Tuesday, August 27, 2013

EGD Complete

Jax's EGD went well today, he is such a little trooper. The GI specialist gave me a print out of pictures from Jax's scope. It all looked good and healthy without any damage or evidence of obvious issues. We were a bit worried he had some damage from all the vomiting.

They took tissue samples that will take about a week to process. The doc said it's not uncommon to have positive test results for something even with a good looking scope, but it's not as likely either. So, I have my hopes up for a bunch of negative tests and that Jax will be labeled as a 'puker'. The doc said he has a few ex-preemie patients who are slowly growing out of being 'pukers', so if that is the case, then he will most likely (hopefully) just continue to get better the bigger he gets. Although there are some options the doc will discuss with us to explore if this is indeed the case. Can you tell I really plan on this being the case??

One interesting fact of the day was Jax's height and weight. Now I know that all scales are different, so I always take it with a grain of salt, but Jax shows a 1/2" height, and 2 lb gain from 6 weeks ago. Um...??? That's crazy. I could see a half pound or cm or something, so I'm VERY interested to see how he fares at the GI/Feeding clinic scale for real comparison. The doc and I agreed that he actually does LOOK better than he really ever has (since 12 months old when actually chubby and fed directly into the intestines).

So I wonder... could hGH really have done something in just 2 weeks? Seems a bit far fetched, right? Huh...

Getting ready in pre-op and being very brave.

Rachel and Brady in the toy area of the waiting room.

Jax post op and doing pretty well.

I had to test 3 ounces of Pedialyte through his tube to see if he could tolerate it to go home home.

Sunday, August 25, 2013

hGH is the Sandman?!

The hGH injections are going well. Jax no longer gets scared or requires to be held down. He now points out the place and sits nicely while counting. It helps reduce the parent-guilt when he doesn't seem to mind it.
We've discovered one benefit to it already.
Jax sleeps 1-2 hrs longer in the morning since starting it. Brady always required more sleep than Jax, but since they moved into the same room together last year, Brady has been woken up by Jax each morning when he gets up, so he's been losing sleep. Now Brady gets that extra sleep in the morning, and Jax is getting more rest. I did a quick search online if this may have just been a coincidence, and it seems that it's not. There are tons of reports that it gives longer deeper sleep cycles necessary for growth. Their bedtime is around 7:30pm. They were getting up anywhere between 6:00-7:00am, sometimes a random 5:30am would get thrown in. Now they sleep until about 7:00am-8:00am depending on the day's activities. If they go to bed later, they actually sleep later, where in the past, Jax was up at the same time no matter what time going down. He also fell asleep in the CAR when driving home late during his bedtime last weekend from Green Bay, say what now? It's lovely!!

We've had a lot of activities over the past few days. I took the boys swimming Friday afternoon, and then Jason took them to a local high school football game that night. They got haircuts and some school clothes shopping in on Saturday after the boys played at the YMCA. They then got to play and watch a fun singer at a party on Sunday.

Jax's chewing is still coming along. He has good days and bad days of course, but at least he now chews at least a few pieces of 'something' before starting his puree/milk meal. He still requires to have his mouth desensitized before chewing to prep him for it, but he has started practicing on fruit (peeled/sliced grape, raspberry, peaches, pears), so he's moving forward. Tonight he had 4 Coco Puffs, and he did great until the last puff. He gagged and puked at the end (sigh), but he had decent confidence and good crunches.

Jax has his EGD procedure on Tuesday morning, so send out some good thoughts/prayers that it all goes smoothly and we don't get any bad reports/results from the biopsies. I'll update Tuesday evening with how it all went.

This is a typical sampling of things Jax uses in feeding therapy. We have at least 10 boxes of different cereals all the time now to explore different shapes, tastes and textures. Brady is loving it! Here we have Trix, Lucky Charms, Cliff's Kids granola bar, Goldfish crackers, Gerber cheese puffs, Angry Bird Graham crackers, Chex, Cheerios, Fresh Fruit and some Jello.

Oliva and Brady at the 'End-of-Summer/Birthday' party.

Jax did a photo-bomb!

New friends

An awesome singer/performer named Magic Mama!

The kids LOVED playing instruments and singing along.

Brady barely left the drums.

The boys digging for 'treasures' in the yard.

Jaxon and that tongue!

I took the boys to the pool on Friday. The boys discovered GOGGLES.

Monday, August 19, 2013

Health is a Blessing

We've had a busy weekend, and yet found some decent downtime at home on Sunday. We picked up my cousin from the airport on Saturday and headed up to Green Bay to see my grandma. She's sadly been diagnosed with Multiple Myeloma this week, so we all wanted to see her and be together on Saturday. We'll find out next week (the day of Jax's EGD) how advanced the cancer is, and the plan of treatment. For now, she's in a nursing home trying to recoup from the recent bout of illness she's had. It's definitely been a rough year for the family. Send good thoughts for grandma please!

I created this 'injection site schedule' and taped it to the inside cover of our supply bin. It's to help ensure we properly move Jax's injection sites without any miscommunication. Yes, these things help me sleep better at night!

My Aunt Janet and cousin Alyssa came into town on Saturday. Here are all of Grandma's girls together - a rare treat!

I 'caught' Jax holding his crayon correctly all by himself when we were at the chiropractor's office! He didn't have enough pressure when trying to write this way, but it's a great first step!

The boys with my aunt and cousin snuggling on the floor at my mom's apartment during the Packer game.

Jay and the boys playing some beach football.

Brady looks good with the perfect Heisman pose!

Brady and I goofing around.

Jax got brave and took his swim shirt off for awhile. He loves to show his MUSCLES! He had to put a shirt back on since we didn't want sand in his g-tube site.

Silly boys showing their muscles.

I typically do the shopping, but just look at this REAL MAN pushing the kids and grocery cart! We checked out the new Woodman's grocery store in our area, and it's HUGE! Totally intimidating!

Wednesday, August 14, 2013

hGH Treatment is Underway

Tonight is the first night we'll be administering Jax's growth hormone at home. We picked up the drugs at the hospital pharmacy and made our way to the training session we had set up with our Endo-nurse yesterday. She was so informative and patient, that I left feeling confident in our abilities to do this.

I was up all night prior worrying about this scenario, or that scenario and of course feeling guilty that we were putting Jax through this. Mommy-guilt is a KILLER isn't it? I was okay in the training until we were shown the diagram of 'places to administer the injection'. ODD right? For some reason my head said, "woah, this just got real up in here" and I felt light headed. I also never thought we'd SEE a needle and that it was covered within the pen device, so that threw me off too.

The nurse made us feel at ease about everything with all her years of experience and knowledge about the drug, possible side effects (extremely minimal), administration and the schedule. I was very worried about how we could ever possibly leave Jax again after he's come so far of even using babysitters. The 'timing' of administration by us can be moved easily for us to be gone almost two days if need be. I always get scenarios playing out in my head that we can't get home and no one can care for Jax. Yeah, I'm that guy.

The boys played nicely while we were trained and talked with the nurse. When it came time to give Jax the injection, he was fine until I held him in my lap with a bear hug and Jay swiped his arm with the alcohol wipe. Then he was scared and knew that was the universal sign for SHOT. He squirmed while I held him, and Jay pinched the little bit of fat he could find, and as soon as he injected the needle, Jax stopped squirming and counted to 6 with us and that was that. He said it didn't hurt.

The nurse said it will take 1-2 weeks for his anxiety to cease before he isn't scared of it, but from what she saw, she thinks he'll do well with it. She said little girls are much more resistant and fight back much harder (parents get black eyes! heck, I think I'd kick someone too!). Tonight is our first night doing it, so we'll seeeeeee.... eek. We call it the 'GROWING MEDICINE' and we're going to put Jax's height on the chart with a new color marker so he can be interactive in the process.

All I want to do is plan a Disney Vacation for these boys after weeks like this...

So, here are photos of the supplies with detailed explanations for those who have been contacting me with questions:

These are all the supplies and welcome kit from the pharmaceutical company. The backpack came filled with a lot of the things here, but is 'just a backpack' at the end of the day which isn't medically necessary for the process.

This container holds the active pen while it's in the refrigerator.

This cooler holds the pen case securely with two ice packs that can be frozen.

I put this together so I have everything in one place. I just grab this container with the handy handle and the pen out of the fridge. I have alcohol wipes, needles, cotton swabs and the sharps-container.

This is what the pen looks like with the cap off and a needle in its package. The pen gets a new needle with each use.
Here the needle is screwed on with the caps still in place.

The cap is removed, and the dial would be used to set the dosage. The dosage will go up with weight gain. We see the Endocrinologist every 6 months for followups.

The 32 gauge needle up close.

This is how I store the daily meds in the kitchen. The top bin is the asthma inhalers, allergy sprays etc for each morning, then the bottom bin is the hGH supplies and Jax's feeding pump at the top charging for when not in use. You should all see my laundry/supply room for all the 'extra' stuff. Oy, that's my project to go through in Sept. I want one bin each for feeding, asthma and hGH and that's it!

Wednesday, August 7, 2013

Real Men get Pedis

This is what happens when your husband is out of town and you NEED (because that's what it feels like) a manicure before you leave for a trip...

Yes, I had a double date with the boys at the nail shop yesterday and they were actually pretty good! Huh. I never thought to bring my kids, and I don't plan to make it a habit, but they played video games and talked to the customers, which was pretty cute. Good thing this place knows me by name :)

Jay and I are going to Las Vegas for the weekend (my birthday weekend) with our neighbors. It should be a nice little getaway. The remainder of August is jammed pack with school/bus/nurse prepping, an EGD procedure, hGH training and planning, brace adjustment and the boy's 4k open house and photos. Hmmm, I need to shop for back-to-school clothes in there!

Have a great week/weekend everyone!

Sunday, August 4, 2013

State Fair Time!

It's State Fair time! We spent the day eating things on sticks, drinking 'beer floats' and actually spending some time in the 'carnival' area of the fair now that the boys can go on some rides. The boys love the fair so much and we had a blast!

A shot of Papa Lettenberger and all the kids playing ball from a couple weekends ago.

Nana Jayne and the boys.

The boys having some fun at Children's Hospital last Thursday.

Brady flying a kite!

Fun in the yard with kites.

This is what happens when you run into a tree while watching your kite...

The boys petting a cow at the State Fair.

Aaaand checking out the butt...

Fishing for a 'Minion' prize!

On a ride with Janel!

About to go into a Haunted House!

We think Brady will think twice before asking for the Haunted House again ;)