Sunday, June 28, 2009

First Haircuts

The boys had their first haircuts this weekend. Nana Jayne came down and gave the whole family a cut. We didn't get outside in the beautiful weather nearly as much as we wanted or should have, but we just had so many things to get done! Running errands can really take up a day. Next weekend we plan to be at Rachel and Dennis' pool, so they'll get plenty of outside time over the next week. 

The boys showed us just how important their naps can be. WOW, lets just say that Jason and I were not able to enjoy Sunday brunch out together! And you can't "discipline" an 11 month old baby who is overtired. So Jay took him outside until he fell asleep, while I battled Brady inside with his need to shove entire crackers into his mouth and gag so loudly that a couple came over to help me...I swear we would be reality TV gold.

I took the boys shopping at the outlet stores in Johnson Creek on Friday (they need clothes for their big 1 yr photos next week) and they were absolute beasts for an hour straight until I finally got them to sleep. My gosh they have their days! And those are always the days when every stranger in the store wants to talk to you about the twins while they are screaming and you don't know how else to get out of the store other than just keeping your head down, not making eye contact and walking quickly!

Jaxon's first cut.
Brady's first cut.

Friday, June 26, 2009

Army crawl

I just wanted to give a quick shout out to Brady! He is officially army crawling. Mainly chasing the cat, but he's doing it! When I put him up on his knees, he laughs hysterically.

Wednesday, June 24, 2009

Labs are done

We were finally able to get Jaxon's blood drawn to finish up the final lab that needs to be done for the holistic medical facility. It took 2.5 hrs at the hospital with everything that needed be done. It only took 2 lab techs and myself to hold Jax down, while a nurse walked Brady around the hallway. Thank goodness that's done with! Now we play the waiting game for all the results to come in so we can have our plan of action. Jax has his next round of acupuncture tomorrow, we'll see if it continues to help.
Other than that, I've been trying to figure out fun things for the kids to do without being out in the bad heat. We had a heat index off 100 yesterday! Brady is making the "mmm" sound, but no mama of course and Jax is making the "ddd" sound. Now that they're both babbling, it's hard to tell who is who sometimes when I'm in the other room - always makes me smile. They both love to clap and it makes the other laugh hysterically.
Jaxon still has his episodes on average about 10 times a day. He sleeps well from 7pm-4:30am, but then falls apart until you get up with him. Brady is an early bird now too with being up by 5:30am, but it may be because he hears things stirring in the house. Either way, we are up super early everyday and get more done by 7am than most people!

Sunday, June 21, 2009

Happy Fathers Day

Happy Fathers Day everyone! We spent the weekend at Okauchee Days; a festival about 20 minutes from our house where Jay played in a softball tournament. The boys love being outside with all the excitement, but it sure was HOT outside! Jax doesn't seem to handle the heat so well, and seemed to be having many more vomiting episodes than usual, so we came home to get him in the air conditioning. He did better outside on Sunday when it didn't seem to be as hot out. 
We had such bad storms on Friday night, that our street flooded out again. You may remember the bad flood in my blog from last year at this time. Well we didn't flood that bad again, but our street was closed down again with water only sitting at the bottom of our driveway rather than half way up this time.
I realized when I was uploading photos for this post that I didn't have any pictures of Jason with the boys! I noticed the camera battery was dead when we got to the park this morning...darn it! Just like Mother's Day...no photos of the parent with child for said day. OOPS :) But here are a few of the photos I did get...

Brady showing us how fun it is to feed him now.
Brady chillin' in the shade at the park.
Brady with Mama.
Jax finally perked up once in the shade of the beer tent.
He is also showing his love for cups. (He loves any kitchen bowl, spoon, cup etc)
Brady and Craigers!
Jax having a great time Sunday evening and bonking crabby Brady on the head!

Thursday, June 18, 2009

Quick Update

The boys are doing well. They have good nights and bad nights, and sometimes go on nap-strikes during the day, but all-in-all they're doing good. Jax is keeping up with his OT, PT and chiro with all good reports. 
Brady is finally liking table food. He likes spaghetti and macaroni and cheese a lot! He eats crackers and other snacks like a pro and is starting to understand his sippy cup a bit. Jax is starting to use consonants in his babble! It's so amazing how they change by the week.

The boys being silly before bedtime.
Brady "helping" with laundry.
More silly boys.
Brady loving those crackers!
My little trouble makers!

Monday, June 15, 2009

On the go!

We had a busy weekend. The boys had a lot of fresh air, that's for sure! Saturday we went to Thiensville to watch Jason play softball. The weather forecast said it would be cloudy and 60's. It ended up being sunny and 70s! We were warm in our jeans. We went to the festival at the park in between games and let the boys swing away in the swings. Then on Sunday, Janice brought Anesah and Aidan down to visit the zoo with us. It was Anesah's 7th birthday, and Denise and her son Brad also came along. It was a beautiful day, and we ended the trip with a train ride through the whole zoo.
The kids seem to sleep better after a day outside in the fresh air. Brady has good nights and bad nights which are very random. Jaxon seems to be keeping very regular with getting up around 4:30am with vomiting and pain. Once you bring him downstairs and change him, give him meds and change out his bag, you can usually get him to nap in the swing for an hour while you sleep on the couch, or until Brady is up. His vomiting is back down to normal, and he just finished up his last dose of antibiotics. Hopefully this will be his last round. We're waiting to hear from the holistic medical facility with his stool/urine results for a course of treatment. We're anxious to hear what they think and prescribe. Now that this last round of antibiotic is done, we'll work on getting his blood sent out to the lab for the last test.
I'm still waiting to hear from Children's Hosp for when they want to test his thyroid and the VIP test. I know they're waiting to hear how the antibiotic does, and to have it out of his system. Maybe they'll wait for his next GI visit which is in 2 short weeks again already.
In other news, Brady is on the move. He refuses to crawl, but sure does find a way to get to where he wants to be. It's getting so hard to keep him away from Jaxon's tube. I swear I have at least one heart attack a day jumping at him to get him away from it. He's also now feeding himself snacks with his pincher fingers and just loving it!
Jaxon's front tooth is starting to peek thru his gums. His teeth are just popping up everywhere now.

Just a Jax photo.
Janel and Brady at the zoo Friday afternoon.
Brady feeding himself like a big boy.
Brady's face after eating some of Jason's snow cone!
Boys on the swings.
Jaxon stripped down after the zoo on Sunday while I change out his backpack. 
Notice his favorite toy...measuring spoons! He swings them around like numb chucks!
Brady finding the stereo wires.
Ha! I covered it with a blanket!
Foiled. You can't turn your back for one minute!
Boys in front of the house on our way for a walk this afternoon.

Thursday, June 11, 2009

Tiny Pet Groomers

This is too cute, not to share. If anyone out there needs their pet groomed, these little men are ready for the job! They work for cheap if you promise to disinfect their hands for me when they're done :)

Jaxon is just going to town! I think Yanni has a bald spot now...

Tuesday, June 9, 2009

One-on-One time

Things at home are pretty normal. Brady is refusing to be in his crib and seems content sleeping in the bouncy seat for some reason. I was starting to wonder if he had an ear infection with all the crying he does in his crib, but he's flat on his back while playing and seems fine. The boys like to laugh at each other now. There's nothing cuter in the world. They enjoy being in the yard as we work on our sad landscaping. I'm thinking of getting a "nursery tent". The kind that allows air to flow thru and you can see in so the boys can play inside out of the sun and away from the mosquito's (so bad by us). Any suggestions out there?
This past weekend, Jason and I each had our own baby for awhile. Jay took Brady to watch a softball game Saturday, and then took Jax on Sunday. It's so amazing to have just ONE baby! I got to shower and do laundry, clean up the house and even go to lunch with a friend! It was nice to sit and hold a baby on my lap. I never do that! They are both on the floor or in a high chair or in a toy contraption or something. I never get to sit and just hold one. It's nice to do that once in awhile; have some one-on-one time with a baby and really appreciate them with your full attention.
Jaxon has a third tooth and they seem to be coming in fast for him. We were able to get Jaxon's urine and stool samples sent out this past weekend (labs for the holistic facility) but unable to get his blood drawn. The lab tried four times and said all his veins were blown...poor Jax. So we started him on his antibiotic in hopes of some relief. It's the fourth day and while he's sleeping better at night now, he is in a lot of pain and vomiting around 4am. Hopefully this antibiotic (Augmentin) will give him more relief as we finish it out. And even MORE hopefully, we'll get his blood work done once he's done with this antibiotic and then the holistic facility will be able to give us some answers and solutions.
I can't imagine a life of downward slopes/hospitalizations countered with antibiotics for the rest of Jax's life...it just can't happen. Life is livable for us all right now, but it's still just not fair to Jax. He has between 10-12 violent vomiting episodes a day, and when he goes on a downward cycle, he vomits even more and has awful diarrhea. Our only solution is an antibiotic right now, or put him on total IV feeds. What an unforgiving disease this is.
So right now this is what he takes daily:

1.5 ml's Ferrous Sulfate (Iron)
7 ml's Prevacid (2x/day)
Zofran (as needed)
1.5 ml's Augmentin (3x/day)
Probiotic (given with spoon therapy and rest in Jtube)
Mylanta or Maalox (as needed - typically during his night-pain)
And of course his Neocate with Pedialyte on a continuous pump at 32 ml's/hr

I caught an episode of Mystery Diagnosis about a little boy with unexplained vomiting. They described his vomiting as "extreme and intense" because he vomited 7 times in a week. Turned out that his stomach was in his chest cavity and they didn't find out until he was 3 yrs old by doing a simple x-ray. He ended up being fine with an operation. I keep thinking that maybe someday someone will say, "Voila! I've got the solution!"...wouldn't that would be heaven? 

We're still waiting for the blood work orders thru our GI clinic (Children's Hosp) to test his thyroid and VIP levels. Through some of my research I found that hyperthyroidism (Grave's Disease) can cause Pseudo Obstruction, so the doc's are testing his thyroid and also want to check his VIP (Vasoactive Intestinal Polypeptide) levels for a possible tumor (pancreatic cancer - let's just ignore this test significance like the Mitochondrial test results we're still waiting for). 
So at least we have two different institutions still searching for a culprit to cure in hopes that this isn't primary and completely untreatable. I just hope we find a "treatable" primary. Still keeping the faith.

Saturday, June 6, 2009

Scraping poo and takin' diggers

We finally received Jaxon's kits to collect samples for testing late yesterday afternoon. So this morning we are collecting all these "samples" and WOW, that is a good time. Never thought I'd be scraping poo and mixing it into vials before. Or putting a bag over my child's goods to catch his urine, only to freeze it for 48 hrs. We need to get this done today to save and ship out on Monday, so Jax can start up the next round of antibiotics. He's getting rather sick again with diarrhea and screaming in pain at night. Jay and I try so hard to give him a mix of Tylenol, Zofran and Mylanta to ease his pain in the wee-hours, but it's getting to be non-stop again thru the night. So we figured that while his samples are being tested and we begin the probiotic, we may as well give him (and us) some relief in the mean time. We wanted to start these antibiotics on Thursday, but knew he couldn't have them in his system for these tests...so it's been a hard few days. We either wait two days to give him his antibiotics to get these tests out, or we have to wait 2 wks to do these tests resulting in a month wait for any answers.

In other fun news, the boys and I went to visit Auntie Rachel for a few hours on Friday to get outside in the beautiful weather. We wanted to introduce the boys to the pool, in hopes they like it since Jay and I plan to be planted there often this summer :)
The water was a bit chilly, so Rachel and I sat on the steps of the pool and just them play in it. Jax of course just wanted to jump up and down in it, while Brady loved splashing and would've gone face first in if we let him. Brady is just hilarious lately. He has so much "boy" in him, he almost explodes. He hits his face or head on SOMETHING every day by smashing into anything and everything he can possibly find...he looks like he went thru war while taking all those diggers! All with a big ole' smile of course. Lord help us when he can walk!

Look how adorable and innocent Brady looked last summer in his bouncy seat.
Here he is the other morning testing the boundaries of those straps!
Jax with his new super-mini backpack that almost fits him!
The boys going for a walk in Rachel's neighborhood with the pugs. We were asked multiple times if they were twins...isn't that funny? 
(Not to mention they're in matching swimsuits)
Brady sporting his swimming sunglasses! 
(which didn't last very long)
The boys having a blast by the pool while mama and Auntie ate some lunch.

Tuesday, June 2, 2009

New Found Hope

Our appointment with the holistic medical center went well. The doctor seems to really think he can help Jax. We are waiting for 3 kits to be mailed to our house, which include:

Comp Stool Analysis (to check for said bacterial overgrowth)
Metabolic Analysis (urine)
Food Antibodies (blood)

There are also a few other standard blood tests the doc wants to review. Once we have the results from all of these, the doctor would like to make a game plan. He wants to see the whole picture and he's guessing that Jax has a few contributing issues here. While all this is happening (which will be a bit of a process), they want Jax on a dairy-free probiotic immediately, along with a chamomile oil rubbed over his liver. The doctor agrees that if a motility study showed Jaxon to have a neuropathic intestinal disease, he is not doubting that. But he feels there are probably more issues contributing to it, that can be treated. He also feels that Jaxon's pale complexion is a result of malnourishment. As in, his intestines are not absorbing properly.

Jax was such a good boy through the appointment, and actually had one of his episodes in front of the doctors. While we hate watching Jax do this, it is nice for a doctor to witness these awful, painful attacks that he goes through. The doctors definitely think they can help him, so we have our fingers crossed. He said he's had babies on feeding tubes with motility disorders that he has helped, and they are all tube-free. I hate to get our hopes up, but it's so hard not to. I was very nervous we'd see them and they would send us home with a herb. I feel better knowing they are doing a complete workup on him before making any decisions like that.

Interesting bit of info for you moms out there - apparently people with type A blood have a higher chance of dairy sensitivity. I thought that was interesting, and wanted to pass along.
So now I am waiting for the kits to begin gathering everything together. I'm not sure how long the process takes once I send everything back in is, but hopefully not too long. Jaxon is sliding back down again. He's been up the past two nights crying in pain and vomiting. This is the point where we start up another antibiotic, but we're going to try the probiotic first (when we get it). Fingers crossed.