Friday, April 29, 2011

Friday Fun

We finally got a sunny day! We certainly were not going to let this day pass us without fully enjoying it! I took the boys to visit Krista down in Bay View. They of course LOVE her piano, but we were able to coax them out of the house with the promise of going out side! We took an awesome long walk down to the lake and over to a really neat playground. It's one of those antimicrobial sets, so that makes mama's like me rest a little easier (not that I still didn't fully disinfect afterward). The boys had a blast running around like maniacs.

In feeding-news, Jaxon is doing AWESOME right now. He suddenly has warmed back up to the spoon, and has been taking several small bites of yogurt the last two days. He's taking nice sips of his juice or milk smoothies too. Tonight we had ordered some ham sandwiches, and they came with swiss cheese. Jason and I don't like swiss cheese, so we gave it to Brady to try. Jax was starring at it, so we gave him a piece on his tray assuming he just wanted to touch it and play around. He surprised us greatly and put the cheese to his mouth and pretended to eat it. Jason told him to smooch it (which is a feeding technique to get children comfortable with putting food up to their mouth), and Jax smooched it and then put the edge in his mouth. He didn't bite it, but he tasted it while it was in his mouth. ALL ON HIS OWN.
That may not sound like a lot to many, but to us, it's HUGE! We're so proud!



Here's Brady showing his shiner on Thursday night.
I think it looks a tiny bit worse today.

Jax didn't want to be left out of getting his photo taken!


This is the result of two little boys realizing the window seat opens up to all of mommy and daddy's games and DVDs. This is what I get for running upstairs to brush my teeth.

Playground fun





I realized while trying to get a shot of Brady that we could see the shoreline of downtown Milwaukee.

Yup, this is Big B standing on the neighbor's skate board!

Playing with the neighbors and Miss Gina, the nanny.

Wednesday, April 27, 2011

Tiny trolls

I'd really like all this rain to go away! Otherwise business is as usual around here. Jax got sick last night and vomited up a lot of his dinner while in bed. He's acting totally normal this morning, but I threw a bib on him just in case. Hopefully he continues on his good path.

Brady got into a fight with his wooden chair. We're not sure what happened, but we saw him on the floor with it as he cried, and now he has a nice little black eye... sigh...
Brady has been waking up 30-60 minutes early lately. He does acrobats in his crib which throws his crib all over his room since he has hard wood flooring. It wakes Jax up, and then we hear, "Ahh Daa" repeatedly which means ALL DONE. I can't help but smile as we get them out of their cribs. My favorite part of the day is to see them both RUN from room-to-room screeching, while making sure all four of us are together to go down the stairs. Their legs are so skinny-looking in their snug fitting pj's and they stomp around like tiny trolls screaming with excitement. I try to soak up these moments.



Brady is like a hungry puppy. He MUST have a bite or taste of whatever we are eating no matter how full he is. No matter what it is, he'll stare at you and come close with his mouth open. Gee B, ya want a bite?

Sunday, April 24, 2011

Happy Easter

I hope the Easter Bunny was good to everyone. We just got settled back at home from our quick excursion home to celebrate with family. The boys were itchy to get out of the car on Saturday's ride up, and also during Sunday morning breakfast, but otherwise, they were pretty good. They went two days without a nap, so I'm sure getting back into their routine now will be good.
They were able to play outside with Jason to get some fresh air while I unpacked (in peace), and they have been fast asleep after a bath now for quite awhile. Let's hope for a good week and enjoy a few pictures below from the weekend.


The boys did an egg hunt with their cousin at Nana Jayne's house Saturday night. (Brady is in green, Jax in blue)

The eggs were smartly marked so the little boy's eggs were mostly small toys rather than candy.

I had to snap a photo of Saturday night dinner. Jax is playing with all of the Easter toys and seemed very entertained! He never seems to be interested in much more than taking drinks of things when we're traveling.

We stopped by my Grandma's apartment on the way out of town and the boys were not cooperating for a photo, so I jumped in!

The boys were playing in the front of Nana and Papa Lett's house on Sunday morning while we packed up the truck on the way to breakfast. Brady found his shadow for the first time and chased himself for quite awhile. Does this make anyone else smile? :)

The ONLY thing to keep Brady quiet at Easter breakfast was 16 oz of Daddy's orange juice!
He only gets milk or water, so he was PUMPED to realize other drinks exist. And yes, he was a total spaz from the sugar rush after this!

The boys watching cartoons with great grandma Lettenberger before the lunch party started.

Jason explaining the game of BOWLING to the boys outside today. We hauled this back from Jay's parents house - it was Jason's from when he was a child that his grandfather made.

Friday, April 22, 2011

Packing up

Jason got home yesterday from his business trip, so the boys are pretty excited about that. He was supposed to be home on Wednesday night, but his flight got canceled and he ended up flying directly to Chicago yesterday to go to his appointments.
We're busy packing everything up and trying to get ready for our trek home tomorrow to visit some family for Easter. Packing up for even one night is such a chore since we need a lot of "just in case" items for Jax. We don't typically go home for Easter, but I have another family event (a baby shower) I want to attend on Saturday, so we decided to go up for a night. We're going to try and limit activities since it's still a pretty bad cold and virus time.
Jax got sick this morning, so he had a nice 9-day run. He was upset at me for not allowing him to run off with my makeup brush, so he got upset and then lost all his breakfast. I think he's starting up another cycle, but Jason thinks he may have just been upset. We'll find out by tomorrow!
We hope everyone enjoys the Easter weekend, I'm sure I'll update with some nice photos when we're back.

The boys enjoying book-time with their speech therapist.

Tuesday, April 19, 2011

Good

I don't want to jinx anything, so I'll just throw out that everything here is "good"! I'm on a major germ-watch now to make sure this run goes as long as possible while sneaking in as many calories as well too!

Oh, and I'm terrified for Brady to ever get his adult teeth. Jason and I realized on Monday that Brady's good front tooth is chipped and all ragged sharp now. I fear what this kid will do to his permanent teeth some day! He inherited my grace apparently :)


Big B kickin' back... pantless... as usual.
(Look at the length we're gettin' on those short legs finally!)

And of course, Jax decided Brady's lounging was in HIS way.

There's yogurt and juice mixed into a smoothie in that cup!
He took a few good sips of it today.

A new game the boys started. They pull up a mat-square and pretend to hide under them.
You can barely see them, huh?

Then they jump up and yell like dinosaurs to scare you!

Sunday, April 17, 2011

Everything's better when you're standing on your head

Jax is still doing well and is vomit-free for the time being. I'm sneaking in an extra half ounce of food every night during his night feed. I'm hoping it will help with all the extra weight-loss he's had. I think I administered his last silver nitrate stick application for awhile on his prolapse that came out of his stoma site from all his coughing and vomiting when he had pneumonia. I apply the chemical every 2-3 days and it goes down little-by-little. It bleeds off (so we use lots of gauze, stoma pads and undershirts) and I think the treatment I gave tonight may be the last. I'll be able to tell in the next two days to see how much of the tissue burned down. These treatments don't hurt Jax, it's just a process to do the treatment to a wiggly kid, (remove the tube, keep him flat on his back so his stomach fluid doesn't come out, apply Vaseline, apply the nitrate stick to the tissue, re-insert tube, gauze/tape, smooch) so I'll be happy when the treatments are done and one less thing to do at bath time!

I took the boys to go see Jax's Orthopedist on Friday for his 6 month follow-up with his Sure Step braces. The doctor said he's still fitting in them, so we need to follow up in the next 3-6 months, so that's good.

Brady still stands on his head every chance he has, and if you watch him on the camera when he's in his crib, he'll stand on his head for 5+ minutes at a time. Tonight we were laughing hysterically watching him stand on his head and then pretend to read a book. He's hilarious. He hasn't tried getting out of his crib again since he did that first time. We're saved for the time being of making the switch, so hopefully he'll mature a bit before he starts that up again. Our plan is to remove most everything, toddler-proof the room, and then possibly put a safety knob on the inside of the door so he can't just walk out. But for now, I'm saved of another "project" until then. Brady got a new nickname from the speech therapist. He's calls him "Hold out" since Big B seems to be holding out with all his words and signs lately! I'm trying to challenge him more each day to try a sign or a word before getting what he needs. It's making for a frustrated little boy! His light bulb will go on sooner or later, and when it does, I laugh just thinking of the things that will come out of his mouth!


Jaxon doing his pirate growl.
I asked Brady to be a pirate and he gave me this face saying "THEESE" (meaning cheese).
He is hilarious. And yes, his pj's still have to be backwards.

The boys just hanging out today.

Thursday, April 14, 2011

Stuck on you

Jax's tummy is doing MUCH better. It's either that his body is recovering from that virus (only took a month) or his new medicine is helping his tummy relax, or maybe a bit of both. He took all 3 feeds yesterday without vomiting for the first time in over 4 weeks, sigh, it feels nice to take a break. He kept his breakfast down again today, so I'm hoping for a nice run here.
I forgot to mention in my last post that when we were at the hospital on Monday, that Jax got a new type of G-tube. It's a smaller, flatter low profile "button" called an AMT. It's nice because it won't catch as easily on things, which is nice with a very active toddler!

Brady has decided he no longer needs toys. He prefers the dishwasher, the cupboards, the oven, the dryer and the pantry. Pretty much anything that he can do to make me scold him. Today he got stuck in the lazy susan cabinet! I was discussing his progress with the speech therapist when suddenly we heard Brady yelp. We walked into the kitchen and couldn't find him. I saw that the lazy susan cabinet was open and all my pots and pans were messed up. Sure enough, Brady wedged himself inside the cabinet and the therapist and I had to inch him out. It took over 10 minutes!! I told Brady he was like Baby Jessica stuck in the well!
Jax did better with his feeding therapy today. He let the spoon near his face twice, which is a big accomplishment from the past month. He still is very receptive liquids, so I'm going to start sneaking in extra calories by having him drink more whole milk yogurt smoothies and some Instant Carnation Breakfast shakes. Slow and steady wins the race!


It was so nice out yesterday! We went on two walks.
Jax is looking like a vampire - kid needs to see some daylight!

Playing outside.

This is what little boys eventually do to their play kitchen.

Monday, April 11, 2011

GI/Feeding Team update

Jax did as expected in with the Feeding Team today. He worked with the feeding psychologist and she had us leave the room and view from the double sided mirror during a tantrum he had in the high chair. He has lost his spoon feeding progress, so I'm still pushing thicker liquids with a cup and need to keep working back with the spoon. Jax has complete down right sobbing and screaming fits when in the high chair and presented with food. It's SO hard to watch and remain emotionless (which you're asked to do). Jax gagged, screamed and tried vomiting through the entire process. If he hadn't already vomited up all his breakfast beforehand, he would've puked all over the therapist.
Jax lost weight as we suspected and is down to 22lbs, 4oz. He obviously doesn't meet the medical guidelines to get into the feeding program. The staff wasn't happy he was so sick with pneumonia, but they were glad that there was a reason for his weight loss. I was reminded again to not have expectations of time lines when Jax will get into the program, and when he does get in, to not have time lines of when he'll ever get off the tube. I know... but I still hold out hope every 3 months that he'll at least get accepted into the program. Maybe this summer...

We met with the GI specialist afterward and had a nice long discussion with him. He said it's not untypical for kids with GI issues to have a few weeks of lingering problems after a big illness, so he wasn't surprised to hear that Jax is still getting sick every morning. We talked a lot about mitochondrial disease and where to go with Jaxon from here. The doctor said that while he doesn't discount that it could be a possibility, he does not think Jax exhibits new symptoms to move forward with testing. He said that lung issues aren't typical "next signs" over things like the brain or other major organs. Since Jax is moving forward with his development delays, he thinks that more signs still point to an immature system, especially since there's reasons for all of Jax's issues. The doctor said that they typically test kids for mitochondrial dysfunctions when there are no other reasons for the delays or medical issues. Since Jax is so tiny, the doctor truly believes his system will get better as he grows. We just need to get him to grow, which is hard when he keeps getting these virus' that pound him so hard. His symptoms still point toward having such low blood flow during my pregnancy and being born with growth restriction and prematurity - all due to the knotted cords from mono/mono twinning and twin-to-twin transfusion syndrome.

We're starting the drug Periactin back up to help with Jax's hunger and ease his tummy and hope that helps things along a little bit. He'll take it twice a day for 3 weeks on and 1 week off and see if that can help him more. So we will keep the faith and keep on, keepin' on.

Sunday, April 10, 2011

Warming up

We had a warm weekend here. The boys were able to get plenty of fresh air and we've been reminded how impossible it is to get Brady inside once he's been out playing. If they didn't run in opposite directions outside, it would be a bit easier to chase them, but wow... they do have their own minds!
Nana and Papa Letts visited and got see all the progress the boys have made, so that was a nice visit. I was able to sneak away and visit the Bonin babies in the NICU for a little bit on Saturday, and oooh there's a picture below!
Jax is still having vomiting episodes each morning, so I gave him some Zofran this morning to see if it would help. Unfortunately he still got sick. He has been doing decent with taking drinks of a yogurt smoothie instead of just water. He hasn't been taking any food off a spoon since he had pneumonia, so I'm happy to at least see him drink the smoothie during feeding practice. And of course by "drink", I mean a few sips, but he takes the sippy cup himself and self-feeds, which is awesome!
Otherwise, life is full of these two crazy 2 yr olds. I'll update tomorrow after Jax's GI/Feeding Team follow up.

Me with baby Kelsey.

Proud Daddy - Craig with Drew and behind is Miss Kelsey snoozing.

Brady just looks hilarious in this photo from dinner out on Saturday night.

Jax was hitting the baseball with his golf club. Hey, whatever works, right?

Brady took the neighbor boy's helmet and wanted to ride bikes just like him.


Brady and Daddy doing story time right before bed.

Thursday, April 7, 2011

Escape artist out of the crib!

Well it finally happened. Brady can get out of his crib with a loud THUD and then I hear the door knob turning. (sigh...) This would normally be a good time to switch him from the crib down to the toddler bed, but he just doesn't seem to be ready for it. He doesn't understand "stay in bed". I was hoping his receptive and expressive language would get a bit better over the next couple months, and we'd have him in a "big boy bed" before his 3rd birthday, but I'm not sure what to do. He can't say "mama" or any two word phrases yet, so actual conversations aren't happening anytime soon. When we get him out of bed in the morning, he RUNS to Jax's room and throws open his door. The thought of Brady being FREE at night and early morning to run around our rooms is not a good thing yet. What to do...

The boys had a good session with speech therapy today. Jax has his own rendition of saying "high five" and a few other things not understood by the general public, but we know :)
Jax hasn't been doing well in the mornings lately. He had 3 episodes by 10:30am today. I hope it doesn't mean he's coming down with ANOTHER bug, and maybe just his GI cycle acting up. He's still doing decent with his lunch and dinner, so that's a positive.
I had a long conversation with the chiropractor and speech therapist this week about Jax's condition. I wanted to get their opinions since they've known him almost his whole life and have been people in his life trying to improve the quality of his life. I know the subject of mitochondrial disease is going to be coming up at Jax's appt on Monday with the GI/Feeding Team, and I've been trying to get my thoughts straight about it ahead of time. With Jax's latest lung issues, I know it's inevitable to come back up.

To catch any of you up, Jax was considered to have this disease when he was diagnosed with pseudo obstruction. It's very common for babies/children with motility issues to have mito issues since the cells in the body don't have enough energy to produce food/oxygen and the nerve function in the gut get affected first. Thus the body doesn't work properly. Jax had blood testing done at 9 months old and the results were 'inconclusive', so the term "suspected mild mitochondrial disorder" has always remained on his file. We decided to treat Jaxon as if he had an immature system due to his low blood flow in utero as the result for his issues and prematurity, unless his system failed to improve or new symptoms presented.
Well... it may be time to look back into this. The reason we didn't move forward with more testing was because the next way to test is a bit invasive (muscle biopsy) so we wanted more reasons to test. Jax was actually treated for cellular energy issues from the alternative doc since he tested to have a dysfunction through all that independent testing we had done (so that of course is always in the back of my head).
Having this diagnosis would only give his issues a name, and of course have us change his treatment a bit. There's no cure, and it's thought to be mostly a childhood disorder since the progression of the disease doesn't allow many children to become adults, but there's always ways to support it, not to mention there's hundreds of different kinds and severities. We also need to know since this is genetic. Now there's all sorts of reasons as to why Jax would have this and not Brady, or it's possible Brady does too and it will show up later or only get turned on from viral infections etc etc. There are so many IFs, that it can drive a person crazy. Which has slightly been happening to me since Jax had pneumonia. I've been a bit of a wreck and find myself in tearful conversations with Jax's "people".

I'm hoping for the best, of course, but the looming thought takes me some days. I don't do well with unknown, especially when it's my child. I just need some control, and if that's a name or a diagnosis, I can at least fight the fight.

So not to end this on a downer (sorry, thanks for the therapy), since of course it IS possible that Jax will be walking, talking, eating and breathing just like all the other kids walking into kindergarten, so I keep my chin up. And I know you all do too, so that helps. Thank you.

Never to leave us without a smile, here's Brady who decided to blow on his tongue to make crazy noises all day today.

I also keep finding Brady stealing every piece of paper he can to color on it. Here he is with the 10th envelope or so this week. Mind you, he's about 10 ft away from coloring books and note pads. Is it irony that he's lounging on the "naughty couch"? Hmmm, we may have to re-think that one.

If anyone would like to read about mitochondrial disease, this a great site with all the info you could ever want. http://www.umdf.org/site/c.otJVJ7MMIqE/b.5472191/k.BDB0/Home.htm

Monday, April 4, 2011

BeBe!

The boys had a good weekend. Jax still has some morning-tummy-issues, so we've been giving him a little less in the morning and a little more at night to help. He has good days and bad days. We had a very low-key weekend which was in major need! We cleaned the house and visited with neighbors on Saturday and kept the boys home all of Sunday except for a car ride to the hospital to go visit the Bonin babies in the NICU. The boys watched cartoons in the car while Jay and I each took a turn to go see the Bonins. I was able to get grocery shopping done while the boys napped, so I'm happy to COOK DINNER all this week instead of throwing things together. I enjoy planned cooked meals, so it helps me with my zen!
Jax is doing well with his speech and now calls Brady "BeBe" which is pretty cute. The boys are really interested in letters and numbers, so we go through them hundreds of times a day. They like to pretend to count which is pretty cute.
We had a meeting with the county school rep to discuss next steps for the boys when they turn 3 this summer. She's referring the boys for a developmental evaluation (just speech for Brady, global for Jax), so the ball is moving on all of that. I have a call into the pediatrician for her to send her prescription for Jax's next set of braces that the physical therapist recommends, so the ball is moving on that, and finally, I've been collecting a lot of information and research for Jax's GI/Feeding Team appt on Monday to discuss some next steps with Jaxon. After I discuss things with the doctor, I'll discuss them here. Until then, we'll be enjoying this good week!


Brady looks like a deer in the headlights when I walked in on him with his pants off and standing at the toilet! He's just too cute sometimes.

The boys playing with some neighbor friends. I found Jax in the sandbox with vomit all down his jacket. He's the only kid I know that will throw up and continue on as if nothing happened.

Here he is all cleaned up!

A few of the neighbor boys all trashing the neighbor's house.