Wednesday, February 29, 2012

Icky Fever

Big B was up last night with what we thought were night terrors. He kept crying out, but when we'd go in by him, he wouldn't open his eyes. This morning he spiked a small fever and refused breakfast. I gave him some Tylenol and after a half hour, he was running circles around the house.

He didn't want much to do with lunch, but ate a granola bar and took a 2.5 hour nap. By this point, his fever hit over 102 and he decided the couch was a good spot to lay for the rest of the afternoon with an apple, some flavored Pedialyte (which he thinks is juice) and some more Tylenol. He was back to playing once it all kicked in. He sounds slightly like Darth Vader when he's sleeping.

I'm hoping this is just one of those fever-bugs and it's nothing bigger. I have a ragging headache, but it may be because I've been starring at a scrolling computer screen for work. I'm going to bed now (hello 9:30pm!) to try and purge it. If poor Brady's head hurt like this, I feel bad for my little peanut!

Jax has been fine, although he's doing this crazy weird "start-of-the-meal-puke" thing that has me annoyed. Yes, I said annoyed. I literally leave him in a white t-shirt and give him a sip and then wait for him to puke. I have it down to a science now of how to best clean up and have the puke minimally hit things. After he pukes, he drinks and eats like a champ. It's so odd. We didn't have to do any time-outs again today, which is awesome! I'd just really like for him to stop the early heaves. I can't put out the puke rags or a bucket, because that's a "symbol" to him to puke, so the docs said to just let him do it and deal with it later. Well, that gets gross, so I try to have my rags in my lap and have cat-like reflexes to catch things. I fully impressed Jason this morning ;)

I did notice that his lips were more chapped than normal even with his humidifier running all night, so that's a sign to me that he's not getting enough fluid. I syringed in an ounce of water immediately after each meal tonight to try and help with that. I figure 5 extra ounces could help a bit.

I hate using his tube during the day... it feels like a set back, but I guess my "feelings" aren't as important as his physical health and can't push him.

Tuesday, February 28, 2012

Benefit on Sunday!

The kids had a great time yesterday with Marshal and Cecelia. The kids just ran around like lunatics, wrestled, played air hockey, Hungry Hippos and pulled CeCe around like a princess on a scooter.
I spoke with Jax's doctor about everything, and we both feel comfortable waiting for his scheduled appointment with the full team on Monday.
Jax is doing better with food. He still doesn't like to drink a lot, but it seems to be working out. I didn't have to put him in time-out at all since yesterday, but he is doing a puke for about half the feeds now, and I do think some of it is behavioral. So we'll be working on with the doctors.

I can't imagine that Jax gained any weight at all since coming home from the hospital, so I'm kinda cringing at the thought of what that scale will end up saying.

I'm waiting for a call back from the school district to discuss services for the boys at the age of 4 next fall, but not going forward with 4K. I have no idea how we will work it out, but I hope they understand why I (and all the therapists and teachers) believe the boys need an extra year. This wouldn't be a big deal if they weren't using the special-ed services from the school district.

The rest of the week is pretty standard. Jason is out of town until Friday and I have stacks up to the ceiling of work to process that will keep me busy each night and stolen moments during the day. Jax will see the chiropractor for the first time in a month tomorrow. Then the boys have speech/feeding on Thursday and school Friday morning. Let's hope for a quick and non-eventful rest of the week!

CeCe put on the boy's dino costume and then chased them around!

Mars and the boys wrestling.

Good ole' air hockey

We told the kids to pose for a photo and Cecelia laid out like a queen!

Awe... hugs good bye!
This is a benefit for Children's Hospital of WI happening on Sunday. Jason and I will be there with the kids, and I will be speaking around 2pm to help raise money. I've always wanted to take the boys to an Irish bar in the month of March ;)

Monday, February 27, 2012

I'm back!

I had a nice weekend getaway with some great friends.
Jason was on daddy-duty and had some frustrations with Jaxon's lack of eating. I tell you, it IS maddening. I guess Jax completely refused his milk and started to puke it up every time Jason gave it to him. He called our feeding psychologist and had a conference with the dietitian as well. They assured him that this is all normal and expected.
Jax seems sick of the milk and it's gagging him, so now we push his food first and only sips of his milk or a yogurt smoothie. Since doing that, Jax has been taking about 6oz of food and a little fluid each meal.
I have a call into the psychologist to talk it all over with her today and possibly bring Jax in earlier this week. He has a scheduled feeding team evaluation on next Monday, but he may need to be seen sooner - we'll see.
Jason took the boys to the neighbor's house Friday night to play with their friends and Jason was able to see other adults. They all wanted to hear about Jax's feeding progress and it was our neighbor's birthday.
On Saturday, he did a Target-run to stock up on some new Spiderman figures to make feeding a little easier with bribes. Jason's parents came to see the boys, and Jason was able to sneak out for some cocktails with friends for a couple hours that night when the kids were in bed. *Do you notice he may realize why I need breaks too?? HA!
On Sunday, Jay was able to hit the grocery store with the boys and they all went to the gym before getting me at the airport.
I missed the boys even though it was just a couple days! It's nice to be home and back to our routine. My friend Valerie is coming over with her twins this afternoon for a play date for the kids, so the boys will be really excited about that.
I'll update tomorrow and attach some photos. I don't have any of the boys from the weekend since I had the camera with me in Rhode Island.
I hope you all had a great weekend!

Wednesday, February 22, 2012

Hangin' in there

Ahh yes, I've had quite the week of feeding Jax. There have been many time outs and many stand offs. It was nice to watch Jason feed Jax tonight, but he was able to definitely get more food in him than I've been able to do. It's interesting because Jax whines and reaches for me if I sit at the table and eat and am not feeding him. I think he really has that "comfort" relationship with me, so maybe that's why I'm having the hardest time disciplining him through eating. I will say, "Jax, if you don't drink your milk by the time I count to three.." and he interrupts, "or time out". Um, yes.
I may need to find something else because he never even whines when I pick him up to take upstairs. He doesn't make a PEEP while laying on his bed. It's so odd!
If Brady is naughty and I tell him to go to his room, he'll get a sad face and whimper and stomp all the way up to his room and throw himself on the bed very dramatically. They are SO different!

Otherwise the boys have been good. Jax didn't miss a beat at school on Tuesday and the teacher said he took a few bites of pudding and some milk during snack time, so that is cool. Jax sees his usual feeding therapist tomorrow and he plans to show off his skills.

I received an awesome package with a few tubs of Carnation Instant Breakfast today! Whoever you are, THANK YOU! There was no name on the package, so I don't know who to thank - that was so kind, thoughtful and sweet.

I will be gone through Sunday, so there will be a break here until Monday. Enjoy your weekend and send Jason some vibes of patience!

I found this while dusting the dining room yesterday. Yup, one of the boys (I'm assuming Brady) took a bottle of champagne off the wine rack, set it on a small table, and proceeded to try and OPEN it. Precious.

Jaxon earned a game on the pod for eating breakfast. He is watching Spiderman dance and Brady got his action figure to copy it dancing. You can also see here how much bigger Brady is getting than my little Jax-man.

Monday, February 20, 2012

Improvement

I was tough on Jax last night and he knew I meant business. I no longer deal with turning him toward the corner/wall and instead I count to three. If he doesn't do what I ask, he takes a time out upstairs. He's been doing pretty well for me today and took his goal-amount for milk. Now I need to get him to take more bites of food (which are just added "bonus" calories for now).
He really seemed to like my puree'd PB&J sandwhich! It's just a piece of bread, peanut butter, jelly, milk and butter. Otherwise he eats an entire yogurt and pudding without issues, but I just need to push more real food.
Jax goes back to school tomorrow for the first time in weeks. I know he'll be so excited to see them all, but I definitely dread the thought of all the sickie germs coming back around.
Otherwise, things are looking promising that we CAN do this at home and keep it up!

Sunday, February 19, 2012

This is hard,

I'm not going to lie!

I know we're supposed to be breaking Jax in like you do a horse. We're supposed to stay the course and ignore everything negative that he does. He's supposed to just start to want food at some point, I know this. But wow, it's hard!

Jax has puked each day, and that puke is NASTY. It's hard to not jump up without a reaction or comfort him, even when you know he's gagging on the texture. Which is a whole other thing... me making his food. I'm making extra each time to make my life easier in the future, but for now, it's a lot of prepping. I'm also realizing that Jax needs food to be of a pudding consistency and anything more results in choking and gagging and of course, puke.

We've had standoffs, sitting in the corner looking at the wall, time outs alone up in bed and straight out yelling moments. The yelling moments have to end, I know that. We need to stay emotionless, but it's SO HARD when you know he's not taking even half of what he's supposed to, or if we're in the feed for 15 minutes and he hasn't even finished an ounce of milk. GAH!

We're learning as we go. Of course Jax ate like a champion when I pulled out a new Spiderman action hero to play with - so he.can.do.it. Today he refused a lot of his breakfast and I was about to pull my hair out. Jason took over the snack and Jax took an entire meal portion... then he continued to eat well for Jason today. Jason calls himself the "Food-Whisperer". So Jax works better with Jason and acts up for me - GREAT!

Jason left tonight for a 2-day business trip, so Jax and I have to figure this out. I just can't wait for Jax to want to eat like the doctors keep saying he will. My goal remains for him to gain weight and to keep the tube-feeding to once at bedtime when he gets a check up in two weeks. I admit, the no backpack during the day is awesome! Oh, and Jax is learning how to burp, it's quite funny.
I know this will get better, and the child just ate the first meal of his life less than two weeks ago, so in that respect, he's doing great. I know. It's so hard to not get instant gratification with him just asking to eat. I'm so happy we're getting the bulk of this done during these winter months where we are at home so much and can really focus on it.

So the boys are doing the cutest thing lately. They're singing the Spiderman theme song from the 1960's show (thank you Netflix). Jax can say a few of the words, so it's just adorable, whereas Brady can't really say any of the words, so he makes up his own words to the tune - I MUST GET THIS ON VIDEO! These are the moments I want to put in my pocket forever!

*Oh, and I was using Nesquik powder (Strawberry and Chocolate flavors) rather than the standard syrup because it didn't contain HFCS and is so much healthier. Well, I found that Carnation Instant Breakfast now comes in the same 1lb container for easier use and it's SO much healthier with triple the calories. It costs more, but hey, it's still cheaper than buying flavored Pediasure in individual bottles. We're not sure how Jax would do with Pediasure since it's his "formula" that he's puked up so many times. Jax gets 1 can (8oz) of Pediasure 1.5 cal each night through his tube, so he's definitely covered with nutrition with his multi-vitamin and using the Carnation powder. I use whole milk and heavy cream as the milk base - it tastes SO good, how does he not want to slam this every day?! Brady would go crazy if he knew what it tasted like ;)

Friday, February 17, 2012

The beginning of the end

Someone said that to me yesterday when I said we were going home, and it's TRUE!

This morning definitely had a bit of anxiety for Jason and I as we were each scrambling a bit with not having Jax's supplies and looking at the piled paperwork that needed to be done for actual work.

I was able to run to the store and get the immersion blender (which ROCKS) and to the grocery store to stock up. Jax had a complete crying meltdown at the store because I wouldn't let him touch any toys. Then Brady was super naughty at the grocery store. He shot out the door and could've gotten hit by a car - PARENTING FAIL. I was soooo mad at him and scolded him pretty badly. He just gave me the sad face, but I truly do not believe I got my point across.

Jax did pretty good with food today. He definitely pushed the limits and realized real quick that neither Jason or I will be budging on any of the rules. I had to turn him to the corner during his afternoon snack once, but otherwise he complied to all our requests.

We're learning how to prep all his meals, and how to make extra to freeze to make a stock pile (read: I will have all meals ready for Jason next weekend). I took all the advice and put the extra food in an ice cube tray to store the cubes in freezer bags. Thanks, I think this is the best way to go while we work on volume.

Poor Jax gagged on my lasagna tonight since I made it too pasty. I had to re-blend with milk to make it more of a liquid. I'm learning!

It's so nice to be home, and I admit that I REALLY missed Brady. After spending so much alone time with Jax, it feels strange to hold Brady because he feels like such a bigger kid. Well, in relation to Jax, he's bigger. He's taller and just more solid, so I feel like he is suddenly turning into such a kid versus a toddler. I admit to doing a lot of stolen snuggles with him and his big noggin. I just love that bean!
I heard a loud thud today and heard Brady crying. I asked what happened and suddenly Jax says, "Uh-oh, Bubba fell dowe". I love these sentences!

So today is the beginning of the end of tube-feeding some day hopefully! I'm determined to have Jax show a nice weight gain for his appointment in a couple weeks!

The boys being... well, themselves!

Our first family dinner ALL eating.

My beautiful green beans and lasagna tray ready to freeze.

Jax peeking over Brady's shoulder watching The Little Mermaid.

Thursday, February 16, 2012

Last and final day

We came home after dinner!

I had a meeting with our doctor and the dietitian and it was agreed that we were ready to take the show home. Jason and I were each feeding the boys alone successfully and as a complete family. We went over all trouble shooting scenarios and I feel confident about it. The main key is to stay the course and never change the therapy. If we can maintain the skills we've learned and Jax has a bad feed or a bad day, he will always come back up if we don't waver.

I had to bring Jax over to the outpatient feeding clinic (it's all connected to the hospital) to get his final discharge weight and use the scale we'll be using for future appointments. Mr Beefy weighed in at 23.6 lbs, so we know where we left off.

The doctor and dietitian told me to not weigh his food, but to only keep track of his fluid intake. I need to not obsess over every meal and just stay the course. Jax goes back for a full check up from the team in 2.5 weeks. I'm going on a weekend girl trip in a week and the docs coached me into letting go of the control and letting Jason have the reigns for a few days. I'm not allowed to ask for updates from each meal and only an update from the end of each day (meal wise). Oh my gosh, that will be hard!

This is the plan for at home:

Jax gets 3 meals and 2+ snacks. He needs to consume 18 oz of the high calorie milk + whatever food he can eat within the time limit (20 mins a meal, 10 mins each snack). He will get one can of Pediasure (his formula) through his tube at bedtime. We need to also try and get an additional 8oz of water into Jax through the day. This is our plan now until Jax's stomach can start handling a larger volume in one sitting. It seems like he'll be non-stop consuming fluid, but he only takes on average of 4oz during a meal, so that's why. His tummy should start showing progress of volume tolerance as we move forward. I mean, look what he did in 2 weeks!

We are not to work on textures and remain with smooth and puree food/fluid right now. The feeding team said Jax isn't like a baby working his way up with food textures. So we will go by their lead and coaching when we want to start working our way up the texture ladder.

I received a high calorie blenderized recipe booklet. I've made my grocery list and plan to pick up an immersion blender tomorrow. I will probably prepare a bunch of meals and freeze them to have as back up. *What are the best kind of freezing containers? I'd like individual meal sizes if possible.

 Jax got one of Brady's yogurt smoothies and 5 bites of chocolate ice cream as his bedtime snack since that's what we had in the house. Tomorrow I'll give him yogurt and some stage 2 baby food to get by until I can blend up his meals.
Most of the meals are a main dish just blended with things like sour cream, whole milk, gravy or butter. It won't be "hard", but I need the ingredients, the blender and just a little bit of time.

It's always stressful coming home from the hospital with unpacking, sorting, dealing with prescriptions and new schedules. This time, the stress was simply getting settled back in, but more than anything... the schedule is SO CHANGED! Being gone longer than a week means tons of laundry, a house needing cleaning and a load of paperwork for work starring me in the face. It will all work itself out over the next few days I'm sure.

Jax only gets one tube-feeding a day at bedtime. While his meals will still be very therapeutic and take my or Jason's complete attention, it's still really AWESOME to think of Jax never having to run around with his backpack on again. It's mind blowing to be totally honest.
We are in the mix of the next step, and while it's a little hectic and will take some getting used to... we're actually in the game :)

Wednesday, February 15, 2012

Day 10

Jax's weight is pretty steady and went up .1kg (please don't ask me to translate to oz, I'm suddenly Euro with my measurements!).  He entered the program weighing 11.0 kg and is at 10.8 today, so that's a 2% weight loss, and is all pretty much expected.

Today was rough on Jax with gagging and puking. Jax is learning how to calm his gag reflex, and today was a challenge. He puked at breakfast but held it in for lunch and dinner just barely. It's so hard to watch him get so nauseous and sick when a gag is triggered. Jason and I are learning how to turn off the puke when it's about to happen, which isn't totally full-proof, but definitely helps. This isn't behavioral puke, it really is Jax getting sick from food that is either too thick, or a gritty texture, or an air bubble because he doesn't know how to make himself burp yet.

Jax was good in a behavioral sense today and did what was asked of him for each meal. He still cries going into the chair if I'm not in the room, but is calmed easily within moments.

The floor resident came in our room this afternoon and told us that Jax would get a can of formula in his fluid-feed overnight tonight. (!!) Woah, that threw me off. When I asked the doctor why, she didn't really know (she's not part of the GI feeding program). She said she assumed for weight reasons.

We asked the psychologist who we did dinner with and he was rather upset to hear this so he made some calls. The order for formula was pulled away and we're meeting with the doctors and dietitian tomorrow to discuss it all. The sense is to NOT give Jax any formula feeds unless his weight dips to 5% below his original weigh-in. Since Jax is here being monitored medically, we want to take every opportunity to see what he can do orally. The feeding psychologist (there are 4 that we see here) said that may impact his intake and we'd lose all the efforts in the past 10 days.
So, we'll have the meeting tomorrow and discuss the plans for home/discharge including trouble shooting plans in case of illness and all that good stuff.

Otherwise today was pretty standard. Jax decided he didn't want to do art at his class today, and played with the toys there instead. There was a "Caribbean" party after lunch (yes, I bribed him with it) where he did some GREAT art for Daddy.

I had quite the "perspective" run in this morning while making my breakfast in the parent lounge on our floor. Jax was on a chair watching a cartoon while I tooled around the kitchen area. Another mom was in there washing out baby bottles. We chuckled together how much work that is and she said something about her son. I asked how old he was and she paused. She acted a little embarrassed and said he was 18 months old, but quickly followed up with the fact that he had GI issues. I waved my hand in the air and told her there was no need to explain. I pointed to Jax and said he never finished a bottle as a baby, and actually ate his first meal last week, so need to be embarrassed from one GI-mom to another.

She looked relieved, and then asked why Jax had a feeding tube. I told her a quick rundown of prematurity and low blood flow and the puking and lung issues and suddenly I said the word "motility study" and her face went totally blank. I stopped talking and she said her son just had that study done last month. I asked if he had Pseudo Obstruction and her mouth hung open saying she's never met anyone who even knew it existed. Her son is on TPN (the IV feeds) and a colostomy bag. He has a fever so he's inpatient trying to find the source and hoping it's not his central line.

I told her there's hope, and she broke down SOBBING. I ran and got tissue and hugged this woman. A complete stranger and I stood in the lounge while she cried on my shoulder. She is so scared and so overwhelmed and looked down right exhausted. She described to me what we went through with the non-stop nights of screaming and puking. She said she quit her job to care for him and she wakes up every morning scared to look in his crib to find that he choked or was just not alive somehow. Wow, it really brought me back.

She sat down by Jax and she sort of pet the hair on his head, and Jax promptly said, HI, and she smiled. Then she cried again. Ohh, this poor woman. It was time for us to get to Jax's morning therapy and I told her I'd leave my email and blog address for her. I still don't know her name, but oh my gosh... I just want to put her in my pocket and comfort her!

Jax opening up treats sent to us by some awesome friends!

He thought they were so cool that he actually did lick a little frosting! (I think he looks like his brother here!)

Here's Jax with a few volunteers coloring some wooden lizards. He's pretending to roar at the guy next to him.

I just thought this photo of the boys was cute since it looks like Jax is eating a big chicken dinner. (He did lick some sauce and mayo all by himself).

Tuesday, February 14, 2012

Day 9

Better day!

Don't ask me how, but Jax gained a tiny bit of weight.
I had Jax alone at breakfast since Jason and Brady were at speech class. Jax did a great job, so the big question was - how was he going to do at lunch alone with me AND Brady. He did just fine. Today's trick was a drawing of the elevator sitting next to him. It was used as his PASS to go to the elevator and push the buttons.

I don't hate bribery. Hey, everyone wins.

We did a family dinner with me feeding Jax and Jay focused on Brady. It went great. Our goals now will be to get the boys alone with Jason successfully and for Jason focused on Jax during a family meal. If it all goes smoothly, we may get to go home by Thursday night and continue our therapy at home. You never know how it's going to go with a three year old!

Jax's fluid need went down a bit to 610 ml's tonight. He took a decent bedtime snack of banana pudding and chocolate milk. I can't wait to get the blenderized diet menu from the docs to go home with. I mean... how does one puree a taco??

Oh yeah, Happy Valentines Day! Jax painted his nurse a cute valentine in his art therapy class this morning - of course she loved it :) We took the boys to the "party" hosted by the hospital after lunch. I got to see the other feeding patient's family all together and talk to the mom for a little bit and say good bye. She was discharged tonight since she met her goals, and it was too difficult to get a family environment together (there are 5 kids and the husband works 2 shift). They are a predominately Spanish speaking family, so that posed some challenges working through an interpreter I guess. The mom of the little girl is just a sweetheart. She told me that we are special moms that God chose. Awe, that was sweet. But I wonder who was chosen to care for the sad newborn next to us who was brought by a policeman and CPS. The poor baby is crying and it's taking EVERYTHING in my power to not go in there and rock that poor peanut. I just want to scoop it up being left all alone in that room (sad face!)


Jason doing a craft with the boys at the party. Notice he's wearing his special bracelet from the boys!

Jax's nurse/girlfriend, Sara!

Monday, February 13, 2012

Day 8

Today required a lot of deep breaths.

Jaxon's weight is down today (23.6 lbs, boo). It's nothing too concerning yet, but we're watching it. Today Jaxon decided to challenge  us. I had lunch alone with both boys to start mocking the home setting, and Brady was very well behaved. He sat and ate his lunch and never left his seat until I told him he could.

Jax goofed off and ended up having a 15 minute stand off with me over his milk. I turned him toward the wall so many times, that we literally ran out of time. My patience over freaking milk was losing. The doctor came in the room and told Jax he could not pick out a movie for the afternoon and he had a complete meltdown. I wasn't allowed to pick him up, so we walked back to the room with Jax grasping at me and SCREAMING all the way down the hall.

When we got back into the room, Jax was a puddle in my arms and I cried. It's so hard to have been here for 8 days and then watch him regress and be so upset. I guess I expected this more in the beginning and not after the wear and tear of the stay.

The social worker came by to chat with me and gave me a pep talk. Jason and Brady came back for dinner time, and the doctor put me in with the boys alone again. Obviously it was to get me used to being worn down and having to get back in the game (because that's reality). Once again, Brady did well, but certainly got a little goofy.

I gave Jax a great goal to meet (a game of Angry Birds with Daddy) if he drank the milk I requested. I kept my cool and handled Brady's' requests and silliness while Jax tried my patience again. He refused to respond to me turning him to the wall, or wanting to please me to get his game with Daddy after, so the doctor came in and took Jax back to his room alone to sit in his crib. He was told that he had to have a private time out away from everyone because he wouldn't drink his milk.

The doctor came back to Jason and I and said that Jax didn't cry once and was sitting just fine in his bed. WHAT A STINKER. So we waited a few minutes and she brought him back. I put him back in the feeding chair and explained it was time to eat (how he wasn't starving was beyond me) and he still refused. This time, I put him in his room alone and explained that Daddy and I were taking Brady for a walk and playing the game while he sat there alone. He gave me a sad face, but still never cried. The doctor sat outside his room and told us to go for a walk.

We came back 10 minutes later and Jax was still very content. I went in the room and explained that he did not get to play the game for the rest of the night and he made me sad. So that was the end of that meal. Seriously, he sat in a caged-crib with no TV or toys and just didn't seem to care.

Jason and Brady left and I gave Jax a shower. We went into the feeding room for his bedtime snack, and he did much better. He drank 2.5 oz of milk and 10 bites of ice cream. Even with that, he still needs 680 ml's of fluid tonight over night.

I will have Jax alone for breakfast since Brady will be at speech class with Jason in the morning. I'm not sure if they'll throw me in alone with them or put Jason in at lunch time. Jason and I realized the perfect goal for Jax now. He's OBSESSED with pushing the elevator buttons. If someone gets on and pushes their own button, he totally melts down. So we'll try hanging that over his head tomorrow. Yes, pushing buttons... you read that right.

The boys are making Daddy a Valentine gift in Art class today.

Jax after his shower tonight, showing off his cool Valentine pj's. Look at those skinny legs!

Sunday, February 12, 2012

Day 7

Jax's weight remained steady as of this morning. His fluid need is down a tiny bit to 565 ml's.

Jason did the breakfast and lunch feeds, and did better each time. Jax held back a pretty big puke from the gritty vitamin mixed in the food, so it was more practice on how to handle that. We're buying a pill crusher when the pharmacy opens tomorrow so we can make the vitamin into a fine powder instead of crushed granuals.

We're trying to mock the family setting we'll have at home, so we had Brady eat his dinner across the table from Jax tonight. I fed Jax, and Jason tended to Brady and rooted Jax on for good behavior. As expected, Jax pushed his limits and tried to screw around during the session. I had to turn him around about 5 different times for either spitting his food or just playing around. He responded well, but he didn't get as much volume in the time requirement.

We were given a 3 hour pass today to leave the hospital. The insurance company allowed one, so we took it today between lunch and dinner. We took the boys to their first movie! We went down the road to Beauty and the Beast 3D, and the boys did great. Brady wore the glasses for a bit, but Jax didn't at all. They seemed to really enjoy themselves and we were wondering if Jax would be upset coming back to the hospital, but he wasn't at all.

Jax took about 15 small bites of ice cream and 2 oz of milk for his snack time. I'm glad he did since he didn't take a lot at dinner. He's still really chipper and the only one in the family not seeming too affected by the hospital stay. I think he has a bunch of girl friends up here!

Here's a shot from yesterday. All the boys playing a video game.

First movie!


After dinner, Brady and Jason went home and without prompting, Jax hugged Jason and said, "I wuv u dada!" Oh... My... God, I could die from the cuteness.

Saturday, February 11, 2012

Day 6

Jax gained back his lost weight and is still at his admittance weight, so that's great. His blood sugar was back up to 128, but the doctor said he wasn't even supposed to get his blood sugar taken anymore, and he thinks the spikes are from the Pedialyte going past 5am, and this morning it did go until 5:30am because the nurse didn't fill the bag up enough in the middle of the night. I was woken up to the alarm going off at 4:15am and had to call the nurse in to start a new bag up. I hated the pump last night.  The alarm went off at 11pm, 11:30pm and 1:15 am before the final one. It was just wonky and kept saying the line was obstructed. Good thing Jax pretty much slept through it.

Today was still a step forward, although I admit, today I had the most anxiety of the stay so far. I haven't slept a full night all week, so that has added to my cold blowing up a bit, so I'm sure that all contributed to it.
This morning I had the feed all by myself with coaching in my ear-mic. We did great together, but Jax had a tummy-problem, and vomited all over himself. It was a good learning experience for both of us, because I just cleaned up the part that was in our way, calmed him down and continued with the feeding. Jax learned that the session did not end with him vomiting. I give the kid credit, because the vomit wasn't behavioral. The doctor and I agreed that he looked like he had an air bubble because he really fought it, but grabbed his tummy and couldn't keep it in.

The lunch meal had Jason sitting next to me at the table doing some praising, but really just getting Jax comfortable with dad in the room and some other distractions. I think we did pretty good. And I have to add... Jax had to take 5 tastes of puree'd HOTDOG. The fact he didn't puke on that shocked me because I had to hold back my own facial expression when smelling it!

The dinner meal had me start the meal, and dad finish the meal. It went pretty good, but I had to leave the room because Jax wouldn't finish his milk for Jason and started having a meltdown. The doctor coached Jason through and praised Jax during the drinking and promised to have me come back. It worked pretty good. Brady was QUITE the handful, and Jax did QUITE well considering Brady was running around and had a toy. Good practice for at home I guess! But it was great to see that Jax did well with Jason. We knew Jax would be clingy with me, but Jason is learning how to get Jax past it.

We have noticed that Jax is coughing and gagging  little more today, so we're dreading the thought that a cold is on the horizon to put a stick in our plans. We'll see, but Jay and I definitely got our faces splattered with a variety of puree's today.

We've decided to add a bedtime snack and realizing Jax goes to sleep just 2 hours after the dinner meal, we're going to move his meal times to 8, 12, 4, so we can do a 6:30 snack, which makes more sense. The nurse had our snack and let us into the feeding room. We were on our own!

Jason and Brady sat in the observation room and Jax took 5 bites of ice cream (something we knew would go over well for the first "snack" try) and 1 oz of chocolate milk, so I consider that a success for the first time. It was about adding another time of eating skills and not about a volume goal tonight.

Jax's fluid-need tonight is the same as last night. I can't imagine Jax is going to take much more volume-wise in a single sitting since he takes between 4-6 oz of milk (strawberry or chocolate made with heavy cream) plus food in a 20 minute time. The doctors said that it's very age appropriate. We need to work on varying Jax's tastes for food and for Jax to take the remainder of his fluid need during the day with water. So far he doesn't want ANY water between meals except when he gets his teeth brushed. I also think we'll do 4 smaller meals at home, rather than 3 bigger meals, and I think that would help with a little more fluid intake.

Jax actually said YES for the first time tonight when asked if he wanted to go eat - uh, YAY! The progress and surpassed goals are just amazing. I know I'm a bit stressed out right now, but I'm also amazed at this little boy. The doctors are all shocked as Hell, if I may say! They've been seeing him since he was a baby, and set the goal to what they truly thought was where he could get to - he passed that on day 3 :)

Jason had a long talk with the doctor at breakfast while I was feeding Jax, and of course there's chatter of Jax only needing his tube at night for supplemented fluid like what we're doing in the hospital, but the menus and continued therapy-like meals will still prove to be hard work on our end. The good news... that means Jax has moved into the world of oral eating, we'll take it! We're pricing out food processors and scales this week with anticipation.
Jax will learn like a baby learns how to move up with food textures. Slow and steady. Our goal of him consuming his dietary and caloric needs by mouth seems to be a major possibility!

Jason is sleeping at the hospital tonight, and I ran home with Brady. I need one full night of sleep badly. I got home to get Brady in bed, run a load of laundry, update here and now I'm hitting the HAY. We need to be back on the road by 7:45am.

** Of course I left the new camera cord connected to the lap top in the hospital room, so I'll try to download the photos tomorrow and throw them on here. The day really consisted of the boys playing, fighting, us taking long walks and my friend Valerie visiting with a gift from some MoMMY friends :) love them :)
Ok, off to run the humidifier and slam some decongestant.

Friday, February 10, 2012

Day 5

Jaxon's weight went down 3.5 oz, so nothing much.

I fed Jax with the guidance of a doctor in the room this morning, and he drank 6 oz of milk (I hold the record!).

Lunch was harder. I'm  not sure he was really hungry yet since the meal was about a half hour early. Jax struggled a bit and had to face the wall to calm down, but he still had about  4  oz of milk.

At dinner, I was left alone and guided through a mic in my ear. Jax did great and while he had about 4.5 oz of milk, he actually had a decent amount of food. We mixed vitamins in his food that he finished completely. We could tell he was getting full, so I felt good knowing he was filled up.

Jax's total fluid need overnight went down again, so there was definite progress. He is down to 580ml's tonight.

Brady had a good day at school this morning and was REALLY excited to see balloons in Jax's room today. The boys played hard and it seems that Brady gets bored much easier/faster in the room. Maybe Jax is just more acclimated to being content in this place. I'm starting a cold and I hope it doesn't blow up too big. I may have Jay stay tomorrow and night and sleep at home one night to get a full night of sleep.

I'm really excited and anxious for what the weekend brings without the doctors in the room!

New day of art.

Jax listening to Anna's heart. Anna is the other feeding clinic patient.

Yup, Brady insisted on walking the Elmo balloon on our walk.

I hid this Christmas present away and pulled it out today. The boys LOVED playing Hungry Hippos.

Here I am watching Jaxon's swallow technique and praising for good drinks.

Working with a straw.

Brady pretending to coach us along.

Thursday, February 9, 2012

Day 4

Jaxon continues to improve, but change is in the air.

Jax's weight was the exact same, so he hasn't lost even an ounce yet, or so far, however you look at it. His blood sugar was at a beautiful 75, so they'll probably stop taking it soon since he continues to show that he's stable that way. He's most likely not getting the proper total nutrition a person needs with the foods he is intaking, but this is just the bootcamp to get him accepting more by mouth, and less by tube. So far, so good.

Jax had puree'd eggs that he was not fond of this morning, but he choked them down. I really thought he was going to vomit, but he pulled it together and ate about a 1/2 oz of them for breakfast along with some banana pudding and 4 oz of chocolate milk.

I can't remember what he ate for lunch because another psychologist and the head of the unit (who we used to see back when Jax was a baby)  were reviewing things together and involving me as we observed. The plan is to offer Jax a straw or the cup, since he seems to do better with one over the other based on mood rather than skill. It was also determined that I felt confident to start acclimating myself into the feeds, so we did for dinner!

I sat at the table while the psychologist did the first half of the dinner feed. Jax did not cry going into the seat like he has every other time, but you could tell he wanted to out of habit. Jax had spaghetti puree and choked that down, but actually did bring up a bit of vomit in his mouth, but the doctor insisted he swallow it... and HE DID. I learned the technique of how to push his chin up, look him directly in the eyes and say things like, "NO Jaxon, swallow". So far, he has each time, hopefully that continues as I start taking over (eek). I stepped in for the last half of the feed as the doctor sat next to me. Jax had 5 oz of milk and a decent amount of food, yay! The doc said that once I'm in the room alone with Jax (and they coach me by a mic in my ear), he will most likely regress and not take as much. I'm glad they told me this in advance so I don't feel like a major failure!

His overnight fluid-need tonight is down a bit to 625 mls (700 last night). I wish I could get him to drink water during the day to help that number go down, but he just doesn't want any. I even tried convincing him with a sticker book and it didn't work. Oh well, I'm just glad that he hasn't needed ANY formula by tube so far during this clinic stay.

Classic start to each feeding session.

Classic fist-bumps after each food goal in therapy.

Art therapy.

And these are the beautiful masterpieces that were drying in the sun, which are now gracing the wall of Jax's room.


We sure do have some amazing friends! Jax came back from dinner to these AWESOME balloons! Brady is going to LOVE coming here tomorrow!


Wednesday, February 8, 2012

Day 3

Today was a very busy day. I have to really think hard to start from the beginning.

Jax's blood sugar count was 65, which is the low end of normal, and a much more expected reading. His numbers must have been all messed up as a response to the sudden decrease of food. Jax's weight this morning was back at the weight he checked in at (he was up a little bit yesterday most likely from all the fluid given right before weigh-in).
*If Jax's weight ever gets below 5%, he will be given formula through his tube at night, otherwise we just stay the course we're at right now with just fluid given at night.

Speaking of fluid at night, Jax is down to needing 700 ml's (just over 23oz). Jax improved today from yesterday and had rather good sessions all day. He cried each time walking into the room with just the therapist and getting strapped into the chair, but calmed easily each time. He incresed his intake each time and even had 4 oz of milk in one sitting including many bites of food (which were purree green beans with cheese and also Spaghetti-O's sauce for dinner).

He has a tough time at the very end of the meal and needs a lot of direction and motivation to finish up, but otherwise he's doing great. I'm so excited to see what the end result will be. I will be stepping in during the weekend, then Jay next week and then all of us (me, Jason and Brady) for the last few sessions so Jax is used to the family dinamic.

We kept busy today with a few things. After breakfast I took Jax to the Art Therapy class, then after lunch we went to a BINGO party sponsored by the Greenfield Fire Dept. And then around dinner time, Auntie Rachel and Uncle D came with Brady to visit and also support Jax through his dinner feed.

It's safe to say Jax was asking to go to bed well before 7pm tonight!

Jax having breakfast with Dr. Silverman. Jax has a hard time consuming large drinks each time he attempts a drink.

So Dr. Silverman takes a straw with milk in one end and empties it into Jax's mouth, so he knows what an acceptable size of drink feels like in his mouth.
Jax got pretty upset at the end, but was forced to finish the cup regardless.

Jax coloring a wooden bus and car for Brady during our art class.

Enjoying a game of Connect Four, and playing by his own rules.

Fireman's BINGO (it was a lot of fun!)

Jax won this huge fire truck and a Spiderman version of Chutes and Ladders!

Too bad the truck ended up being a complicated MODEL instead of a toy! (Anyone out there enjoy these sorts of things and want it??)

Jax's best meal to date - dinner tonight, 4 oz of milk! (His milk is whole milk mixed with heavy cream and chocolate syrup)

I have such sweet friends. We came back from dinner to some surprises. My friends Sara and Sam sent a toy and some amazing chocolate covered Oreos for me, MMMM (I'm eating some now!)

Brady enjoying the Fire Fighter helmet we got for him! This is one of my favorite things about this kiddo - he loves to dress up!

Tuesday, February 7, 2012

Day 2

I see progress.

We had a bumpy start this morning with Jaxon's blood sugar, but for the opposite reason we expected. His count was high at 148, then re-tested at 204 an hour later. Odd that it would be HIGH with very little food. They checked his urine and said it was inconclusive, but they're assuming his body is responding to the fasting and spiking a high count with 970ml's of Pedialyte given overnight as well. Jax was his active bubbly self, so we'll just see what the numbers are tomorrow.

Tonight, Jax only needs 740ml's of Pedialyte given while he sleeps since he consumed that much more in fluids today. That means he drank a good amount of chocolate milk at meal times. Typically 1-3 oz each time.

The breakfast feed was a bit tough to start, then he did well, but then had a hard time finishing up. Lunch time went amazing with a new psychologist, that happens to be a man. He gave Jax fist bumps and tickles for every reached goal. It was great to see such a good feed. The dinner started slow when Jax sobbed from leaving me to go into the feeding chair, but he did well at the end with "Bat Cave" sized bites like Bat Man. I see progress with the quality and size of bites and drinks he's taking.

We had to switch his paper cup to a plastic cup because he kept biting the cup and getting wax in his mouth. He also got scolded a lot for spitting his milk out down his shirt (he was changed 3 times today and had his first shower). He was only turned around once to calm down, much better than yesterday. He also showed some handy work with a straw today, that was cool.

Rachel and Brady visited late morning and the boys ran around the room playing. I guess Brady had a tough time at Speech Therapy this morning, and wouldn't let go of Rachel. I assume he's confused as to why Mama and Jax have been at the hospital so much lately. Jason will be with him and have him here by us, so hopefully that helps.

I actually video recorded Jax's lunch session today, but realized I don't have the video program on this computer to download and upload, so I'll have to do that stuff when we're home.

Jax full of chocolate milk.

Jax playing doctor with the art class instructor.

The monitor wasn't working today, so here's a pic from the double mirror during Jax's lunch.

Jax kissing his Tubie Friend bear and looking out the hospital window.

Jax showing his muscles after his shower.