Tuesday, August 31, 2010

NO AC, boo!

Just a quick update. Other than our AC going out (can you say muggy?) things are going okay. Jax has gotten sick each morning, and still has diarrhea despite the added Benefiber so far, but we're still trying. I'm still waiting on his last lab results as well.
We have a busy week of appointments the next few days with chiropractor, allergy testing, physical therapy evaluation and speech/feeding therapy. I think it will make our week go by quickly.
I can't believe I forgot to mention about our kitty cat Yanni! We found the perfect home for Yanni last weekend. Miss BJ (Auntie Sidney's mom) has taken him for us. He will get all the attention he could ever want without the harassment of these crazy kids. We'll miss him, but will visit sometime!

Sunday, August 29, 2010

Swimming!

The weekend was pretty fun for all of us. We took the boys to Dennis and Rachel's pool on Saturday, and Nicole and Evan were there! Jason and I got to eat and relax out by the pool while the boys took their nap, and we went in the pool with them when they got up. Jax was loving the pool, but Brady wasn't feeling it. We realized that he was tired from his nap (Jax's pump alarm woke him up early) he rubbed sun block into his eyes causing his eyes to turn bright red and make his nose run and cry a little. Poor monkey. Once we washed it all off, he sat in Rachel's lap for over an hour grazing food off her and happy as could be. Jax would've stayed in the pool all day if we let him. We're thinking of joining the YMCA this fall/winter and getting the kids into swimming lessons and other programs. I'd love to have a place to run them around in the winter. Any suggestions out there for toddler Y-programs?

I spoke with the GI nurse on Friday evening, and apparently one of Jax's stool test came back with a score of -1 meaning he wasn't completely metabolising fat (thus causing diarrhea). The doctor thinks the fructose in his formula may be an issue for him, but there is no decent alternative for him. So we're trying to give him some Benefiber each day to see if it helps. This is a two-week trial. We're still waiting for one lab result to come back and the nurse expects to be calling me around Tues/Wed for those results.

The speech therapist was able to get Jax to drink a decent amount of milk from a cup. He (our therapist) is suggesting we start putting Carnation Instant Breakfast packets (less sugar than Pediasure) into his milk and really push this method of consumption. Jax is not liking food/liquid off his spoon lately, but seems very receptive to the cup.

We picked up some Carnation Instant Breakfast today and Jax LOVED it. He drank a decent amount (which to use like a half ounce). I'm putting his fiber into this drink (it clogs his pump lines) and it worked decent this evening. If we can get him drinking full meals, we can use his pump less and work on eating solids. That's one step closer that we're certainly working on. Baby steps.


Jax thinks he can just crawl up our pub-height chairs and sit at the table.
(Accident waiting to happen...)

Brady LOVES our old broken laptop.

Jason and Rachel with the boys and Evan in the pool.

Look at sad Brady!
He loves the pool, so we knew something was wrong.

Wednesday, August 25, 2010

Finally some weight gain!

Jax had a good appointment with the feeding psych on Monday, and the best news is that he GAINED WEIGHT! Finally we see some improvement and he broke 22lbs! I think the extra calories from his pudding smoothies may be helping a little bit. His vomiting is yo-yoing (is that a word?). He'll go for a few days, then take a few days off. He still has nasty diarrhea of which we're waiting for the final test results to come back. He had one semi-normal poo yesterday - his old usual liquid that was not water. I hope it's a sign that maybe the diarrhea is slowing down. I'm not sure, but we can hope! I can't wait for the diaper changes to slow down! The docs say it's either still lingering effects from a virus he got in April (when the whole relapse started), something else is wrong (an unknown disorder we're testing for) or he's not tolerating his formula. Time will tell...

The boys have been working hard on their animal noises and some signs. We've been enjoying this sunshine and mild temperatures!
In fact, we're on our way out for a walk now! The boys will be so happy to wake up to see Jason tomorrow. He gets back from a business trip late tonight, yay!


I love finding a kiddo reading a book all by themselves...

Sunday, August 22, 2010

Elephants!

We finally made it to the zoo on Saturday since we were rained out on Friday. We ended up ordering pizza in at the house with cousins John and Amy. The boys had a blast crawling all over them. We had a nice time all Saturday morning at the zoo the next morning. We stayed around the yard all day Sunday and just spent the day in the sun.
Jax has a feeding consult with the pediatric feeding psychologist tomorrow morning at Children's Hospital. I'm hoping to catch another stool sample to drop off while we're there. The GI nurse called me and asked for one more sample for another test they want to run (she purposely didn't tell me what the test was for).

Our experiment to see if Jax would stop vomiting if we gave him his old calorie recipe seemed to work well for 3 days and now he's back to vomiting about once a day. We're stumped. I'll discuss this with the dietitian at the appointment tomorrow.

In fun news, the boys each do the sign and sound for ELEPHANT. How random? And that they BOTH do the same two animal sounds. When we were at the zoo we saw a big elephant and Jason pointed and said the word. Suddenly Brady made the sound and did the sign - AWESOME! They've both been consistently doing a moo-ing cow and an elephant all day. I can get Brady to sign DOG once in awhile, but he won't say "WOOF" yet. It's so neat to see some development!


Jax hamming it up on Amy's lap.
You'd never know that Amy is about 8 months pregnant with Jax covering her belly!


Jax being silly by the monkey cage with me!

The boys lookin' at fish!
I think Brady says "shhh" for fish.

We each took a boy on the sky tran over the zoo.
They LOVED it! They waved to everyone and they were SO good!
Here's Jax and I (Jason took the picture from the cart behind us).

Brady riding with Daddy!

Look at all the leaves on the ground during a warm sunny August day!

Having fun in the kiddie pool.

Jax took Brady for a ride and dumped him in the lawn.

Jay gave the boys a ride on the neighbor's trampoline!

Friday, August 20, 2010

Hoping for the zoo

Today will be busy. I'm bringing the boys to Children's Hospital for Jax's follow up with the surgeon to review his stoma site. I'm hoping to "catch" a stool sample from Jax since we'll be at the hospital to drop it at the lab. I've been waiting for his bum to heal enough to stick a bag to it. Needless to say, he is NOT happy about a bag stuck to his bottom this morning!
The boys did well in speech/feeding therapy yesterday. Their receptive is coming along nicely, but we're still working hard on actual speaking words. They will repeat a word back if said repeatedly during an activity, but it's not very clear or said unprompted. Think of it like, for the word BALL, they'll say BA. And of course our favorite, "MMMM" when asked what a cow says. Brady is doing better each week with sign language. He signed "eat", "more", "baby", "dog", "fish" during therapy - but only when prompted. It's nice to find a way for them to communicate until they're able to speak on their own. But we're working on it! Lots of songs, books and activities!

If the weather holds out, we're bringing the boys to the zoo after their nap to meet up with cousins - John and Amy! That will be a lot of fun, especially since it's Zoo A la Carte this weekend, so lots of yummy food!

Wednesday, August 18, 2010

Jump, Jump!

The boys have been practicing how to jump and dance lately. They're getting the dancing down, but so far the attempts at jumping is just fun to watch. They squat their butts down and pop up, but don't quite get how to jump. Jason and I like to throw out some old school rap songs to get them waving their hands in the air and trying to jump. Yes, 90's rap is culture in this house.

Jax's diarrhea is persisting along with his vomiting. We are definitely making headway on his diaper rash. I'm hoping we'll be able to get a stool sample to the lab on Friday since we have an appointment at Children's Hospital Friday morning with the surgeon to review Jax's stoma site (which looks really good by the way). We've also decided to cut Jax's calorie mix back down to the original recipe to see if that helps his vomiting. We shall see!


Brady stuck inside a toy. Yes, I grabbed a camera before helping him...

Jax loving the camera.

Jax thinks it's funny to push Brady down the slide... hard.

Sunday, August 15, 2010

Batter up

Our weekend was nice and sunny. The boys got outside in spurts to enjoy it without getting overheated. Jax has continued vomiting, but he hasn't had anymore of the scary episodes, so we're thankful for that. His butt is getting better finally with a lot of TLC and attention.
I spoke with the GI nurse early Friday evening and we discussed some of the lingering matters.
In regards to the diarrhea, she said our GI specialist does not think Jax has a Sucrose deficiency since his formula doesn't have any in it, but it DOES have fructose. Our plan is to get another stool sample (as soon as his bottom is healed enough to get a bag attached to it) into the lab for 2 more tests. The doctor said that if those tests come back negative/normal, then we're going to switch Jax to a different formula (a lactose-base) for a short time to see how he responds.
So that's the plan, and while it doesn't promise any solutions, it's at least searching for answers and trying different things. Obviously this could all still be the lingering affects of a virus, but we certainly have to look for other reasons when it's been going on now for almost 4 months coupled with weight loss.
Both the boys are improving with their receptive language. They are understanding things more and more each day. Brady did sign language for DOG and BABY during therapy on Friday. The boys sure do babble a lot in their turkish-twin-baby talk!


Jax and Jason hitting balls out to Brady in the outfield.

Batting practice!

Wednesday, August 11, 2010

Reports

It's more of the same for Jax today. His bottom is still pretty tore up, although I didn't expect it to be better immediately. I hope to see improvement by tomorrow. He vomited after his breakfast and lunch today, but neither were the nasty choking episodes, so I was thankful for that. I scheduled Jax's allergy testing at the hospital, so he'll be getting that checked out the first week of Sept. I just realized I have to go over appointments with Jason when he gets home because there are a lot over the next 2 months. There is a surgeon consult, feeding psych consult, allergy testing, feeding clinic, eye check ups, GI check up and that doesn't include the weekly therapy and chiropractic meetings. I've also been told that Jax's insurance did not approve his continued PT through the private practice, so we'll be starting PT back up through our state's early intervention program - Birth-to-Three.

I received the full report from all the physicians at Jax's feeding clinic evaluation. It's very humbling to read the 13-page report. It covers Jax's extensive medical history and then each doctor's findings and observations from our day. It goes into detail about Jax's global developmental delays. His fine motor skills were that of a 15 month old, visual motor skills were the age equivalency of an 18-month old. I found it interesting that they actually graded his height as a 15.5 month old and his weight of a 10.5 month old. But that his height-to-weight ratio wasn't too far off.

The GI doctor's notes bothered me a bit. His notes stated "suspected mild mitochondrial disorder". Now I know Jax's regular GI specialist has always said this, but it's hard to read in black and white on a medical record. He also stated that he suspected Jax's chronic diarrhea was a recovering symptom from his viral infection (that caused all the vomiting starting back in April) but if it continued, he would be a candidate for an upper endoscopy and/or colonoscopy. He was officially diagnosed with a Feeding Disorder, which was well known by all of us, but you have to get the official diagnosis from a clinic like this after a full review.
I don't understand everything on the report. There's a lot of test scores that were dependant on my answers from a 20-page questionnaire. From my answers, they gave Jax an overall development score of 13 months (when he was 21 months, 19 months adjusted). These items all showed elevated outside of normal limits:
* Observable meal time behavior
* Child hunger/satiety cues & coercive interactions
* Parenting Stress Inventory (parental distress was normal, but all remaining subscales including defensive responding indicating possible over reporting of symptoms) - WHAT the heck does that mean? (sigh... I can't win)

I wish I didn't get this report right now. I'm so emotional and tired this week, so of course it sent me into tears. I'm glad Jason gets home tonight...

Jax loving his slide.

Brady feeding his stuffed moose some play food.
The boys sat to color and I thought it was so cute that a baby doll was sitting with them too.
The speech therapist left his baby doll behind by accident, so he's a guest at the table this week.

Tuesday, August 10, 2010

Notes to the nurse

Jax had a rather nasty episode today. It was awful. He was also up half the night last night until we realized his butt was in pain from the diaper rash. He had some diarrhea (which is odorless at times) and it was touching some open sores. Once he was changed with a lot of rash-cream smeared on, he was happily sleeping. I called the GI nurse and spoke to her about the following items:

* Talking to the GI specialist about a possible Sucrase-Isomaltase Deficiency which could be causing the diarrhea. Baby Grant suffers from this which causes chronic diarrhea, so I thought it should be discussed. In the simplest description, it's an issue with breaking down sugar.

* How I should go about getting Jax tested for environmental allergies. I need to call our pediatrician and see if she can perform it, and if not, then call Children's Hospital to set up an appointment.

*Jaxon's diaper rash. Thankfully the nurse called in a prescription cream that is made by a GI specialist. I put it on him this evening after a baking soda bath, and also put baby powder inside his diaper so the cream doesn't absorb into the diaper. I'm interested to see how his bum is in the morning.

*The recent episodes. I get worried when Jax has these violent episodes where formula pours out of his nose and he can't breathe. He gets wild and it's the scariest few minutes until he can clear his airway. The nurse talked about possible aspiration and said she'd discuss that with the doctor as well.

I had a hard time today. I think it's because I'm tired and am in need of a full night's rest, but I was rather upset all day. Jason is out-of-town for work until tomorrow night, so I pray Jax doesn't have a bad day tomorrow.
So we were wondering if pet dander was triggering Jax's GI issues, and then Jason brought up that I refilled Jax's vitamin D again and maybe that was it... I realized that we fall over ourselves time and time again trying to find the REASON WHY this is happening. We search and research and think and finally I threw my arms up today and said, "Maybe it's because he has a GI disease and we just refuse to accept it!"
I'm mad at myself for saying it. I had a moment of weakness while sitting on the floor with Jax and Brady (who got me all the towels) covered in vomit and Jax squeezing me trembling.
I feel so bad for Jax, and my disappointment gets to an all-time high when he starts to get sick again. He only had a 16 day break from vomiting and now I feel like he's getting sick all over again. It's like he has the flu every.single.day. He refuses to do any of his feeding practice beyond water when the vomiting comes back. All of our steps forward get swept away. (sigh...) Enough of that... we'll do what we can and take each day as it comes.

In silly-kid news, I had a 30 minute window today to run to the mall to grab a card and gift for a friend. I got to the mall with the boys and realized their stroller was NOT in the vehicle. OH YEAH, Jason took the stroller out to transport a Rug Doctor to the house to shampoo all the couches and carpets yesterday. SO, I walked both the boys into the mall. I ran into a store and grabbed a gift card quick and the boys each wanted to grab everything and walk in opposite directions. A woman with her son was behind us and was chuckling. I told her my stroller was left at home and she couldn't stop laughing. Sure enough, Brady tugged on her pants asking to be picked up. Oh that kid! She asked if she could pick him up and that's how I got through the check out line... a stranger holding Brady cooing over him.
Then we ran into the card store which was EMPTY. The ladies in Hallmark LOVED the boys up with books for 5 minutes while I grabbed a card. So apparently I need complete strangers to distract my boys if I don't have a stroller. Note to self: Always check for the stroller!

Monday, August 9, 2010

Must love dogs...

The boys had a pretty fun weekend. Rachel and her pugs came and stayed over Saturday and Sunday morning, and the boys had a BLAST with those dogs. They just love each getting a dog to drag around by their leash, and Brady is obsessed with "hugging" the dogs. We took a long walk to Copps on Saturday for some lunch and to let Jax try a milkshake. He tried a few tastes and was fine with it, but really only wanted his water.
On Sunday morning, Jax had a nasty vomiting "episode". It was one of his full-out shaking with multiple retches and it came out his nose. Poor little guy. Rachel brought up the fact that he seems to have these episodes when she's around, so we're thinking about getting Jax tested for a pet allergy. I think it's a long shot, but it's in my head, so you know I have to have it tested or at least discussed with the doctor. We have a cat at home, so who knows, worth looking at to at least cross off our list.
His diarrhea is still pretty bad, and now his bottom is rather tore up. I think I'll be calling the pediatrician if the rash doesn't show improvement by tomorrow morning.
We took the boys to the State Fair late Sunday afternoon and they seemed to really enjoy it. They didn't have meltdowns requiring to be taken out of the stroller, so that was an accomplishement! We did however have to give them every possible cup, straw, whatever to play with after the exciement of people watching wore off. We were there for over 2 hrs, so I would say it was a success!


Eating at Copps during our walk on Saturday.
I think the pugs must be down by Rachel's legs!

Brady terrorizing, I mean, running with a dog around the kitchen island 100 times.
Brady hugging a dog.

Brady loving the dogs...
This pretty much happened for 24 hrs.

The boys and I at the fair!
Mmmmm corn on the cob...
Notice their bare feet... the fact that we didn't lose any shoes was a miracle. We picked up their shoes about 5 times (they started a neat game) and finally we took just took their shoes from them!

Friday, August 6, 2010

Some test results

I wanted to update yesterday, but was waiting to hear back from the GI office with some test results. So far everything is negative and normal including Celiac Disease and the food panel (blood tests). Whew! I was confident about these, but still a little worried. All but one of the stool sample-tests came back and I have to get one more sample in. So we'll have to get results of two more tests - I don't know what they're for, and quite frankly, I like it that way. I get worried and go google-crazy until results are in. I'm hoping this is all just viral-related, and nothing untreatable is found (cross your fingers too)!
So I have to "catch" one more sample of his diarrhea and get that to the lab. I want to wait until his latest diaper rash has calmed down a bit before taping a bag to the area. His poor little bum has really flared back up again. We gave him a baking soda bath last night, although we're not sure if it helped much.

The boys had speech/feeding therapy today and did well. The therapist is so happy to see their progress. They still sound like babbling fools to everyone else, but we see improvement big time over the past 2 weeks. They will mock what you say at times, like Jax was trying to say BLOCK when I repeated it while taking out the blocks. I'm hoping we can take them to the state fair this week and go see all the animals and make their sounds.

Poor Brady has a big fat bloody lip from falling down yesterday. I couldn't find the source of the blood at first and was so scared he knocked a tooth! But I realized it was his lip and got the bleeding to stop. Then he swelled up and looked sad. The busted lip and his runny nose make for a miserable lookin' dude! He's still his sassy self trying to bite Jaxon every time they wrestle. He nearly took off poor Jax's toe. I tried explaining "karma" to him, but something tells me he didn't understand...


Tuesday, August 3, 2010

Appointment Update and MMM says the cow!

Everything went as expected at the GI specialist appointment, although Jax still hasn't gained any weight even with the extra calories, so we're doing a bunch of tests to see if we can find an answer for this chronic diarrhea. We got some blood samples done, and now I have to somehow 'CATCH' his watery diarrhea in bags taped to his bum. I got some this morning and plan to drop it off at the hospital after nap time, but something tells me it's not nearly enough for all the tests they want to run. I'm not going to lie... taping a bag to Jax's bum-hole and then getting it into a collection cup was pretty nasty this morning!

The GI specialist is testing his blood for Celiac Disease (which we've already tested for, but he wants to re-check now that symptoms are presenting), a full food panel and then checking his stool for things I'm not knowledgeable about (Reducing/Non-reducing substances, Qualitative fat, a1 Antitrypsin, Elastase).

The doctor kept asking me if Jax's feeding-practice ever included wheat or gluten, and while I'm sure he's gotten some gluten once in awhile, I don't see the quantity consumed doing this to him (he has a formula that's diary-free, soy-free, gluten-free etc). He only "tastes" things and not consistently. He's had diarrhea during weeks without ANY feeding practice, but we did the tests anyway to just make sure. We'll see how all that goes.

On a good note - the psych-feeding mtg went great. Jax did wonderful with her and our job is to keep increasing his pump-rate to get his food in faster, so he has bigger breaks off the pump for feeding practice (allow him to actually get hungry). So our assignment is to work on that. He'll see the psychologist again in 3 wks, and then 3 wks after that we have our big re-assessment with the entire feeding team again.
Jax was taking 3hrs to "eat" his meal (9oz of formula) when he got that virus in April, and now we've got him down to 2.5 hrs already, so we're slowly but steady getting him to a normal amount of time to consume a meal.


Jax has had a runny nose since Sunday now and vomited after his breakfast this morning. (sigh...) We're hoping the vomit was from gagging on some congestion... we'll see...

In development news - the boys say MMMMM when you ask them what a cow says! It's adorable. Brady is loud and proud, and Jax is quiet, but they certainly say "mmmm". I can't wait to tell their speech therapist on Friday morning.

Here are some pictures from playing at a playground the other night:


Jason kept shaking the bridge so the boys couldn't stand - such a nice Daddy!
They of course thought it was hilarious.







Sunday, August 1, 2010

Sharp teeth and memory lane...

We have a toothy little monster named BRADY. He has been biting Jaxon suddenly and it's pretty bad. He bit Jax a total of 5-6 times in the past 3 days and he drew blood twice. As soon as you hear them fighting, you have to SPRINT to them because you know Brady will be biting, and HARD! So please... bring on the advice!
The boys are covered in scrapes from falling down and fighting, along with mosquito bites and now nasty BITE MARKS! They're both pretty much big hot messes right now.

Tomorrow is a GI follow up for Jax with a psych-feeding session afterwards. Jax is still doing great with no vomiting, but he's still battling with the diarrhea. I'm hoping we'll see a little weight gain tomorrow.
The boys made quite the scene at the Baby Gap outlet store on Saturday. I had two friends with me, and it was still chaos! I would've totally made millions if it was filmed! I was mortified... oh yes, the terrible twos have begun!


Pictures of the boys at Krista's house.

Jaxon loving her piano while "eating his lunch".

Brady enjoying a snack at his table.

Brady helping with the vacuuming.

We took a walk on a trail in Waukesha. Jason shot this with his phone on a bridge.



I downloaded the pictures off of Jason's phone for that last picture above, and I found pictures from the past two years that really tell a story. I thought I'd share:

Jaxon in the hospital getting his first g-tube from the NG tube he got in the NICU.

Brady in his car seat.

I starred at these next few photos for a LONG time. I knew Jason took pictures of this, but I never went looking for them or downloaded them until today.

This is Jaxon during his motility study.
The screen on the right shows his nerve function activity in all the different areas of his GI system from a probe that is through his stomach and down his intestines. He has an IV because they put him under general anesthesia to place the probes.

We sat in this room for 8 hrs for the test. He fell asleep once and the nurse pushed us out of the room to get some food. We were told a few hours later that he had Pseudo Obstruction and would most likely live out his life on TPN... a shortened life, but we had to start thinking of his comfort.

This picture is quite the memory. Jaxon had a massive relapse from the stress of the motility test and ended up hospitalized on TPN. Jason and I were devastated thinking that it was the beginning of the end. Here we are with the boys trying to make them happy in Jax's hospital room... and I've started my first step of researching alternative medicine. I'm reading a pamphlet on medical acupuncture thinking this can't be our only fight...


Enough of that...This shot just makes me SMILE! Chubby Brady on Jason's shoulders at the zoo. A funny side note... the boys are still wearing those clothes from last summer, this summer!

This is Jason's creation. He likes to screw with Brady's hair when it's longer. And yes, we're in public in this picture... actually in a restaurant!