Sunday, January 30, 2011

Tantrums galore!

Yes, by the title of this post, you can probably assume what it's about. Tantrums! Wow, Mr. Brady has really had a run of them for the past few days. I wonder if it's because of the change in dynamic in the house with Jason gone so much lately, but I would think he's used to that by now. I'm hoping it's just a phase! He's got some wild psychosis in him, woo!
Nana Letts and Denice came down to visit which gave the boys some extra special attention and allowed us to see Auntie Rachel for her birthday. I did the math, and oh man... it's sad to say that it's been FOUR weeks since I left the house without the kids. Yikes.

Jax is still vomiting 1-2 times each day , but he's always fine after it happens. He seems a tiny bit more tired than usual, but nothing that would seem "sick". He's still his WILLFUL self :)
I came down with a cold which has spread to Jason. Ugh, sleeping while not being able to breathe is the pits. PLEASE baby Jesus, don't let this spread to the kids!
I called the neuro department at Children's Hospital on Friday to get Jax's EEG results, but I had to leave a message. Hopefully they call me back tomorrow to ease my nerves about that.


Jason is playing some Packer songs for the boys on his phone.

Wednesday, January 26, 2011

Daddy is in the computer

Jaxon had 2 vomiting episodes yesterday morning and one right away so far this morning. He wakes up gagging just awful, so I'm assuming he's having a hard time with morning mucus. He's no longer on the antihistamine medication since he's on the two-week-break of it right now. I'm running a cool mist humidifier in his room all day today and hope that helps him tonight/tomorrow.
He's still dragging his left foot when walking, so I'm hoping a visit to the chiropractor today will help that a bit. We need to have him wear his braces more often. It's easy to leave them off when he's home all day in the house.
Otherwise the boys have been their sassy, curious, totally crazy selves lately!

The boys haven't seen Jason since Sunday and won't see him until tomorrow, so we Skype'd with him last night. I thought the boys would LOVE it since they're obsessed with the computer and climbing up on things. Well... not so much! They were terrified to see Daddy's face talking to them from the computer. I guess from their perspective it's confusing how Daddy could fit in the computer. Jaxon ended up warming up to it and was ok, but timid, and Brady was all out terrified. He buried his head into my arm and wouldn't look. When I pulled him from me, he covered his face. I put both boys on the chair to talk with Daddy and this is what they did...

Yup, Brady laid down on the chair and hid his face which pushed Jax off the chair so he sat on the desk trying to figure out why the heck Daddy was in the computer. He wouldn't kiss Daddy (as you can see) but he did say "bye bye dada", which was sweet.

Monday, January 24, 2011

Football craziness

The boys enjoy pointing down and yelling, "DAW" since they hear us say it about 20 times a day. You know, because they like to climb up on tables, shelving units, TV stands, the outside of the stairway and desks. I can't wait for spring to come to get these monkeys out on some playgrounds.

We took the boys to visit friends on Saturday, and a football party at our neighbors on Sunday. Our close friends are expecting twins and the mom has found herself on bedrest like so many twin-pregnancies can do. We cause a bit of choas when we're there, but they seem to welcome it and soak in what's about to happen to them! We're really excited for them.
The boys LOVED running around with all the kids at the football party. They were so independent and would be found in different parts of the house throughout the day. I kept finding Jaxon on the second floor in a bedroom with another 2 yr old boy playing with trains and reading books. Brady hung out a lot in the play room on the lowest level. I always find it interesting that they don't hang around each other when other kids are around. I guess they are around each other enough at home!
Now of course I'm nervous about them picking up colds from being around so many kids, but hopefully our disinfecting helped. It was really nice to see them be so free and just enjoy running around with kids.

So now the Packers are playing the Steelers in the Superbowl. How interesting for a household like ours! As many of you know, Jason is a major Steelers fan (Packer fan second - although he will only admit that around certain people) and of course we live in Wisconsin, and I grew up in Green Bay. So Jason has promised me that one kiddo gets to wear Packers gear with Mama, and one gets to wear Steelers gear with him. I think we'll flip a coin on who wears what!

Brady woke up from his nap like this.
Apparently he likes to turn his shirts into tube tops.

Friday, January 21, 2011

EEG done

Jax did well with the EEG today. I was so nervous he was going to be hysterically tired and have a meltdown, but he was really good. I had to sing very loud and shake his leg to keep him awake in the car on the way there, but he never fell asleep during the test! Of course he fell asleep on the way home though...
I laid on his bed with him while the doctor flashed a bright light in his face. He was a bit scared and whimpered through this part, but once that was done, he was fine laying in the dark with me poking me in the eyes and pointing out the parts on my face. The doc said he thinks his reading was good enough without sleep, so hopefully we don't have to re-do it.

I have to call the neuro office in 7-10 days for the results, so I'll let you all know when I do.
Jax did rather well today, but did end up vomiting yesterday. He's such a mystery.
Now we'll be working on our TOUCHDOWN poses and try to enjoy the weekend!

Jax after the testing and about to get his headgear removed.
He had a probe under his eye with tape over it. He was keepin' it real like Nelly.

Thursday, January 20, 2011

Getting ready to NOT sleep

The boys are doing well. Jaxon has had some vomits, but held off yesterday and today so far. He hasn't had a stool since Tuesday when he had diarrhea, so hopefully that's just a sign it's over with and he'll go today. I've started doubling his Budesonide nebulizer treatment at night to help with his overnight coughing and that seems to be helping.
Jax's oral feeding has been great. He drank 17mls of formula in one sitting twice now. He has to take a 2-week break from his medicine starting on Monday, so it will be interesting to see if his appetite goes away with it.

Jax has his EEG at Children's Hospital tomorrow. This test picks up tiny electrical impulses in the brain and records them. I have to keep him up 2 hours past his bedtime tonight and get him up at 4am tomorrow. He needs to be sleep deprived (which also means I will be too) for the EEG since they want him to sleep during it. This should be interesting since the testing isn't until NOON tomorrow. So wish me luck trying to get through this with a VERY tired child, and of course for a normal test result, of which we don't receieve any news of for about a week.

The boys hard at work.

I keep finding Brady without pants. Sure enough, they're always in the laundry basket -
I hope he's that clean as a teenager!

Monday, January 17, 2011

More bugs

Hmmm... Jax seems to have a touch of diarrhea and it has that nasty viral smell. I noticed on Friday that he had FOUR stools (which is very uncommon for him) and then I noticed while we were in the ER on Saturday his stool was looser than usual and sure enough today, it's certainly there. I hope it's nothing big, but it makes sense why his tummy is more sensitive. He vomited again this morning, although he was very upset again at the end of his morning feed. I had to go start the car to take him to the chiropractor and he must have thought I was leaving and he had a a meltdown resulting in a vomit. Let's hope it's not a big or long bug!

Jax refused to take anything by spoon today, although he drank a lot of water and drank 17mls of formula by mouth in one sitting! That's the most he's ever taken and well over a half ounce! I didn't subtract it from his tube feeding since he vomited in the morning and it just replaced those lost calories. His medication is definitely helping with his hunger which is great.
I doubled his Budesonide nebulizer tonight since his night-coughing was a bit worse last night and he woke up at 4am upset. He took his mask off early, so he didn't get it all, but hopefully a little more than usual.

Brady has been a pretty good boy lately, and by that I mean, fewer tantrums and the ones he has he's starting to understand a momentary timeout on the "naughty couch", which is the love seat in the play room. He's frustrating me most by taking off his pajamas while in his crib! I still have to go in every night to redress him which can be hard in the dark. He has it part of his routine now and sits up the moment he hears his door open and either will blindly just give me his arms and legs to re-dress him, or he sits up and giggles. I can't wait for spring to put him new pajamas that he won't escape out of. He's in the one-piece fleece zip ups now to keep him warm and cover his feet. Although... by spring he may learn how to take off a shirt and pants, so I'll be back to square one :)

We call it "fish face".

Sunday, January 16, 2011

Crash, boom, bang!

Jax took a big fall on Saturday. He busted through a gate and fell down a flight of stairs. He hit his head pretty hard, but seemed fine. But after checking him to make sure he could walk, he was limping. So I packed him up and took him to the ER to have him evaluated - which was of course a 3.5 hr event since there were so many bigger emergencies coming in while we were there. Two doctors checked him out from head-to-toe and assume he bruised his leg or foot to make him hobble and had me watch for head trauma issues. He's doing just fine now. We've removed the gate for now since the boys aren't nearly as interested in the stairway without the gate, and they can walk down fine. Leaning over the gate is the troublesome part of it all.
Jas has been doing well with his new formula, but did have a small quick puke this morning. Right after he finished his food, he was whining for something and Brady ticked him off so bad he got so upset, I saw it coming. Sure enough, he had a small vomit and then he bounced away happy as if nothing happened.
We spent the entire day of Sunday home enjoying football playoffs on TV and toys with the boys. It was nice to spend the entire day home all together.

Brady did this all by himself. He'd like to be called B-Money now.

Jax playing with our Packer's beads on Sunday morning.

Friday, January 14, 2011

2.5 yr phsical stats

Brady:
Height - 34 3/8" (9%)
Weight - 24lbs (<5%)
Head - 50.1cm (just under 75%)
*Hello bobble head!

Jaxon:
Height - 33" (<5%)
Weight - 22lbs, 8oz (<5%)
Head - 47.6cm (10-25%)
*Another bobble head

So, Brady is making strides with his height which I've really noticed this past month that he was getting noticeably taller. While he's gained weight in the last 6 months and still on a decent curve, his weight could be a little better. We're giving Brady Pediasure as a night snack before bed if he didn't have a good eating day. That should give him extra healthy calories. I have to call in a weight for him in 3 months just to stay on top of things. The pedi ultimately thinks he's just a small guy genetically. Jason and I were both TINY kids, so I don't disagree with her. Other than some eczema spots, Brady is a healthy bean.

Jax re-gained the weight he lost last week and gained some more which is awesome (he was 21.6lbs 5wks ago). I'm hopeful now that we have a handle on his formula/vomiting/diarrhea that he can play some great makeup here. He's having a weight check with the dietitian in 4 wks to see his progress and re-asses his diet. He'll remain getting his nightly nebulizer treatment through March and then re-evaluate. If his night time cough that he has now remains after another week, I'll double his nebulizer dose. So we'll watch that.

We'll continue with speech for both boys and Jax's feeding. Jax has his EEG next Friday and all our check marks should be made!

All-in-all, it was a simple appointment which was nice!


*Side note about Jax's progress. He'll be on his new formula 100% tomorrow and so far he's doing really well. He's been eating orally REALLY well. He took more than 10 bites of yogurt with an open mouth with the feeding therapist yesterday, and last night he drank 13mls of formula from a cup, that's almost a half ounce! Hopefully we'll see more progress over the weekend!

The boys copy each other doing everything lately...


Wednesday, January 12, 2011

Progress

Things have been going well. Jax has been taking all 3 of his meals without any vomiting. I have the pump rate down pretty far so he never has a full tummy, but I'd have to have it low anyway since I'm in the process of switching Jaxon over to the higher calorie formula. He's doing well with the transition so far. It's so nice to give him less formula in a sitting. I redid my math and he only needs 7.5 oz vs 10 oz, so even at a slow rate, he's still eating his food faster than at his high rate on the lower calorie formula. So that all seems promising.

Jax is responding nicely to the drug (Ciproheptadine) and it seems to allow him to sleep easier at night, but I only got one nap out of him yesterday, none today. He drank 8 mls of formula by mouth in one sitting yesterday (that's ALMOST 1/3 oz), but today only wanted 5 mls. He's doing fine with water, which is good. He liked tomato soup last night and cheese sauce today. He always seems so interested and then is totally done after a few bites. He seems to get that he won't win the fight anymore with the directives, but it can still be quite the fight and struggle. That will take some work.

The boys are starting to really interact with each other which is nice. Today they played follow the leader with marching around and screaming like monkeys. Then they crawled and howled. It's loud, but it's good for them. Brady will refer to me at times as DAA DA! just like Jaxon does. Although Jax is very consistent with it and calls out from his crib for me to get him with DAA DA! It's quite funny, but man... I can't wait to hear MA MA some day!


Jax helping me with his humidifier tank.
His room has practically been a rain forest lately.

The boys pretending to make and eat lunch.

While Brady was having a snack after nap time, Jax got stuck in the chair next to him.

Brady wants to help!

Oh wait... he wants to do it too. Sigh...

*For the record, I actually felt really bad about this after I put the camera down and helped Jax. His g-tube was stuck on the edge of the chair and he was pulling on it when trying to get out. Awe... sorry Jax!

Monday, January 10, 2011

Feeding Team Update

I have so much information, so I will keep it as organized as possible.

Overall, the appointment went really well, despite Jax having a 2oz weight loss.

1. Tough Love. This is the next step in the feeding process. We were always told to keep Jax's oral feeding practices enjoyable and non-upsetting. He is stable enough now to handle being pushed. I won't be pushing volume, but I'll be pushing directives. When I say "one more bite" or "one more drink", he HAS to have the food touch his mouth before finishing. Even if he's screaming and flailing, I have to stay strong and not allow him to end it because of a fit. I also am not allowed to take him out of the highchair until he stops crying or screaming. I did this today with the therapists and it was REALLY hard, but I can see how it's time to start this.

I saw the GI doctor afterward and he said he read that I'm not allowed to let Jaxon escape any feeding commands. He told me this is very hard for parents to do when they've had to worry about their child living the next week, and now suddenly they have to push them physically. He's right, it was really hard, but hopefully with perseverance, it will get better over time.

2. A Formula change with higher calories. We'll be using the same formula (Pediasure w/Fiber) but now we'll be transitioning to the 1.5 version instead of the 1.0 version. It should take about a week to transition over, but this means that Jax will only need to take 8oz per feeding instead of 10 and get the same amount of calories. This will help our goal to get him taking his food faster. He also has to intake a lot more water through the day.

3. Start offering Pediasure to drink by mouth when doing oral feeding practice. Since Jax hasn't thrown this food up too much, the therapists would like him to start practicing to DRINK his food rather than only get it through the tube. If he starts ingesting a good amount, we can reduce that from his next tube-feeding. We gave Jax a drink of it at the appointment today and he seemed to really like it.

4. Introduce more tastes. I've been only giving Jax organic yogurt, natural pudding and mixing with whole milk into smoothies. We've always let Jax taste everything at dinner that was the soft consistency, but now we need to offer it as his "meal". So things like marinara sauce, cheese sauce, guacamole, ketchup, bbq sauce and things like that. I asked the doctor if Jax has a "fructose malabsorption" since responding to the new formula favorably. He said that the only way we'd know FOR SURE, was to do a scope/biopsy, but we don't want to do any procedures when symptoms are gone. He smiled and told me to continuing doing what is working, and if that is to choose foods that are more natural, then continue to do so. He said that MANY people actually have issues with fructose, but it's not as obvious.

5. Start Jax on the medicine - Cyproheptadine. Jax used this once while inpatient as an infant and it didn't help him much, but with the way this drug works, I don't see how it could've helped him much then (not using his stomach and vomiting all day). This drug should help in a few ways:
a) It's an antihistamine. It works like Benadryl and should help Jax with his mucus-related gagging.
b) It has a drowsy affect like Bendadryl and should help Jax at nap time and bed time (he has a hard time falling asleep, and hasn't napped in weeks lately).
c) It relaxes the stomach and may help while laying down to not feel yucky, and may help push food through a little faster.
d) It's induces hunger. This would help with oral feeding.
* My friend Laura's boys have been using this drug with some great success, so I'm eager to try it again.
This drug can build up immunity, so we'll use it for 2 weeks, then take a break for 2 weeks, and then back on. We'll see how it goes.

6. Overall the doctors think Jax is becoming medically stable and has shown that he can be when in between virus' and he's reacting to virus' more favorable each time. The doctor thinks the vomiting right now is his "feeding disorder" reaction to mucus. He gags and doesn't know what to do other than vomit.
They want to see Jax show a steady weight gain, and have a better volume tolerance (take his feeds faster) and once that can all be accomplished, we'll discuss putting him in the in-patient feeding clinic. That is a 2-week aggressive feeding stay that would be the final push for him. We have a dietitian follow-up in 4 weeks and then the next full feeding team in 3 months.

I will slowly but surely be getting Jax back to eating all three meals and hope this bug passes soon. I hope he responds well to the higher calorie formula change because that will be a big help with the volume push. Jax's only official diagnosis on his chart right now is "feeding disorder" and nothing else. This feeding disorder is from a long complicated GI history, that has left him without the tools to know how or why to eat. His stomach is sensitive to volume for unknown reasons, but one reason is from the lack of using it for an entire year. Illness will and has triggered extreme vomiting in him, and will hopefully continue to get better as he learns how to eat.

The entire feeding team has so much hope for Jax, and so do I.

Saturday, January 8, 2011

Hoping for a bug

Our experiment with the Budesonide nebulizer wasn't very successful, but we did notice that Jax only seems nauseous when we lay him down at night. He starts to immediate cough and gag, otherwise he's perfectly happy and healthy throughout the day and keeping those meals down easily. I called the pediatrician yesterday to discuss what has been happening through the week and see what she thought.

She thinks he has a bug or virus that causes some extra mucus and he's more than likely gagging and choking on it when laying down, and usually nighttime is the worst for that sort of thing. Jax's full tummy will trigger a vomiting episode during that gagging. So our plan of attack is to assume this is short lived and change the way he eats at night for a little while. The doctor said that since he gets 2 full meals, she's not concerned with Jax getting a FULL 3rd meal. So now we're putting him on his backpack 1.5hrs before bed and running his food slowly and only giving him half his "dinner". I also gave him Zofran 15 minutes before bedtime as well since waiting for him to get nauseous and try to push it in, is counterproductive. The doctor has high hopes that this is not a relapse, and we just have to use all our knowledge from Jax's past to keep him hydrated and stable to avoid the hospital. Since he's taking most of his food, we're still sitting pretty good.

It was really neat putting him to bed without the pump attached, but the trade off is that he has to wear the backpack during a time he usually didn't. We also have to give a bath immediately after dinner, so that all can work out too (which all makes us completely house-bound). I started up a humidifier in his room today, so maybe that will help him? We'll see.
It's nice not to have to take him off the pump at 10pm and waking him , which was causing the episodes (and his full tummy).
Last night he had some coughs/gags, but never had an episode, so hopefully we just do this for a little while and he'll get better. THAT'S the hope!
Jax was up around midnight and 4am screaming a bit, so we're not sure what that's all about, but he was so tired that he took a 3hr nap today!

I realized that Brady hid my can opener. We picked up a cheap one today (so I could make chili tonight) and we hope to find that someday! I'm still looking for my earrings...

Fun with Play-doh

Jax is pretending to eat his creation and it seemed to gross Brady out!
(Brady already tasted it prior, so he must remember it does not taste good.)

Jax made his play-doh man drive all the trucks.

Thursday, January 6, 2011

Not looking good

Even with a very low pump rate, and Jaxon sleeping, he ended up having a pretty bad episode last night. I feel so bad for him. It's likely that he may be relapsing, only time will tell.

I have one more experiment to try tonight. I'm going to skip his nightly Budesonide/Pulmicort nebulizer treatment and start him on his pump early at a VERY slow rate.
I wonder if he's reached his tolerance level for the drug and it's causing his nighttime nausea. We had to move his treatment from the morning since that was upsetting his tummy. It's worth a try, and I'm sure I sound like I'm grasping at straws, but I have to try and see... I will keep you all posted!

Wednesday, January 5, 2011

A few more steps back

Ugh, last night was awful. Jax had a pretty bad episode around midnight. He heaved for a long time and it was an awful scene that for once, I don't feel like describing every detail of, other than I had a moment of panic being alone and couldn't get him to stop heaving. After what felt like a forever, I got him calmed down and changed. I was able to administer some Zofran through his tube and get him settled back into bed without a peep for the rest of the night.

I myself had to change and wash up and have good cry in bed wishing Jason were home. And listening on pins and needles if I would hear him sick again. It's really hard to have a taste of normalcy (which we're greatful for) only to be flung back into our old chaotic-regular. It's really hard. So is the dissappointment... Yesterday was the date of Jax's procedure that I canceled because he was "better". It feels so mocking to happen on THAT day.

So here we go with our theory of a possibility in the hopes this isn't some lead into a relapse. Jax took a long nap yesterday, and usually he does not nap at all anymore (he just plays in his crib quietly). Since he took a nap, he was wide awake all the way through his nightly feed, of which he's usually fast asleep for. I have his pump rate up pretty high at night since he can handle it in his sleep. Maybe, possible, hopefully, PLEASE... maybe his tummy couldn't handle that fast rate being awake rather than asleep. Jax was fine today and I brought him to the chiropractor to find that his neck was all screwed up from the ordeal. I kept his pump rate low all day and plan to tonight in hopes that that was all the problem was.
I can hope. And I will.

*I was reminded by Shawna and Laura that this is a marathon, not a race. A setback is allowed and expected this time of year with all the germs flying around as well. (sigh) I know... I know..


Jax was trying to get Brady to wrestle with him. Big B declined all night.

Playing with their farm together.

Tuesday, January 4, 2011

30 steps forward, 1 step back

::post title is dedicated to Shawna::

I hate reporting this, but Jax had a vomiting episode yesterday. BUT there were possible factors as to why. I turned his pump rate up higher than it ever was in the morning and he was straining very hard to poop when it happened. I had a feeling that those two things combined caused it, at least I hoped that was the case.
Today I turned his rate back down (which is still decent at 110mls/hr) and he did fine today. Jax was re-evaluated with Miss Karen for occupational therapy (fine motor skills) and he scored much better than what he did at the NICU development. I will continue to work with him and we'll have him evaluated again in March. So we won't be doing any formal weekly OT.

Jason is out of town, so it's just the boys and I hanging out for a few days. Hopefully things stay nice and boring while we do our usual therapy sessions and other activities.

Jax working on those fine motor skills while stacking blocks.
These simple wooden blocks are great because you can go thru the alphabet, numbers and pictures of simple objects and animals.

Sunday, January 2, 2011

Hide and Seek

Well, it's back to normal tomorrow. Jason goes back to work, and we start up our routine again. So far 2011 has been great. Jax's health has been fabulous and the boys grow each day.
Lately Brady has been playing hide-and-seek with our things. Jason couldn't find his glasses after taking his contacts out the other night so we went on a search. We found them in with my hairdryer and then again another night in with my jeans. He hid a birthday card to a friend a few weeks ago that we still haven't found yet. I'm currently missing some earrings that were on my nightstand and can't find them anywhere as well. We gave the boys a fake garbage can in the kitchen since they kept throwing important things away in the real garbage. This way we can go through their fake garbage to see if anything important is in it. Where are those earrings Brady??

Jax just laughs so hard now before bed since he figured out a cute little game. Each night after brushing his teeth he would give Jason a kiss and I would tuck him into bed. Well now he kisses Jason, kisses me and pushes my and Jason's face together to make us kiss. He does this over and over about 10 times until he's just into hysterics laughing so hard. Brady was on the floor laughing super hard at us watching it. It's nice to send them off to bed with a strong giggle in hopes of happy dreams :)

It's nice to find your child wearing pot holders and running around like the champion.

Jax kissing Bailey at Kurt and Mary's house for the Rose Bowl.
(If you click on this twice to enlarge, you can see a full on tongue smooch going on here)

Brady hangin' with Kurt during the game.

Papa Letts with all his grandkids at the Cheescake Factory.
Christa and the kids were on their way to the train on their way home.