Saturday, January 30, 2010

Fever Free

Jax slept well last night (wish I could say the same!) and his fever has left. He has some nasty diarrhea which will probably stick around for a week or so, but it seems as though he has a virus. His vomiting seems to have slowed to a stop as well :) It's nice to see him move around again!

**Please pray for baby Grant. He has full blown sepsis now and is hospitalized :(

Friday, January 29, 2010

Appointment update

Jax didn't show any signs of an ear infection and his throat culture was negative for strep. So he either has a virus or something else is infected. The doctor said that most viruses do not run a fever longer than 3 days, so if he still has a fever tomorrow morning, he has to come back in for a catheter to check for a urinary tract infection. Ugh, lets hope he doesn't wake up with a fever! His fever was at 100.6 after his bath when we put him to bed. He was lethargic all afternoon (which made Brady unhappy to see me cuddling his brother all day!) but started playing a little bit before bedtime. He seemed thirsty and drank quite a bit from his sippy...well...only drops come out, so even constant "drinking" from it was probably only like 10 ml's, but hopefully it's a sign of getting better. I know he feels dehydrated since all his body fluid is venting from him. He screamed so hard at the doctor's office while getting his ears checked, he had blood all over him coming from his stoma site (hole that his tubes are in). Mind you, while this is all happening, we look over and see Brady had gotten into the cabinet and cleaned out an entire container of wipes on the floor. :) He's a free spirit that Brady!
The doctor was excited to hear of Jax's progress of lately. She gave me a gentle reminder that we may have found a great way to "manage his symptoms" but to not forget it will always be an "underlying medical condition". I said, "how could I forget"? She gave me a squeeze and some encouraging words after.
So now we wait...

Fever City continues

Just a quick note...
Jax's fever has continued (102.6 this morning) and he was up every two hours retching last night, with some vomits in the morning. I'm bringing him to the pediatrician at 11am, and am hoping we can find something like an ear infection as a cause. Otherwise we may just have to wait out a virus and hope we can keep him hydrated. I'll let you all know how the appointment goes!

Wednesday, January 27, 2010

Fever City

Jax has come down with something. He's had a fever all day that Tylenol has been treating, but it keeps coming back. Poor Jax feels just lousy. He was crying a lot and clinging to me like a baby monkey. He's definitely not acting like himself. Because of his CIPO, his nerve function dumps out his body fluid, so the vent that we have hooked up to his belly while sleeping has been completely full of body fluid and stomach bile. He woke up retching a little bit this morning, and then had an actual puke later in the day. No real 2-minute episodes, but he for sure puked and didn't feel well at all. Poor little guy.
Hopefully this passes and it doesn't become anything bigger for him. After his bath, his temp was 101.3 at 7pm, so we gave him some Tylenol and he's in bed now. We'll see how he is tomorrow.

On a sad note, the father of one of my best friends passed away this morning. Vern fought a long battle with Huntington's Disease. My heart aches for Sidney and her family...all our love to you.

Tuesday, January 26, 2010

Stuck on them

Brady has taken a few more steps to me here and there, but there's no sign of it being a regular thing yet. He sure does love to climb ANYTHING though! He loves to yell out, "YAY!" when we're doing Jax's feeding therapy while we cheer Jax on...it's so sweet. So his words are: yeah, yay and go (if you prompt him) and he loves to shake his head NO. He will however, eat his snack twice a day on his toddler table (knowing food can't leave the table).

Jax also loves to shake his head NO, but really enjoys playing with cars all.the.time. He had a small vomit yesterday morning, but it was not an "episode" and it was after a lot of fluid was put into his tube. He hasn't had anything since, so it will be 2 full weeks as of tomorrow that he's gone without an actual vomiting "episode".
In other fun news, our hot water heater broke! We just replaced our furnace two months ago, and now this. Our luck is almost comical! But alas...it something replaceable.

Brady crawling through his chair and getting stuck!
Yup...after I rescued him from the first chair, 
I walked away for 1 minute and he was stuck in the next chair over...wow.
Jax will carry things around in his mouth...yup, our little monkey.
Brady looks innocent playing with the cat here, right?
Full on body hugs ensured.

Jax thought it was hilarious~
The boys up to no good this morning. They stole my camera cord and proceeded to wrap it around the stair gate until it was in knots.

Sunday, January 24, 2010

Brady's first steps

He did it! Brady took his first steps on Saturday. He walked from the coffee table to Nana Jayne on the couch. He let go of the table and just stood there and then took two steps like it was no big deal. No wobbling or anything. He has refused to do it again since! So frustrating! So...I guess it's a matter of time until he feels like doing it. And all of you were right who said it would start happening soon after all the climbing! All you smart moms out there!

Jaxon is STILL vomit-free. They are both doing great. Brady now pretends to talk on the phone, vacuum the house, make food and feed it to whomever is willing to play. Both boys grabbed their own books and crawled up in my lap to have me read tonight. They are LOVING their little kitchen that took me THREE hours to put together on Saturday night. Brady is obsessed with it. Best $24 spent to date!

The playroom and my office with their kitchen.
Brady watching Jax dismantle everything on the kitchen. 
He will put it all back once Jax is done!

Friday, January 22, 2010

Climber

Things are going well with the boys. Jax has had a few moments of retch in the early mornings, but usually when he sneezes or is crying very hard. He hasn't had any real actual "episodes" yet, and I'm hoping that remains!
Brady has an obsession with climbing. He climbs everything he can possibly reach! He loves to be on the coffee table, on toys or ANYTHING. And yet we can't get him to take independent steps...some day...

Brady climbing to get the TV remote (apparently he wanted the TV on).
Brady playing ON his toys rather than WITH his toys.

Wednesday, January 20, 2010

Coloring

Everything has remained steady. Even when Jax had his usual meltdown walking into the chiropractor's office, he didn't have an episode, which he usually does when really upset. He did have a few moments of his coughing that he does in the beginning of an episode, which makes my heart sink thinking he's about to, but he never does. So far so good :) The chiropractor is amazed, and happy to see him not needing his backpack in the late morning. She said his alignment was looking great, and that it's probably due to the fact he's not heaving and putting his body through the stress. So we don't have to go back for 2 weeks unless there's a set back.

I have an appointment made for him in two weeks at the feeding clinic in Children's Hospital. If he can hold strong until that point, I think it's safe to start trying to put formula directly into his stomach rather his intestines. Until then, I want to make sure this is really happening, and not a short-lived thing. 

Baby Grant has been back in the hospital for the past few days with a yeast line infection from the TPN. He's already received a blood transfusion and is awaiting another one while they fight his fevers. He's been wearing Jax's power-pj's in hopes to follow Jax. We're all thinking about you Grant!

The boys coloring some dinosaurs.
As usual, Brady eating the crayon!

Tuesday, January 19, 2010

Sippy cups!

Jaxon continues to amaze us. We had a very long session with the speech/feeding therapist yesterday (who is beyond amazed). After the speech portion of the session, we put both boys in their high chairs for a snack.
Brady got to enjoy 20 straight minutes of yummy snacks, while we experimented with Jaxon. After some oral stimulation with the Z-vibe pen, we tried some stage 1 baby puree peas which he did NOT like, so we tried giving him a Biter biscuit. The therapist thought this would be a good substance for him to chew on and get some flavor off of to help stimulate his taste buds (which aren't ready for food). Well Jax surprised us and actually bit OFF a piece. He started gagging and freaking out as we rushed to get the food out of his mouth. He never retched or vomited - we were shocked first of all that he didn't get sick, but mostly that he bit off a hard piece like that - that kid has some chompers!

We didn't want to push him after that, but the therapist really wanted to see if he'd give himself water out of a cup since he likes drops of water off a spoon. So we got out the sippy cups that I've been saving for a year in hopes we get to use them for Jax. They are the hard plastic take n' toss cups known for drinking practice that only lets out drops of water without having to suck.

Well sure enough, Jax loves it. He loves chewing on the hard plastic spout and taking tiny sips off of it. I was over the moon! The therapist said he may take to "drinking" his food before "eating" his food (like all infants start eating), so even if we can ever get him to drink his formula rather than getting it through the tube would be great. We would have to start putting his food thru his G-port (into his tummy), or at least some of it, and see how he does. This is going to be a very long process, but at least we have the real opportunity to start it! I'm calling the Feeding Clinic at the hospital to see if I can get an appointment in the next month to see what they think as well.
Keep up those prayers and good thoughts, because this kiddo is on his way!

The boys enjoying their sippy cups~
(Ohh I see an angel in between the boys in this picture!)
Brady needs to get used to the fact that Jax gets one too. 
Jax as usual has NO problem defending himself!
After his nap, he still liked the sippy!
The boys actually sharing a toy...kinda.

Monday, January 18, 2010

Going strong!

I'm happy to report that Jax is still going strong. He had one set back yesterday morning with waking up to vomit, but his tubes were disconnected and he was covered in formula and stomach/intestinal bile. His body was so out of whack, that we were hoping and praying his vomiting was due to that. He has not had an episode since! He's doing great. I'm still cautious about a premature celebration, but for now, it's a miracle.

The boys climbing their mountain yesterday
Brady laid on the kitchen floor and mixed up his fake dinner while I cooked!
He loves to feed me his fake food creations :)

Saturday, January 16, 2010

18 months and some huge news!

The boys turned 18 months old this week and we got their photos taken. It was certainly a less than to be desired experience! At first Jaxon had a major meltdown because the man taking the picture pulled down a very bright WHITE sheet and it scared Jax. The man pulled it back up and brought out a blue sheet instead and then Jax was fine (he seems to have developed a phobia with the color white most likely due to medical facilities).
Little did we know that Brady was going to be the one who would NOT participate at ALL! He wanted absolutely nothing to do with being next to Jax for their shot together - apparently he didn't want to share all his cuteness! So we had very little to choose from in the end. Hopefully their two year old shot will go better...well, we can always hope, right?

So here's the BIG news. I have been holding back from posting about this for fear that it was going to be short-lived and as usual, getting our hopes up...but this seems to be holding steady. 

Jaxon's vomiting has stopped.

Yes...you heard me...it has stopped since Thursday. The only thing we can think of that's different was the addition of a Serotonin Supplement powder we began giving after his appointment with the alternative doctor on Tuesday. Jax had 2 episodes on Wednesday, 1 on Thursday and none since. He has woken up FOUR days straight without vomiting (and therefor getting a good extra hour of sleep). We can't believe it!

His pump rate is up pretty high, so he's very close to only needing to be on his tubes while he's sleeping. He has a new freedom later in the mornings now without lugging around his backpack. He's tried banana puree the past few days, and while he makes awful faces if I get the spoon too far back in his mouth, he has not retched or heaved or vomited at all. He just refuses if he doesn't want it, which is a great alternative to what he used to do. (Don't get me wrong, he takes nothing more than a "taste" of baby food, not actually eating - that will be a whole other issue to tackle.)

We are in shock, yet still pretty cautious about this. I've been wanting to run to post about every single morning he's been waking up without being sick, but the thought of coming back to say it was "just a good day" was too much for me to deal with. But I feel the need to report this NOW!
Please keep your fingers crossed that we're really onto something here. Jax looks fabulous, and he just seems happier.

Here are their shots from today (Jax decided to be quite the model):

Profile pic of Jaxon
(Jason said that this picture looks similar to an old photo of his
 - I want to see it!)
This is the individual shot we chose.

Brady deciding to give us a little bit of his smile.
This is his individual shot.
In the printed photos, you can really see his beautiful blue/brown eye.

Jax gave a lot of smiles.
This is the last time Brady sat still for a millisecond.
More smiles from Jax.
Look out GQ Magazine!
These were the best shots we could get of the boys together...seriously.


Wednesday, January 13, 2010

Alternative Medicine

I've had a lot of people ask me for more information about the alternative medicine route and how it works. The best way I can explain the route we've taken, is to give a brief history of our path. We were referred to an alternative pediatric MD. This means this is a medical doctor who specializes in alternative/holistic alternatives like natural supplements.

We filled out paperwork and then the doctor recommended specific lab work to be done. We ordered in the test kits, and followed the directions (which can be VERY specific and detail orientated) which was stool, urine and blood. The blood work had to be performed at a local lab. Once the specimens were collected, they were overnight delivered to the independent lab that processes these specimens.

A full report is then shipped to the doctor office. We are then sent a copy of this report and instructed to schedule an appointment either by phone or in person to review the results and discuss the recommended course of actions of natural supplements.

We then started on a long list of supplements, adding one every 4 days or so working our way all the way down the list. We would check in with the doctor and report how Jax was doing and then the doctor recommended more tests. The new test kits had to be ordered in, labs drawn and sent out again. After weeks/months of waiting for results, we would have another meeting to review those results with new recommendations of supplements, which leads us to where we are now.
To review our experience so far, we started with the first supplement the third week of August and was on full force of the supplements around the beginning of September. Jax has been on full supplements for about 4 months now and these are the changes we've seen:
  • No hospitalizations (which he was averaging every 8 wks for the first year)
  • No more laxatives
  • No need for antibiotics due to intestinal bacterial infections (he was averaging an antibiotic every 9 wks once diagnosed)
  • Vomiting episodes have gone from an average of 8/day to 4/day (Aug-present)
  • The rate at which we can run his pump at is able to be higher. Since Jax can finish his food faster, he can be off the pump for longer periods of time (the faster the rate of food he can take, the faster he can finish the amount he needs in a day).
I've had a lot of people ask me how insurance works with alternative medicine...well it doesn't really. Jax had his acupuncture covered since it was performed by the Pain Management Team at the hospital, and it also covers his chiropractic work (which helps a lot as well). As for any meetings with the alternative doctor, that is billed by the MINUTE, and all supplements are 100% NOT covered. So it is a big investment of money and of course time. You have to be committed completely and follow exact instructions to really give it a real try. We've taken Jax off all motility drugs, and he only takes Prevacid as his only prescribed "drug"...which is the one thing covered by insurance. I have to also say, it's helpful to have specialists and doctors who support your choice to take this route. I've always cleared everything with Jax's specialist, who in turn gives me the thumbs up and says it can't hurt. But please rest assured, his specialist does have a copy of every alternative test and supplement that Jax is on.

I've learned to look back over months and not days when I get frustrated with watching my child go through this every day. So blog entries like this one, can be helpful.
Hope...it's what keeps us going.

This is Jax's current med/supplement schedule:

Wake up:

·      Prevacid (7ml) *Mix separately in 5ml’s water

·      Artichoke Extract (1 cap)

·      UBQH (1 cap)

·      Digest (1 cap)

·      B-Complex Plus (1 cap)

·      Buffered C Powder (1/4 tsp)

·      Serotonin Support Powder (1 small scoop)

·      Magnesium Mineral Water (1 tsp)

·      Zinc Mineral Water (1 tsp)

11:30am:

·      Olive Leaf Extract (1 cap)

·      Silymarin (1 cap)

·      Digest (1 cap)

·      GI Boost (1 dropper full)

·      Cod Liver Oil (1/4 tsp)

·      Zinc Mineral Water (1 tsp)

·      Calcium Mineral Water (1 tsp)

 

(Dinner Time - After being off the pump):

·      Healthy Start Kit (3 bottles in fridge - 1/2 cap of each)

·      Immune Balance & Detox Support (1 dropper full each)

         **Needs to be off pump for 1-2 hrs to take this

6:30pm:

·      Prevacid (7ml) *Mix separately in 5ml’s water

Bedtime:

·      Artichoke Extract (1 cap)

·      Digest (1 cap)

·      GI Boost (1 dropper full)

·      Buffered C Powder (1/4 tsp)

·      Serotonin Support Powder (1 small scoop)

·      Calcium Mineral Water (1 tsp)

·      Magnesium Mineral Water (1 tsp)


**I hope this helps someone out there to have their own hope...

Tuesday, January 12, 2010

Appointment and lab work update

We received pretty decent news yesterday. Jax's lab work from Children's Hospital all came back good. He is receiving plenty of fluid everyday for organ function and his Carnatine levels are just fine (so no supplement needed for that).
The appointment with the alternative doctor went good too. His latest lab worked showed pretty good results. He needs a supplement for some low amino acids, a serotonin supplement which will not only help his low serotonin level, but also help counter the Co-Q10 affects he has of not being able to nap very easily (Q-10 gives a lot of energy, and since it's given in the morning, it seems to affect his noon nap often). It should help with focus and concentration too - couldn't we all use a little bit of that?! He's also being put on Cod Liver Oil to help with a genetic marker he tested positive for (which Jason and I have been recommended to take as well, since it came from us).
The doctor was very impressed with Jaxon's test results. He is still VERY confident that Jaxon's vomiting will slowly but surely end with a long road of training how to eat. He thinks Jax is responding better and faster than he expected already. It's nice to see and hear his confidence, we all just hope he's right!

Sunday, January 10, 2010

1/10/10

We had a quiet weekend, which can be nice! Jaxon can now consistently wave hello or bye-bye. I've noticed both boys are starting to transfer from one object to the next easier while standing. They can also tear apart every room on the first floor within 10 minutes flat. It's amazing!

Tomorrow (Monday) is Jaxon's appointment with the alternative doctor, so I'll update of course with the recommendations. I'm also waiting to hear back from the GI nurse at Children's Hospital for his lab tests and to discuss a particular drug. I'll keep you all updated.

The boys getting ready to run some errands 
with us on Saturday - they are such spit fires!
How long do you think they'll share the chair?
We played their Yo Gabba Gabba DVD on the computer in their playroom while the Packer game was on Sunday - they loved it...clearly!

Friday, January 8, 2010

Fun with therapy

The boys loved having speech and occupational therapy this morning with lots of attention and fun. The boys love kissing themselves in a mirror...well, smashing their mouths against it at least. They think the body parts of Mr. Potato Head are pretty cool, but Jax still finds "gentle" with a baby doll to mean throwing it. They were very engaged with nesting cups together for some reason today. We did a lot of verbs and prepositions with where a car can go (up, push, down, on etc etc). During OT, we realized that Brady loves to scream out for the word GO, when saying ready, set...(insert Brady's scream GAAAA!), so that is super cool. We did some feeding with Jax after some vibration stimulation to his face/mouth. He did as he usually does lately, blew bubbles and mostly refused. We received a few tips of what to do, so we'll keep on, keepin' on with that.

I called the GI nurse asking about Jax's lab work he had done last week while at the hospital. I'm sure I won't hear back until Monday. I also really want to talk to her (to talk to the GI doctor) about the drug Octreotide SubQ (given as a shot rather than IV). It's helping baby Grant out in Texas. We'll see what they have to say. We also have the meeting with the alternative doctor on Monday to review some testing we did in October. I'm very anxious to see how that goes.

Jax is on his "big-boy" formula now. He's graduated to Neocate Junior from Neocate Infant. It's a different formula for kids over one. We waited until now since his system was doing so well, the doctor wanted him to have a longer stretch of remission before changing anything on him. I have his pump rate up to 43ml's/hr, and he seems to be tolerating it well. His vomiting episodes have remained around 4-5/day, so we can't complain about that. He's been continuously waking around 6am with an episode, and then we turn off the pump and give him an hour or more break to go back to sleep. This has been helping him get another hour of rest most days.

The boys being SO GOOD...for a moment.
Then Brady realized Jax was in the chair.

A weird game Jason and Jax were playing last night.
Brady wrestling with Yanni.

Wednesday, January 6, 2010

A bit better

Jax did really well yesterday with only 3-4 episodes the entire day. Was it the chiropractor adjustment that he had Monday night? Who knows, but we'll take it. He's doing okay today, but his last episode included him throwing up blood. Not to alarm any of you, but he's done this before, and it's always been a result of blood in his tummy from his tubing rubbing around the stoma site. I'll be watching it and checking the diaper that his stomach vents into. So far it's nothing alarming. I'm going to take a picture of his stoma site and post it to reference back to. You would all know what I'm talking about then when I describe it.

Baby Grant in Texas is still in the hospital. He is having problems with low red and white blood cells among other issues. The only idea the doctors have is that a simple virus is crushing his system, so please keep him in your thoughts. Since being diagnosed with CIPO, this little boy has been on TPN and non-stop hospitalizations...he and his family deserve a break.

New things that the boys can do:
Brady - 
  • He  waves hello and good-bye consistently.
  • He likes to say "YEAH!"
  • He tries to wipe Jaxon's face with rags.
  • He tries to unzip Jaxon's backpack when the pump alarms. Such a helper.
  • He takes his paci out of his own mouth and throws it in the crib when waking up (he's only allowed to have it in his crib).

Jaxon - 
  • Pretends to "chew" when he sees us eat (he looks like a fishy breathing under water).
  • Calls me BABA.
  • LOVES to jump up-and-down in his crib.
  • Has an obsession with Daddy.
  • Loves to read his books upside down.

And they both hate it when I hold the other one. They fight over my lap at least 10 times a day. I'm sure those fights will just get more intense as they get bigger! And they both love to zoom cars or trucks on the floor around the house - too cute.

Monday, January 4, 2010

1/4/10

We're back on our normal routine now that the holidays are done. Jax had physical therapy this morning, but he didn't do very well. He was really sick. He had two episodes in the course of 30 minutes, so we cut it short. He's been bad in the mornings again. He sleeps pretty good until 6am - ish. Although he was up randomly the other night at 2am, but it seemed to have been a random occurrence, and not the start of something. I brought him into the chiropractor this evening, and his lower back and neck were out of alignment, hopefully the adjustment may help. He had an episode in the waiting room, and I swear everyone around us thought he had the flu...I'm starting to find myself not caring to explain to the strangers around us anymore that he's not sick and they can all relax. I think I'm crabby...I don't know. His prolapse (the stomach lining coming out of his tube site) is getting worse by the day and now leaking. I'm DREADING the thought of calling for an appointment to look into it. I can't stand thinking they would put another hole into Jax. I've had a nagging feeling lately about him, and it's freaking me out. 

It may be because Jason and I just saw the movie 'My Sister's Keeper'...that was really hard to watch, and not to mention PAUSE to run upstairs and help Jax through a violent episode twice. I know a little bit of it is because baby Grant who also suffers from this disease has been admitted back into the hospital. He's getting a blood transfusion tonight, and can't fight off a high fever. He's so sick again, and it's breaking my heart (please send good thoughts/prayers/wishes to their family).

We have an appointment with the alternative pediatric MD on Monday to discuss the latest test results (that were submitted in Oct) and see if there are any other supplements that could help. I pray we find that missing key. I haven't heard back from Children's Hospital about his last lab tests, but you know I'll let you all know.
Let's look at some cuteness...

The boys enjoying snack time and books on their big boy table.
They're discussing the book...
Jaxon letting out his man-chest after his bath!
Ahhh yes, stair gates...one of the necessities of our household.
Caught you stinkers!

Sunday, January 3, 2010

The end to a holiday season

The boys have been loving all their play time at home with mom and Dad during the holiday weekend. We all went to John and Amy's house (cousins) for New Years Day dinner - the boys had a blast! We chased after them for much of the visit since they felt completely comfortable touring the entire house non-stop, but it was fun!
We've completed a playroom for the boys with a trip to IKEA, and putting together some of the last Christmas presents they received from everyone. I was able to get a STEAL on a play kitchen through a friend online ($24!), so that should complete the room for the boys. Brady will be in heaven since he's SO into pretend play and "cooking".  I'm hoping it will help with their speech therapy as well to capitalize on "pretend play". I'm not sure if I've ever mentioned the boys complete obsession with the dishwasher or stove (or anything in the kitchen really), but the play kitchen should prove to be rather popular with them! I'll include pictures of their new big-boy play areas when they're all finished up.
*I just realized you can see a lot of it in the photo of Brady in the post below!


The first official picture of 2010!
John and Amy with the boys!
The boys shared lots of high 5's, clapping and some waving bye-bye!
Not to mention a LOT of scaling of their walls looking for trouble...

Friday, January 1, 2010

Hello 2010!

I woke up to a new year this morning. That's what happens when you're sleeping by 10pm!
I had a dream that an eye doctor told us he could cure Jaxon. He had the cure. But we had to meet him the next day at the zoo with a check for $25,000...hmmm interpret that! I think a few different fears came into play on that dream!
I also remembered a detail from Jax's GI appointment that Jason and I need to look into. The doctor asked if anyone in our family suffers from migraines - apparently, that may be a key? We couldn't think of anyone immediately, so please consider this asking all of you!

We hoped and prayed that 2009 would be "our year" and while it proved continued struggles, it also didn't fail us. We have such hopes for 2010.

We were visited by Auntie Christa and cousins Aidan and Anesah last night on their way home back to St. Louis. I'm so happy I got some pictures! The boys love running around and playing with them, so it was nice to see all the kids so happy. 

Enjoy the first blog pictures of 2010!

Brady enjoying a Christmas gift from Angie and Marley.
(And some alone time since he woke up from his nap EARLY)
Finally...holiday pictures with the other cousins!


We peeked around the corner and saw this last night...