Hope

Hope

Wednesday, May 20, 2015

Grasshoppers!

You don't realize how much you do in a week until you have to sit down and think about it and then type it!
Last week the boys wanted to go to their school science/book fair one evening. They are so obsessed with books that I'm scared that one day it will suddenly end.
To piggy back on that note, the boy's PALS report (phonological awareness and literacy screening) came home yesterday. This is used to measure knowledge of letter sounds, spelling, concept of word, word recognition in isolation and oral passage reading (clearly I copied that sentence, omg). It's used to measure a child's needs for the next year of school.

Both boys improved leaps and bounds from their fall-scores. Jax scored almost perfect with 100/102 and Brady did amazing with 83/102.
As expected, Brady's area of struggle was with 'letter sounds' and 'spelling'. Both of which are extremely hard for kids with severe Apraxia since he can't make the sounds correctly to hear the letters to be used. The kindergarten teacher warned us of this a year ago saying that reading isn't the struggle so much as spelling, and she was right. Although, we're still very fortunate that Brady is doing as well as he is in the subject given the severity of his speech disorder, so we are grateful and of course SO proud.
I'm mostly grateful that there's one very important area of school that the boys, especially Jax, doesn't have to struggle with. The simplest things for most kids is an obstacle for him, so I have at least one area to let him shine in.

The boys had their very first REAL little league game last Saturday. The kids were excited and nervous and that pitching machine seemed faster and closer than in practice! The kids were amazing and most of the hitters who struggled in practice got HITS at the game. They all learned that ALL batters will strike out off-and-on regardless of talent, that's just how it is. The GRASSHOPPERS had 3 runs and a few plays were actually made. We were shocked! If there were scores and winners, our team nailed it, but there aren't so just a bunch of high fives instead :) The boys play again tonight and then off for the holiday weekend - they are very excited.

On the medical-end, Jax is on his 'hunger-inducing' medication in full force this week and even taking it at school before lunch. We're really hoping to see some positive change. We've gone back to using the 'Reward-Plate' in the mornings to help keep the stress down. He knows exactly how much he has to eat to get to the end, with a small prize. Which has been coins and recylcled trinkets so far, that he totally called me out on - that kid and his MEMORY, DARN IT! I'll keep an update of course!

Jax also had his 6-month asthma specialist appointment on Monday. We cut his daily steroid in HALF to see how he does this summer and we have hopes to keep it that way in winter. We're cautiously optimistic and need to get him on LESS daily meds to help with his long-term health, growth (they stunt growth) and fine motor control (they make him jittery). But his lung-health is most important, so we are going slow and steady.
The doc wants Jax to take an Albuterol neb breathing treatment before warm baseball games and practice this summer, which should help ward off any asthma attacks from the heat. He also gave me some tips on how to support him with our July-trip to Orlando. Lots of AC-breaks, lots of water and lots of sleep overnight. This kid!


The house is coming along! Our master bath repairs and front lawn are next.

The boys enjoying the book fair

Trying out the Robotics-Team creations.


First little league game!

Some of the batting helmets - too cute!

Jay supporting Brady as the catcher - he's totally afraid of the ball, so this may not be his regular position!

Big hit from Brady! Cross your fingers that Jax gets one tonight :)

Frozen yogurt afterward to celebrate!

Underwear and baseball socks - the uniform of wrestlemania happening in my living room.

Baptism day for Jameson, our godson!


We found blood, then found where it came from, EEK! Sunday night Jax picked at his prolapse and this happened. Thankfully our neighbor (a doctor) was home to look at this and we cleaned him up with some antibacterial ointment. THIS KID.

He's all like... what? Totally desensitized to physical trauma I swear.

Current breakfast plan has been successful for 3 days. Fingers crossed. You're welcome for the OPEN mouth food shot!

Tuesday, May 12, 2015

Going Ons

Whew, I'm overdue!As all of you are, we've been busy with life.

The boys started little league with Jason being the coach. They've had a few practices, got their uniforms and did photos. They start their first game this weekend, so that should be out-of-this-world cute. They use a pitching machine which isn't always accurate, so the games should be interesting. This is the league where kids start learning how to field... so again, this should be interesting!

The work around our house has been ongoing. We've had rain lately, so that's been pushing back our plans to stump-grind the front yard in order to move forward with fixing the yard and seeding.
Our cedar siding replacement and painting for a portion of the house is complete (only one more part of the house to go next year and we should be good for another 20 years). Our garage door was replaced today and those are one of those things that make you realize it was OVERDUE, so I'm extremely glad we did that.
Our attic insulation is finally complete and it looks amazing - let's see some great heating and cooling bills now! But we still need to get the ceiling in our master bath and tiled shower fixed, but that's happening soon, so that whole debacle will be behind us soon, but not soon enough!
Jay and I agreed to no more home-updates this year, except possibly replacing the front door this fall - we shall see!
We'll focus more on INSIDE updates next year... I can't wait!

Jay and I have worked a bit in our mulch beds last weekend and put some lighting up in the back. With having landscapers last year and this year, we get to do more 'pretty' things instead of necessary things. I usually wait until Memorial Day weekend to do annual flowers because we get so many chilly storms in May!

We celebrated Mother's Day and Jay's birthday this past weekend. It was really nice and we have left-over ice cream cake for the next week, so that makes Brady and I pretty happy. Too bad I didn't live by Sidney... we LOVE our cake :)

The boys have been well. We've noticed that a later bedtime for the boys doesn't work. At all. Sometimes we get flack for the boy's early bedtime (around 7:30pm) but Jax seriously can not handle going to bed much later. He runs hard all day and he needs to recharge for 11-12 hrs with sleep for his immune system. He can't focus or pay attention and both boys get moody and emotional. They got into a fight this weekend which was a first in a long time and there were multiple time-outs given for the emotional outbursts. I was considering moving their bedtime back to 8pm this summer, but I'm not going to since they still have to be up for summer school. It's interesting how sleep really affects them...

I plan to start Jax back up on his 'feeding medication' (Cyproheptadine). I had started him up on it after his last Feeding Team followup in January, but then he got the flu, then he got that GI virus that led to the horrible medical crisis. Then he got the flu again, then we were gone, and now he's had baseball each Saturday morning - which we have to time the first few days of the medicine around events he can't be sleepy for.  This medicine has antihistamine affects and makes him sleepy for the first 48 hrs of use and then he acclimates, so I need to start it on a Saturday night. We've GOT to get his hunger stimulated and to get him eating more. I've noticed he's lagging again with gaining and looking a little gaunt. He has his next Feeding Team followup next month and they're going to wonder why he hasn't been on this med!

I'm starting to get frustrated and defeated by his eating again lately. I think his recent medical issues have scared the beJESUS out of me so much that I slightly freak out on him if he's not eating. He will sit and daydream and not touch one bit of food if you don't sit next to him and drill sergeant him. 

There's a fine line between his feeding disorder and his behavior and it is so exhausting and completely fear based. I'm not sure what to do anymore. He has a feeding tube, feeding therapy, a dietician, feeding team and special weight gaining formula with hGH injections...
So... we're hitting this med hard now and holding onto some hope, because I just don't know what else to do. The thought of him getting dehydrated this summer freaks me out - blahhh, someone wave a wand and make this kid like cake!
He's also ground down his teeth... yes, you read right, his teeth are almost gone! His top front teeth are basically small slivers and I think he's going to expose his nerve soon. He has a dentist appointment in two weeks where I will be discussing what we can do to protect his adult teeth coming in. I have no idea what is up with this kid sometimes!



Jay at his birthday dinner with Dennis. Being weird.

The boys and I at brunch on Mother's Day. Being weird. Notice Jax's teeth :(

Too cute.

Some of the new siding last week. I need to take pictures of it all painted with the new door.

The arcade after brunch!

Our little monkey.

The moms.

Jay celebrating his birthday.

CAKE

This is funny. Or not. Jay had what he thought was a burn on his hand from Costa Rica last month. I noticed more spots the other night and was like, "um.." He said it was fine. So I publicly shamed him on Face Book. He went to the doctor and has cream for a possible bacterial infection. If not getting better by this weekend he'll get it scraped and tested for more invasive treatment, but the current cream will most likely heal it up. Just a random infection from traveling - huh!

Saturday was a donut and coffee kind of morning... or hot chocolate...

Baseball practice after... practice. Apparently they can't get enough.

Brady was the 'Apple of the Eye' at school last week. His poster was cool!

Tuesday, April 28, 2015

Minnesota and choas of repairs

We are just full of adventures lately!
We headed out of town on Friday afternoon to go visit Jay's sister and her family in Minnesota. Our nephew Aidan was receiving his First Communion, so we made a weekend out of it. We had never visited them in their new house since they moved from St.Louis last year (military family) so it was about time we made the trip!
We visited the Mall of America on Saturday, and the boys pretty much think it's JUST an amusement park. Jay and Uncle Clint stayed with all the boys to go on rides all afternoon, while the ladies shopped around for a bit. It was a nice afternoon, followed with dinner and then brunch the next day from Clint the Chef! (I never get cooked for, so I slightly obsess)
Aidan's First Communion was in the afternoon, so we left directly from church. We were lucky to have nice rides to and from Minnesota.

We've had SO much going on around the house lately with contractors. Our whole attic/bathroom debacle that happened in the winter has started to get repaired now. The entire attic was scrubbed/antimicrobialized and all the old insulation taken out. We are waiting to see what repairs need to be completed before putting insulation back in and also the bathroom ceiling and shower need to have their repairs done as well - so that's all going on.

Our carpenter has started the next phase of cedar siding planks to replace - we do about 30% of our house at a time to take out the old painted stuff and replace with new stained pieces. The stained parts look SO much nicer, and he's also taking out the old wooden porch railing and replacing it with non-painted pvc pipe - so that is all going on.

We had our tree-line cleaned up, and needed to be out of town while they did it since they use a chemical to treat the large buck thorn stumps, so it had to be done this weekend. We also have plans to seed a big portion of the tree line, so it was best to do it now in spring - so that was going on. I'm waiting to hear from our landscaper for options to with the new open space in the front yard. I'm a little shocked how much was taken from there, so we need to make some plans of what to DO with it now!

Our original heavy wooden garage door is being replaced, so we got that all contracted last week and are waiting for the door to come in - which hopefully times well after the cedar siding over on that side is replaced and painted. I think that door will come in sometime mid-May, so that should work out.

I don't know why we have SO much going on at the same time other than we don't want to deal with any of it in summer, so we kinda have pushed to get most of this done within the month.


The Lego area of Mall of America


Jay thought the boys looked like Hans and Franz of SNL this day.

Jay has a better photo of the boys, but you get the point. I'm pretty convinced that Jax is the human-version of Sponge Bob. Constantly EXCITED.

The boys were the last ones to see these guys so they got sandwiched! The worker was laughing pretty hard.

 I loooooove his cooking.

My sauce almost set the kitchen on fire!

With the guest of honor Aidan!
All the boys chillin before church.
On the way out of town on Friday, we had trucks arrive to cut down the dead trees and weeds that were becoming hazardous.

Apparently our entire front yard of tree line consisted of dead trees and weeds. Ummm...
A big ole' truck needed for those big ones!

Monday, April 20, 2015

IEPs for 1st Grade Complete

We had a really nice weekend away just the four of us to Wisconsin Dells. I had won a night stay at a suite to an indoor waterpark and had to use it by the end of the month. The boys had so much fun running around in the water park, getting some dinner and hitting the arcade before bedtime. On the way out of town in the morning, the boys got to ride some go-carts and had a blast.

Over the past week we had IEP meetings for each boy for the next school year. Brady's meeting went as expected. He'll continue speech every day with the availability of his iPad for communication breakdowns. He's had the most one-year-improvement since turning 6, so we have a lot of hope for him to overcome this speech disorder. He still has a long road, but he's really doing well. We couldn't be prouder at his reading and math scores, so speech is really his only area of 'need' so far at this level of academics. I hear school starts to really speed up in the next few years so I hope we can stay on top of it!

Jax's IEP meeting went pretty good, but he's still having a really difficult time with focus and attention. He will still require the same level of aide when performing anything with fine motor skills. Most specifically writing and art-based projects. He will still get "preferential seating" throughout the day for most activities - meaning he'll always be seated near the teacher or aide since he stays on task when re-directed.
The special-ed director and the Occupational therapist came up with a really great game-plan for him that I think will create some success for him. Since kids are expected to do much more writing in first grade, the plan is to pull Jax out for 10 minutes before his daily writing time to review technique and practice the letters for more confidence and a better chance at success. He'll also receive Occupational therapy (OT) twice a week for 15 minutes at a time to help strengthen his fine motor delay and low muscle tone.
He'll continue his speech therapy as well as have his medical-pass in case he has trouble with eating and has reflux. By law, a child has to go home if they vomit at school unless they have a medical-pass. He's also allowed to have his feeding therapist come in once a week to help with lunch and he'll have his formula in-take monitored.

The special-ed director is going to talk with the phy-ed teacher to make sure he feels Jax is keeping up with his peers since we took him out of specialized phy-ed this year and removed his braces. Jax seems to be doing well with gross-motor skills, but we have noted a lot of accidents over the year. But he does have attention issues, so that's most likely the culprit.

We talked about how Jax functions at home, and I had mentioned that we have to stay on top of Jax through every single step each morning to get out the door, which can be daunting sometimes. They asked if the boys were competitive to make it more of a game, and for this in particular, we wish they were! But they're not unless it were a sport, and even then they cheer each other on. We may start a chart with steps, but really, this is just an area that Jax struggles with. Eating and getting dressed are not fan favorites of his!

I asked the staff if they felt Jax's obvious attention and focus issues could possibly be more of a clinical problem, like ADHD. They had a discussion with each other about it, and so far they're leaning toward Jax having an attention/focus issue mainly with areas of his delays. In other words, he's extremely un-interested in fine motor projects and tends to try and find other things to focus on. Add that to an insanely outgoing talkative kid hopped up on daily asthma meds and we have a common scenario of Jax turned around, looking around at other's projects or striking up a convo even with the aide instead of looking down and working on his writing!
Since he can focus on some things, they don't see it across the board for him. They also said it's not typical to see a child with ADHD without any behavior issues and it's typically seen more across the board. There are so many varying degrees of the disorder, but there's almost always some form of behavior associated with it and he just doesn't fit it. But they do agree he has a "clinical issue" meaning he struggles with focus beyond his control, but so far it hasn't impeded his learning or the learning of others, so they believe that with all the planned interventions and help, he may be able to remain on his successful path. Because so far he's successful with scoring at the top level for math and reading. (But writing gets scored next year, so we need this plan in place, eek!)

It was nice to hear such nice things said about each boy. Some of the descriptions overlapped, but the ones that were different were that Brady was considered super sweet, very helpful and extremely hard working. They are so impressed to see him as outgoing as he is with the obvious disability, and they love how well he handles his own frustration when not understood. I'm sure I'd be MUCH more annoyed then he is, he amazes me!
Jax was noted to be THE MOST excited and happy child who wanted to please all the teachers and therapists. The special-ed director said she's never in her entire career met a child who finds every single task through the day to be exciting. The kindergarten teacher finds him to be charming beyond his years. It's so nice to hear these things since Jax was so miserable as a baby and I always worried so much about him not being a happy child with the lack of cuddles and lack of food for development for cognition - we are so grateful for his chipper little dude.

I'm excited to see what first grade brings for them with growth. I feel better knowing there's a solid plan in place to help Jax with his fine motor skills. We'll be receiving summer homework to use each day from the OT, so that also gives me a little relief as well. We try to remain positive with meetings that are based solely on our children's weaknesses, so it's nice to not feel down about it all. I love their school!


I will miss times like this of their age. They're negotiating with each other which prizes to get and share to add up to the number of tickets they won.

The boys loving the mini-track.

Jax and Jason cut from the same cloth after we finished dinner. A long day at the water park left everyone a bit tired!

Brady kickin' like mom on our side!

The boys loved the whirlpool in the condo - they used it after the park and had a blast.
Brady glovin'up for a little batting in the back yard on Sunday.

Monday, April 13, 2015

Spring Break

We are all back into the swing of things coming off of spring break from last week.
Jason and I were in Costa Rica for a company incentive trip and the boys had their babysitter here doing SO much fun stuff. They went to a children's museum, a Brewer game, a movie and the zoo! They had a blast for sure, and they stayed healthy which was giving me the chance to relax a little more while being away.
We enjoyed our trip away, but it was a quick 3 days there with the other 2 days committed to travel to get there and back. It was great to see the ocean and sun again!

We are already doing preparations for summer school and first grade for the boys this month. We have the boy's IEP meetings over the next week to make their plans for first grade. I'm pretty sure how Brady's will go, but I'm not totally sure how Jax's will go. Brady was recommended for the 'extended school year speech therapy' again this summer. Only students who would regress without the summer therapy qualify for this program. We planned on putting the boys in some fun summer school courses, so Jay and I had to figure out Brady's schedule since he'll be pulled out for 30 mins of therapy. Otherwise it's all FUN classes for them since neither need extra help in reading or math. I'm wondering if I should find something OT related for Jax and his writing, but I hate to pile on the therapies over summer since he does have feeding therapy each week too. I'll have to see what the options are where he takes feeding.

The boys are signed up for Dr Seuss Galore, Science experiments and Playground games. They'll attend each morning for the first 6 weeks of summer, which makes childcare a little easier until August. They're pumped for these fun classes, which are for FIRST graders... so weird to think of them as that when June comes :)


Jason brought the boys an Air Force One and limo kit from DC. The boys like to play "protect President Obama" with it - too cute!

Jax learning to work hard at a shake - he usually doesn't have enough power to do it!

First Bunny photo on a whim - they were SO pumped! And the only kids not dressed up :)

I will miss these nights some day...

An intense game of Guess Who.

Egg hunt and basket search on Easter morning!

They found them in the basement bathroom shower!

TOTALLY spoiled this year since we wanted to leave them with some fun stuff to keep busy while we were gone. I pulled everything out for a photo and they're DYING for the photo to be DONE!

This wrestling championship belt will be a toy-staple for a LONG time around here...

Jay and I loving a mariachi band in Costa Rica during dinner one night.

Our favorite hidden lunch spot down the beach on our last afternoon. Lola's!

Home and the boys are SO happy! Brady wore his pirate costume every moment for the entire weekend.

Brady's second tooth is out!

What a nice "helpful" dad... he's just holding the tissue up because it's bleeding here.