Sunday, December 30, 2012

Phone Photo Dump

Jason and I have a bunch of photos on our phones that I can share. We haven't gotten a chance to get our camera yet, so there will be some fun Christmas photos to share off there later.
Lately we've been working around the house with cleaning things out, organizing, running errands, going to the gym and the fun and yet super frustrating task of potty training. Or I should say, the lack thereof.
We decided to REALLY push the subject again for the past two days since we're home, and we've got Jax talking about it. And if you ask him where he should go, he says potty. But we've had z.e.r.o. success so far. Even with putting them on the potties when we know it's the time of day they particularly go. Even sitting there for 30 minutes. Promising them special trips to the toy store where we'd actually leave buying them something they picked out. Nothing!
Jax wore real "unerwares" during breakfast this morning, from the advice of some friends, but after a non-successful try at the potty, he requested a diaper back on.
grrrr....

Brady's first bowling attempt! The boys attended a bowling birthday party. Brady beat the entire party with a score of 125!

Jax's first throw of the ball.

The boys with Kelsey and Drew last Saturday!

Story time.

Yes, I realize the boys will kill me for these pictures some day! They tried on their first pair of underoos!



Wednesday, December 26, 2012

Tour Complete

Our holiday tour is complete. I always find it interesting that no matter what time the boys go to bed, they always get up at the same time! So they're quite behind on sleep right now, but they're forging through pretty good. They have a bowling birthday party to attend later this afternoon, so I'm hoping for a nap from them today, but I'm not holding my breath! The boys were pretty good at the office of our 'end of the year financial adviser' meeting this morning, but as the day proceeds, I think a nap would be good before this party!

We went up to Green Bay on Monday afternoon and stopped by my Goddaughter and her family first. Then up to my grandma's apartment, and then a final stop at my grandparent's where there was a family gathering. We wished we could've stayed for the entire party and gift exchange, but at 7pm with a 2 hour ride, we had to go (BOO). The boys loved picking out cookies and putting out sugar cubes for the reindeer. They said goodbye to Buddy the Elf since he'd be back at the North Pole until next year.
The boys were very excited Christmas morning, and wouldn't ya know it... they each got the big boy bike they asked Santa for! We opened the remaining couple of gifts, had breakfast and then got ready to visit with Jason's side of the family up in Manitowoc for the rest of the day.

By the time we were home last night, both boys were sleeping in the car and NOT happy when we transferred them into their beds. But otherwise they've been rather excited about the new toys at home. We're trying to only open a few at a time so they get good play and appreciation out of them.

And now... the cleaning out of their toy room to fit the new toys - I hate this part! Buuut we get to give the old toys to friends who have younger kids, so that part is good - yes, the silver lining.

Oh, and I forgot my camera at Jay's parents house last night - seriously. So I don't have any of the great photos with me to post today, but as soon as I get the camera back, I'll put them up! This year's theme was 'leaving things behind' because we left the boy's coats at home by accident since we strapped them in the car seats without any on, then the presents at Sidney's house, a bowl at my grandparent's and then finally, my camera and Jax's milk mixer at Jay's parents house. Wow, huh?

But here is one photo that Sidney emailed me of all the kids, it's just too cute!

And yes, Layla is younger than the boys and a normal sized 4 yr old! We may start re-thinking our nickname of "Elf" for Jaxie.

Sunday, December 23, 2012

It's Christmas time!

And so it has begun!
We've been getting last minute errands done and preparing for these busy days. The boys had their Christmas with Rachel and Dennis (and now Santina too!) on Saturday night before they're gone up north for the rest of the week. The boys still don't acknowledge the baby too much, but we'll hear a 'baby' said once in awhile.
I've got all my food shopping done and this evening I'll be preparing all the goodies to bring to the Christmas visits we have planned for all of Monday and Tuesday. We have about 8 hours of total driving and 5 stops, but of course, the BIG stop is from Santa that is very much anticipated at the house! The boys are soooo excited about Christmas and Jax says, "Mewey Kissma!" to people as a salutation when leaving. I don't want it to be over!
Happy Holidays my friends, travel safe!

The boys helped Santina open her gift, and Jax called it a "Purpa Ocopuh". Pure awesome.

Jason examining Santina's little face.

Seriously... these kids make Christmas SO fun. They are so excited to open gifts and they rip through them now. I keep telling everyone that they could wrap up pencils and the boys will act like they are real life rockets. Here is Jax saying, "Oh cool! DANK YOU!"

Thursday, December 20, 2012

Endocrine Appointment

Snow day!
But we were all still up early and out the door (it's just been rain so far here while we wait for this impending blizzard in the afternoon) and off to the boy's Endocrinologist appointment at Childrens Hospital.
It was a good and informative meeting. They did measurements on the boys, and reviewed all the test results from the Genetics Specialist. When they measure height of the boys there, they actually stretch them out for a 'true height', so each boy got an extra half inch than they normally do when measured. (Brady was 39.5" and Jax 37.5") but I was surprised that they weighed the boys with all their clothes on (Brady 30.5lbs and Jax 25.7lbs) especially given that they had jeans, shirts and sweaters on, but maybe ounces only matter when at the Feeding Clinic!

After the Endocrinologist did some math (based on our heights, puberty ages etc) and made some charts, she said that the boy's "genetic potential for height" is 5'7" - 6'-3". Sounds great, right? The doc also said the boys are actually 'ON' the charts. Brady is in the 12% for height and something like 5% for weight and Jax is 3% height but not on the chart for weight.
Here is the math, science and overall Endocrine part of all these figures...
Neither boy has had growth to this point to reach their genetic potential. In other words, neither boy is growing at a pace to hit 5'7" as an adult (the shortest of their genetic potential). Their growth hormones and thyroid tests all came back normal (low end, but still in the range), and their bone scans came back saying their body thinks they are 4 years old, so this tells the doctor that their growth was stunted in utero (like the Developmental Pediatrician said) and the boys may never 'catch up' to their potential.

They are both currently candidates for Human Growth Hormone medication given their rate of growth and their genetic potential. But here's the plan... we're going to wait about 7 months and take a look at how they're growing this year, and see if their rate of growth speeds up a little bit now that they're healthier (well, Brady has always been decently healthy, so we'll see) and then we will see if the statistics of their height potential go up.
We all agreed that healthy and short is just fine with us, but obviously if we see the boys will not even get to a height that will give them opportunities at a normal social life, then of course we'll consider the hormone treatments. I asked what height potential Jax is currently at and the doc just shook her head saying its not currently anywhere close to the minimum of his genetic potential. Oy.

Jason had a long talk with the doctor about the hormone treatments since he had a pretty bad opinion of the drugs when he was a personal trainer. The doctor explained that they are two very different scenarios and side affects. An adult taking and abusing the drug to enhance their athletic performance will have extremely negative affects on their body, organs and temperament. A child who is currently growing (which is the biggest factor - a growing person vs an adult) has a doctor monitoring every step of the way, shouldn't have any of the negative affects. One good side affect that may actually be a positive is weight gain and hunger - that would only help Jax with his feeding disorder battle.

So, this is all something to consider, and we were sent home with a lot of information about it all. We will see if the boys show 'catch up growth' over the next 7-12 months and weigh out the options. There is no guarantee that it would work and the purpose would solely be getting the boys to a 'normal short' rather than an 'extremely short'. The doctor said it's very hard to get insurance to cover the medication and of course, the costs are sky high, but Jax actually hits every requirement right now (which I looked up, and it means he's not even on pace to be 5'3"). I guess we'll just focus on their health and development and put this on the back burner until their appointment in July. I can honestly say that if this were the one obstacle for the boys to deal with, it may not even be something we'd consider. But who knows, they may show some catch up growth to prove they'll just be 'really short', which we'd take!

In the meantime, it will be cookie-decorating day since the kids are home from school, and I try to squeeze work in during their nap... wish me luck!

The boys having fun with cookie cutters.


Brady was REALLY into it!

Hmm, our gingerbread men look more like flowers...

The boys made us these floor mats at school as Christmas gifts. They did this with their feet and hands dipped in paint - too cute!

Tuesday, December 18, 2012

A Texan Christmas

We are back and in full swing of our busy week. The boys were awesome to travel with, and of course they loved the planes. There was no whining, crying, fighting or tantrums, so I think that was our gift from the boys for Christmas! We had our niece Marley (my brother's daughter) and my mom along.
Our first night at Adam and Jessica's house was relaxing. We were supposed to go on a lake tour of lights, but it was cancelled from some rain. We ordered in food and just hung out. The rest of the weekend had gorgeous weather in the low 70s. We had our Christmas morning on Saturday opening gifts and then strolled the streets of Ft Worth all afternoon. The kids all had a blast with seeing real Longhorns, petting some random farm animals, seeing a Texan-Santa and strolling the shops.
We had a nice dinner out that night and then Sunday was the big football game. Jason is a huge Steelers fans (the rest of us are Packer fans) but we all supported Jason and sported the gear and went to the Dallas/Pitts game. My mom and the kids did a variety of things back at the house, including seeing the horses behind my brother's house - neat, huh?
The weekend was a nice family getaway, but of course, it couldn't go THAT smoothly right? We got stuck in Kansas City on our layover when flying home. Our connector flight got cancelled and we had to wait a total of 7 hours to get another flight. You'd think the kids would go crazy in the tiny area that we were in, but they were all super behaved. The boys never made a peep and stayed busy between the various electronics, coloring and jabbering with each other and Marley. Which may I add, the boys are rather obsessed with Marley and had to have her in their sight at all times!
We got home much later than expected last night, but we're settled back in and tackling the week.

Jax had his pediatric psychological testing this morning at the Development Center. I haven't gotten the results back yet, but the psychologist said he did well and she's sending me a report. She made the comment that it's a clue to our puzzle, but in a good way. So I'm assuming she's hinting that they don't suspect a cognitive disorder, and most likely a Language disorder with their speech disorder that makes them seem to not 'get' stuff. But, we'll have to see once all the testing and reports are done.

I was able to run the boys to the grocery store after the appointment since our house was totally void of food and then set them up with activities so I could tackle a bit of my piled up work so I'm not up all night.

The boys and I are going to cut out cookies and bake them tonight and then decorate and make up tins for all their teachers and therapists tomorrow. They're pretty excited about it... I'm dreading the mess, but it's neat to see them so excited.



Uncle Adam with the boys. *Everyone always commented how much the boys looked like my brother when they were babies. They are now looking much more like Jason as they get older. Interesting huh?

Uncle Adam, Aunt Jess, Cousin Marley and Nana


While Jason was sleeping, Adam took all the kids for a walk with the dogs. And the boys were put in Packer hats of course!

Some present-excitement!



Jason with Marley


Adam, Jess and Marley (and Wrigley and Lambeau)

Crazy bunch

The boys getting a motorcycle ride



Jax with his Longhorn balloon hat!

No one was too sure of the clown, but I got the boys to take a photo with him and his creations!

Texan-Santa!


During our dreaded day of sitting at the airport!

Tuesday, December 11, 2012

Lots of ughs, but still pretty happy

When Jason came home from work last night, he decided to play a game of bowling with the boys on the Wii while I made dinner. Well it turns out that our little Brady may have been a slow learner, but boy has he mastered it. He beat Jason with a score of 177! Well done little dude!

The boys had their psychological intake at the Child Development Center, and Jax begins his official testing on Tuesday. I've received a report back already on each child from the Developmental Pediatrician that they saw and it states how the appointment with the boys went (the report is a copy that is addressed to the boy's regular pediatrician).
The impressions at the end for both boys stated that they had CAS (Childhood Apraxia of Speech) and a possible Language Disorder, but probably normal non-verbal cognition ability. It also stated on both that he didn't find ADHD to be the problem, but their classroom issues may be due to a possible Language Disorder, which will be tested.

Brady's report said he seemed well-developed and well-nourished, although not one word was understood by the doctor. Jaxon's stated that he was thin and small, but not in acute-distress, and also a note about his low muscle tone and pronated feet, and very little understood when attempting words. *I thought there were plenty of words we could understood from Jax, but I guess it doesn't matter since he doesn't do the speech reports.*
Otherwise the reports were all as expected, so we'll see what we find with the psychologist and meet with the whole team for their final report sometime in January.

The boys didn't have school yesterday, but Jax did have a Feeding Clinic follow-up. It went well, until I freaking cried. UUUUGH. The dietician, feeding psych, nurse and speech therapist all sat across from me with their computers taking notes as we updated everything. They got to the point of chewing and asked how I felt he was progressing. I felt my face get red and I told myself to not cry... well you know how well that works. I suddenly said, "I feel like we're failing and this is never going to end" and the tears just would.not.stop. Did I say UGH yet?? I was so embarrassed as they got me tissue.

They of course told me we are not failing and this process can be so painfully long because he's learning to do something so foreign to him. Plus given the Apraxia issue in general, it can affect his motor-movement-learning as well. I pulled it together and we finished the review and they did a feeding session with Jax. This time they tried a small cooked carrot and watched how he pocketed it under his tongue while he told them it was in his belly. He does this with crackers, but after it's under his tongue for 10 seconds, it dissolves enough for him to swallow with a drink of milk.

I explained to them that he only gets one feeding session every other week with Mr Nick and I'm clueless how to teach him this at home other than practicing what the therapist shows me. They've decided to start him in some outpatient sessions because while the process IS long, he certainly IS stuck right now. So Jax will see the feeding team every few weeks for a session specifically for chewing. Hopefully that starts to help - we'll take any help!
They left me alone about his weight and just wrote in his report that he's still quite lean and will be requiring more calories soon. 37" tall and 25.7lbs with clothes on - ugh #3. I found some nice fatty, high calorie yogurts at Trader Joes that they just love, so maybe that will help~

Before Jason and I could sit down with the boys for dinner, we caught Brady spoon-feeding Jax! I can't believe their sweetness sometimes... (and yes, I make Brady wear a bib when he has nice sweaters on and there's ketchup on his plate... )

Sunday, December 9, 2012

Santina Rose

She's here! Rachel had a long, almost 20 hours, of labor on Saturday. Just before 8pm Saturday night, baby girl was born and her name is Santina Rose, isn't that beautiful? Old Italian family name and it suits her well. We have no idea how Rachel was such a trooper, but wow, she really was! Santina was born at 21" long and weighed 9lbs, 4oz and Rachel is TINY, so that's all Dennis' fault. Ha!

I brought Jason and the boys back to the hospital today after the dust settled and they were so so so excited to go. Then they got there, and were confused why we were in a small hospital room. I think they thought we were going to Rachel's house by the dogs. So then they just wanted to sit by Nicole's son, Evan, and play video games. They said hi to the baby, but they didn't want to hold her yet (NO PHOTO OPP, BOO).
We kept getting Jax to say Santina's name and once he said Santa, so when we were by the baby, I asked him she was Santa and he said, "Santa? NO, BeeBee GeeJus". I've got this kid so confused! :)

The boys were pretty good, and then it came time to leave. Nope, they were not happy about that and then decided to not give anyone hugs (except Evan of course) and they were just kind of poopy little guys. So no toys in the car on the ride home. Bummer!

Tonight we are getting ready for the week. Jason has a business trip and then we leave for Texas with my family on Friday, so I think it will fly by. I packed a large box of supplies to ship out to my brother's (Adam - who is in Texas) so there's less luggage and stuff to travel with. The boys are really excited about a plane, but I don't think they believe us that we're actually going to go! It's only for the weekend (we fly home the following Monday morning) but traveling with little people always adds an extra layer of needed organization, planning and packing.

The boys don't have school tomorrow, but Jax does have a Dietician check-in with the feeding clinic to check his weight and discuss his current diet. I think they'll be a bit disappointed to see that Jax hasn't progressed much with either volume of food, or biting and chewing. I'm going to ask their opinion about a possible additional inpatient clinic to get over this hump, but I don't even know if that's an option. I'm just bummed that it will be a year in February since we had the last clinic and we've been stalled out for quite awhile. We'll see what they say, and hopefully Jax's weight doesn't get us in too much trouble!

Nicole and Santina this morning.

How cute is this bunch?

Baby heaven

This little lady is holding her head up strong and steady already!

Dennis and Big B hanging out.

Nicole and Evan with baby. I want Nicole to have a baby now!

The boys got to open an early Christmas gift from the Garbers for a particular reason...

Suitcases to use on our trip! They are obsessed and love them, thank you!!

Thursday, December 6, 2012

Buddy

Busy, busy little week.
The boys got to see Santa last night at our town's tree lighting celebration at the fire station. They were SO excited that they were just jumping up and down to get out the door to go. We practiced what they would say to Santa (basically just the word 'bike'). When it was their turn, they each sat up there happy as can be. Jax was so excited that he just leaned into Santa's chest and grinned ear-to-ear. Santa asked what he wanted and finally he yelled out, "a bike!" and everyone cheered! Brady was sitting on Mrs Claus' lap and he was also wearing a non-stop grin.

This morning the boys woke up to find that St Nick had come last night - lucky boys! St Nick sent the boys "The Elf on the Shelf" and we've named our new family member 'Buddy' (yes, Buddy the Elf for those of you who loved the movie too). The boys loved the book and they've become quite smitten with this elf!
After they calmed down from that excitement, we got the boys ready and took them back to the Child Development Center for Brady's evaluation with the Developmental Pediatrician. His appointment was more focused on speech (where Jax's was more on size). He also highly recommended that Brady use an adaptive speech tool to help him communicate with people during this time when he's really not understood. The doctor said that children can sometimes get extremely frustrated, and it really changes their personality and overall demeanor, so the more Brady can get understood, the better. He also wants to intervene before Brady becomes less social and avoiding kids because of it too. So we're just waiting on the school to get his evaluation done, so we can match the one they plan to use at school.
The boys both have their psychological 'intake' (for insurance purposes) tomorrow, which will let the doctor know what to test the boys for next month.

While the boys were in school today, I had my own hearing test. I think I forgot to update here about my ENT appointment that I had a few weeks ago. I had my nose cauterized for the bloody noses (not that it really helped) and the doc said my internal septum was straight and not the cause of my sinus issues (he said the outside is genetics and post pregnancy which happens when you have a large weight gain and drop like that) but he did see an issue in my right side - which I won't gross you out with the details. He asked if I had ear issues, and um, yes, that is my "bad ear" which is affectionately coined by my friends. Miss Rachel refuses to sit on that side of me when we're out to dinner, it's kind of funny. Well, the ENT wanted me to get my hearing checked by his Audiologist associate and re-visit things once that was all done. Now mind you... I have not had great hearing out of this ear since I was a kid. I've always kind of known this after tons of ear infections.

So I had my test, and sure enough, I have "mild conductive hearing loss" in my right ear, but it isn't from nerve function, and most likely a middle ear problem from scar tissue (ear infections) or possibly a bone issue (something like that). I guess that ear failed the 'pressure test' (I'm sure I go the name wrong) where this tool measures how my ear drum expands and contracts under pressure (it actually slightly hurt that side) and my ear drum did not properly respond with the pressure. The audiologist said I was a candidate for a small hearing aide that would help me in social instances with a lot of background noise. She said I could come back in and try one out to see if I felt it really helped. The problem is that most insurances won't cover it, so it would need to really make a huge difference. I think I can live with how I have for awhile yet, and just have it monitored.

My ENT will review this information and we'll meet again to see if we can figure out the sinus/ear thing. I'm glad I did this since the boys are being explored for drainage/hearing/infection problems and if I can avoid this for them somehow, I will! Knowledge is power, right? If simple tubes could keep their ear drums healthy and avoid hearing loss in the future, I'd like to know now and fix it for them.
Not to mention the doctors keep asking if there are any ear/hearing issues in the immediate family and Jay just looks at me (he knows that if I sleep on my left side, I can't hear the boys at night), so it's good to have official answers.
Jay says I'm deaf, but that's just the love talking.

The boys waiting in line for Santa.

Happiness is bursting from them!

"BIKE!"


The neighborhood kids after Santa.

St Nick came!



I couldn't figure out what Brady was doing...

What a caring little guy! He mad a booster for Buddy.

To have a snack together!