Thursday, September 30, 2010

The end of a cold

Jax's cold is making its way around the house, but it doesn't seem to be too bad. Jax is feeling better today. His runny nose is significantly better, and I could tell by his demeanor his tummy felt better. He took all his feeds today in their entirety and was fine. He's still crabby, but Jason and I are wondering if he's going through a phase right now like Brady did a few months ago. It's hard to tell.
Jax had a little episode the night before when we were all playing together. Brady was sitting on my lap and Jaxon just did not want that happening. He pushed Brady off me and when I explained (ha!) to Jax that Brady can sit on my lap too, he proceeded to pull Brady's hair. I put Jax on the naughty couch and explained again (ha!) that he can't do that. He went CRAZY. He threw himself off the couch (looks like we need a naughty-corner instead) and went after Brady again. Jason and I were shocked to see him so upset. He was so hysterical that he started gagging, so I grabbed him to settle down. Jason held Brady (who was in tears) and told me I can't give into Jaxon (who ultimately wanted me to hold him), but I'm not sure what to do when he gets THAT worked up. He was starting to make himself puke and was so wild. He wasn't even phased after launching himself head first off the couch (thankfully hitting a cushion). What to do... what would you do?

The boys had gymnastics this morning and speech/feeding therapy later at home. Jax ignored the speech therapist a little bit, and kind of kept playing off alone. By the time he had to sit in his highchair for feeding therapy he had a meltdown. The therapist held him and walked him around (which would usually make Jax in heaven), but he was done. So we skipped feeding practice and he took a nap.

I spoke to the feeding therapist about the possible Fructose Malaborption, but also that Jax had a cold, so there's two variables at play. His suggestion is to go back to all organic and use a guide as to which things would be best to consume and see how he does. If he remains vomit-free, we still won't know if it's from the cold or fructose, so I'll have to experiment. We'll know soon enough I guess, right? When Jax was vomit-free for those 4 months last winter/early spring, he only consumed organic baby food purees of any "volume". The rest were all tastes of things, which after reading about Fructose Malabsorption, would make sense. He could still consume fructose, it just has to be limited and certain fruits/foods are better than others. (I got a fabulous cheat sheet from a friend, thanks Jess!).
Either way, this may or may not be his issue at all, but it's an avenue to explore nonetheless.
Jax had normal stools yesterday and today, but this evening he had diarrhea. So that's still being observed.
All-in-all, I'm happy with where he's at. I will say that it's really nice to see him feeling better.

The boys have a little game that they actually play "together" now. They usually do parallel play, but I see the shift starting to happen. They like to run around the house together SCREAMING and shrieking at the top of their lungs. They think it's hilarious and have a blast doing it. They sort of chase each other and do it until they're so out of breath, they can's scream any longer. Good times...

Brady constructing a tower
Jax did the balance beam 3 times today, with one foot in front of the other,
he's learning so quick! The therapist was super impressed. Brady kind of got it once, but was pretty distracted to really give it a try. He was busy clapping and "singing" and basically charming everyone around him. He loves the music.

Tuesday, September 28, 2010

GI update

Jax saw his regular GI specialist today. The doctor thinks our probiotic experiment is interesting. He said it's worth trying and it's most likely not a coincidence if his diarrhea ends while stopping the probiotic. Our chiropractor noticed that there was added vitamin C in the probiotics and thought that was contributing to the diarrhea, but the GI doc didn't think that could be it. The doctor did say he's interested to see how Jax's gut-flora balances out without the added probiotics. I asked what "level" of probiotics he should be on and the doc did not have an easy answer. He said that probiotics are still very under researched and different probiotics help different parts of the gut. He said to use my best judgement and gage his progress. He did not think the vomiting had anything to do with the probiotics, but thinks his stomach is so sensitive, that maybe the diarrhea FROM the probiotics was upsetting it. Who is to know.

The doctor thinks Jax's current stomach issue is from his cold. I hope he's right. The final answer from the doctor is that he hopes an adjustment of probiotics helps his diarrhea and that his vomiting will cease with the cold. He feels that Jax exhibits "Gastroparesis" (slow emptying) whenever his body is under stress. (I'm excited to change our "about us" on the side of the blog).

As for an update on Jax since the weekend, he's doing "okay". We kept him vomit-free on Sunday and Monday with limiting his food, but he couldn't contain it today. He just can't handle any volume of food yet. His poo has been good, except he didn't go today, so we'll see how he does tomorrow. Jax weighed 22.4lbs at the appointment today which isn't great, but he finally grew to 32". We're not happy with his weight (not even on the charts) but the doctor is not alarmed since his height to weight ratio is still decent. He thinks his next weigh-in in 2-3 months will give us a good indication if we need to intervene more.

So beyond that, I came home with a lot of questions and did some research. I feel like we have three avenues to explore and I have NO idea which one to try first or just continue doing what we're doing. Here are my current ideas of what is wrong with Jax:

1. Jax's probiotic dosage was too high. Keep him off probiotics and gage with a possible mild probiotic.

2. Call the doctor back and request a breath-test to see if Jax has "Fructose Malabsorption". I know the doctor suspected some sort of an issue with this, but I had a light bulb moment today. We stopped giving Jax food by mouth, which is usually pudding or yogurt, and he started doing well (along side stopping the probiotic, so who knows) but he got sick on Saturday after we started it back up on Friday (along side a cold, so who knows!!). I read there's a "breath test", but I don't know how easy that is for a toddler to do. Maybe I'll call the GI nurse and just ask about this (who is on vacation all week, so I'll have to call next week). Fructose may be upsetting his system... I don't know.

3. Serotonin Support. We stopped this supplement with the probiotics. We had a feeling this helped with the vomiting in the first place. I did some research today of it's ingredients (Tyrosine and 5-HTP) to find that it's a natural antidepressant and sleep-aid. Jax was put on this because he tested low for serotonin from the alternative doctor. He felt it was a direct link to his gut. I don't want to keep him on supplements that aren't necessary, but should I start this back up to see if it helps, or wait to see if he does well after his cold?

See... options without any clear cut answers of what to do, and in what order. I know I should never change more than one thing at a time, so I guess I should just leave him without the probiotic until his cold is over, and then reassess the situation. Right?
Help...

The boys got haircuts by Nana Jayne on Monday and they did GREAT! She sits them on her lap while I play with them in front and she was able to do a real haircut with the trimmer and scissors. I love their little haircuts and am happy they have to have a total buzz cut all the time now!

Let's just peek at some pictures~
(I just realized you can't see their haircuts because they have hats on in all the pics after the cuts! Sorry!)


Regular scene of the boys all wrestling before bedtime.


Brady reading a bedtime story

Brady was all about his bat one afternoon


The boys have re-discovered their lawnmowers. We spend hours with them now.
I'm happy about anything that keeps them entertained and IN our yard.
This was Sunday.

This was Monday



More wrestling


Tree hugging on Tuesday

Jax loving his tree

Brady gave the tree a high-five

They decided the sandbox needed some attention

Brady and Jason coloring

Brady wanted to color just like Daddy

Sunday, September 26, 2010

Slight cold

Jaxon had 8 vomit-free days, which was a really nice break. Yesterday morning (Saturday) he woke up with a clear runny nose, watery eyes and he is quite crabby. He didn't hold down any of his meals on Saturay. He suddenly went from no vomiting to 3 vomits in one day. Today we timed out his food very slowly, and if he's able to finish the last one he's on right now (he gets his last feed while in bed at night) then he'll have only lost 70ml's (just over 2 ounces - we cut his first two short noticing he didn't feel well) of food today, which isn't bad since he's sick and of course not having him puke is worth it.
His stools are decent I'm told. Jason changed both his poo diapers this weekend and told me they were runny, but not diarrhea which is great. Hopefully his recent vomiting is due to this cold and it will leave all together.

We all feel a little off lately in the house (tired, slight runny nose although nothing major), so I wonder if it's just hitting Jax the hardest. I also wonder if the absence of probiotics all together have left his system more exposed like the chiropractor was worried about. I plan to bring Jax in tomorrow (rather than Wednesday) and review the probiotic info. An adjustment in theory is supposed to shorten colds, so I'm hoping that will help.
We sent Jax to bed with Tylenol and Zofran tonight hoping he'll get some sleep. He's been restless and napless this weekend.
Otherwise the weekend was very quiet. It's quite chilly, but we've still gotten the boys out a bit for walks or playtime in the yard with some warm gear on. Jason and I got our flu shots on Saturday, so we're glad to get that out of the way. The boys have a busy weekend with appointments themselves. Chiropractor tomorrow, GI specialist on Tuesday, Gymnastics on Thursday with Speech/Feeding therapy to follow and then their own flu shots on Friday morning along with their eye checkups. I'm making Jason come with me for the shots and eye appointments... something tells me that dilating these kid's eyes will require an extra hand or two!

Thursday, September 23, 2010

I have no idea what to lable this post

The boys enjoyed their 2nd gymnastics class today. We split the boys up, so I was in one room with one of them, while the other was in the other room with the physical therapist. It was so nice to spend 30 minutes with each kiddo alone (we switched rooms half way through).

Jaxon wore his backpack through class today since he seemed to be feeling well, and I didn't want him to not get his breakfast. He did amazing with his food. He took his entire morning feed (we've been cutting it short lately) while in the car, at the class, and back in the car. He is very obvious when he's feeling better and can handle food. Tomorrow marks one full week of being vomit-free.
He's also not constipated like I thought he might be with stopping the probiotic. His poo has been decent with going back and forth from normal to almost watery (but not ever quite). The chiropractor is checking Jax's probiotic information (the amount of bacteria #s) against what she usually recommends for pediatrics, so I'm glad I have someone looking at how strong of a dose it was. She feels that he'll need at least a mild probiotic through the winter to protect his gut, but we'll see what she comes up with from her research.

So, if our experiment continues to have these great results for Jax, we'll obviously cancel his upcoming procedures for the EGD/Colonoscopy. I'm sure the GI docs will agree that it only needs to be done with presenting chronic symptoms.
Jax's regular GI doc gave us a prescription for the diarrhea that I'm also holding off on until we know for sure or not if the probiotics were the problem.

I took the boys to Waukesha Memorial Hospital yesterday to get Jax fit for his leg braces. Wow, the boys were in rare form of total SASSINESS. I don't know if the unfamiliar hospital or doctors set them off, but it was a struggle. Jax had a complete breakdown getting his feet measured and Brady was pulling frames off the wall and opening the door to run down the hall. It was "one of those days". By the time I got them packed in the car, that is, after lugging Brady on my hip while he was kicking and screaming and Jax strapped in the stroller crying so hard he had tears and snot covering his face and shirt, AFTER he threw every single thing out of the stroller including sippy cups which popped open flinging water all over the floor, I was sweating like a crazy woman!
And to think we were on our way to another appointment at that point... the chiropractor, who by the way, asked me if Jax had a crying fit beforehand while she adjusted him. Um, yeah, you could say that.

And in fun news, the boys do a tiny ROAR when asked what a lion says :)



Boys at gymnastics

Jax loves swinging from the rings

Jax working on walking down steps. He has a hard time with his right side.

Wednesday, September 22, 2010

Happy 3 years

Three years ago today I married the love of my life. Happy Anniversary sweety! Who knew we'd have the most amazing boys together? We really did...

Tuesday, September 21, 2010

Probiotic experiment

Our probiotic experiment is quite interesting. Yesterday Jax had a rather normal stool for the first time in 6 months. I'll spare you the details of the poo, but it was certainly not diarrhea. I was interested to see if he'd even go today since I'm wondering if removing the probiotic will cause constipation. Well Jax went today and had runny stool. It was still much better than the watery diarrhea he's had, so this is quite interesting. No constipation at this point. We'll see how he does the rest of the week.
Jax is also having a nice break from the vomiting, but again, I've been stopping his morning pump with 1-2 ounces left and just splitting up the remains between his lunch and dinner since he doesn't seem affected by volume at those times like in the morning. So this is a nice break!

Jax's EGD/Colonoscopy has been scheduled for Oct.5 with his pre-op appt the same day as his next GI appt on Tuesday. If Jax's poo normalizes and his vomiting is manageable, I'll talk with the GI specialist on Tuesday to see if we should cancel the procedure. So we'll see how the next week plays out and go from there.

Tomorrow Jax gets fitted for his braces at Waukesha Memorial Hospital. I think it will take 2-3 weeks to received the braces once fitted, so I'm happy to get this going.

Update: Jax had some diarrhea after his nap today. I'm not sure what's going on in his GI system, but we'll see how the next few days go.


Brady wearing his party hat yesterday. He just loves this thing.

Typical scene at home each night after Jason changes out of his work clothes.
Again... with the party hat today...

Hi Jax!
This is his typical wide-leg stance. His right leg pronounces out to help balance his weak right side. When he walks, he sort of hobbles as if his right leg were a peg. His pirate walk :)

Sunday, September 19, 2010

Bounce

The boys went to a birthday party for the neighbor boys. Two of the neighbor kids share a birthday and had one big party. The boys had a ton of fun. They were at the zoo again in the morning with Daddy since I was out of town visiting some friends. Jason said they really enjoyed the cows, monkeys and elephants.
Our experiment of cutting out the probiotics is interesting. On Saturday Jax's poo was runny vs watery, and he didn't go today, so we'll see where that goes. His vomiting is a bit better, but we're also really limiting his morning dosage since that's when he feels the worst.
Last night he chewed through his tubing while in bed and drenched himself, and then today during nap time he was playing around with his pillow and blankets and wrapped himself up and pulled out his entire g-tube from his body.
Jason got Jax out of bed and we realized he was disconnected. The problem is that we don't know WHEN it happened, so his stoma site (hole in his stomach) could heal over quickly. It took a few tries, but we were able to hold him down, use a lot of Vaseline, and ease the tube back thru the site. That poor little boy, ugh, it just breaks my heart, but thankfully we didn't have to take him to the hospital to puncture a new site, so that's the silver lining!


Jason with the boys outside the bounce house at the birthday party.


Handsome Jax!

Boys inside bounce house.

Brady LOVING the cake!

His party hat fell down.

Yes... that's Brady trying to drink from his sippy cup with the party hat on his face.

Back for more cake.

Yes... still playing with the party hat in his face.

No party hats for Jax.

Thursday, September 16, 2010

Gymnastics

The boys loved their gymnastics class this morning. Although, I got lost trying to find the place and in the meantime, Jax got VERY sick in the car and projectile vomited all over himself, the carseat and the seat in front of him. I felt so bad for him and pretty much had an anxiety attack at the moment.
I finally found the YMCA, got the boys out the car, cleaned up Jax and changed him once inside. We were a little late, but today was basically orientation with an open-gym type of hour. They separated the groups into the bigger and more active kids to the smaller kids. You can guess that we were in the more "active" group. Many of the kids didn't leave their parent's sides, and if you know my boys, that was not our case. They both go off in two different directions immediately and leave me chasing at least one of them at all times. They never cried and never pushed anyone else. If you can't tell by that sentence, that was the situation with many of the other kids. One little boy had it out for Jax and pulled him down a few times. The thing is, Jax doesn't care. He kept getting up and ignored the kid as if he were Brady. The mom felt awful and kept apologizing. The boys were just so thrilled to be there. They got plenty of hand sanitizer afterwards and I'm hoping to avoid any illness from it. We've got to break the bubble they live in slowly but surely.
All-in-all, it was really good for them to run around with other kids and work with a physical therapist on their motor skills.

I took the boys to Toys R Us afterwards to pick up a toy for a neighbor boy's birthday. I got the boys a $5 pack of HotWheels cars and let them have it after their nap today. You'd think it was Christmas morning here! We don't really buy the boys any toys between Christmas and their birthday. We let them play out what they get for the birthday until Christmas and so forth and then they get hand-me-down toys from neighbors and family. It felt nice to get them a little something out of nowhere and to reward them for being such good little men. As much as they keep me running, they sure are sweet little things. They are loving the matchbox cars!

We're going to cut back Jax's probiotics for a few days and see if it helps with the diarrhea. I've talked to a few people today and it seems that a high dosage for a long period can have negative affects on the GI tract. All this stuff I never knew! So it's worth a shot, we'll see how that goes.

I spoke the the GI nurse to the Feeding Clinic GI specialist. Remember Jax didn't see this doc during the Feeding Clinic, but he did obviously read up on Jax's visit. The nurse called and said the doc is not happy to see month #6 of continuous diarrhea, so he wants an EGD (throat/stomach scope) and colonoscopy done with samples taken from both to be tested. Jax has had 2 (maybe 3) EGD's performed his first year of life (remember when they put Botox in his pylorus during one of them?) but they never took samples to test for bacteria or other diseases and they've never done one thru the colon. I'm nervous about this (putting him under anesthesia and/or finding out bad news) but am happy to have the doctors take another look at his system. It should be a one-day outpatient procedure. I'm waiting for the scheduler to call me to set up a pre-op and surgery date. They want to do a pre-op appointment since Jax had a PDA while in the NICU. I'm not sure why that's all connected, but I'm sure I'll find out.

Pics from Gymnastics today
(I couldn't take many since I was running around most of the time!)







Tired after class!

Happy little boys after naptime with their cars!

Wednesday, September 15, 2010

Dare Devils

The boys have been hyper lately and just love to run around the house. Yesterday they both took pretty big diggers sliding on the hardwood floor and smashing into furniture. They gave themselves some pretty big knocks on the forehead (pictures below).Jax had a chiropractor appointment today, so I had the doc look at both kids and give Brady an adjustment as well. Sure enough, Brady was more out of alignment than he's ever been, although the doc didn't feel he'd need another adjustment anytime soon.Jax is still on the weekly-schedule. The chiropractor hopes the upcoming ankle braces will help Jax's back and neck stay in alignment.

Jax had a great day yesterday without any vomits! It was a nice break. I stopped his pump when he had 1 ounce left in the morning and split the remainder in his next two feeds and he did well. He puked before I could do the same today, but at least he only had one vomit and did pretty good today (after a clothing change and wash down of course). I on the other hand realized around 2pm that my shirt was on backwards. Yup, that's me.

The boys have their Adaptive Gymnastics class with the physical therapist tomorrow, so I plan to have Jax on the pump for about an hour and then will hand syringe in some food over time. I'm hoping it will help with his morning-stomach problems. We'll see.

A MoM friend of mine (thanks Jenn) got me in touch with a friend of hers who suffers from Gastroparesis (slow emptying stomach) and has the Gastric Neuostimulator (gastric pacemaker). Since all the doctors believe Jax's GI issues stem from that virus in April, the only answer we have is Gastroparesis.
I'm collecting TONS of research and information on this and even found two hospitals in Wisconsin who performs it (University of WI Madison and a clinic in Waukesha). My goal is to collect as much information as possible and discuss it all with the GI specialist at our appt in 2wks and see what he thinks. So far the research I've read is amazing, but I don't know what the stipulations are for pediatrics as young as Jaxon . All I can do is gather as much information and research as possible and discuss it with doctors. Keeping up the fight and of course... the hope.

Here is an article written by the Madison staff: http://www.llusurgery.org/web/ResearchResources/OJC0811A.pdf
Here is the Madison doctor giving a seminar about it: http://videos.med.wisc.edu/videoInfo.php?videoid=2221


Jaxon's latest head-bruise

Crash Boom Bang Brady!
(He has a cut on the other side of his chin from falling at the Packer party on Sunday)

Monday, September 13, 2010

Feeding Team Update

Let's start with the good news. Jaxon gained weight! He weighed 22lbs 9oz with his clothes and diaper on - that's almost a 1lb gain since he last saw the feeding team. We have no idea how he suddenly gains weight like this, especially when he's in full force vomiting and diarrhea mode.

The not-so-great news is that the feeding team doesn't want me to move forward with any sort of thicker liquid/food for feeding practice. They think his medical issues need to be addressed before moving forward. So I'll continue with speech/feeding therapist at the house weekly and just work on what we've been doing. Which hasn't been a whole lot lately since Jax has regressed since getting more pukey in the past few weeks. The Feeding Team-GI doc didn't see Jax today (which I thought he would, but apparently he wasn't scheduled to), but he'll he see him in 2 months, and then the Feeding Team 2 months after that. So that means the Feeding Team doesn't want to reconvene for FOUR months. That made me feel quite defeated. I mean... I understand, and I guess I'm not totally shocked, but it's still disappointing nonetheless. I left the hospital with Jax feeling bummed.

I saw Jax's regular GI nurse on our way out and she waved us down in the hallway asking how the Benefiber was working with his diarrhea (how often do people ask YOU that? :)). I told her it didn't work, so she's discussing it with the GI doc and calling me this week to try their next idea. I was happy to hear they had another idea honestly.
I briefly spoke to her about the story I saw online of the girl with the pace maker in her stomach and the nurse thought it was fascinating, but hadn't ever heard of any pediatric GI patients at hospital ever doing it. I will certainly be talking to the doc about that in two weeks.

Last night I went into Jax's room around 10:30pm to take him off his "dinner pump" and I could smell that he had diarrhea in his diaper. Remember, I was waiting to see if not going yesterday would mean a possible "firm up"? Well it didn't. So we had to wake him up and change him so he wouldn't sit in it all night, thus causing awful diaper rash. Well... waking him up on a full tummy caused an awful vomiting episode. We felt SO bad for him because he was sick for about 5 full minutes emptying his stomach. We got him cleaned up and changed and he went to sleep as if nothing happened (while I laid in bed in tears after what had just happened). Ugh... I hate this. Oh, and he had diarrhea again after falling asleep, so he still woke up with a diaper rash (despite all the Vaseline we had on him). Of course right? Oh the irony...

In funny news, Jason was with Brady at the house while I was at the hospital with Jaxon and he said that Brady poo'd in his diaper and then walked up to the baby wipe container, grabbed a wipe and pretended to wipe his bum. That kid is hilarious.

Sunday, September 12, 2010

Pretty Day

Half of the weekend was rainy, while half was sunny and gorgeous. We took the boys to the zoo this morning to get into the sunshine. The boys didn't want to stay in the wagon very long, so we let them out knowing we'd each be chasing a kid. Brady was pretty good at listening when we called his name and he understands that he has to hold our hand. Jaxon is a different story. He doesn't even act like he hears you when you call for him. So after so long with that, he was put back in the wagon hoping he understood why.

We took the boys to a Packer party at our friends Erin and Josh's new house. The boys had a blast with running around and screaming. They weren't sassy at all, but were very hyper and on the go non-stop. They sure had some energy!

Jaxon continues with the vomiting. We've kept him hydrated rather well, and I've been sneaking extra food into his other feeds to try and make up for it. I'm bringing him to the hospital for his Feeding Team appointment tomorrow, so we'll see what the GI doctor has to say. One thing that is different is that he didn't poo at all today. So we went from constant diarrhea each day to suddenly nothing today. I didn't give him his nightly fiber to see what we get in the morning. Maybe things firm up? Haha, gross, we'll see.

Brady continue to be his sweet self. He's the most loving little bean I've ever met. He LOVES to pretend to sleep in our bed. We let the boys play on our bed and watch cartoons on the weekends when Jason and I are getting ready. They think it's the neatest thing ever and jump around and dance. Well we keep finding Brady getting under the covers and putting his head on the pillows getting himself all tucked in like a big boy. It's pretty cute.


The boys were loving some leaves.

I asked Brady to show me his leaf and here it is!

Jaxon would not put his leaves down.

He decided to dance with the leaves and spun in circles...

... until he fell down.

The boys at the zoo.

Mama and Dada at the zoo.

Beautiful day watching the swans and ducks.

Jason put Brady to work pulling the wagon.



Brady got a bit too close to those peacocks!