Tuesday, June 29, 2010

Back to our normal

Jax seems to be back to "his normal". He only had one episode yesterday and one so far today, which is much better than the 3+ he was doing over the weekend. I've ordered the drug Domperidone and it's currently being compounded. We'll see if that helps him digest his food faster and avoid vomiting. I ordered a feeding tool (the Z-vibe) to help with oral feeding and have also ordered the next test kit for Jax's next round of alternative testing to re-look at his levels. We're doing everything we can possibly think of to help him right now. 
We're also busy with dealing with our basement (aka - war zone), a nice big hole in our living room ceiling due to a leaky pipe and planning the boy's upcoming birthday party. Busy busy!

How many boys does it take to figure out the problem with the ceiling?
(1 1/2 + 1 1/2 = 3)
Brady is such a big boy!
Jax was feeling extra smiley this morning...

Sunday, June 27, 2010

Weekend update

We're all home and had eventful weekends. Jay and I had a good time in Door County for a family wedding (Congrats Amber and Josh!), and the boys stayed at Rachel's for a sleep over. Well Jax was really sick and even had his tube come out. Poor Rachel and Dennis! They are troopers and forged through the weekend ensuring me repeatedly that everything was fine.
When we picked up the boys I reviewed Rachel's notes about Jax and realized that something wasn't adding up with how long he was on the pump, and how much he puked and how much food was still left over. When we got home I realized he had very little formula left (and I had packed double the amount he needed as a "just in case") and then it dawned on me... I wrote down his recipe wrong.... MOTHER OF THE YEAR! He was getting double the amount of powder in each feeding (I wrote 1cup instead of 1/2cup).
I called Rachel immediately and we were both so happy and relieved to think we had found a reason for the extreme sickness he had. So we'll see how he does tonight and tomorrow, and hope he comes back down to his normal 1-2 vomits a day. With the rate he was going this weekend, he would've ended up hospitalized by the end of this week, so I was rather upset for awhile before I realized my HUGE mistake (I'm really upset with myself).

Thursday, June 24, 2010

For the love of tantrums...

The boys had a nice visit with Uncle Adam yesterday and were spoiled to see their cousin Marley again so soon. Jax is still having episodes. They can be very random with skipping a day or now sometimes being twice a day. 
Brady had the worst temper tantrum I've ever seen him have at the end of speech therapy today. He was so upset that Jax got to hold the flash card that he ended up screaming for 20 minutes straight through Jax's feeding therapy. I tried playing with him, feeding him and ignoring him, but nothing would work. I finally just put him in his crib where he fell asleep within 5 minutes. So Brady got lunch at 2pm today when he woke up. Oh the joys :)

So the boys are going on their first sleep over to Rachel and Dennis' house this weekend while Jason and I go to a family wedding up in Door County. The boys will have a blast and probably not even miss us. Good luck Auntie Rachel and Uncle D! You are saints...

The boys playing outside with Uncle Adam.

Tuesday, June 22, 2010

Water damage

It's never a dull moment in this house! Our drain in the service room of the basement backed up which caused extensive water damage. A plumber was able to clear the drain, but the damage was done. We had an emergency restoration company come out and set up industrial dehumidifiers, fans and antimicrobial machines to clean up the area and keep mold away, while Jason tore out all the affected carpet. It looks like our home owner's insurance will cover most of the clean up and new carpet, so that's nice, but this sure is a headache and a mess to deal with.
In kid-news, the boys are doing well. Jax had a vomit-free day today, so that's always an accomplishment. Both boys have a chiropractor appointment tomorrow and they have speech and feeding therapy on Thursday. We've been in-and-out of the house a lot since the weather is a little too hot to sit out in for long periods of time, but we're trying to get into that sunshine as much as possible!

Half of the basement carpeting sitting in our garage - yuck...

Sunday, June 20, 2010

Happy Father's Day!

Happy Father's Day to everyone and especially Jason - the BEST Dad ever. We had a nice weekend at home, and got to be outside most of the time. We went to the Farmers Market on Saturday with a visit from Nana Letts in the afternoon, and we were out in the yard most of the day today with breaks for Jax since it was a bit too hot.
Jax had his one vomit yesterday morning and then two today. None were "bad", but no vomit is ever good either. Brady as usual is the big helper with getting us towels when it happens, he steals my heart!
I don't know about the lingering vomit... we'll see how he does this next week and continue to give this probiotic a chance before ordering the drug (Domperidone) the GI doctor recommends.

The boys at the Farmer's Market.
~Enjoying Daddy's gift~

Saturday, June 19, 2010

Lots of visitors!

The boys have been having a fun week. Nana and Bumpa came to visit on Wednesday and Marley and Angie came to visit on Friday. Their cousin Marley shares a birthday with the boys in the same week, so birthday parties don't always line up to visit so we had a little celebration between the kids. The boys are spoiled with visitors coming up as well. Nana Letts is coming today, Uncle Adam with Marley on Wednesday and then a sleep over at Auntie Rachel's next weekend while we go to a wedding in Door County. Summer is so much more fun than winter for us!

Jax has been doing pretty decent with his vomiting. He didn't vomit Wednesday or Thursday, and had a very small undramatic one on Friday. I'm wondering if the new probiotic (Coco Biotic) is helping him. I started giving him 2 tbsp a day since Monday and he was very upset on Tuesday and Wednesday with diarrhea. The woman I spoke to about the product said that the first few uses can cause an upset tummy/diarrhea because it's really cleaning out your system so to just pull back the amount until the system acclimates to it. So on Friday morning I only gave him 1 tbsp, and he had that one small vomit. I wonder if any of that is connected? So today I gave him 2 tbsp and I want to see if the vomiting stops again. We'll see!

**Update: Jax had a nasty episode this morning but he gaged on his fingers to trigger it. Let's hope for no more this weekend!

Nana and Bumpa playing outside with the boys.
Jax having batting practice.
Brady in his cool shades!
Marley and the boys with birthday presents!
Look at the cool Yo Gabba Gabba cake!
(9 candles for Marley's golden birthday!)
Reason #15 why we didn't refinish the kitchen floors once we found out I was pregnant...
~The boys got into their sidewalk chalk~

Tuesday, June 15, 2010

Giggly little guys

The boys tore apart the living room and then sat up on the coffee table (which was moved to the end of the room). I did a photo shoot with them and they were GIGGLING their heads off!

Jax found a sock and insisted I put it on his foot. It stayed on like this all day!

Chewing on fingers...
Ahhh yes, Brady at his finest with the double-nose pick!
Quick update: The boys have been pretty good. Jax didn't get sick at all yesterday, but he did this morning. He never goes more than a day without getting sick, but at least he does get a day break once in awhile!

Sunday, June 13, 2010

Rain, Rain, Go Away!

We had a rainy weekend, so outdoor activities were limited. We did make the most of it though! We went to a church picnic with Rachel and Dennis and had a good time. The boys were pretty good this weekend which always helps :)
Jax has been up and down with his vomiting. He didn't vomit on Friday and was good on Saturday until we took him off the pump (his lunch) in the car on our way into the church picnic. He got sick on himself so badly that Rachel and I took him back home for a quick bath and change of clothes and met up with the boys at the picnic. He got sick after his morning feed today while he was in his car seat getting ready to go. Jay and I have realized that Jax seems to get sick if he's finishing or just finished his food and we're on the go. The boys get REALLY excited to go "bye-bye" and we're wondering if the stimulation and excitement may be a trigger. I'm not sure, but we'll keep our eye out for it. I should be getting his Coco Biotic in the mail tomorrow, so I'm anxious to start giving him that.
Jax's g-tube randomly came out tonight. We let the boys crawl up the stairs to the bathroom for tooth-brushing and then they head to bed. Well Jax crawls up the stairs while attached to his pump because we just carry it and hold the tube. Well something must've knocked loose because after I brushed his teeth I brought him into the spare room (his room for the time) to put his sleep sack on him and I heard a weird bubbling noise and saw his pj's start soaking. I opened his pj's and saw the gapping hole in his stomach and said, "OH @$&#"!
No worries, it's an easy fix! I turned off the pump and Jason came in to hold Jax still as I pulled out my trusty g-tube kit from his backpack. Jax smiled and giggled as he got his brand new tube inserted - he's so sweet!
Brady has been cracking us up lately. He just laughs all the time! I've never seen a happier kid ever. When you say, "Let's go bye-bye", both kids shriek with excitement and Brady hops up, turns off the tv and grabs all four shoes for himself and Jax. What a helper!

Jax getting taller to reach his microwave buttons!
Jason and Brady dancing at the picnic.
Brady poking out Jason's eyes talking about body parts.
~Jaxon LOVES being on Jason's shoulders~
Brady ate non-stop at the picnic. It's hard to see, but Brady has a bruise on his cheek, and road-rash on his forehead and lip from 2 diggers within an hour. My clumsy kiddo!

Wednesday, June 9, 2010

Alternative doc consult

I had a phone conference with Jax's alternative doctor. He actually agrees with the GI doctor. He thinks Jax's system is stressed from that last virus and it can take a few months to clear out. He suggested that we increase the bifidus part of his probiotic by a 1/4 cap (he gets a half cap of three different probiotics currently) and to also add another probiotic called Coco Biotic (https://shop.bodyecology.com/prodinfo.asp?number=BE301S) which will help with digestion (slow emptying/volume sensitivity) and also helps to guard against a virus. He said the reason Jax never gets sick if "eating" while sleeping is because his body is totally relaxed and all his senses are turned off. He asked if Jax got sick if we went anywhere right after eating or if he's deep into play, and that's pretty much when he always gets sick. Any stimulation seems to agitate a full tummy lately it seems.

I asked how he felt about the drug Domperidone, and he said that it can be helpful in patients, but it can upset the stomach easily, so it may be tough for Jax's stomach. He suggested trying these probiotics before using the drug to see how he responds. I'm all for giving this a chance, so the product is ordered, and I've already increased his current bifidus.

I was happy to hear some consistency between the two doctors, so all we can do is follow the instructions and hope!

In other news, I'm so confused about Jax's walking. He cruises like a mad man with his toy walker or while holding onto things, but lately we can't get him to take steps between us anymore. It's been almost a week now where he won't take any steps. I received the letter I needed finally to submit to insurance to try and get more physical therapy approved, but I have no idea how long this will now take from Medicaid.

The boys had speech/feeding therapy last night and did really well. Brady pointed out Yanni (our cat) when the therapist held up a flash card of a cat and when we all said CAT, he said, AT... it was awesome! He also tried to put the flash cards of socks, shoes and boots ON his feet. That kid is just too cute. He still licks the flash cards of food which really cracks us all up, but only says MMMM instead of the word.

Jaxon is starting to hold his alignment again with the chiropractor, so I can start bringing him in only once a week again to see how he does (we were at 2-3x lately).

Jax coloring.
Brady getting caught chewing on the crayons. When I catch him, he pulls them away from his mouth and they end up on his ears as he pretends to not be doing it. 
He'll totally be that kid who eats glue...
Jax always points out his cousin Aidan in a family photo, it's just too cute.
He laughed SO hard when he pushed the photo over, but I caught the end with his big smile.

Monday, June 7, 2010

Daddy to the rescue

I have so much to update on, so I'll try to keep this organized and not ramble on.
Brady is doing better. He had a diarrhea blow out that was so foul, it put Jason and I into tears from laughing so hard. I mean, all you can do is look at the situation in disbelief and laugh about it. We're such nice parents, huh? Brady had a bit of a crying meltdown this morning which required some Tylenol and cuddles, but otherwise he's doing pretty good. Jax hasn't shown any signs of catching anything from Brady. We are done doing his "cleanse" and today he had a normal stool and one vomit.

I finally heard back from the alternative doctor's office today via email from his assistant. Remember I have been trying to contact her for two weeks now, and I must say that her long awaited response upset me terribly. I was told in one email to just have a conference with the doctor to review the supplements (yeah, this didn't answer my question) and the next email told me to feed Jax the BRAT diet (bananas, rice, apple sauce and toast) to help ease his vomiting and diarrhea. 
WOW... really? I instantly felt as if they forgot who Jax was and didn't treat him as a human, but rather a number. How could their advice to me be to feed this child food he can't eat? Why did I wait two weeks for this ridiculous and insensitive advice? They've known Jaxon for a year, and this was their advice to me? I felt cheated, insulted, disappointed and quite frankly, offended for Jax. It sent me into tears all morning, and I hate that. It's just that we put all our faith into these people to "help"... it's hard to explain.
Jason was out of town and realized how upset I was and he called the office to speak to the office manager. The doctor realized the mistake and said he didn't explain his directions properly to his assistant, so he apologized and scheduled a free consult with me on Wednesday to address all this vomiting that's happening. 

The GI nurse from Children's Hospital called me tonight to check on Jax, so some of humanity has been saved in my eyes :)

Let me think of something new or fun about the boys... oh, Brady had pizza for the first time last night, and of course he loves it. We never realized he never had pizza. I think we always made it after he was in bed for ourselves or something. He also had a McDonald's Happy Meal for the first time last weekend on our drive home from out-of-town. He had probably 2 of the 4 chicken nuggets, but liked the toy the most. I think it's funny he's eaten stir fry and risotto but not pizza or a Happy Meal.

We had fun with sidewalk chalk today.
Brady was REALLY into it with me.
(Jax was doing what he always does, walking with his lion 
to the neighbor's door and trying to get in.)
Brady is obsessed with the lawn mower. It will be nice when he actually can mow the lawn!

Friday, June 4, 2010

Back from the doctor

I brought Brady to the doctor this morning and she couldn't find any sores insides his mouth, which was surprising since he has one on his lip. Although she did find a white spot on the inside of his cheek that she was unsure of. He tested negative for strep throat, so we're at a wait-and-see. She knows he has some sort of virus, we're just not sure which one exactly. She said he may develop a rash or some blisters over the weekend, which would point to HandFootMouth Disease, but either way we just treat with Tylenol. He's responding well with Tylenol in his system, but he's cranky as ever if he's due for a dose!
We just have to keep him hydrated and only bring him back if his fever continues to Sunday. I think he'll be just fine, I just hope it doesn't cross over to Jax. Brady has had 3 viruses in the past 6 weeks, that's crazy! The pediatrician was playing peek-a-boo with Brady and said she had a major flash of Jason. I always say that! Brady makes these faces where you get this glimpse of Jason's face that's just uncanny! 
Jax continues his cleanse, and didn't get sick after breakfast again, but he did throw up in his crib during "lunch". So we'll see how the weekend goes!
~Have a nice weekend everyone~

Brady can reach over the counter now... and get to the cookies! I knew something was up when I had 5 seconds of silence. Jax is collecting them and putting them on the cookie sheet in the drawer of the oven while Brady eats them. My monkeys!

*I think Jax looks like Brady in his this picture. 
Brady is obviously the one eating the cookies in blue.

Thursday, June 3, 2010

Sore mouth

Poor Brady. He woke up from a 3 hour nap today just miserable. He was crying and holding his cheek. I realized he felt warm, so I took his temperature. It was 99.3, a low grade fever so I assumed he had a molar coming in. I got him some cold milk and pancakes for a snack. He wanted the pancakes so bad, but every time he tried taking a bite he screeched in pain. He spit everything out and screamed with big alligator tears. I cuddled with him on the couch and that didn't help, and when I touched his cheek, he about jumped out of his skin and had a meltdown. I've never seen either boy react this way with "teething" and they have tons of teeth.
I called the nurse to ask her opinion, but before she could call me back, his temperature went up to 101.4, so I figured something was up. The pediatrician always told me that teething-temperatures don't go past 100.
I asked my MoM friends what they thought and a large number thinks it's the Coxsackie Virus (Hand, Foot and Mouth Virus - which was what the doc originally thought was the last virus Jax had, but he didn't), and a small number thinks it still may just be a nasty molar coming in. Well we did notice a small sore on Brady's lip a day ago, but assumed he bit it. I can't get a good look inside his mouth without him freaking out.
The nurse called back and gave us an appointment for tomorrow, but said if we couldn't get him calmed down by bedtime to bring him into Urgent Care (the pediatrician's office was closed at this time). About an hour after Tylenol, Brady calmed down. He took a few bites of a bagel and drank some milk and passed out. That was three hours ago, so we'll see if he needs more rounds of Tylenol through the night. I hope that when he wakes up he has no more symptoms and that it was just a molar coming in, but if you saw him today, you'd never think a molar could be this bad.... we'll see!

Jax had speech and feeding therapy today. He did really well having speech all by himself. He stayed on each activity much longer than usual. He did well with learning the baby doll's body parts and he even fed the baby doll a cup of water. He didn't do great with feeding, but that's always a touch-and-go sort of thing.
His "cleaning out" is going decent. He didn't have a morning vomit for the first time in about 10 days, but woke up early from his nap and had a bad vomit from his lunch just finishing. I was able to get him out of his crib and onto a towel on the floor so only he and I took the brunt of it all (I hate changing and washing everything in the crib). Otherwise the day went well for Jax.

So let's all hope there's not another virus running through this house, I just can't imagine what it would do to Jax right now, and of course watching Brady cry in pain brought me to tears. My poor peanut pie.

Wednesday, June 2, 2010

GI appointment update

I was able to get Jax into the GI specialist at Children's Hospital this morning.  I actually got a lot of new info today that I wasn't expecting. I thought for sure the doc would say it's reflux and to feed Jax smaller meals more frequently and just set up an appt to have a surgeon look at his stoma site (the feeding tube hole in his tummy).

Well the doc actually does not think Jax is displaying typical reflux. He thinks it's a stomach emptying problem from the virus he had last month. He said that kids with weakened GI systems tend to have sensitive stomachs for a few months after bad viruses like that. He also wants me to "clean" Jax out with laxatives (I have a natural one) for the next two days since Jax showed a lot of stool on an xray while inpatient last month. He said that children will sometimes exhibit "diarrhea" when they're constipated and the fluid is just moving past the solid poo (sorry for that description).
So my plan of action is to try and flush out his system for the next day or two and see if that helps his tummy, and if not, then he wants to try and get the drug Domperidone into him to help him get thru the sensitive tummy. This drug is illegal in the US, but not in Canada. The reason it's illegal is because it caused heart issues with some elderly people and it was shut down. This drug is safe as long as a doc is compliant with treating proper candidates. I actually heard from a lot of my online MoM friends who have used it or are using it for laxation. None of them had any side effects, and the drug isn't supposed to cross the brain barrier like Reglan does. Which brings me to total confusion as to why Reglan is legal... I don't get it. I've wanted to try this drug since Jax was in the NICU, but we thought we couldn't get it, well my doc has finally found a pharmacy in IL that can compound it. This drug is used to help with vomiting/nausea in patients who have slow emptying stomachs and that sort of thing. (sigh... we'll see)

Ok, the bleeding of the stoma site is not good. The doc does want me to make an appt with a surgeon to have the hole reviewed to see if we can keep it, but in the meantime, the doc wants me to mix up Carafate (pill) w/ water and cover the bleeding part 3x/day. He thinks it's an ulcer or at least something that's irritated enough to need this cream put on it to protect it.
Jax's weight was decent. Almost 22lbs, which for his height (close to 31") shows an almost perfect ratio. The doc didn't really like that Jax wasn't independently walking yet since he's been cruising on his feet for over 4 months, but I didn't know what to tell him other than PT thinks his right side is weak from the torticollis and we're fighting with insurance to get more PT sessions.

Jax of course got sick and vomited all over himself and me while leaving the doc's office and the nurse said, "this is a crazy way for you guys to live, I hope you can get that drug". Hmmmm.... I'm not sure how I feel about it since we're trying to remain "drug-free". I've tried contacting the holistic medical facility three times via email in the past week, but haven't heard back. I'm thinking maybe my email contact (Dr. Hicks' assistant) may not work there anymore or has been on vacation, so I'm going to call tomorrow.

I should say that I left the doc's office feeling hopeful. If his "opinion" is correct, then Jax's vomiting should shut off again at some point. Oh I hope he's right. He told me to keep my chin up and to keep forging through.
I just hate that all GI issues with kids seem like trial and error. You never truly feel like anyone REALLY knows 100% what is wrong or how to fix it or whatever. It's always a game of roulette and hope...