one can give me a time frame of when Jax will be tube-free, but he thinks it will be "months" and not "years". He said that Jax will need to intake all his nutrition, hydration and medication orally for two straight months and then they're pulling the tube. The sooner you treat the child like they don't have that port, the better. If he gets sick and needs an IV line, well, "welcome to what most people have to do" is what the doc said when I asked!

Since Jax's stoma site has prolapse pushing through (tissue from the stomach lining), he will need it surgically closed and cleaned up. (um, are we really talking about this like it's going to HAPPEN?!)
The doctor said that obviously surgery is never fun to go through, but in the long run, it will be great for Jax because the scar will be very slight and nicely sealed up then.

So... not to get too ahead of ourselves, the plan is to continue doing what we're doing. Expect and deal with a toddler pushing the limits. He's allowed bad days and so are we. We should see more good days than bad, and I can always call the doctors for advice between appointments. We have to remain giving only smooth foods until we're given direction from the doctors to work up on texture. I think that will be awhile yet. We will see the psychologist and dietitian in 4 weeks for the next follow-up and then the entire team again in 3 months. The GI doctor said he is really excited to see what Jax is doing at that appointment (July 2).

Sunday, March 4, 2012

Our winter finally came!

We had a nice snowy weekend. Jason took the boys out in the snow early Saturday morning and they just LOVED it. Otherwise we got errands, housework and some final piled up paperwork done that day.

Today we went to a benefit for Children's Hospital of WI and had a nice time. We had many friends come out and support us since we were a featured family who spoke. The event was hosted by the Milwaukee Emerald Society and at a legendary Irish pub, so there was a lot of fun Irish entertainment (music/dancers). The boys had a blast. We were even featured on the evening news. I'm so proud of Jason speaking in front of a camera! (I'll see if we can download a clip somehow)

Otherwise in feeding news, Jax is doing pretty good. He still has his weird gagging/vomiting at the start of the meal. I know he's not taking as much volume as he's supposed to, and I've been giving him more in the tube at night here and there, but we'll see what the docs have to say tomorrow at his first review with the entire team. (I'll update tomorrow with that appt) *Oh, and he does NOT sit to take a snack while out in public, so we know that for sure now! We asked the therapists how we were supposed to handle public situations and they said that during this beginning stage, to always feed him before any public meals. We did feed Jax lunch, but it got to be snack time while we were out and realized he wasn't going to do it, so we left shortly after and gave him an early dinner and an ice cream bedtime snack. Eh, it wasn't a big deal.

Jax used to be our more laid back kiddo, but I think the boys are switching roles lately. Today Brady was SO shy for quite awhile and even hid under the table. Jax was so outgoing, that he kept trying to speak into my microphone during my small speech. He even said THANK YOU at the end, so cute! Ohhh these two beans make me smile no matter how much they make me pull my hair out!

Jason running through the yard pulling the boys on a sled.

Playing out in the snow...



The boys took over a drum.

Rachel with Miss Kelsey

Shannon with Mr Drew

Janel and Steve as wild animals!

Being filmed by the news station.

Yes, this is my husband!

Friday, March 2, 2012

Good plan for fall school year

I meant to update this last night, but time got away from me with work after the boys were down for the night. Poor Jason is driving around in nasty storms in the state of Missouri right now, and he's supposed to fly back around dinner time tonight when we have snow coming. I really hope he doesn't get stuck there. I swear he hits the worst weather in that state.

Brady was up screaming again every few hours last night. He didn't have a fever and I kept asking him if his tummy, head or ear hurt. He just didn't seem to answer me. By the fourth time up at midnight (and I'm already lacking sleep from the night before) I gave him a dose of Tylenol. I heard him around 2am and 4am again, but they weren't too bad. He didn't have a fever anymore today and was acting fine. I have no idea what is going on.

The Early Childhood Coordinator of the school district called me back yesterday. Apparently after she received my message, she had a phone conference with Jax's teacher before calling me back, and that's why I waited two days.
We had a long talk about where the boys were with their initial evaluation last April and where they are today. We agreed that Jax has made great progress, but he still hasn't "caught up" to peers yet. I told her that Brady has not really progressed with speech, and that he was on the speech "apraxia" radar.

The boys are supposed to have their annual re-evaluation within the next 3 months and have their IEP plans by their birthday in July. Without having that review yet, the coordinator told me that she had a pretty good idea of what we'd be doing with the boys given the conversation with Jax's teacher and my concerns as a parent.

The coordinator told me that they rarely ever don't progress children onto the 4k program to meet their special needs (aka - therapies) since that program provides the needs. She said they will often repeat kindergarten if necessary. I hated that idea - absolutely hate it because I think the boys will be more aware at that point and it would hurt their confidence academically.
She told me that she was taking her "administrator cap" off and putting her "mom cap" on and she said she agreed with me, and without even having further test results done, she will work with me based on these reasons alone:

1. The boy's original birthdate was Sept 11 (past the cut off date)
2. They are small (Jax's teacher confirmed that Jax was noticeably smaller than his peers)
3. Jax missed 6 straight weeks of the course due to medical reasons
4. Jax is working through medical issues simultaneously, where an extra year could make a huge difference
5. Brady's speech may not have met his original IEP goals from this year due to a different speech issue (motor planning disorder rather than a standard delay)

I told the coordinator that I would like Brady's cognition re-tested, and we will, but it's very difficult to gauge given his lack of speech. I'm waiting to hear back if this is something we'll still do to change Brady's plan this year yet (there's only 3 months of school left).

So, the current idea being tossed around for fall is for the boys to attend 3 afternoons (most likely 2.5 hrs) of the Early Childhood preschool course, and move onto 4k the following year. Even if Brady's cognition still tests normal, he will be in the program as a "peer with speech needs" since we don't want the boys in different grades (ie, putting Brady into 4K and holding Jax back).
This makes me so happy. I'm of course not happy that my boys need all this extra help, but in the long run, this is the best plan for them to be successful in school later.

In other news, Jax has really good  meals, and some really bad meals. We still haven't had to do any time outs, but it is so interesting how his body and behavior reacts to meal time. We will need to catch it on video this weekend to share. He typically will sit down and start to gag and then will work out an "episode" to the point of maybe bringing up a tiny bit of spit. Then when he's done, we do the meal and everything is fine - how odd!
Although, last night I let him go through this routine and then fed him like a champ with mac n'cheese blended with green beans. He ate the entire bowl (4-5oz) and on the last bite he sprayed me, himself and the surrounding area. It was like he channeled Linda Blair with blasting green vomit everywhere.
Needless to say, we all took a bath/shower last night immediately. I'm glad that doesn't happen as much anymore!

I did realize he loves vanilla ice cream with chocolate sauce! I mixed it up with a spoon until it was a soft-serve consistency and he at the entire bowl after his bath. I made myself a malt after he was in bed. I think we all deserved an ice cream treat after that clean up!

Jax's teacher said he licked a cupcake repeatedly in school today (the frosting that is) and did well with his snack of yogurt and milk. Typical Jax... eats well for everyone but us at home!
Brady had a small meltdown when he got to school this morning. His usual speech therapist just had her baby, so she has replacements for the time being. Brady hid in my lap until the new therapist came over and told him there were toys and a book about puppies. ZOOM! He shot up and took her hand without even turning to say good bye. What a stinker!

The boys were running around holding hands with their pants off... I have no idea why!

I thought it was cute to see the boys include Batman when putting furniture in the doll house today.

I found it hilarious that they kept putting the daddy on the toilet.