Monday, November 29, 2010

HONK

It's amazing what you can get done in a day isn't it? Jason's "vacation" is over, and I use quotes since that he only worked from his phone for the week... well, and the laptop was out a few times, but we're back to the normal daily routines again.

Jax received his new formula today (Pediasure), so he's getting a 1/4 of that and 3/4 of the original formula for a few days and he'll get more and more until he's fully changed over by next Wednesday. We'll see if it helps his diarrhea and hope it doesn't cause vomiting.
Which has been back the last two days (GAH!). He's had an upset tummy at the end of his morning feeds, but I did realize today that he skipped his chiropractor appointment last week, so I'm wondering if that has anything to do with it. We have noticed that when he's doing well, we start to push back his appointments, and lately we've decided to keep them at once a week (also because his hips are shifting from wearing his ankle braces). We'll see how he does after his appointment on Wednesday and the new food through the week.

Jax's EGD scope and Colonscopy procedure has been scheduled for Jan 4. That gives us 6 full weeks to see if the food change will truly impact his diarrhea (signally a fructrose malabsorption issue). The doctor said we'll have a good idea within two weeks of the full switch, so there will be no question if the procedure is needed or not. Poor Jax was up crying because he had diarrhea while in bed and it burned the side of his bum/top of his leg. How awful?
I played phone tag with the Neurologist office and our pediatrician's office. The hospital did not get the faxed paperwork, (of which was paperwork faxed from the ER to the pediatrician, and then faxed to the Neuro) so I had the pedi's office re-fax, then I called Neuro through central scheduling again and was told a nurse from Neuro will call me IF they got the paperwork. Um, how do I know if they got it? Wait another 2 weeks? It is a serious cat and mouse game to get an appointment there of which was told to me leaving the ER that I HAVE to do... seriously, I have 3 different doctors wanting this EEG, but it's like pulling teeth to get an appointment, ugh.

In Brady-news, he HONKS like a goose very loudly, all.the.time. Jay and I actually got headaches from the non-stop honks during bath time last night because it echoed through the bathroom. If you ask him what a sheep says, his response, "HONK HONK HONK", it's honestly hilarious, but wow, it's LOUD. He's also been covering his ears. He seems to do it if he's being shy and if he does something sassy. I laugh thinking he doesn't want to hear us yelling at him, so he prepares himself! That will make you feel like a great parent! Geeze that kid, he's so funny.
Although today he took a nasty digger on the hardwood floor and came running to me so upset. I hugged him and right when he was calming down, I saw Jax starting to vomit in the other room. I jumped up which upset Brady, who ran after me and then he fell AGAIN and hit his head in the same spot. I felt AWFUL, but at the same time I was helping Jax who ended up having a small choking episode again. Brady laid against my back crying while I was hunched over Jax, who was hunched over a basin. I always feel so guilty for not having one extra arm in moments like that.
After 10 minute of chaos like that, I usually just grab some coffee and pull out books on the couch to cuddle them both... (insert deep breaths).

Cousin Marley with the boys.
Brady was on the GO this afternoon!

Jax was more than happy to sit for a nice picture!

Friday, November 26, 2010

Happy Thanksgiving (a day late)

Happy Thanksgiving! Well, I guess it's Happy Black Friday technically, but nonetheless, you all know we're THANKFUL here!
We were able to visit some family, attend a birthday party, get our Christmas tree up, half of the outside lights and plan to see some more family this weekend. All-in-all, we're busy and yet finding some relaxing time as well, which is nice.
Jax is doing pretty well. The diarrhea is of course always around, but his tummy is doing pretty good (knock on wood). We'll be getting the new formula on Monday to start Jax slowly into it to see if it eases any of his diarrhea issues. I tried calling the hospital today to check on the Neuro consult, but the central scheduling office was closed. I'm hoping to hear about the EEG and the GI procedure early next week.
Brady's "shyness" has really set in. I mentioned it a few weeks ago, but it seems to really kick in once in awhile now around adults or unfamiliar places. He did just fine at the birthday party today, but other times he clings to my or Jason's leg. So odd to suddenly start happening now.

Here are some pictures, and I'll have more to come by the end of the weekend...

Great Grandpa K with the boys.

Jaxon copying his cousins by rolling on the ground.

Brady with Father Dick (great Uncle)

A whole clan of cousins

The boys at a birthday party.

Oh the fun chaos!

Neither Jax or Brady sat for the group picture...
Brady ran ahead of us when transferring rooms during the party and this is what we walked in on. He sat himself down at a piece of pizza and some juice and made himself at home. We ended up leaving 5 minutes later because Jax didn't understand the group-eating portion and lets just say it was time to leave.

Jax picked up this little lamb and said, "BA BA BA!" He also loves to make a choo-choo train sound all.day.long. It's so cute.

Monday, November 22, 2010

GI update

Jax had his GI specialist appointment this morning. At first he was weighed with his clothes on and they thought he had great weight gain. I knew that it was way too much of a gain for my Jax. We went back and re-weighed without clothes (only a dry diaper) and sure enough, he LOST a couple ounces. Blech.
After all was said and done with the appointment, it's clear that Jax needs to get at least 10% more calories a day, which has always been hard since he has a volume sensitivity and would get sick if we pushed it too much. But since moving his nebulizer breathing treatments to the evening, his morning tummy has been MUCH better. So we'll be working on getting more calories in. The doctor knows that some of Jax's weight issue is keeping food in, but the other part is still the mystery diarrhea. It's either because he doesn't process sugar properly (fructose malabsorption) or it's an issue we haven't found yet.

We plan to slowly switch Jax from Neocate Jr to Pediasure formula which is a different fructrose base (and is actually a normal milk based product) and see if that helps with the diarrhea. In the meantime, we'll be scheduling the EGD scope and colonoscopy with tissue biopsies. His pancreatic enzyme function will also be tested. The doctor said that if Jax responds fabulously after the formula change, we can cancel the procedure, but we should get it on the books. As long as Jax reacts okay to the anesthesia, it should be an outpatient - one day procedure. We'll be attending a pre-op appointment a few days prior since Jax has a PDA-closure in his medical history (this was his heart murmur while in the NICU). So they'll be testing his heart function to ensure he can be put under for the procedure. It's been 1.5 yrs since he's been sedated (his MRI and TPN line in May '09) so it needs to be re-checked.

I feel good about our plan, although I know my anxiety will creep up the closer we get to procedure day. I of course feel awful "prepping" Jax for this sort of procedure since his GI tract will have to be completely cleaned out 24 hrs prior, and watching him get his IVs is always hard since all his veins were blown since NICU days. But I also know that my daily anxiety of counting his calories and ounces of food and worrying about his weight is also driving me slightly crazy. I just want to make sure he's ok, and if he has some sort of condition, we need to know so we can start treating it and help him gain weight and relieve his awful daily diarrhea. So we'll see how the next 2 wks go with transitioning him every few days with more of the new formula and less of the old, as usual, we shall see.

As I was packing everything up to leave Jax's appointment, I heard Jax and his lovely diarrhea. I changed him quickly so he wouldn't be sitting in it for the drive home, and I'm very glad I did. I took his diaper off and was STUNNED. He had what looked like blood in his diarrhea. I saved the diaper and hunted the nurse down. She got the doctor and he tested it (yes, he had a test kit in his lab coat) and sure enough, he had blood in his stool. The doctor isn't too alarmed, but we'll be watching for this more now.
Ugh.

Thursday, November 18, 2010

NICU development appointment

The boys had their NICU development appointment this morning. We're not surprised by any of their "grades". It always stings to hear, but nothing wastoo surprising. Both boys are being referred to the Early Childhood preschool for their delays at age 3 (to be getting qualified by this spring per the school district's rules), which is a hard pill to swallow, but I knew it was coming. The therapists said that since the boy's cognitive scores are so GREAT, they aren't worried that they won't catch up on all this some day, so that was nice to hear. They just need the time and the help.

Here you go:
Going from the age of 26 months for prematurity (28 months actual)

Brady:
Weight - 23lbs, 14oz
Length - 33 1/2"
Head - 19 1/2"

Cognitive (play skills): 25 mo (yay!)
Fine motor: 27 mo (yay!)
Gross motor: 19 mo
Receptive language: 18 mo
Expressive language: 15 mo

Jax:
Weight - 22lbs, 4oz
Length - 33 1/4"
Head - 19"

Cognitive (play skills): 23 mo (yay!)
Fine motor: 16 mo
Gross motor: 20 mo
Receptive language: 14 mo
Expressive language: 15 mo

So overall, Brady's speech is what will qualify him for the Early Childhood development preschool in fall if it doesn't take a big leap. Jax's speech and fine motor will most likely qualify him. Jax's leg braces are really helping him with his gross motor skills a lot, so I'm so happy to see that!

Wednesday, November 17, 2010

National Prematurity Awareness Day



Today is National Prematurity Awareness Day. Every year, 20 million babies are born too soon, too small and very sick-half a million of them in the U.S. November 17th is when we fight! As many of you know, my guys were born at 31 weeks as an emergency crash c-section due to a rare twinning condition (monoamniotic/monochorionic). While my story is not as common as other premature births, the outcome is the same... two babies with very low birth weights with a lengthy NICU stay and a continued daily fight even two years later. No one should have to watch their baby's first few months of life through an incubator window, and I hope to know no one else who will.

Tuesday, November 16, 2010

So many experiments

Jax finally got a break with his vomiting today. I decided to hold off giving him his nebulizer breathing treatment until lunch time rather than first thing in the morning. He's been gagging while getting his breathing treatment, so I'm doing a little experiment to see if his stomach is too weak in the morning to get the inhalant. He took his entire morning feed and was fine today, so we'll continue and see if that has been upsetting his early tummy. There's always an experiment going on! His diarrhea continues, which can be hard on his little bottom, but we'll be discussing that with the GI team on Monday.

Brady broke out in some hives on his legs tonight. Our only guess is that it could be the fresh blueberries he had at dinner time. He also had some fresh organic honeycrisp apple slices, but he had the same kind of apple a few days ago. He's had blueberries before too, so I'm not sure what it's from. We'll be keeping our eyes on that now.

We have a busy rest of the week with a chiropractor visit, a NICU development assessment and feeding/speech therapy. Jax has been doing pretty good with his feeding therapy. He won't take many bites or many sips, but the quality of the open mouth bites of purees and straw sips of milk instead of just water are coming along.


I can't tell if this is sad, or cute. Brady took out a box with a picture of a laptop on it and is pretending to type.

And then off to the left is Jax SCALING the side of the stairs.

Our neighbors put up another toddler swing so both boys can go on at the same time!

Sunday, November 14, 2010

Back off! I'm blazin'

We had a quiet weekend at home with the boys. We just ran errands, did a little holiday shopping and worked on some house projects. Jax's upset morning-tummy has remained. He can't get through any morning-feeds without getting sick. We're thinking of really cutting down his breakfast (even more than usual) and working more on oral food. I plan on using heavy whipping cream with milk and pudding to help with the calories. We'll see how that goes since he's been rather open to oral tasting lately. His diarrhea is sure not letting up, and his poor bottom is taking a beating again. I really wish we knew why his system is like.

Funny enough, Jax refers to me finally by a "name"... but it's DAA DA. He says it in a very particular way and always yells it twice in a row while running to me. I always correct him that it's MAMA, but no dice yet! He tried saying BELLY BUTTON with me, which came out in some crazy talk, but he tried. He's been trying to repeat words a lot the last few days, so I'm hoping a word explosion will be coming around soon.

Brady gave us a nice surprise on Saturday morning. Jason put him to bed without a onsie on underneath his zip up pj's and sure enough, he had unzipped his pj's, taken off his diaper and peed all over his bed. He thought it was hilarious, and gave Jason quite the lesson that Brady NEEDS a onsie on at night time to keep his curious hands off his diaper :)
That was funny.

We took the boys to Buffalo Wild Wings for lunch today and they did AMAZING. They loved coloring, playing with a car and watching all the TVs with all the football games on. Brady ate his food like such a big boy while Jax kept sipping on milk through a straw, it was SO nice to get a meal out a restaurant (we don't get many!) and really enjoy ourselves. We snapped a few photos with Jason's phone:
Brady coloring at the table wearing his cool paper crown.

Jax's paper crown said "Back off! I'm blazin'"

Jason totally immersed in one of the games while holding the milk to Jax.

Thursday, November 11, 2010

Onto a neuro visit now...

Ugh, what a morning.

Jax had a weird puking/convulsing episode when I was taking him out of his car seat to go to the YMCA for his PT gymnastics. He went BANANAS and was shaking with vomit coming out his mouth and nose and then he was convulsing so hard he ripped right out of his seat and hit the seat in front of him. A man walking by saw it and yelled that he was calling 911. The Y staff came out to help and said they heard a child was seizing.
The fire trucks and paramedics got there and Jax was just crying and clenching to me. They checked him over and he was hysterical in the ambulance so they said I had the choice of driving him myself to the ER or them taking him.
Since he was stable, I took him myself to keep him calm. All the fire fighters and Y staff were playing with Brady and trying to clean up the truck from the puke. They're so nice. A fire fighter was *thisclose* to driving my truck because I was shaking and crying. I pulled it together and it was fine.
The ER counseled with our pediatrician and a neurologist and believed that he was stable enough to go home and see a Neuro for an EEG in the next week or so to check for seizure activity. That was a fun 3.5 hrs in the ER with two 2 yr olds by myself. Thank goodness I always have toys, snacks and the nurses provided a Blues Clues DVD!

I personally think he was choking on vomit and panicked, but obviously I have to let a Neuro prove that. I think that since someone saw this episode, it scared them. I know it's hard for other people to see these sorts of vomiting episodes that get violent, but I will admit, this one was quite severe.
Jax has been having more frequent morning vomits lately, but the "episode" type of vomits haven't been around too much. I hope they don't continue.

I'm ready to let this day end!

Wednesday, November 10, 2010

How was your day?

Oh, mine you ask?

Brady got into a pen...

Even Jaxon thought it was silly.
And after a scrub down in the bath... yup, it's still there.

Crayon all over the floor... again.

And my favorite part of today. My garbage can down the hill with the bottom ripped apart and the garbage pulled out. Yes, an animal chewed open the hard molded plastic of the garbage can while the top stays firmly locked on. Week-old dirty diapers all over my yard. (sigh...)

Tuesday, November 9, 2010

Coloring fools

The weather has suddenly been mild enough to play in enjoyably, so that's been nice! Jason is out of town again this week, so getting outside with the boys helps to break up the days. Jaxon's vomiting is still around in the morning, but otherwise through the day he's just fine with his food. His diarrhea is kicking his butt (pun intended) consistently though. I spoke to the GI nurse of the doctor through the feeding clinic and she confirmed the GI specialist and a dietitian will see Jax at his next appointment on the 22nd. The doctor definitely wants to discuss a scope and colonoscopy with samples to confirm that the diarrhea is truly "idiopathic" and not anything else. I feel so bad for Jax and the pain he's been having. We'll cross that bridge at the appointment.

We're busy bees with a chiropractor visit, gymnastics, PT evaluation and speech/feeding therapy to round out the week. We'll be at Children's Hospital next week for a NICU development appointment and the following week for the Feeding and GI team, and then it's the beginning of the holidays with Thanksgiving.


I brought out the last of the boy's birthday gifts and they were VERY happy this morning doing projects on these cool lap tables.
Brady holds his crayons perfectly, but Jax still likes the cave man approach.
I pulled these out after finding an entire area of the hard wood floor colored on...

Notice the TWO broken child locks on this cabinet door?
I was trying to eat dinner, while Brady was re-organizing my tupperware.

Sunday, November 7, 2010

Weekend pics

Pictures!

Poor Jax. His bottom was very sore from the chronic diarrhea on Friday and Saturday and he wouldn't sit down all day. Have you ever seen anything sadder?
A soaking baking soda bath and overnight relief on Saturday helped Sunday a lot!

The boys are like kitty cats... they love to sit in boxes.
Baby Macy!

I loved every second of holding her!
Jason forgot how small babies can be

Jax, Layla, Brady and Macy!

Friday, November 5, 2010

Energizer bunnies

Our last few days have been pretty typical. The boys got to pick prizes at the chiropractor's office for their winning pumpkins. Brady chose a pack of crayons and Jax picked some pink play-doh. The boys enjoyed gymnastics on Thursday morning and ran around like Energizer Bunnies! The physical therapist thinks Jax looks sturdier with his ankle braces. She'll be coming to the house next week to do an evaluation for in-home sessions over the winter. I don't want the boys in a group during the main cold/flu months, so we'll take a few months break. Brady was a major show off doing his somersaults in the middle of the singing circle during gymnastics. It was pretty cute. I'm finding that Brady has started to get a bit clingy to me lately when we're around others. Nothing much at all since the boys aren't shy, but I've noticed it a few times lately.

The boys had fun with speech therapy and also playing with the neighbor kids once they were home from school. Now we're looking forward to Daddy coming home!
Jax is doing pretty good healthwise. I've been able to avoid any large vomiting episodes by cutting his morning feed a bit short and giving him the leftovers throughout the day. He's had a few gagging episodes, but all-in-all, it's been rather good and I'm getting his pump rate up a bit more which is nice. I need to train his tummy to work a bit more normal and digest food faster than 9oz over 3 hrs. We're down to 2hrs and 45 mins, so we're working on it!

His diarrhea is consistent each day now. He woke up at 6am screaming, and I knew something was wrong. His poor bottom is raw again even with a pound of Vaseline and extra strength diaper rash cream to protect him. I hate that it doesn't smell, because if it did I could tell when/if he goes while in bed. He has such random stools. There's no particular time of day and sometimes he'll have multiple watery stools and sometimes only one with a normal-ish stool as well. It's all over the place. I just feel bad for his bottom if he goes at night and his skin takes a beating. We should be buying stock in all the diaper cream we go through!

We plan to visit new baby Macy this weekend and we're so excited. The boys get to play with Miss Layla and terrorize the Garber household like only we know how! There will be plenty of pics from this weekend, I'm sure!

Brady giving me his biggest CHEESE face after nap time!

Tuesday, November 2, 2010

Voting and groceries

That pretty much sums up our day! I took the boys to the polls with me and we got our vote on. We went grocery shopping and played at home the rest of the day.
Brady is working on somersaults which is pretty cute. I found out yesterday that Jax won't be seeing his regular GI specialist for awhile (his wife is sick) and only seeing the GI doc through the Feeding Team. I have a call into that nurse to discuss continued care from here out. Jax's vomiting is down right now which is great. He'll have an episode every few days after his morning feed if I don't stop it in time. The diarrhea is certainly continuing, so we'll see what the GI doc thinks of it all.
Otherwise, life is good. Jason will be out of town until Friday now, so pray for me!

The boys playing on the slide together. They set up the pillow at the bottom for each other and then push each other down.
Jax picked up Brady's milk sippy (with a straw) and was DRINKING it!
I'll be working on this a lot this week. Notice Brady cheering on - he was patting Jason's back, he's such a helpful cutie.