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! 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.
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!

Thursday, March 13, 2014

Developmental updates for J Man

I received some paperwork home showing Jax's current standing as a 4k student. There is a chart showing about 50 different objectives with a shaded area of what is considered typical and expected development for a four to five-year-old in each of those objectives. There are notations where Jax fell on this chart in fall, and now where he falls in winter. It's really interesting to see how your child has grown, or not, and you can see patterns of where they may or may not need more help in kindergarten next year.

I was really pleasantly surprised by Jax's rankings overall. He is in the normal/expected range for most of it. He jumped up a ranking in many areas, and only went down in one category. Which, didn't make sense to me until I read the IEP update that came along with this chart (more to come on that).

I found it interesting that Jax actually was above grade level in a few areas (swoon my heart!) but then realized it was mostly in the 'social-emotional' category. Well, bless his heart, of course it was. :)

So, of the 50ish objectives, the ones that stand out:

Above grade average for:
Responds to emotional cues
Makes friends
Balances needs and rights of self and others
Notices and discriminates alliteration
Identifies and names letters
Writes to convey meaning (say WHAT? I'll be asking about this one)

The one area that Jax scores below grade level is 'Notices and discriminates rhyme'. Now how interesting is it that he is above grade level for alliteration (noting the same sound of two words) but he can't hear what a rhyme is? I wonder if that will be a piece to any puzzles in the future.

Jax was below grade level in 4 categories last fall, so to jump up to only one category by winter is pretty cool. Those categories were:
Speaks clearly
Engages in conversations
Notices and discriminates rhyme (this one is still below average) 
Demonstrates knowledge of patterns (this one he jumped up 3 levels, very cool)

The category that Jax fell backwards one level on (although still in the normal range) was 'Attends and Engages', which made a little more sense with the IEP update. As a reminder, an IEP is a legal document/plan for the school to follow with goals for kids who have special needs.
So... his IEP report states that he's on track to achieve all his goals in every category, which is great.

Jax is making notable progress in speech, but still continues to need some hard work. He's demonstrating some nice gains in his specialized phy ed course with gross motor skill development. He still has some unsteadiness in particular movements, but it's coming along nicely. His Occupational Therapist noted that his position for writing tools is much better, but his pressure/low muscle tone is still very light. There is a note from her that he can be resistant to adult intervention for correcting/guiding him and he wants to be independent and proud of his own work. He needs to slow down and allow the aide to eliminate/change some developed habits.

Ok, I guess none of that surprised me. But then, the final report... from his actual special needs teacher, the area/goal of him regulating his body to attend to speakers kinda rained on my parade. Even though she marked that he's on pace to achieve his goal by the end of the school year, his progress notes state that he's making minimal progress at regulating his body, attending to a speaker and completing an assignment or task within the same time as his peers. She says he struggles during most activities and he needs to slow himself down to focus. He is still distracted by everything and everyone and he does 'slightly' better in a quiet environment with no peers to distract him.


I thought he was doing so much better. I knew his fine motor tasks (writing/drawing) took him much longer than the other kids, but I didn't think he was having a hard time regulating his body or being SO distracted still by others.
I'm sure this will be another discussion about 'attention' vs 'personality' vs 'trying to get out of performing a development delay'.

It's amazing how ONE junky report out of 20 good ones can bring me down.

So, I have some notes to bring up at teacher conferences next Friday that Jason and I will be attending. I think Jax is doing great in school and have GOT to know there will be areas of growth to address. All kids do, right??
I haven't got any reports on Brady, and I'm almost glad since I needed a few days to really look at and digest Jax's first. It definitely makes me glad we decided to do the IEP meetings separately this spring!

Here's a picture of the boys before the bus earlier this week with warmer weather, but the sunlight off the snow was too bright to look at the camera! Jax keeps yelling at the snow to GO AWAY so he can play baseball :)

Sunday, March 9, 2014

Life is a circus

The 'BRAVE' reward system seems to be working with Jax. We give him a goal each week, and if he's brave during his nightly medication routine (injections) he gets a fun reward. This week he got to go to the circus!
Now... I'm actually not a fan of 'trained wild animals' for my entertainment, but eh, I gave in for the boys to see the real circus. It's slightly cheesier than I ever remembered, but there are still some really impressive acts out there. It kind of felt like a very long episode of 'America's Got Talent'.
The boys got bored during a few parts, but the lions, motorcycles and cannon really got them excited.

Today is our catch up day with things around the house. Jason is tackling the attic above our master bathroom to see what kind of damage has been done to the wood and insulation with the leaking roof. Remember the ice dams? Yeah, from all that. So he pulled out wet insulation, sealed the cracks and is drying it all out with fans for the next few days. He found a large bee nest up there, so instead of poking at that, I think I'll contact our Terminex guy to remove it!

As for the boys, Brady is working hard on a new letter sound 'N'. I sat in on his therapy session at school on Thursday and he's working hard on that. His Special Needs teacher contacted me about Brady's IEP meeting coming up in May, and we'll be meeting at the elementary school where he'd be going to kindergarten. We will meet with his current 4k team and key members of his new team for kindergarten.
This is getting real! They requested that we do the boy's IEP meetings on separate days since the meetings would be too long otherwise. It looks like we're shooting for May 13, which sounds far away, but really isn't.

This of course leads Jason and I into a tough situation. I submitted paperwork to open enroll the boys into the Pewaukee school district. We are in the 'TOWN' of Brookfield, and zoned for the Waukesha school district instead of the Brookfield school district (which is much closer to us). There are no open enrollment spots in Brookfield, so the boys would have to go to Waukesha unless we open enroll them elsewhere. We have to do public school because of their IEPs and all their special needs academically.
Well, the Pewaukee campus distance is similar in distance from Waukesha, which is much smaller with much more impressive academic stats at the high school level. So I put in their names for open enrollment to see if they could get in, but we won't find out until JUNE.
Well... here we are making the boy's kindergarten plans in May with all their new teams and goals and complete plans to cover all their special education needs, therapies and/or adaptive devises etc. We LOVE their current 4k program in Waukesha, but they won't have the current teams they have now. So, we've been thinking, we should just keep them in Waukesha for the next 1-3 years since their special needs services seem to be going great and try for Pewaukee later in elementary school.
The only problem...
The later the grade, the harder it is to get into the school systems (and we have two for the same grade). What a dilemma!
So... this has been topic of convo up in here lately.

In Jax news, I submitted a 4 page meal diary to Jax's feeding therapist to turn in with reports to try and get more therapy sessions from insurance. I feel like our 'approved sessions' go by so quickly before it's time to resubmit everything all the time! He has a feeding team followup at the hospital in about a week where we'll get an official weight and progress with the dietician. My hopes are up a bit to start taking some of his tube feeding away at night and to start the official wean, but you all know how I've learned to not do that to myself too much!

The boys have been so healthy lately (knock on wood) and it's been fabulous! They always wash their hands upon entering the house now no matter what, and I think that's been helping a lot, and of course, I think the tubes and adenoid-removal has helped too. Brady had a 3 day runny nose with a lingering cough last week, and we thought Jax was going to escape it, but I noticed a little runny nose on him he woke up today, so we'll see how that goes, but wow, it's been nice - no complaining here!

Tigger and the boys at the circus. Brady wouldn't go near a clown. I get it buddy, I get it.

Jackson, Brady and Jaxon loving the circus.

Patiently waited for the camel ride.

Pretty much what the 3 boys did after the circus for about 3 hours.
Total hams!

Brady wanted to look like Daddy as he worked in the attic!

Tuesday, March 4, 2014


The boys had a boy's weekend with Jason over the weekend while I had a girl's weekend with some friends in Texas. A great break for everyone.
I hear the boys went to the gym a lot and a high school basketball game each night. They even went batting and visited the barber. Lots of DUDE time, hey? Ha!

Jax cleaned up.
Brady only cares about the sucker.

Brady getting ready to bat.
Jax taking a crack at the ball!