Hope

Hope

Thursday, March 26, 2015

Bruises and hives

My titles are amazing lately aren't they? They kind of make me laugh with how much they make us sound like we should be living in the coo-coo house at this point.

The boys are doing well. Brady finished up his antibiotic from the random strep throat he had. On day 9 he got a horrible rash on his legs, which we assumed was just eczema flaring up from the meds. He was extremely upset at the pain level, so we soaked him in an oatmeal bath and gently put his steroid cream on him. He was better the next day, but then got a 2 day headache and his body exploded in itchiness. He broke open his skin with the scratching, and he looked battered.
I brought him to the doctor yesterday and she found a few hives in the mix of all the scratch marks and just a bit of his eczema flaring up. She determined that he was on day 4 of an allergic reaction of the antibiotic. The good news was that he was probably half way done with the reaction and we only had to give him Benadryl at night and Claritin during the day and expect it to be gone by this weekend. The bad news is that Amoxicillin goes on his "allergy' list. He's also allergic to Cefdinir, which the doc said is a very similar drug-family, so she wasn't surprised.
Brady hadn't had an antibiotic for years, so it's a slow process to find out what he's sensitive to and what he's not.
Then there's Jax who has had many antibiotics over the years and has zero allergies to any of them - once again, they are completely different little people.

Jax gave me a little shock on Tuesday night. Jason was out at a late appointment, so I was alone with the boys and giving them a bath. I went to wash up Jax and found this extremely large, painful-looking bruise spanning from the top of his shin up to his knee. I asked him what happened and he said he had no idea. My first instinct was to figure out if this was an injury or if something weird was going on with him medically (with him lately, I put nothing past his mystery body!).
I texted a photo to Shannon to ask her nurse-opinion and she said that since she could see some swelling, she assumed injury - which kids at this age can do and not realize. That made me feel better. But given the severity of the bruise, I felt I should KNOW what he did. I asked if it was baseball, knowing it was his left knee and he favors that leg (you should see every single pair of jeans he puts a hole in THAT knee). He said he assumed it was baseball and that it was no big deal - he was fine. Hmm, he wanted to stop talking about it, which was a clue to me, that something was up.

I texted Jason a photo of it asking if he could've done it 2 days prior in baseball. Jason said, NO since he dressed Jax the night before and it wasn't there. So I interrogated Jax a bit asking if he fell, banged it or hurt it somehow. He said no to all. Then I said, "did someone hurt you?". He was silent. OMG.
(insert heart attack)
He then tells me that his friend at school pushed him down during recess, but it was just for fun playing the "pushing game". He told me who it was, and I immediately felt that this was just a game amongst young boys and not something 'mean spirited'. I asked if he told his teacher and he said he did. I told him I was going to ask his teacher if this was true and he said OK!

I sent an email and a photo of the leg to his teacher that night and she confirmed that it did happen, but she had NO idea that Jax was hurt in any way and she felt terrible. I didn't want to make her feel bad,.. I mean, Jax didn't even tell ME and I had to find it and question him repeatedly. The teacher said she also asked Jax repeatedly to make sure he wasn't 'covering for his buddy', which Jax would do, but it was determined to be a game that she put a stop to. She spoke to the class the next day to remind them that games like that are dangerous and she also had another talk with Jax that it's important to talk about injuries and she won't pull him out of activities or class if he tells her (which is why he never tells people when he's hurt).
(sigh)

We have conferences at the school tonight, so I'm sure I'll have fun reports for the next post. We also have a family wedding to attend this weekend, and Jay's goddaughter from New Mexico (Olivia) is staying with us leading up to it. Jason will be leaving right away Sunday for Washington DC for a conference through Wednesday, so it will just be me holding down the fort! Send coffee if you think of it :)

Some Saturday night classiness (Jax refuses to wear his 'spring hat' because he saw a tag in it before I could cut it out).

Sunday lunch celebrating the Bonin kid's birthday!

2 out of 3 were up for photos - too cute!

We were determined to get another Jason-Kelsey photo

I love how excited Drew is watching this game!
This was the bruise I found, oy!

Wednesday, March 18, 2015

Another flu and a first for strep!

We are really kicking 2015 off with a bang I guess!
The boys both woke up with sore throats last Thursday morning (their first day of a 4-day weekend). I knew something was probably up since they've only had sore throats really once before and that was in Jan with the flu. I waited a day to see if anything else popped up. Jax had some asthma overnight so he bought himself a trip to the doctor. Brady was feeling much better.

The doc did a strep test and that was NEGATIVE and his lungs were clear. So I started to pack up and thanked the doc assuming it was just a cold that we'd have to treat his lungs for. She stared at him and said something was off. She asked us to stay for a flu-test. Which came back positive in 1 minute for Influenza B. Oh geeze, what a vaccine-fail for this kid this year. TWO rounds of flu in one season, wow.
The doc asked if Brady had ANY symptoms and I said he had a sore throat the day before but was much better. She asked to swab him. He was NOT HAPPY AT ALL. It took the doctor, the nurse and me to hold him down for these swabs. He literally jumped off the table and ran out the door!
His flu-swab was negative but he was positive for STREP.
What.the.hell.

How is that even possible?
So, Brady got an antibiotic and Jax got Tamiflu and they sent in their swabs to culture. Brady has been doing great since we caught his strep right away - he wasn't even meant to be a patient that day! Jax was caught early too, although the cough overnight kept us up-and-down for a few nights to treat with breathing treatments, test his O2 etc. I brought Jax back in yesterday (Tuesday) for a lung-check and he's' doing GREAT. It was 4 days of non-stop care, but he did so well considering how badly he reacts to these sorts of illnesses. He's still on breathing treatments at home and at school this week, but so far he's great.
We'll know by Friday if they've cross-contaminated each other since the incubation period can be 5 days.

Otherwise we're still doing our daily grind. We're getting our house damages assessed finally by our insurance company today, which has been assessed by a few different companies. We'll be happy when work to repair all that starts. Well, we'll be happier when it's done and behind us!

I received a call from the school Occupational Therapist last week stating that she is going to start Jax back in the program. He was on consultative services this year, and the team has expressed strong concerns to get him back into full OT services to really address his fine motor skills, specifically his hand writing. I was going to PLEAD with the school next month in his yearly IEP meeting, so I'm relieved that I don't need to do that. Next week we have conferences and then next month we have both boy's IEPs for 1st grade - wow, crazy hey?
I think Brady's will be pretty straight forward with daily services (hopefully) and ways to help him in the classroom. I also feel that while his reading capabilities have surprised us this year, I'm noticing his ability to write isn't keeping up. Not his penmanship, but his ability to sound out words to try and write them on his own, which I know is a big issue for kids with Apraxia - for obvious issues. So, I' hoping to address that.
Jax's IEP will be all over the place. While he's a smart little whip with above grade reading, he still struggles a lot of areas. We also need to make it necessary that he's pulled out for snacks since they don't do that anymore in 1st grade. Just random things like that...



Glad this was happening the night before flu and strep symptoms came about!

This is how Brady rolls into the chiropractor's office.

They were acting out their pjs. Jax was a tough tiger and Brady was dancing.

Brady loooooves the camera!

Projects while sick!

St Pats day!

Jax when he was down and out.

Finishing up crafts. Yes, Brady wears a cape or some piece of costume at ALL times.

Brady on his way to baseball camp on Sunday night. Jax stayed home to cuddle with mom!

A bit of a St Pats photo shoot before school...

Oh Brady...


Wednesday, March 11, 2015

School fundraiser

Things have been quiet lately, which is GOOD.
We had the boy's Italian Night at school last weekend. It's the largest fundraiser the school has through the year. The kids just love running room to room playing games trying to win prizes and munching on the spaghetti.
They had face painting, so Brady was PUMPED and wanted to look like a pirate. Jax has never allowed anyone to paint his face to this point. He still has sensory issues with things touching his face, which is a big part of his feeding disorder still. Brady and I were waiting in line and Jax kept coming over by us. I convinced him to give it a try and he agreed to it, then he backed out, then he agreed to it, and backed out again. On the third try, he decided to be brave and try it ONLY if the painter didn't touch his mouth or do too much.
So... in total Jax fashion, the little elf chose to have a single FLAME painted on his cheek. After the painter did the bottom half, she asked if he could handle her going up the side of his face and he said he'd be brave and do it.

It's so interesting that he can handle needles and so much pain, but a brush stroke along his face makes him sweat with anxiety. While Brady can't even watch Jax get his nightly shots but would allow someone to paint his body if he could!

The boys have off school Thursday and Friday this week, so we have a looong 4-day weekend at home. I'm going to start Jax back up on his hunger-inducing medication during this time since he's a zombie the first day on it given that it's an antihistamine. He only does well with if for about 8-10 days before he's too acclimated to it for it to work. Most kids do well for 2 weeks, but clearly Jax has a fast metabolism. We're really on the mission to get him bigger and while my scale at home isn't the same at the hospital, I *think* he's gained 2 lbs since his feeding clinic in January. Which is a HUGE gain for him since he couldn't do that in a whole year in the past. I'm supposed to run him in for a weight check at the clinic this month, so I may do that this week with him off so I have an accurate number. He's looking SO good lately!


This kid. He wears this hat every single day that he comes home until he goes to bed.

Brady getting his faced painted.

Jax too!


I asked him to give me a pirate face and this is what he gave me..

Jax said this is what a flame would be like!

Monday, March 2, 2015

Awards, Camps and LEAKS

A few new things these past few days. First of all, Jason and I attended the Wisconsin Mass Mutual Awards Banquet in Madison last Friday night. Jason received an award for '2014 Leaders', which is such an honor! He is the only agent with under 4 years experience (he only had 8 months in 2014!) to get this - I'm so proud of him! Because of this honor, we'll all be going to Orlando in July for a 3-day trip with the boys from his company. We plan to extend the trip by two days to surprise the boys with a day at Legoland as a birthday gift, they are going to FREAK!
Jason also did such an outstanding job in his first year that he qualified for himself AND me to go to Costa Rica in April (sort of a President's Club)... oh my God! He's the only first year agent to qualify - he likes to overachieve :) I'm excited for what he'll bring in 2015 with a full 12 months to work with. Our family and friends have been so supportive in his first year - we're so grateful!

The boys started baseball camp. It's on Sunday evenings for a few weeks to work on batting, fielding and throwing at an indoor venue. Jay wanted the boys to have someone other than himself coach them a bit before the spring/summer league starts - that yes, he coaches for!
The boys are excited because the neighbor boys are all in it too - good for them all to get together once a week during the cold months like this. We all hibernate!

Jay and I are about to pull our hair out with some house issues... again. Apparently getting new windows (which kept all the moisture IN) and getting new insulation (that now we found out isn't the right code and it covered our vents) caused moisture to collect and come through our bathroom ceiling including the tiled ceiling of our walk-in shower - and some other issues. We've had a company come out and do a complete review of the issues that's being submitted to insurance and clearly the insulation company will be getting a call.
ugh.
Apparently we may have to replace ceilings, showers, walls, insulation, install new vents etc etc - it's a nightmare. Of course! I'm so tempted to look for a brand new house and be done with this non-stop mess. My dreams of a new kitchen keep getting farther and farther a reality. But alas... we love our neighborhood and couldn't dream to leave... (waaaaaah for our first world problem...)

Jason giving his best Brady-smile and his award!

Bedtime book~ you can see how Jax sleeps each night with his backpack hung on his dresser.

Dr Seuss Day! Brady snuck away to paint his face and his teacher thought it was so cute, she sent me this photo!

Jax working on his throwing at camp.

Thursday, February 26, 2015

Star Student

The boys finished up basketball last week. Thankfully, Brady got a basket and all is right with the world! Jax kept scoring, but nothing for Brady all season and he was starting to lose his confidence. He totally drilled his basket and everyone cheered for him - yay! The boys start up an indoor baseball fielding camp for a few Sunday evenings starting this week. They're pretty excited about it and it will be nice for them to have someone other than Jay be their coach - it will be good for them.

Jax has been 'Star Student of the Week' this week. Each kid gets a week through the year. Brady is the last week, which was a very good strategic move by the teacher in hopes his speech would be better at that point. Jax has been loving it and gets to show something each day to the class in addition to other things they do special for him.

The boys had some GI upset last weekend, which proved to be OK for them, which was a nice little test run for Jax (and us). But, Brady was in so much PAIN in his bum that I had to take him to see the pediatrician. He was literally crying and screaming on the floor!
After an exam, the doc found a fissure - a small tear in his bum which was causing the pain. It's amazing how such a small thing can hurt so bad! We were happy to hear it was something 'minor' in the large scheme of what else could cause such pain. So, we're doing bath-soaks and special cream. He was SO much better today and back at school. OY, these kids!!

The boys last basketball game

Jay's new tattoo. The top two lines are the boy's initials and year of birth, the bottom line has my initials with the year we were married and Jay's initials are down the center of us all.

Doesn't everyone snuggle watching movies like this?

From Jax's teacher - he was showing his football from the Packer visit in the hospital. The teacher put his photo up on the screen behind him, too cute.

Jax going over his poster of info about himself and then taking questions - clearly he's not shy :)

Tuesday, February 17, 2015

Loving Each Other

We've been working on our 'normal' for the past week.
It's been solemn, and everything that's happened in the past month still crosses my mind daily, but we are definitely, 'ok'.
Brady had a rough couple days last week with bringing up my grandpa, but now a week later, he seems to just bring up grandpa's name here and there. Jax doesn't like to talk about it all. We thought the boys would have the opposite reactions, so it just goes to show you how losses affect everyone differently.

We tried to enjoy Valentines Day with the boys. They just love this holiday and they had a lot of fun through the week at school preparing for it. We didn't do much at home, but we did spoil them with them with small gifts and did a lot of cuddles and hanging out. We went out for pancakes that night - just because we CAN :)

The boys are finishing up their last week of basketball this week. Jax just amazes me with his power to throw the ball given his size and muscle tone. If he had a few inches and some muscle mass, he would seriously dominate in sports with his enthusiasm and drive (he's our own little Rudy). Brady has been so happy for him each time he scores a basket, but last week Brady took it pretty hard that he himself hasn't made a basket. So, we're REALLY hoping Brady does tomorrow night.

Jax will be star student of the week next week. Each kid gets a week of being the star. We were working on his poster that he had to fill out that talks all about himself. In a section about 'what's special about me', I gave some suggestions to him and one of the suggestions was his 'tubie'. He absolutely refused to list it. I asked him if his friends knew about it and he said no. Hmm. I asked if he was keeping it a secret and he said yes.
I totally understand not wanting to stand out and be different that way, but it made me sad. His tubie has always been a part of him, and while it doesn't define it, it is 'part of him' and his journey - nothing to be ashamed of. I'm sad that he's already at the age of wanting to hide things that make him different :(
He also said he wanted to list that he had a brother, but not a 'twin' brother - ummm sorry buddy, you'll never be able to hide that fact!

We started Jax up on his hunger-inducing medication (finally) and it's been going well so far. We're only doing the twice a day dose rather than the three times a day just to see how he does. We are determined to get him fattened up. It's on my mind constantly to get him as big, strong and healthy as possible before the next inevitable illness hits. It's just reality that it will. And our reality right now says Jay and I will be hot messes when it does, so... let's get some pounds on this kiddo.
By the way... after being in Brady's class for the Valentines party last week... I'm shocked that our kids have only had the two illness this winter - all I'm going to say is... g.r.o.s.s. The coughing, sneezing, nose wiping on the hands and constant touching of each other - blech.

Speaking of health and wellness, we're taking family trips to the chiropractor each week for awhile. Getting everyone straightened out and upping our immune system.
We have the soup kitchen tomorrow night that we're all looking forward to as well - back in the saddle as a whole family to fill up our hearts a little bit.


The claw game fail - but fun anyway.

Found this on my pillow from Brady. I'll treasure it forever.

100th day at school!

Brady made this Batman costume at school out of sticky paper.


The boys all ready for the 100th day of school trying to dress up as 100 yr olds!

Jax sinking his shots.

Brady and some kids decorating cookies at the Valentines party at school.

Jax in his class.

Brady goofing around with another boy.

Found this on the wall at school. Brady plans to be a teacher, go to New York, have 2 kids, have a girlfriend and wants to get married...

Bags of kindergarten valentines...

Tuesday, February 10, 2015

Saying Good bye

It's been a hard week for us. Which seems to be a theme for us lately, but life seems to be full of unexpected events. I received a call that my grandfather was in the ER on Sunday, then a call the next day that he was in the ICU, then a call that he had declined more. The heart valve that he had replaced about a year and a half ago had failed.

I picked my aunt up from the airport in town and we took the 2 hour drive north to see him. We found many family members camped out in the lounge. My grandma took my aunt and I back to see my grandpa. And I knew. I finally believed the words that were being told to me the night before that I didn't want to believe.

My grandpa wasn't able to speak and was sedated, but he did some squeezes of my fingers. I started to speak to him and I remembered our last phone call was when Jax was in the ICU the week prior and my grandparents were worried. I told my grandpa that Jax was doing great and he was healthy and running around. My grandpa opened his eye and a tear came out...

I left that night to get home and power pack everything that I could for myself and the boys and had plans for Jay to bring them on Friday through the weekend. I had to attend a meeting the next morning (that had been moved for me the weeks prior from our emergency with Jax) and I left for Green Bay directly after the meeting.

I had that night with my grandpa and many family members at the hospital. My mom and I went to her house to get a few hours of sleep while my brother had flown in overnight and had gotten to my grandpa about an hour before he passed. I feel that my grandpa had waited for him...
We all gathered in the middle of the night that night and held his hands and each others, and prayed.

My heart has been broken into pieces, but the entire family has come together in such loving support. We put picture boards together, had dinners, wrote eulogies and prayed. I delivered one of the eulogies and really struggled once up to the podium. It took me a few minutes to stop crying, but once my brother came up and stood with me, I was able to read its entirety. I can only hope it was a fitting tribute to him and all that he meant.

We've been home for a day now and are trying to find another 'normal'. My heart is aching and I still can't believe this has happened. I'm leaning on faith that we will see each other again, and we have another angel watching over us.

Auf wiedersehen, mein Freund.


 








The night before Grandpa's heart surgery





Romeo getting his class-Valentines in order

Brady lost his first tooth over the weekend