Sunday, November 15, 2015

On Our Way

Jax turned the corner on Thursday and started to get up on his own, and didn't cry with depression when waking up. We kept his activity low and let him really just heal up even with feeling better. He left the house for 30 minutes later on Friday to the chiropractor and then to church for an hour on Sunday to Sunday school. Otherwise he's been home for 8 days just trying to get better.

He'll go back to school tomorrow, which he's really excited about. I'm hoping without gym class, he'll do well. He walks a little hunched over like a little old man since he's protective of the area, but I'm sure that will get better over the next week. We took the bandage off on Wednesday night and the site looks really healthy, although the incision is rather large, which explains the slower than expected healing. We can take off the steri-strips and give a bath this upcoming Thursday, but until then we do showers and spot clean the area. It's tender so he's very cautious when I come at him to clean it up. His skin is a bit aggravated around it too from the bandage, but that's all small things that should be better next week.

Brady said he's happy to have his bus-riding buddy back tomorrow :)

First night with the bandage off.

A smile!

It was slow but he got by himself on Thursday!

Friday he was able to get down to the ground by himself - pretty proud here on the way to the chiropractor.

Walking around like it's his job and checking out the piggies.

Treats from the Bonins that have yummy.

Brady brought home some homework for Jax.

Signs of feeling better on Saturday. I stripped the beds and found this crazy contraption. Jax of course didn't jump, but he sure had Brady do it!

Spooning with an iPad!

Wednesday, November 11, 2015

On The Mend

The surgery went well, and so did the post-op. We were able to go home that evening since we know how to use the tube to hydrate overnight. I've been giving Jax a combo of Tylenol and Ibuprofen for the fist 48 hrs and we were able to avoid having to use the liquid oxy since that would slow down his gut and cause some issues, so I'm thankful for that!

Jax is doing ok with recovery without any actual complications, but he certainly has a lot of trouble moving. He's very happy just staying put and wouldn't eat or move if not pushed. He broke my heart when waking up Tuesday morning and crying that he "wished he was Brady". Ugh. This morning he woke up crying knowing he wasn't getting better fast enough to go to school at all this week.

I've cut the Tylenol out and have him just on Ibuprofen and pushing now for him to eat his 3 meals and only use the tube at night, so he definitely is progressing... even if it does take a lot of motivation :)

I'm really hoping that he'll progress rapidly now after these past two days have been pretty slow and painful for him. Tonight we take his bandage off the wound where his original tube was and he'll finally get a shower. I'm anxious to see it, but more anxious for Jax's reaction. So far, he's very upset at the thought of looking at the area. He can't have a bath until Monday and the steri-strip removal, so I suspect he won't be really looking at it until then. I just wish we could fast forward a week to get him past this tough part. It's heart breaking, but I know this will pass.

Brady got special permission to be in pre-op.

Some last paper-rock-scissors competitions before Jax goes back.

Post-op snooze

12 hours and we were outta there.

Any time we mention "get up", we are met with THIS face.

Sunday, November 8, 2015

Ready or not

This past week has flown by. I'm really ready for this surgery tomorrow to over and done with since my anxiety about it all has really creeped up the last few days. I'm totally on edge, but hide it from Jax. I have everything set, including some clear juice to syringe into his belly with an early alarm for myself to make sure his blood sugar doesn't plummet with the fasting before surgery.

I will do my best to update ASAP, but we are planning on a smooth surgery, recovery and to be home quickly.

I love buying from other Moms of special medical needs children. I bought special tube-pads from this woman to surprise Jax with and asked for a rush since the surgery was scheduled so soon. She sent this note with the receipt. So kind...

Jay chilling' and eating his dinner last weekend during the Packer game.

Brady helping out with grilled cheese sandwiches.

A memory of Jax with the original tube on its final day.

The boys loving their dessert.

Who doesn't dance in the aisles when they find a cheese head hat?

Packer blanket and fun tube-covers to surprise Jax with.
Food Pack for hungry people in El Salvador at our church on Saturday.

Each bag feeds a family of SIX! The final total was 103, 487 bags of food, wow!

Sunday, November 1, 2015

Plans are set

The boys have been super hyped up for Halloween week, which is tons of excitement. They had a Halloween parade and party at their school, which I hosted in Jax's classroom (and I'll do the Christmas one in Brady's). Thankfully, the boys are still at an age where they LOVE having me at school :)
On Thursday, we attended Jax's surgery consult with the same surgeon Jax had almost exactly 7 years ago at 4 months old. The doc said the prolapse was the worst he's seen, but he understood why we waited so long in hopes to just be done with the tube. He has such a great bedside manner and was very 'soft' with telling us that the GI-notes did indicate many years of tube-need, so he took a lot of time with Jason and I going over our "options" of how to do the two procedures.

Ultimately, the plan will be for the doc to clean up the prolapse and close the current tube-site. He had mentioned that it's grown close to the ribcage with 7 years of growing, so a future surgery would've been necessary sooner or later. The new tube will most likely be a couple inches below the current one. The doc mentioned going telescopically through the belly button to place it.

I was a little shocked to hear it would take about 2 hours to do, but I guess when you're dealing with closing up a site and placing another one, it poses more time needed. I asked the doc if we were able to go home the same day since we're tubie-veterans and he said to plan to stay at least one night. There is a 10% chance they'd let us leave that night if Jax is responding perfectly to pain management and no lung/gut issues 12 hrs after - only because we are veterans and have all the equipment already at home. So, I'll pack a bag for Jax and I and tell him we are staying so he knows what to expect.

We did find out that he has a 90% chance of getting a button placed instead of a peg-tube, like he first did as a tiny baby, so that gave me tons of relief. The sad part of the meeting was Jax's reaction to the doctor when he was laying on the table during the evaluation. The doctor showed us all what was going to happen to his stomach and Jax covered his face with tears and yelled out "I don't want it!".
This is so hard. He doesn't want it, we don't want it and I wish SO badly I could've made this journey end for him, but I can't. Jax is such a tough little cookie, but he's still a human. And a young boy who just wants to be a kid. We just need to get through this, so we can get back to a place of acceptance that our 'crazy normal' will continue to be. I think I always had it in my mind that if he got rid of the tube, he'd suddenly just not be medically fragile anymore. But when I really think about it... he's nowhere near that status. Of course he needs this, and I'm thankful we have this to keep the kiddo going. But... still. We all just need that mourning period of what we thought life would be like at this point and forge through.

Surgery is scheduled for Nov 9, so it's only a week away. I've started to think of some things that could make this easier on Jax. We've always used plain white tube pads through the years, so I've ordered some fun character pads of Minions and Star Wars. I figure that will make him excited to put them on the 'new tube'. I'm also making him a GB Packers fleece blanket. I'll bring them with and surprise him when we're in pre-op with these things. I'm making Brady a blanket too, and will have it as a surprise to him waiting on his for him on surgery day.

Oddly, Brady has a ENT checkup on his ear tube the same morning as surgery. So, we decided to just bring Brady with us on surgery morning so he can see Jax off to surgery. Then Jay will bring him upstairs to his ENT checkup and then he'll be off to school for the rest of the day. Brady was very concerned if he could "be there" with Jax, so this kind of solves that. Brady can come back after school to do a book reading with Jax, have some "dinner" and go home with Daddy, while I stay with Jax. Hopefully everything goes well with the surgery and we can move on quickly from all this!

In other news, but still in the tummy trouble category, Brady was up vomiting from midnight to 8am the night before Halloween, but then totally fine by dinner time. He decided to trick-or-treat and had a great time! We were hoping it was because he had a really bad eating day of sugar and junk on Friday. Now, suddenly Sunday night he said his stomach hurts again and was really uncomfortable and didn't leave my side, so I'm wondering if we'll have another night of vomiting?? Poor buddy... I feel awful for him, but can't help to be nervous Jax will catch this if it's a bug... it will be such a different protocol if it's Jax :(

This little godson turned ONE and one of my goddaughters turned FIVE this week.

Lovin' up on Big B

Jax's first grade Halloween group

Jax walking in his parade

Big B was DOWN! 

Good times!

Dynamic Duo coming at ya!


Wednesday, October 21, 2015

"Sometimes, life hands us a PAUSE button"

"We fill ourselves with busyness to distract from the painful beliefs buried deep within that we are too afraid to address.

And then sometimes, life hands us a pause button—a shift or change that wasn’t in our own expertly controlled plan. In other words, we are woken up, finally fully aware of the whole of our life’s present experience; for better or worse.

Though it often presents as an obstacle or a struggle, it is usually an opportunity to realign with our soul’s path if we are willing to surrender, be open, and listen."   -Jadi Engels via Divine Burnour: A signal from the Universe

That quote can probably speak to everyone at different times in their lives. It struck me this past week for a few reasons.

Jason and I had a few conversations this month about Jax and his g-tube. We had been on a journey and a path to get him weaned off of it and to become tube-free. We've supported him in every possible way we knew how to. He's been in inpatient feeding therapy, quarterly feeding team meetings, weekly private feeding therapy, hunger-inducing medication, nightly hGH injections and tube-feedings.
Well.. here we are, past the age of 7, and he still struggles to eat. He just doesn't experience hunger the way the rest of us do. He also dehydrates easily during illness... so, we oddly had one of those talks recently about how we're not 'actually weaning' Jax off his tube. I feel like we're living with the tube as part of our lives and not actually trying to get rid of it, like we felt when Jax was 4 and coming out of his inpatient feeding therapy.

Jax had a GI specialist and dietician followup last week. He is growing nicely and looks to be skimming the bottom of the height chart finally after more than two years of injections! We'll know for sure at the Endocrinologist appointment in December. Jax's weight is up to 39 lbs now, which is great, but it's of course, not great. He requires MORE calories, which most likely will be added to his night feeding at almost 20oz now. That feels a bit like a step backwards since Jax is already at capacity at what he'll consume at a meal. The more food we can get in him, the better the growth hormone will work and the more he GROWS, the healthier he'll be, and less chance for emergencies have a chance to happen.

The doc examined his tube-site and sat me down for a "talk". We've been holding off on fixing up Jax's tube-site with all the prolapse coming out, because we were always 'weaning' him off it. Well... the doc had one of those "come-to-Jesus" talks with me, to tell me what I already knew in my heart, but had refused to actually accept. Jax isn't coming off the tube anytime soon. The doc said he won't know a childhood without it, and that puberty may really help. He also said that if somehow Jax suddenly started to eat all his calories, they would never allow the tube to come out until after two to three full winters of illness without ever using it. 
Hearing it out loud is a knife to a mom's heart. No one wants that for their child. Especially a child who has been telling us lately that he doesn't want it and doesn't want friends to know. The doc then went on about how we have to get Jax into surgery to close up the current tube-site and put a new one in a different area of his stomach.

That damn PAUSE button was pushed. Time to reassess our goals.

It took me a couple days at home to pull together what to say to Jax since it needed to be positive... imagine having THAT conversation with your little one.
Jay and I sat on Jax's bed last weekend and I was pretty 'matter of fact' about it. He never looked up at us as he played with a Legoman. Brady kept interjecting questions, mainly asking if he'd be at the hospital during the surgery. Jax finally asked a couple simple questions, mainly asking if he'd have 3 belly buttons now and things like that. He suddenly looked at the clock and started to SOB telling us we were wasting his time and that he needed to read.
We could tell that he was upset and trying to process this new news. He's been ok since and we try to talk about it off and on when we can so the subject matter seems as matter-of-fact as possible and that he can ask questions. We collected a few that we said I'd ask the surgeon during his consult next week Thursday. I assume the surgery will be done in November. I'm sure we'll find out during the consult. This is the same surgeon who placed Jax's tube when he was four months old - how crazy is that?

The doc and I also discussed how Jax still has no hunger and struggles with fine motor skills, low muscle tone and growth. There is a possibility that he has Russell-Silver Syndrome, so we are going through the process of testing for this. Right now we are waiting on pre-approval from insurance to pursue the genetic testing part of this syndrome, which may take a long time. Only 60% of RSS patients have a genetic blood result resulting in a diagnosis, so it may be a clinical evaluation with the specialists. If you read up about the disorder, Jax definitely fits a lot of the symptoms, but not all of them. He does have 3 of the 4 main symptoms and many of the secondary symptoms. As with most disorders, everyone has varying degrees of it, so that's why people of all ages go undiagnosed with various ailments for years I guess.

I've found so many identical-twin-parents on my SGA support site through the MAGIC Foundation suggested from the Endocrinologist, who has one twin with this disorder. Apparently, blood flow variations in pregnancy cause the epigenics responsible for this disorder, so it's definitely a possibility and why it would be an issue for identical twins more than fraternal since fraternal have all their own blood sources.
The good news, is that if Jax does have this, it's really nothing more than an ANSWER since he already gets the 'treatment' for it. Which is hGH injections and tube-feedings. An answer would be nice as to why Jax is so different from Brady medically, facially and muscle-wise, and it would also give him a better protocol for hypoglycemia-issues with fasting/surgies/illness etc. (Which Jax proved to us this year is a problem for him). The only tough-news about it, would be that we wouldn't have our sudden-miracle of no issues. But hey, after all these years, if this is the answer compared to other possibilities, we'll take it.
But no matter what I say, do or read, he either has it, or he doesn't and I have no power over that. We shall see, and of course I'll update as steps occur.

When looking at their facial differences, it's definitely Jax's triangular features that creates the most differences. Who knows tho...

The other PAUSE button was pushed for me last week when I showed up to a meeting with my director and found out my position was being eliminated, the next day. I worked in a very small division, and they can't afford the luxury of an 'Operations Manager' any longer and every position has to bring in sales. My director was very upset, and I worry how they'll get by, but such is life I guess.
This really bummed me out since I really did enjoy my job and it worked out great for our home-life, for the most part. I was having a little trouble helping with the kid's homework and making home cooked meals, but it was working out most of the time.
Thankfully, I've been given a severance through most of November and then there's always unemployment.

Jay and I assessed everything this weekend, and his support has definitely made it easier on me. I've come to believe this PAUSE button initially felt like what the last sentence in that quote above states. It felt like an unwanted obstacle and struggle, but in the end, this isn't bad for my family right now. I'm going to focus back on the kids, get through this surgery and the healing process for Jax, help them out again at school in the classroom, help Jason out with some big needs for his career and get through the holidays. I'll remain an Independent Contractor and do project-work on the side, and that's all I'm going to put on my expectations for awhile.

Preview to Brady's Halloween costume...

Jax was SO excited about our special lunch before his appointment. He said he's never been inside a McDonald's before. Huh.. he may be right! Brady and I always went out to lunches while Jax was in feeding therapy through the years... this kid has only had drive thru treats!

The culprit...

Brady is such a hipster in contrast to Jax. Jax prefers all-american sports theme and Brady just wants to look like he came out of Colorado. I did not pick or put his hat on - that's all him. I'm waiting for him to ask for real guitar lessons any day now.

Great Grandma's 79th birthday celebration.

The boys with cousin Ellie. She just turned 4 and is catching up to Jax!

He can still ride a mean Big Wheel like nobody's business...

Jax was my pumpkin-picking buddy after church.

Brady busting out a book assignment after school.

We love to dive into pie after dinner most nights now that it's PIE season!

Wouldn't ya know it... Jax has another STY in his eye! Let's try to stay away from Cellulitis this time buddy! (sigh)

Tuesday, October 13, 2015

I pressed "PUBLISH" this time...

Have you ever gone to text a friend and realize that the last text you wrote them didn't post? Yeah, I just did that today with my blog! For some reason I hit SAVE and not PUBLISH on my post from last week!
Well, it was short and sweet anyway. Ce la vie!

We're still trucking along here. The boys are loving school. I can tell already that it will still be a challenge this year for them to remember all their belongings when they come home each day. I'm dreading all the extra outerwear they'll have to account for soon.
The kids are still loving Sunday school and Jay signed the up for winter basketball. I really wanted them in swimming over the fall and winter, but the fall league was filled. I don't think they can handle swimming and basketball at the same time as school - during cold/flu season - so we'll see when swimming can be added.

We had family photos done last weekend, and crazy enough, got them back already. Wow, that makes my holiday card and picture orders easier to accomplish ahead of time at leisure.

Jax has a follow-up with his new GI Specialist and dietician tomorrow. He'll have his stoma reviewed to see if we can just continue to leave it with all the prolapse still sticking out. Also, he needs a weight check with the dietician. I think he's gaining weight, but his muscle tone is low, so he always seems gaunt to me. 

He was really struggling to eat again lately, so we put him on his hunger-inducing meds for the past two weeks and it worked nicely. He's on his week-off right now, so we're hoping it's not total non-stop lectures to eat again. 

He sees the Endocrinologist in two months for his end-of-year checkup and I'm really interested to talk to the doc about some suspicions I've had. Or more like, a curiosity to a particular disorder that may or may not pertain to Jax. We're still going on the fact that all his issues are due to being a mono/mono twin who had his blood flow cut off resulting in being underdeveloped. I get that... but we're at 7 years old and he's still uninterested in food. I don't know, maybe that's normal. There's not a ton of research that dates back too far since tube-kids never used to walk among us and live normal lives and actually come off them, so this is all rather 'new' pediatric  ground to tread. 
I also know I'm having the dreaded 'helicopter medical mama' creep back in with cold/flu season swinging back around. I was doing great until the "incident" last January happened - gah, it makes me itchy thinking about it.

Brady is doing well, and getting better each day with his speech. He still has to trip through sentences and sometimes he'll get stuck on a word and try to say it over and over and over and then suddenly give up. We have to push him to go ahead and keep trying. We definitely still have times when it takes quite awhile to know what word he's trying to say, especially as his language matures and the words aren't as common, but there's always improvement. 

He asked me once why it's so hard for him to talk and I said that sometimes there's no 'reason' for good or bad things that happen like that. We all have to live with the hand we're dealt, so what really matters is how we deal with it. I told him everyone has a challenge, you just can't always see it. One day it won't be a challenge anymore, but he will have learned a valuable lesson on how to overcome challenges. He smiled, but I know he still thought it was a bum deal :) Yes buddy, it is, but he has no idea how blessed he was with that fabulous little FACE - he steals my heart...

The boys have been reading full books to me a lot lately - so fun!

Let's stop what we're doing and pet this fuzzy caterpillar! Then move it to safety.

Fun pjs from the neighbor boys who grew out of them!

Making some Lego People with Daddy as a reward for some good behavior when we had a full day of errands.

While Jay and I were watching the Packer game, I heard the boys playing out a scene in full characters.

This was the first time Jax let us spray whipped cream in his mouth! He was very cautious but got some!

This is hard to see, but one day after school I heard the boys talking about numbers. Turns out that Brady was helping Jax do one of his math homework lessons on the iPad. Too cute. Brady has exceeded his homework for this program by about 3 months (he is so organized and timely) but Jax needs 'reminders' to do it.

Brady seems to be growing up before my eyes this fall. He went upstairs after school one day and closed his bedroom door. After 15 minutes I wondered what he was doing. I found him under his covers reading by the light of his light saber.... he told me he needed privacy.

One more house project complete - new doors! No more ice coming in this year!

Once again, I find Brady reading his magazines and eating popcorn.. it's like he's going 13.

The boys dancing at their PTO Sock Hop.

Playing games