Thursday, December 30, 2010

"Uh-Oh"

We're enjoying the week of Jason's vacation, although his vacation just means he works from his phone and computer rather than being on the road. We've been working on the house and running errands each day and there still seems to be so much to do all the time.

Jax's health remains strong and steady, and he even says "uh-oh" (kind of) now. He's not doing great with his oral eating practice, but I'm hoping the Feeding Clinic will be able to give more suggestions at his big appt on Jan 10.
He's also been doing some odd night-waking for the last 10 days or so. He wakes up SCREAMING like he's scared or in pain. When I go in to see what's wrong, he doesn't want to be picked up or comforted and remains totally wild and screaming. I walk out of the room and he settles himself down to sleep within a few minutes. It's so strange. I thought at first that it might of been bad dreams, but now that it's happening regularly, I just don't know what that's all about.

Brady is trying to learn how to drink from a big boy cup. That is a non-straw sippy. I got him a sippy that you must tip up and close your lips around the rim, but he just can't get the "tipping" of the cup. He switched from bottles right at 12 months, so he never got the whole "holding and tipping" thing down. This is our next mission!

Sunday, December 26, 2010

A Christmas in pictures

Uncle Adam and Jess with the boys on Christmas Eve.

Jax playing with the Christmas tree with Grandma Laura looking on.
The boys loving the train under Aunt Mary's tree with Josh.

There's a smile from Bumpa!
Marley and the boys opening gifts on Christmas morning.

Our best attempt at a family photo.
(I think Jax and Jason look alike in this photo)

Jaxon required the rocking horse to be taken out during the Lettenberger Christmas party. The boys were on day 2 of no naps and were behaving less than to be desired!
Great Grandma Lettenberger keeping Jax occupied here.

The boys helping Great Aunt Suzy and Great Grandpa Letts open their gifts.

Brady peeking at Jax under cousin Aidan's Iron Man helmet.
Brady opened this gift when no one was looking - sorry Aidan!

Nana Letts and cousins Aidan and Anesah opening some gifts.

The boys entranced by their Leap Frog gifts.

Jax with Aunt Christa.

Look at these hams!
Jax and Aidan.

Our best attempt at all the kids together.
Brady was not cooperating!

Thursday, December 23, 2010

New bumps and bruises

We're getting ready for the hustle and bustle of the holidays (read: we'll be moving non-stop for 48hrs beginning tomorrow). Brady proved to be his accident prone self yesterday by pulling down a stocking from the mantle and bringing down my entire candle display. (sigh...)
Candles and glass EVERYWHERE and of course the little bean got knocked on the head and cheek causing a cut and a little shiner on his eye. Seriously, he likes to shave years off my life.
Keeping the boys on the couch while I cleaned up the glass was the most difficult part, but we got it figured out.
Brady continues to take any and all clothes off that he can. He answered the door to the speech therapist this morning without his pants on. He's so funny.
Jax remains to do awesome. It's so great to be moving his pump rate up each day without any problems, it's such a blessing!

We hope you all have a fantastic holiday season and we'll be back with plenty of celebratory pictures from our events!

The crime scene.

The new cut on the forehead and the shinner on the other eye.
Must he continue to beat up that gorgeous face?!
Look at beefy Jax!

Brady sat next to me while I put on make-up and he pretended to put on chap stick.

Then he used all my makeup brushes to brush his hair. Too cute.

Monday, December 20, 2010

Procedure canceled, yay!

Jax gained 8oz (1/2lb) since switching formula, woot woot! The GI staff is SO pleased with Jax's weight gain and the absence of his vomiting and diarrhea. His scope/colonoscopy procedure has been canceled and I'm just thrilled!
Our job now is to slowly but surely move his pump rate up to get him processing his food faster. He currently takes 2.5 - 3 hrs to take in 10oz of food at a time, so I'm going to increase him a tiny bit each day. Our goal is to get him to a more normal "meal time" like how we all eat. Then oral training will have a better chance at success.
We meet with the full Feeding Team on Jan 10 and I have high hopes that they'll take him off the "medically unstable" list and move forward with the oral training. I'll also be talking with the GI doc about what this all means now that Jax is doing well on this other formula. Does this mean he does have a fructose processing issue? The dietitian told me to continue doing the natural/organic tastes until I discuss with the doctor.

This is the best news. I'm trying to remain cautiously optimistic, but I'll certainly admit that my hopes have certainly gotten WAY up that this could be the road to recovery. I certainly get to hope, right? Our little Christmas miracle.

Sunday, December 19, 2010

Pretend I didn't announce it...

The boys had a fun visit from Auntie Rachel and Uncle Dennis to celebrate some holiday fun. The boys seem to love opening gifts this year, so that is fun. They do NOT like Santa Claus though, but maybe they will next year. Santa was walking through our grocery store giving out candy canes today and Jaxon had a screaming meltdown. This was his third encounter with the red suited man and I'm sure Jax thinks the man is following him :)

Brady continues to disrobe his clothes nightly and now sings "EEE-I" swaying back and forth (to the song old McDonald had a farm) and has me finish up with "OOO". Jax continues to have fabulous health. I'll be hauling the little guys to the hospital tomorrow to meet with Jax's dietitian. We'll weigh him and see if he's gained any weight since not vomiting or having diarrhea now for over two weeks. Yup, you read correct. It's been 12 days, YAY!
Ok, shhhhhh, I'll go back to silently being over the moon about it...

The boys tearing into their Christmas gifts, thanks Rachel and D!

Thursday, December 16, 2010

Holiday Party

The boys had their holiday party at the therapy office. They had a lot of fun, but we had to leave after about 45 minutes. I was running after one of them the entire time and they just had enough by the time group singing started. There was NO way they were going to sit in a group circle and sing!
Jax is still doing rather well. He had a little bit of blood in his diaper yesterday, but he strained really hard to go, so I assume that's what that was from. We plan to meet with the dietitian on Monday, so we'll be discussing if we can cancel the Jan 4 procedure or not. Fingers crossed he gained some weight!

The boys did well in speech therapy today, except Brady remains the strong silent type who doesn't want to give up many words lately. Jax took a 1/4 ounce of yogurt four feedings in a row (the amount of a tablespoon) until we had feeding therapy and he decided he didn't want to show the therapist - of course!

The boys on the balance swing at the therapy office.
Sorry the picture is blurry! Last year Jax got sick on this swing, but not this year!

Santa take 2 = fail

They did however like the gifts that Santa gave them.

Ball pit.

Making cinnamon ornaments with Mr. Nick (speech/feeding therapist)
Jumping trampoline.

Tuesday, December 14, 2010

Keep your clothes on!

Yes, this is our new problem. Brady likes to take his pajamas off while in bed. Each night I sneak in after he's asleep to put his clothes back on him. Thankfully he still fits in onsies, so he's not completely naked. The first thing he does when he wakes up? Sure enough, takes his pj's off. He wears the one piece footed fleece pj's so his feet are covered since he doesn't get the concept of keeping a blanket on. He is so funny!

Jax gets his new formula delivered today, so we'll see if it helps over the next few days. I have tons of hope that this formula change is going to help keep the diarrhea (and maybe vomiting?) away, thus allowing him to gain weight and possibly becoming "medically stable" enough for the feeding clinic. I'm full of hope!

I have no idea where these sunglasses came from!

Um, you'd think we don't feed Brady. He stole this off the counter!

Yes, pots are hats to Jax.

The boys playing with my coffee k-cup rack. Ya think we got stir-crazy today?

This looks sweet, but in reality, Jax tackled Brady to the ground. Again.

Sunday, December 12, 2010

Holding steady!

I'm late on the updates, sorry!
We had a busy week of appointments. Jax is starting to hold his chiropractor adjustments finally, so after this week, we may move his adjustments to every 10 days to see how he does (I've been taking him every single Wednesday for as long as I can remember now). I had Brady adjusted since he took a big fall last week, and he should be back on track after tomorrow's appointment.
Jax is doing great with the formula change. His vomiting is certainly down (even on full 30 calorie meals) and I hope that holds for awhile - I hate announcing how long he goes without vomiting, because whenever I do, he seems to get sick that day or the next. I swear it's uncanny! So I'll just say it's been down for awhile for now.
The diarrhea has remained gone, but he's straining to go each day, so the GI dietitian called in a formula change of Pediasure w/Fiber, so hopefully that's the final change to help make things as normal as possible. If Jax remains on this path for the next week or two, we can cancel his Jan 4th procedure, so fingers crossed!

Jax was re-evaluated for physical therapy and he actually seems to be on a good path by himself. So we'll see how he progresses and have him re-evaluated by the time he needs to be re-fit for his leg braces. I'll be consulting with his old occupational therapist since he scored so low with his fine motor skills in the NICU development assessment.
Jax had a great speech therapy appointment and said a lot of words or did the sign language for them. He says "at" and pats his head for hat, and said "ba" for blocks and did tons of animal sounds while pointing out all the parts of his face when asked (ears, eyes, nose, mouth etc). Brady was not in the mood to participate and decided he was not going to do any words that morning. I guess two year olds are just as moody as adults! Although, he did enjoy dancing while we sang songs.

Here are a few pictures from the last few days:

I'm not sure if they're hugging as Brady comes down the slide, or if Jax is tackling him.

Brady has no concept of size. He truly tried to get into this box repeatedly.
Jax is enjoying the train set (early Christmas gift from Nana/Papa) and loves to say "CHOO CHOO" all.day.long. We took the train out to distract the boys from the Christmas tree - it worked mildly.

Big smiles from Jax as Brady makes me some food from his kitchen.

Common scene these days - lots of wrestling.

Tuesday, December 7, 2010

Neurology and Dental updates

We met with two Neuro docs today and that was a LONG 3 hr conversation and exam. The final outcome is that they do want Jax to have an EEG, but feel confident that his "episodes" are choking episodes rather than seizures. They were more concerned about the fact of what they read in his medical history.
These are the reasons they want the EEG:

Low blood flow in utero (donor twin), first two APGAR scores were 1, needed to be resuscitated going at least 5 minutes without oxygen, intubated, brain bleed, 3 months of NICU, and still has significant global developmental delays past the age of 2.

None of this is new news to me and doesn't change anything, so I'm ok with it. The doctors feel confident that his problems have other reasons than Neurological to be the cause for all the health/development issues, but they feel that it would be negligent on their part to not "check" with an EEG. They reviewed his MRI he had in 2009, and feel he doesn't need another one (so that's GOOD) but certainly need his brain wave activity on record since he did incur such trauma as a newborn.
I told them that 4 months ago he couldn't walk, talk or eat, and now he can walk and say HI :) The doctor called me Positive Pete, which was pretty funny.

I truly hope they are right and all his issues stem from his GI and prematurity (low blood flow) and it's not neurological because I've always felt very strong that this is all beatable with time and hard work (and of course patience).

So that's that. He'll have the EEG done on Jan 21 and they want me to try and capture the convulsing vomit on video - haha, ok.

The worst part of the day was when J & B decided they did NOT want to get in the stroller or put on jackets or hats and run in opposite directions. I left with two screaming, bucking, crying kids totally mortified. Good times!

Brady's dental appointment went as well as could be expected. He was not happy about getting held down for the X-Ray, but it showed no damage to the adult tooth buds (whatever those are). Apparently he has a little bit bigger than usual overbite which is good for this exact situation (odd since Jax has quite the opposite under bite). His bent-in tooth doesn't touch his bottom teeth when his jaw is shut, so he can keep the tooth! It has a good chance at changing color, so that stinks, and we can't reposition it back forward since that will disrupt the adult tooth buds, so that stinks too, but the fact he can keep it makes me happy! The tooth went up and in a little bit, so we're lucky it didn't do more damage! We have to watch for lumps in the gum line, but otherwise he's just healing up fine, and no more fever.

It's been quite the day, good night!

Monday, December 6, 2010

Dental update

Brady will be seen by a dentist tomorrow. I spoke with the on-call dentist at Children's Hospital and he said that since we can't wiggle the tooth, he'll be okay until tomorrow and that the damage is already done. We'll just do an X-Ray to make sure the tooth didn't disturb the adult tooth buds resulting in extracting the tooth. The dentist thinks that will be unlikely, but we just need to check, and also examine the gums and position of the tooth.
Jason will be out of town, so tomorrow will be a crazy day alone with the kids for Jaxon's Neurology consult and Brady's dental visit, give me strength!

The boys excited about the present (personlized place mats) that St. Nick brought them.
Can you see Brady's uneven front teeth if you click on the photo to enlarge?

Sunday, December 5, 2010

Always the FRONT tooth, isn't it?

I was finally able to get Jax his Neurology consult set up. He'll see two doctors on Tuesday morning. They will examine him and decide if an EEG is really needed. Obviously my hopes are that it's not even a concern and his episodes really are just convulsing from bad vomits due to his GI issues. I will keep you all updated on that.
His poo is REALLY firming up. Yesterday he had a great stool, and then today he strained and got out some hard pieces. So now I'm a bit concerned he's going to get constipated and we've only been at half strength of the new formula for the past 4 days (so I'm changing him over VERY slowly). His GI system is SO sensitive. We'll see how this one all unfolds now.

Brady took a nasty fall this weekend resulting in his front tooth being pushed back - gah! His gums are dark purple and it just looks painful, the poor peanut is such a cluts :(
I called the on-call pediatrician and since we can't wiggle the tooth, we'll be calling a dentist first thing tomorrow to get him in for X-Rays. We want to make sure the tooth didn't go up and affect the nerves for the adult tooth.
Obviously that's our biggest concern.
My shallow concern is that his front tooth will turn black or die and fall out. I'm trying very hard not to worry about that, but I can't help it. It seems like it would be a natural feeling to have as a parent, especially since he's only 2 and won't be getting an adult tooth in place for many years. I also hope that if that does happen (he loses the tooth) that it won't affect his speech since he's already struggling with that.
But who knows, maybe the dentist will say he'll be just fine and the tooth may just stay pushed back until it falls out in a few years, I can hold out hope! And if anybody knows that things could be worse, it's definitely us, so I'll hold on to positive thoughts.
Brady had a low grade fever (99.7) before bath time and I felt sick thinking it could maybe be in relation to a possible abscess on his gums or something, but the on-call pediatrician thinks it's just a coincidence since it was low grade.
I will keep you updated after I get this kiddo to a dentist tomorrow!

Thursday, December 2, 2010

Wrestle Mania

The boys are doing well. We brought them to our town Santa party at the fire station. As expected, they did NOT want to sit on Santa's lap. Jax was scared while we were in line, whereas Brady was rather content because they gave him a cookie. We went to our neighbor's house afterwards and the kids had a BLAST running around and playing with the other kids.

Jax is getting half of his new formula and half of his old (we're switching him over slowly) and he's responding really well so far. His stool is thicker already, but history has told us with Jax that his body usually responds favorably for a week or so and then resorts back, so I'm cautiously optimistic. He'll be on his new food fully by next week Wednesday and we'll see how he is 2 weeks after that to get a real picture if it helps.

Brady has been a babbling fool. The speech therapist was just laughing the entire session today. Brady has full on conversations with himself, his toys, Jaxon and us all the time! The babble is just so cute. The boys are now finally touching each other. They will hug, which usually turns into a wrestling match. I got them to smooch each other again yesterday and it was SO SO cute!

Jax's face full of a pudding shake!
(His oral feeding is still shakey. He'll do great one day and refuse food the next.)

The boys wrestling so hard that Brady's pants came off!

Brady decided he didn't need pants and wanted to do somersaults!

Jax working on his fine motor skills.
(I filled the string with beads and instead of taking my lead and continuing
the string, he's just taking them off)

Classic tantrum on Santa's lap!
(maybe next year they'll actually be excited for it...)

More wrestling that ended in a smooch rather than a de-pantsing!