Thursday, October 29, 2009

2nd Lab tests - done!

I brought Jaxon into the hospital to get his blood drawn for the second round of testing we're doing for the holistic medical facility. I was dreading this morning, but I'm so glad it's done with. It took three tries to get his blood, so you can imagine the nuclear meltdown he was having. We were able to get the labs processed into plasma and ship everything out. Now we wait to see what his results are and where to go from here. He had his Amino Acids, carnatine levels, serotonin levels and a Denox DNA evaluation done. I'm anxious to see the results.

Brady is starting to understand words now (he certainly knows what NO means). He takes socks and puts them to his feet knowing that's where they go, and he also takes Jaxon's bibs and put them up around his forehead knowing that's how they go on. I know these are little things, but this is the first sign from him that he gets it. He also does high 5's now, but for some reason "bye-bye" waving is still beyond him.

Since Jaxon is on the move like crazy now, he's having to learn the word NO for the first time, and he's only starting to get it :)

Here are the boys cruising around the kitchen at night (when Jax is off his feeding pump):


Thanks to Tamlyn for sending these cute outfits from Cooper and Colton!!

**For anyone following baby Grant, his staph infection is not MRSA (great news) but his liver enzymes are now at a critical high level. They're hoping it's from the staph infection and not his TPN. Please continue thoughts and prayers to their family.

Tuesday, October 27, 2009

GI Follow up

Jaxon had his GI follow up and another Feeding Clinic meeting at Children's Hospital today. We started with the feeding clinic (which is located inside the GI dept). Jaxon was absolutely fine until we brought him in the room where he gets weighed and measured. He had the worst meltdown we had ever seen. He actually clawed at me when I tried to put him down to get his clothes off. He screamed and cried so hard that I myself had to fight back tears. I couldn't even get him to stay on the scale because of his flailing around. He had to be put on the floor scale (like the kind they use at veterinarian offices), and even that was a struggle.

Once we got in the feeding clinic room, we were able to get his clothes back on him and he finally calmed down. He really likes the feeding clinic coordinator that we work with so that helps. She helped defuse the situation by making small talk before beginning any "food-work". Jax did VERY well. He sat in the highchair and smiled and clapped as I sang his special spoon-song. We worked on taste and texture today. We used apple juice mixed with water in one cup, apple sauce mixed with water in another and finally straight applesauce (very thin stage 1 baby food).
We practiced with the flavored water and he did great. We followed with the thicker water and finally a real taste of stage 1 baby food. He did AWESOME. Of course it was just a dab in his mouth, but that was the first time ever he's had it! We were taught how to go back and forth between the textures, and always bring him back and end with the flavored water, and how to use TINY amounts of the actual "food". So we'll be working on this over the months and working our way up. This will/should slowly but surely work on his gag reflex that he's acquired from the feeding tubes and early months of reflux and vomiting.
We met with the GI specialist after this and he was SO impressed with seeing Jaxon crawl around and trying to pull up on is leg (Jax couldn't even roll over when he last saw him 8wks ago). Of course the doctor said he is amazed at Jaxon's health and very hopeful for him. He agrees now that small meals may in fact be a possibility for him in the future. The doctor actually wants us to slowly increase his rate of food per hour to get him even more time off the pump, and to also take his vent off more frequently. He feels that since he's vented 21 hrs a day, his stomach is most likely producing more acid to keep up. He wants his stomach to feel volume in it (even though it means some of his vomits will produce more volume). He really thinks it's time to start making his stomach work. He's extremely happy and surprised at his health. I asked if we should check his iron levels since we've stopped giving him any, and the doctor said his complexion and color look so great that there's no question of iron deficiency, although they will check on the next appointment.

Jax had great appointments today which fills us with so much hope. I asked the doctor if he felt that Jax was on his way to being cured. He smiled and said that he thinks Jax is doing amazing and is on his way to having a much more free life. I'll take that ~

:::The doctor did say that he didn't know if the natural supplements were the key factor in Jaxon's progress since he has no education in that field, but he said he's not saying it isn't the key factor either::: 

**Please send more prayers out to baby Grant. He has a central line infection and has been re-hospitalized. Sending out tons of thoughts and prayers to you Shawna! Keep up the good fight.

Sunday, October 25, 2009

Seasons change

The last few days proved to be a beautiful fall weekend. Not much has changed with the boys for development other than Jax getting much more comfortable with crawling and Brady has tiny moments of standing alone. We worked with Brady off and on and he just tries to get down to crawl the moment you try to get him to walk - this better not be a foresight into the future of getting him potty trained!

On a more serious note, I would like to take a moment to send some love out to Shawna from Texas. Shawna and I belong to the same online community of mothers of multiples (she has 8 month old twin boys), and her little boy, Grant, has been diagnosed with Pseudo Obstruction. It's unbelievable that two babies in this small group of women have the senseless same disease. Please take some time to send your positive thoughts and prayers to their family. Grant is struggling at only 11 lbs and is on full TPN (IV feeds). My heart has been breaking for this family for quite awhile, and I know exactly how Shawna felt the other night when her baby was given this diagnosis. At this point, Grant is given a less than 30% to ever be off TPN, ever. Hopefully with this diagnosis they're able to begin calming his pain and getting him to grow now that they know what they're treating. No parent or child should ever have to go through things like this. 
With that said, everyone hug your babies and enjoy some pictures of these guys.

A walk with Daddy to look at fall leaves.

Brady enjoying the leaves in the yard!
Jaxon does NOT like the feel of leaves!
Neither boy owning up to who ripped the lamp...
Bathtime!

Jaxon testing my cleaning skills by trying to chew on the tub...
~ They love bathtime ~
The neat thing about Brady...you can pull his clothes off at bedtime and leave them on his head 
and the kid just leaves them on his head and goes about playing like they're not there!


Wednesday, October 21, 2009

Silly boys

The boys are doing well. I have continued this nasty bug, but thankfully the boys seem happy and healthy. I contacted the doctor's office about myself and the nurse said that with all my symptoms, I either have a bad bug, or the H1N1 flu, but either way, they'd give me the same advice for either to get better. Although extra rest and staying away from people can't really happen. The nurse said that since my symptoms had been going on since Saturday, the Tamilflu treatment wouldn't help me at this point. Although if I still have a sore throat in a day or two I should come in. I just don't want to go into a doctor's office unless absolutely necessary so I don't expose myself  (thus exposing the boys) to other illnesses. 
My symptoms have been: Sore throat, body aches, chills, headaches, vomiting and now a cough. I'm ready for this to all be gone now! So I'm forging through and using a pound of disinfectant daily. 
We've still managed to get a lot of playtime in with the boys. Here are some pictures to prove it!

I was doing spoon-therapy with Jax in his highchair this afternoon. 
I turned to begin and this is how he was sitting there. All "matter of fact" like! 
It's nice to see some color to his skin, isn't it?
Jax was all kinds of giggly and silly, enjoy!



I looked down at my feet and there's Brady blowing spit bubbles!

The boys "unwinding" with Daddy before bed.
Hi boys!
Jax is on the left and Brady on the right.

Sunday, October 18, 2009

Weekend yuckies

We had a very low-key weekend. Jaxon and I haven't been feeling the best. I started with aches & pains, a sore throat and nasty headaches, and Jax was irritable and ran a temperature on Saturday night. His vomiting had increased to every 20 minutes when we put him down for bed so I called the doctor about what to do. She doesn't ever like it if Jax runs a fever with extra vomiting. I realized he's never run a temperature at home (only in the hospital). We all made the decision to only bring him into the ER if his vomiting continued or fever got higher (it was at 101.7 at 10pm). He actually stopped vomiting after I got off the phone and slept until 5:30am, and then after a few episodes of vomiting, he slept until 7:30am and has been doing well since. He's back to his baseline of vomiting and no temperature since last night. It must have been a quick bug for him, although he does have a touch of diarrhea, but he's acting totally normal. I on the other hand don't feel great at all. I can somehow give Jaxon over 20 medications/supplements every single day but can't remember my own multi vitamin...seriously woman!

Otherwise the boys are still moving along. Brady hasn't taken any steps unassisted yet, but I'll sure let you know when he does! And Jaxon is cruising around with his crawling. We have to chase behind him with his backpack that he's attached to. He needs to be pulling up to a stand and taking steps like Brady in order to wear his backpack...we can't wait for that!

The boy's play pen set up in the family room. 
We play in here late morning while listening to Sinatra. 
A change of scenery and toys can do wonders!
Brady proving that I can't keep a big basket of 
diapers and supplies sitting on the couch anymore...

Wednesday, October 14, 2009

Such patient little men

I got the boys all ready to run out for an errand this morning and set them by the refrigerator to play while I gathered my things (read: COFFEE). I came back and stopped realizing how cute they were. Of course when I grab a camera, it's impossible to capture them both smiling or even opening their eyes at the same time anymore, but you get the picture...

Monday, October 12, 2009

Overdue update!

I'm sorry it's taken me so long to post!
The boys are doing well. Brady is still cruising along furniture with walking, but not on his own yet. He certainly can get up the stairs quickly too, so gates have been installed. We put some big boy shoes on him (that he can't get off, it's IMPOSSIBLE to keep shoes and even socks on the kids these days). Jax's physical therapist told us to take the shoes off Brady when he's in the house since his feet will flex better without them on and walk better. So many conflicting opinions!
Jax is doing fabulous with his development. He's starting to crawl now! He can get up on his knees and tries SO hard to pull up, but that will have to be worked on for awhile before that happens. The therapists think his development is going so quick because this has all "clicked" for him awhile ago, but he just wasn't able to do it physically. So now that he's building up his strength in his right shoulder/neck form the torticollis, he's starting to cruise along. He's getting more comfortable with the tubes as well. He's up to all 13 of his supplements now. We'll be discussing when to move forward with the next round of testing for the alternative doctor. He still has vomiting episodes, although we think less frequent. The biggest victory so far is zero hospitalizations and zero antibiotics. This has been huge for Jax!
I've cut down to zero Miralax now from 1/8 tsp. He is now on his full supplement power and has had explosive diarrhea for the past week. It has been QUITE the challenge to clean that with a kid who wants to get into his new fancy crawl position while you're trying to clean up his awful mess and then to have another little curious monkey named Brady try to see what's going on. Needless to say there have been a lot of sudden loads of laundry done that includes blankets, my clothes, Jaxon's clothes and yes...even Brady's clothes after cleaning up Jax's poo-mess. So we'll see how he does over these next few days without his daily laxative and just the natural supplements.
Jax is also down to getting adjusted at the chiropractor once every two weeks. We'll see how he does, but she said he's really holding his alignments well now! He also has his GI follow-up and Feeding clinic appts at Children's Hospital in 2 weeks from now. I want to discuss any further testing for early 2010 which would tell us if (by their tests) Jax's disease has progressed or gotten better, and even how far down his intestines he is affected since we would put a probe thru his large intestines as well this time. We'll see how the planning of this goes.
Hopefully everything will remain quiet and both boys will just continue to keep developing into little boys.

Pictures:


Lunch at Applebees on Saturday afternoon. This is how we position the boys whenever we go out for food. So far it has been wonderful and they've loved it. They each have their own chair with their own tray so they don't/can't touch anything on the table. We can also put covers on their trays so we can wash/disinfect them at home. We also keep them on the inside of each of us in a booth to not bother (shield) from other people. They weren't very good in restaurants until about 12 months old and have been great since - we'll see how long it lasts!
Jax showing how he can get up on his knees and play at that level.
Brady loves to pull things out of the bathroom drawer as I get ready in the morning. Here he found my old velcro rollers - such a diva!
Typical pictures I get of the boys together now - not as easy anymore!
Easier to get pictures one-by-one! 
Here's handsome Brady!
Jax doing his "serious model" pose!
Or totally NOT amused by Mom...
Classic move by Jax. He wrestled me through an entire diaper change, only to crawl off without his pants. Here he is trying to copy Brady and doing his best at pulling up.
Let's recap this last photo. Ok...so my kids are about 2" from the television (yes, they watch cartoons, I'm THAT much of a wonder-Mom) and Jax has ONE sock on and NO pants. Mother of the Year Award goes to me :)

Sunday, October 4, 2009

Weekend Photos!

We all went to Jason's home town of Manitowoc on Saturday to visit some family and to watch Jason's cousin Eric play football for his old high school team's homecoming. The boys loved all the people and the excitement until about halftime when the fact that they were skipping their naps kicked in!
We were able to visit all the grandparents, and see Nana and Papa Letts and Uncle Craig and Auntie Shannon at the game, it was a nice day away. Jason and I took the boys to a pumpkin farm on Sunday and the boys loved it. We saw some animals at the petting zoo, a lot of kids playing games and we took a hay ride through a haunted forest which stopped at a corn maze that led us out to a pumpkin patch. It was a great activity for all of us!


Brady with Great Grandpa K.
Jaxon with Great Grandpa K.
Nana Letts and I with the boys at the football game.
Auntie Shannon with Jax. They were on cheerleader patrol!
Brady and Papa Letts being serious.
Great Grandma Letts with the boys.
Jason with a goat and the boys...this picture is fantastic :)
The boys thought the hay was way cooler than a pumpkin!
In fact, everything going on around us was more interesting than looking at mom or dad!
Brady showing his skills.
My pumpkins sitting with pumpkins~
Brady
Jaxon
All four of us on the hay ride through the haunted forest.
Jay with Brady in the corn maze.
Jaxon and I strolling through the maze.
Brady having a blast waiting for the hay ride to pick us up from the end of the maze.
Just waiting and having fun!

Thursday, October 1, 2009

Flu shots

The boys had their flu shots today, which always make for happy babies (note the sarcasm). I'm waiting to hear what the pediatrician's office recommends about the H1N1 vaccine, but they're also waiting to hear from the county. We're still not sure if Jax qualifies for the monthly RSV shots, so we're waiting on that as well.
We found out the boys weights today (which are usually a few ounces less than the hospital scales). Our little meatball Jax weighs 21lbs, 8oz and Brady weighs 19lbs, 11oz. Brady is just starting to get back to gaining from when he was sick.

In household news, we had a new furnace put into the house today. YAY for reliable heat before winter! Booo for the cost...we better not have to worry about our furnace again until the boys are at least in college! 

Brady is still cruising around furniture and walking along with some toys, so we're just waiting for those first steps, I can't wait! Although it's time to set my baby-jail up in the family room!
Jax is now consistently going from a sit position into a crawl position and then back to a sit position...it seems to have clicked very fast for him. I positioned his tubes differently on him, so he feels a bit more free during the day to move like this. We left his tubes connected during occupational therapy today, and he did great! I think his natural supplements are helping him gain weight with better absorption and of course giving him all this fabulous energy!

It's so neat to walk into a room and see this...

Hi Big B! 
I swear he had two socks and two shoes on when he started the day.
And this is how Jax takes his socks off!