Tuesday, April 15, 2014

Camp

Spring break is here, and full of snow. Thank goodness we planned a couple of days for the boys at the YMCA for activities (day-camp).
Jax woke up SO excited about camp today. Jay dropped them off on his way to work and we both had full days to just focus on work! This was their first time gone from home at an activity away from us for an entire day... crazy huh?? Their 4k class is only 3 hours long a few days a week.
I got antsy 20 minutes before their pickup time and went to get them. I surprise myself with how quickly I miss them when all I say each day is that I need more time to myself to get things done!

The boys had a BLAST. Jax didn't stop talking about it all night long and he's so excited that they have another day there on Thursday. The counselors were so great about Jax's eating and gave me notes outlining exactly what he ate for his lunch and snacks. I was so worried about that since he eats every meal at home with us. We did a lot of prepping him in advance that he had to listen to the counselor and eat his food otherwise he couldn't attend camp anymore. They said it took him much longer than the other kids and he was the last one at the table for quite awhile, but he did it... which gives me hope for kindergarten!

The bummer news is that Brady is sick. He had a cough develop over the last couple days and when I picked him up from camp today, he was definitely ill. His nose started to run and he started a temperature. He was so tired at dinner that he asked to go to bed! Poor bean.
We put Jax in the spare room tonight because we have no idea where this cold is going to go on Brady and 'croup' may be in the air again tonight with the way he was coughing. UGH.
Jax always follows a few days later too, so I'm not happy at all to see this pop up again. I haaaate spring and all the nasty colds it brings!
And of course, I feel guilty now having Brady at a day-long camp while he felt lousy. Mommy-guilt is the worst!
If Jax gets sick and is unable to attend camp on Thursday, I think he may implode from disappointment, so please, pray for this child, lol!

Thursday, April 10, 2014

Kindergarten Bound

The boys are officially registered for kindergarten next fall. I'm very excited about it and feel that they will be ready. Of course, Brady's speech will be a big obstacle for him, but we'll be meeting next month for his plan and we found out the new speech therapist knows his current one and she's highly recommended, yay!
 I filled out some forms for the boys to be re-evaluated by the school district before their IEP meetings in May. And I'm also working on changing out all of the insurance info for e.v.e.r.y.t.h.i.n.g. which is a lot for Jax.
I have the boys registered for a summer school course that will help them prepare more for kindergarten as well. I'm also trying to figure out where and when Brady will have private speech therapy each day. I'm going to explore one more option at HealthReach where Jax has feeding therapy tomorrow. It will be nice once we have a summer plan of action with a sitter as well.

Work is going crazy strong and busy for both Jason and I. It's still a slight juggling act at home to handle it all, but we're hoping the summer months will bring some routine and ease up on the stress a bit.

Just a lot of details non-stop each day lately! But isn't that how it is for everyone?
The boys are officially on spring break for the next 12 days. Let's hope for the nice spring weather to continue so they can get out of the house and PLAY!

Monday, April 7, 2014

Promised Photos...

These were meant to follow the last post!

Jax man not feeling the best last week.

48 hrs after meds, and he was doing homework with a smile!

Jason 'cleaning out the woods'.

Brady at the bat.

Jason and Brady going for a bike ride.

This is Brady's new pose for some reason...

Jax and Jason standing the exact same way admiring the burning leaves.

The boys with Nana and Great Grandma on Sunday.

Great Grandma and Grandpa Sternitzky.

Nana and Papa Letts.

Jax sinking a ball over B's head, he made it!
Waiting for the bus and being cool...

Sunday, April 6, 2014

A little settling into the lungs

We've had a busy week with some unexpected illnesses go south, and then just our general craziness with all the new things going on in our lives.
First, that nasty runny nose on the boys that started two weeks ago, has finally healed up for them both this weekend, but not before wreaking havoc on Jax last Monday. He started coughing but he seemed to improve. Then he suddenly seemed to go down hill looking really tired with asthma and a fever, which is NEVER a good sign in this kid after a week into a cold. I brought him into urgent care, but they were PACKED with 12 families waiting and a room full of crying/hacking children. I asked the nurse how bad the wait was and she said at least 2 hrs. I asked her to check his pulse ox, and it was 94 (right after 2 neublizers, and his nightly Singulair and Advair). Which told me he wasn't keeping up with asthma and I drove around the building and brought him to the ER instead.
Thankfully, they put him in a room immediately and started working on him, where he then suddenly vomited ALL OVER the place. Poor kid!
They ordered him a chest X-Ray and took good care of him. The X-Ray was clear, but they saw in his history that all of his X-Rays were clear on the first check, and it always lead into pneumonia and a hospital stay. So the docs were all trying to decide if they should treat him regardless of the scan. I told them that since he was stable, I was comfortable taking him home and having his pediatrician check him out and make the decision in the morning.
I left Jax's tummy alone, but kept up with breathing treatments and then hand-syringed in a couple ounces every couple of hours in the morning before we got to the doctor after Brady got on the bus. The doc was concerned about Whopping Cough since Jax would have small coughing fits that would end in vomit, but we all assumed that was because Jax vomits easily with any cold. He was tested nonetheless, and treated for Walking Pneumonia with antibiotics. She thinks he was definitely going to go downhill without treatment. His lungs just couldn't fight off the cold. Which... since it hit Brady so hard with croup, we were on the lookout knowing it was a tough one.
He's doing great and finished with the nebulizer and antibiotics as of today, and hit the last day of school on Thursday, so hopefully the boys can go back on a nice long healthy-run. Spring-time is the worst with colds!

The weather has been great this weekend and we definitely got some fresh air. Jason has been working on 'cleaning out the woods' as the boys say. He's clearing out the overgrowth that's starting to eat up some of our lawn. Our neighbors cleaned out their garage and gave us their 'co-pilot' children's bike that attaches to an adult bike. The boys LOVE it! It's so great to help Jax with his muscle-tone for peddling and of course balance for both. I ordered a second one off Amazon and think it will be fun for the four of us to go biking this year.

**I have SO many great pictures to share, but once again, my computer doesn't want to download them off my phone. Totally frustrating, but I'll work on it!


Sunday, March 30, 2014

So much CHANGE!

I'm not even sure where to begin!

To start, I'm no longer a 'Stay at Home Mom', because I've re-entered the work world! It all happened so fast, and while it didn't fit our plan of when I'd go back to work, it was just too good of an opportunity to pass up.
Our plan was for me to have one last summer with the boys and all their planned therapies and summer school, while I put my feelers out there for a job to ease into for fall. Well, the word on the street got out that I was considering work again soon (soon meaning 6 months, lol!) and I received an offer on Tuesday from a friend who's company was looking to fill a position. A position that had my name written ALL over it.
I dusted off the old (old, old, omg, so old!) resume and went for it!
I am officially free lancing part time as an 'Operations Administrator' for Gant Meetings, a division of Grant Travel that plans and coordinates all of Mars Corp's global conferences, meetings and travel (yes, the chocolate company!). I will start off by coordinating the planning staff, and then I'll go full time in fall when the boys are in full time school as an official planner.
THIS..IS..HAPPENING! I'm back! And it's the job I've dreamed of. All of that beautiful detail and precise planning to see a large scale event come together all over the world (and some in person!) - music to my ears!

I admit, the sudden change will bring a lot of growing pains for the family for a little while, but we'll get our footing. I was wondering how painful the process was going to be for 're-entering' the field after such a long absence, and the thought of having to tell someone WHY I stepped out so long gave me anxiety. Who wants to tell a sob-story while trying to sell themselves? So it was really great that the hiring manager knew the situation beforehand.

I can't thank my friend Krista (you rock!) enough for the amazing opportunity. And even though she keeps saying she didn't "get me the job", she sure was instrumental on linking me up with an amazing referral to get my foot in the door! Long time friends (we graduated college in the same program) who believe in you are an amazing part of life!

The next huge CHANGE in our family... Jason got a new job! Say what? Yes, this is all happening! It feels like Heavenly intervention since his new position affords me to be able to work, right as a great opportunity came knocking. Jay won't be traveling the way he was for the past five years, so it will be really great to have him around a lot more helping with the kids and the house.

Jay is an Insurance Specialist and working toward becoming a Financial Planner with Mass Mutual. He bleeds sales, as all of you who know of him, so he has remained in his craft, but he also loves the financial end of life. Nothing would please him more than to sit and talk to people about how they can be financially stable, prepared and rewarded!

Between the two of us, we're up each night doing online study materials, training and a lot of schedule-comparing. The stress and anxiety levels fluctuate, but at the end of the day, we're both moving toward being fulfilled with our lives, so it's ALL good! Change is good.. I need to keep repeating this mantra!
My main concern is obviously the boys and all their needs. I'll do my very best to stay on top of everything. eeeeek...
And yes, a call has already been placed for summer help with the kids! Need.good.help. I have high expectations  :)

Two little pirates at the Bonin Twin's birthday party. Craig made this map!

Going through the pirate booty with Kelsey!

Mmmm cake.

The big boys pretty much beat each other with their swords for a straight hour.

Jason and Kelsey being goofy!

Jay and Drew goofing around too!
How cute?!

The kids winding down.

Loving birthday presents.

I cleaned out my file cabinet and am moving Jax's first 5 yrs of medical records to the basement file cabinet. My goodness!

The boys went to the Brewer's exhibition game on Saturday afternoon. Aoki's translator gave them a ball!

(sigh) Jax has to wear headphones and listen to this disk as background noise while he's attending to tasks/eating. The OT said it helped him in therapy to focus, so we'll be trying it at home. The school is also trying a few new things as well. More to come on this!

My official shameless plug for Jason! Please let us know if he can be of any help!



Some of the areas where he can be of assistance include:
  Investment analysis - Education funding - Mutual funds - Annuities, 401k rollovers from old jobs - Tax reduction strategies - Asset allocation - Retirement planning - Estate planning - Pension plans - Life Insurance - Long Term Care Insurance - Disability income insurance

Sunday, March 23, 2014

Teacher Conferences, Birthday Parties and Croup, oh MY!

I should've updated on Friday, and now here I sit with too much to say to sum up the last few days, why do I DO that? I'll try to keep it short!

We had the boy's teacher conferences on Friday. We met with Brady's teachers first. He's doing well and coming along nicely with friends. They love that he tries to communicate with peers and adults and the kids do a great job of being as patient as 4-5 yr olds can be. We have noticed that words that he's mastered in therapy always end up lost when used in conversation, so that's a bit frustrating.

I received Brady's 'winter test results' and was a bit surprised by them. Brady was under grade level for 30 of the 50 categories last fall, wow. He came up to normal range for everything except 2 categories - 'Speaks Clearly' and 'Uses conventional grammar'. He's actually scored in the "NOT YET" area and not even on the chart.
ugh.
I mean, yeah, OF COURSE that's where he'd score and if they said differently I'd be concerned, but still, there it is in black and white. The kid can't speak. I mean, not really with other people for any length of real conversation. I'm not sure what to do except what we are doing. We'll definitely be getting him private daily therapy over the entire summer. Once we have our new insurance in April, I'll be exploring our options, so hopefully that's all set up soon.
But, on the bright side, how amazing is it that he came up to normal in TWENTY EIGHT categories since last fall? I love it! He's bright and sweet, but will struggle with speaking and reading because of the Apraxia. That seems to be what will remain our main focus for this kiddo.

Onto Jax.
Jax is doing really great academically, and he's shown what a bright little elf he can be. It's kind of nice to take a sigh of relief from that category.
The area of improvement that we need to really focus on is Jax's inability to regulate his body and attend to a project in a timely manner. Basically his fine motor and sensory issues.
The Special Needs teacher said that she really thinks Jax's asthma meds are making him 'excited and impulsive' and she sees it in most of her asthma kids, especially when they go up in medication strength. HUH. I never even thought of that! She thinks it's hindering his fine motor even more, but we just need to work with it since the medication for his lung function is more important.

So.. we had a long discussion about this whole topic. Jax currently only gets 'observed' by an OT at school, and then I take him to private OT on Fridays since he doesn't have class on that day. The Special Needs teacher wants Jax to be in full OT with school services for kindergarten, so I'll be calling the current school OT to discuss her plans for the IEP kindergarten plan. Jax just seems to be unable to pull it together and regulate himself to focus on some things. They never mentioned ADHD this time, and seem to really be focusing on his fine motor delay, asthma meds (cracking him out for lack of a better term) and regulating himself to hone in on his capabilities.
I asked why he scored so high in the area of 'Writes to convey meaning' when the kid just can't really write, lol! The teacher said that Jax understands and KNOWS what it is, so that's what he was graded on. She said that if she sits with him and reminds him over and over to slow down, focus and to do the work, he can do it. He'll 'read back' his work from the day before and know what it says.
So I guess I understand that.

Then I took Jax to his private OT at the hospital afterward. When I picked him up, the OT said she had a hard time getting him regulate and attend to the activities. I almost CRIED! I told her what the teachers had just told me and she seemed to understand completely why this was his biggest challenge at school. She is going to start to having Jax wear a weighted vest and sit on some particular items in his chairs to see if it can help him focus more on the projects. She'll work specifically on these areas for the next few weeks.
Interestingly enough, Jax had to use a weighted blanket for 2 years as an infant which his first OT gave him. His sensory was so off from his prematurity that everything startled him when trying to sleep. The current OT said it's almost the same thing for Jax now, just a more matured version.
Jax also has started touching everything to his mouth to 'feel' it. The OT thinks that now that his mouth is becoming de-sensitized and he's eating now, it's how he explores things and it should subside on it's own.

The good news is that while Jax will require more OT for kindergarten, his specialized phy-ed teacher said that if he continues with his progress these last few months, he may graduate the therapy for kindergarten, woot! She said she'll see what she thinks for recommendations for his braces though, since he'll be ready for a re-fit by the end of the year.

So... we know what we need to work on and what to be proud of. They've come so far!

They had a fun weekend with a birthday party for the Bonin-twins on Saturday. They had a non-stop blast! Unfortunately, they're little runny noses from that morning really blew up that night. Brady has croup, and oy, Saturday night was a bust. Thankfully we have his liquid steroid on hand for nights like that, which keeps him from getting stridor, but the hacking kept him up all night. Hopefully tonight will be much better with a new humidifier and the second dose of meds! Jax hasn't been affected by coughing at (possibly because of his daily Advair that he takes) but he has been gagging with meals and having some vomiting, but nothing out of the ordinary with a simple cold for him. He's already improving.
They've been so healthy, so I'm definitely trying to not complain!

::I can't get my photos from my phone to download for some reason, so cute photos to follow soon!::

Monday, March 17, 2014

The End of An Era

Today has been a day of ups and downs and quite the roller coaster.

The day started great with Jax having his Feeding Team followup at Childrens Hospital for his weight, diet and feeding progress reviews. Jax has gained almost two more pounds since November and now weighs around 31.1 lbs. Since he's so short, his BMI is actually ON the charts which is GREAT since he was so clinically malnourished just one year ago. He showed the ladies how he eats now and they're all so impressed and happy for him (his dietician, the feeding psychologist, feeding therapist and GI nurse).
They said that if he continues to show this growth at his next check with the full GI team in 3 months, that we'll cut his nightly tube-feedings in half and see how he does. That will be the OFFICIAL beginning of his final tube feeding weaning. EEK! That means that if all goes well, he could possibly start trials of no tube-feedings in six months. So in 9-12 months he has the possibility of being tube-free... WOW!
Now, those are all just possible numbers and I know not to get too wrapped up in them, but how cool to think, hey?
So, we had to come up with a list of what has been changed in the past 3-6 months that has given Jax such a great run of growth, feeding and health. This is what we came up with:

- New asthma meds (no pneumonia and/or hospitalizations - first winter of his life!)
- hGH injections (making his entire body stronger and growing)
- Adenoids removed (no idea if this is helping with feeding, or contributing to better health)
- Eating real food and less Pediasure (Real food in his system seems to make the world of difference. A full yogurt each day keeps his GI/immune system much stronger)
- Reflux Meds (Seems to really help since Jax hasn't had any spontaneous vomiting in months, only vomiting from gagging on food at times)
- Increase feeding therapy to twice a week when we can which helps with getting the 'real food' in, and starting private OT once a week this year has really helped his overall sensory processing, which may be helping with food as well.

So, that's all great stuff.

The End of An Era part of this post, per the title, is Jax's Medicaid. I received a letter tonight stating he no longer qualified after being on it for 5 years. This is really great news, and anxiety-inducing news all wrapped up into one.

The criteria to qualify for this program in WI, is that the child must have substantially compromised functional capacity and require long-term nursing, restorative, or treatment supports or services. Jax meets one half with is tube-feedings, but his developmental delays have improved to a point of no longer qualifying. It's a fine line.

So, Jax still has a speech issue requiring therapy, but the delay isn't 2 standard deviations below the norm, it's only 1. If he had Brady's speech issues, he'd qualify (see what I mean with this example? Jax qualifies medically and Brady would qualify developmentally) His fine motor skills allow him to get out of a bathtub and use a toilet, even though he has to wear a diaper overnight due to the tube-feedings and can't use a utensil to feed himself, and yet, requires the therapy to learn many fine motor skills. The deviation is 1 below rather than 2.

See, it's a fine line. I always prayed he wouldn't qualify for this program, but hoped he'd be far enough along that the financial burden wouldn't be so high. He still requires the same amount of care/supplies/meds/therapies as he did last year, so it would feel more necessary to drop him from the program if he improved enough to not need something he was previously using.

He sees 4 specialists, 2 private therapists, has $1500/mo in medical supplies and $2300/mo in medication for a healthy month. If he has asthma complications or needs new braces, or needs extra followups for any of the clinics... see, my mind is spinning. I have no idea how much the new insurance will cover. We're at such a great place, that I kind of wished his Medicaid went one more year to see him to the tube-removal or no longer needing private therapy.

It is what it is and once I get through the hassle of changing his insurance and re-submitting everything for approvals, and get a new budget in place, it will be fine. It's just that MOMENT of reading the mail and sitting there thinking, "how are we going to do this?" that I need to sleep off tonight.

New big boy seats.
Still love the box.

Jax very PROUD at the GI clinic after getting dressed from his weigh-in.

An afternoon of fun at Toys R Us last Friday shopping for an upcoming birthday party.

Does this look like a bad idea to anyone else?

Saturday evening silliness.


My little leprechaun Brady.

Random St Paddy's picnic I guess!