Friday, May 29, 2015

My tiger and clown are growing up...

We are in full swing of summer-prep around here with the yard, summer trip-planning, summer babysitting schedules and end-of-school year wrap ups. It's definitely RIGHT around the corner.

Jason has a huge family-friendly work trip at the end of July in Orlando that he qualified for that we're trying to finalize some plans for. We're extending the trip by a few days to surprise the boys with an amazing birthday present - Legoland and Disney the last week of July!
I mean... since we're already down there and everything...

This past week the boys performed in their kindergarten circus acts - it was so darling. I felt a little sad watching it at one point knowing that kindergarten is almost over. Forever. I don't have any other kids to go through it since they're twins. Each year is my ONLY year to experience all their developments and after this year, they seem like such KIDS instead of 'little kids'. Waaahhhh

We spent last Sunday up in Green Bay to see my grandma. She's taken a turn for the worse and I wanted the boys to see her again before she lost all her speech, which after that day, she did. She's been transferred from her assisted living home to the hospital for IV pain meds since she was extremely uncomfortable. I'm sad since I know her room was cleared out a few days ago and she'll remain in the hospital now under hospice.
I prepared the boys before going and they seemed ok, but then I decided to prepare them one step further and said the simple sentence, "you remember what happened with Grandpa a few months ago?" and Jax became extremely upset, started crying and yelled at me to stop talking about it... ??? wow, I didn't expect that outburst. I held him and told him I wouldn't talk about it again. When we got to grandma's room, the boys were very mature and spoke in her ear and sat nicely through the visits off and on through the day. I feel like they're coming to a place now that they're understanding as much as they can at this age. I feel like I've stolen a little of their innocence with teaching them about life and death and Heaven this year, and Brady being so scared when we almost lost Jax in January... this year is truly for the birds in my book...

*** Onto less hevy/sad, let's talk about the dentist.

I took the boys to the dentist this week and they had great checkups. I had a good talk with the dentist about Jax and his ever-disappearing front teeth. They did their assessment and looked at X-Rays and they came to the conclusion that he's ok for now. He's close to the nerve in one of the teeth, but they think it will fall out before he hits it (KNOCK ON WOOD).
Apparently it's extremely common for kids to grind their teeth down pretty far by this age, but it's also common for the grinding to stop by age 8, and also adult teeth are incredibly stronger then baby teeth. They think his reflux and vomiting have compromised his teeth even more, so the fact that they're all nubs doesn't surprise them too much.
Since his front teeth are almost flush with his gums, we have to physically wiggle his teeth ourselves each night, to help them come out. They are loose now they said, but they'll take forever to come out since they're not going to be wiggled by anything!
They will watch closely for wear-patterns on any new adult teeth every 6 months and take action if they see it becoming an issue. I want to protect those new teeth!

We had to stop Jax's hunger-inducing med because he got a random GI-bug with lingering diarrhea for almost a week. We kept him well hydrated and it wasn't constant, nor was he lethargic at all, but I had to stop the med. I want to start it back up again this week. We noticed it seemed to help for about 4-5 days and then wore off. I think his metabolism cranks it out pretty fast.

The weekend is here again. Looks like a final cold rainy snap wants to move in just in time for a weekend planned full of little league games and a special Star Wars themed night at Miller Park for the Brewer game with the boys...  gotta love the upper midwest in late spring!


Little boys are always SO helpful in the store...

Jason and I are working on re-staining our patio furniture.

The chairs are taking us forever!

With the boys off of school for 4-straight days, and Jason out of town, they had to come to the grocery store with me. I didn't realize how long it's been until they started 'helping me' shop!

I think this may have been their last time riding in this thing together (tear!)...

Jax lost his 3rd tooth in school this week. Both boys were SO excited to come home tell me!

Our tiger in the circus!

The boys immediately took off their clothes afterward, so my photos aren't the best! I need to check Jay's phone for circus-photos (I was video recording).

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!