Thursday, July 29, 2010

Chocolate milk is good

We've had a pretty normal week, other than Jason gone for work for a few days. I can tell the boys miss him because they kept saying "dada" when Mr. Nick was here for speech today. Mr. Nick asked if Jason was gone and when I said he was, he laughed and said that it's typical behavior of toddlers repeat the name like that.
I took the boys to visit Teeta (Krista) yesterday and we realized that Jax LOVES her piano. He sat at it and played on the keys for about 30 minutes! Brady was not interested at all, but he did enjoy pulling her rolling cooler around the entire house.
Today Jax tried chocolate milk and did pretty good with it. I gave the leftovers to Brady and a lightbulb went off over his head for a love of chocolate. Shocking...
We'll be getting some smoothies this weekend to try and work on Jax's liquid textures. He's doing well with getting his pump rate up, so that's good news!

Monday, July 26, 2010

Fun and busy weekend!

The boys have had a great summer these past weeks. They were able to go up to Green Bay to see some of my family at a wedding reception at the New Zoo. And now this past weekend we went to Jay's hometown for his yearly softball tournament. The boys got to go to Layla's 2nd birthday party and see their cousins as well. It's so great to see them run around and be with other kids.
Brady has  been running around like a crazy cat and his "toddle" days of walking as a toddler are just about gone... he's turning into a little boy quickly. Jax is walking more and more every day and he's babbling up a storm now. His vomiting seems to have disappeared again and it took almost exactly 3 months. He's been doing fantastic and even tolerating a pump rate increase along with calories. It's so great! I'll be bringing him into the GI doctor on Monday for a follow up and to talk about his diarrhea. His stool tests came back normal (of course!) so we'll see what they say. Jax will be seeing the psychologist for a feeding practice immediately following the GI doctor. I'm excited to tell her that Jax is doing well medically with his "homework" of eating faster and tolerating it.

Jax practicing with milk and a straw. He takes a few sips.
Brady with Great Grandpa K
Jason with the boys at the Manitowoc zoo. 
Jason looks like a Ken doll standing there with his arms like that!
The boys were obsessed with the toy cars and Scott's garage at Layla's birthday party!
Boys will be boys...
Auntie Sidney and Jax looking through the goodie bag!
Layla with Mom and Dad during cake time!
Nana Letts getting Jax to jog
The kids all played outside Sunday morning and had a blast!
We moved them to the backyard since the little ones like to run down the driveway!

Jax was doing pretty good in the grass. This grass seemed a bit softer than ours :)
Getting all 4 kids to look is near impossible!
Jax loved petting Aidan's hair, just like what he does to Jason's hair!

Thursday, July 22, 2010

Wild animals

Yes, the boys act as if they are wild animals and climb and fall off everything! We also have another kind of animal in the house - MICE. Gah! I've seen two different mice in our living room (coming from the fire place I think) and I've made quite the scene on both occasions! Jason has been out of town this week, so my manly mouse killer has not been here to save me! We have an exterminator coming tomorrow before we're on our way out of town. We'll be in Jason's home town for his softball tournament, so hopefully while we're gone, our pests will be moving out as well. (::shutter::)
If you can imagine me standing on the coffee table screaming to Jason on the phone as a mouse is crawling up our curtains... yup, that was me. I pushed the cat at the second mouse I saw, and he played with it. Thanks Yanni.
We'll be cleaning and disinfecting when we get home!
In kid news, we've been working on Jax's stoma site, and it is getting better with the silver nitrate sticks thankfully, and his vomiting is definitely receding. You know I hate to report specifics because it always backfires after I finish the post, but Jax hasn't vomited since Saturday morning now, so it's nice to see this starting to come to an end again. Now if we could figure out the diarrhea, we'd be set!
Brady has decided that he loves to color and draw on everything. This includes chairs, tables, desks, the floor... yeah, he needs monitoring to say the least!

Monday, July 19, 2010

Feeding clinic evaluation

Today was Jaxon's feeding clinic evaluation at Children's Hospital and it went pretty much as I expected. We met with a room of about 6 people who were reviewing his medical records and history while an occupational therapist was doing activities with Jax to give him a score (he scored 15 and 18 months in two areas - I don't remember what they were, but they grade him as a 22 month old ex-preemie). There was a nurse, psychologist, OT, dietician, speech therapist and a student in this part of the meeting.
They left the room and watched me feed Jax through a double sided mirror. It's such a weird feeling to be alone in a room and yet know there's people watching you and taking notes about everything you do. Jax was his typical self with throwing the cup and spoon and screaming to get down after a few bites. After we finished up the meeting with the large group we met with the feeding team's GI specialist after he did a quick conference with the group we had just met with. I was anxious to have a fresh perspective on Jax.

The GI specialist was very attentive and I could tell he actually read Jax's history prior to the meeting. He told me right away that he was clearing Jax for oral feeding, he didn't see any reason why he medically couldn't eat with the vomiting coming down. He told me he had two theories about Jax and what was "wrong" with him. He said that both theories have the same origin, which is Jax being the "donor twin" while in utero and got less blood flow due to Twin-to-Twin transfusion which happens to identical twins sharing a placenta and also the mono/mono condition with Jax having a knotted cord. He said that the donor twin almost always has a medical problem ranging from mild to severe if they make it to birth. 

He feels that Jax either had nerve damage to his GI tract thus causing a motility condition or Jax's GI system is/was so immature he's struggled with reflux and a touch of a motility issue which will get better as he gets older and stronger. He mentioned the frustration we must have to have such a sick child and yet all "normal results" on tests other than the motility study. He agreed with me that the motility study can be misleading since it measures nerve activity and Jax was sick through the test - he does not want Jax to have further motility testing unless symptoms were to show up. He agrees that he may have a high functioning form of a mitochondrial disease, but unless further symptoms present, we may just never know.
Basically, we may never fully get an answer as to what has all been wrong with Jax. He said that a GI virus or a flu can easily set him back months and hospitalize him, so we need to continue what we've been doing. I hate the little reminder always thrown in to never take sudden chronic vomiting lightly and always seek medical attention since it can turn deadly so quickly for little ones. Ugh, could've done without that public service announcement.

He should get better with time, and we're obviously hoping he will. The doctor does want to find a reason for the diarrhea. Jax's X-Ray from Friday was fine, he is not constipated, and we were able to get a sample right there in the office with the doctor to test for bacteria. So we'll see what happens with those results.

The doctor basically told me that we need to start completely fresh with Jax for feeding. He has such a negative response to eating, that we're starting over slow with just water and build from there. The doctor gave me the example that learning spanish and english as a toddler is relatively easy compared to learning a new language as an adult. It can be done, but it's a lot harder. Like teaching a toddler how and why they should eat by mouth. It can be done, but it's hard. It will be done.
The plan is for Jax to see the pediatric psychologist again in two weeks and she'll go through a feeding session with us and give us tools. From there we'll make a plan. Jax needs to work on getting his pump rate back up (we've dropped from 135 down to 85 since this last virus) so he gets his food in a shorter time period. Since it takes him 3 hrs to get 9 ounces of food, he's not off the pump long enough to even be hungry for feeding practice before his next round of formula through the pump again. We're also increasing his 27 calorie formula to 30 calorie to help the weight gain.

So I have a feeling they need to see a big improvement with that before we get too much intervention from them. So that's our plan. Work on getting him to accept food from the pump faster, go to the psychologist every 2 weeks and see what they think then. We have a follow up in early September with the whole team and I'd love to see a more aggressive approach on their part at that time if we get our homework done on this end. Time will tell... as usual...

Nana Jayne with the boys at Angela's wedding reception on Saturday.
Grandparents with Jason and the boys before a walk 
around the zoo grounds at the wedding reception.
Jason watching the boys literally LOUNGING in the kiddie pool!
Jax getting better at throwing Daddy the football.
Jax loves the kiddie pool way more than the lake!
Brady doesn't move much, but was very serious about playing with the dump truck in the water.
The boys do NOT like the sprinkler head turned on!

Friday, July 16, 2010

2 yr physicals

We had an interesting check up at the pediatricians office today. 

Height - 32 1/2"
Weight - 22lbs 14oz
Head - 49cm
(Weight and height are under 5%, but his growth curve looks great)

Height - 31 3/4"
Weight - 21lbs 10oz
Head - 47.5cm
(Weight and height are well under 5% and not a good curve)

*They're such bobble heads :)

Jax's lack of weight gain for the past 9 months is a bit concerning. The doctor showed me his growth curve and I was in tears over it. I had a moment a feeling defeated by everything. We spend so much time and effort in getting food into this little boy, that seeing him just NOT gain anything in so long, and see his chubby arms and legs turn into thin sticks is hard. The doctor's concern was that Jax is going to see a new team of doctors on Monday for his Feeding Clinic review and she wanted to make sure she contacted them today in advance to have a conversation. She was nervous that they'd see Jax's growth curve and hospitalize him for failure to thrive and not finish the feeding evaluation.
We talked about his chronic diarrhea he's had for months now since this virus hit him, and we want to be proactive about a few tests right away. We took Jax into the hospital this evening to get an X-Ray of his abdomen to check for looped bowels since sometimes diarrhea is really just constipation (water flows over the solid waste). The pediatrician called me back once we were home and she said she found out who the new GI doctor will be and talked to him all about Jax so he understands his history. They've decided to have his stool checked for bacteria (which can happen easily with g-tubes) and for absorption issues of carbs and fat etc. So I need to contact the lab at the hospital and get exact instructions for each test. Hopefully we can get this all in before the feeding clinic evaluation to get any possible answers. We've done all this before without many answers, what's one more check, right?
I mean... Jax WAS diagnosed with CIPO, which would mean he can't absorb nutrients very well and has motility issues (constipation, bacterial overgrowth), but I'd love so much to think we're beyond that. Yes, maybe I'm dreaming, but let me.

The pediatritian also asked the GI doc to have a social worker at the appointment to possibly help me get more PT sessions for Jax. She also noticed his tonsils were a little bit large, but nothing too concerning. She didn't feel that it was a reason for any feeding issues, but wanted to watch it, and have me watch for snoring or open mouth breathing. I'll bring it up to the GI on Monday.

Brady's check up went great. He was hugging every nurse and doctor, and even the parents in the waiting room. That kid has some CHARM. The doctor is very happy with his weight gain and said he's a perfectly proportioned tiny guy. Which interestingly enough, she said Jax isn't THAT far off from him, they just don't like seeing zero weight gain over such a long period (or even loss). They don't want to see Jax gain tons of weight, but they want to make sure something bigger isn't wrong here.
Brady is allowed to be off whole milk, and he can have crushed chewable vitamins now (we were giving liquid vitamins in his milk). 

I've been given the number for a few pediatric optometrists to get the boy's eyes checked out. I was wondering if it could be a factor for their speech delay if they can't see completely clear. It's a stretch, but it would be nice to check it off the list as an issue. Jason and I both have really bad eyes, and I had glasses very young, so we'll get them checked out.

In development news, Jax took a few sips from a straw during his feeding therapy yesterday! It was the first "latch" I've seen from him since 3 months old. And Brady has officially been done with using a pacifier in his crib for over 3 weeks now. I didn't want to mention it until it was totally done. He was biting the ends off, so we left the bitten off pacis in his crib. This way they were there with him, but he couldn't use them to soothe himself to sleep. Eventually he grew tired of the useless things and I let him have a small car in bed with him. He falls asleep playing with the car. He found an old paci in the diaper bag during the appointment today and threw it on the floor. Yup, he's done with them. 
My boys are growing up!

*Do you guys like our new 2 yr old looking blog? I would love so much to update our "About us" area, but the last time I wrote up something new, Jax had this nasty step backwards the week I was about to change out the write ups. I wrote about how we had our miracle and all the amazing dreams we had ahead of us... I of course was mad at myself for being too quick to state such bold things. So I dare not temp fate and just leave it for awhile. I like to think the new design gives a fresh positive vibe. A much needed face lift!

Wednesday, July 14, 2010

Happy 2nd Birthday!

Happy birthday to my little miracles! These little guys have touched so many people in these last two years and have taught Jason and I more than we ever thought we'd learn. I never thought I'd lean so hard on hope, but I have and continue to do so.
So with the passing of this last year, the boys have continued to develop more of their personalities. Brady is kind, helpful, loving, outgoing and of course sassy. He wants to please you and be loved. Jaxon is curious, loving, strong-willed, charismatic and of course stubborn. He is the smallest fighter most of us will ever know.
I've been looking back at the boy's photos and videos this past week, and am amazed at all the changes that have taken place. As a parent of preemies, one of my biggest life lessons have been to look back a few months, rather than weeks when reviewing changes in development or health. Now I can say "years" and feel so proud. We may have some tough challenges still ahead, but we enter into them with strength and so much pride. I've learned that things don't always turn out the way you thought they would, or the way you hoped they would, but you can't plan everything. Yes, even I've accepted that - the planner of all things possible. I'd like to think that even through our story, we still find ourselves to feel beyond lucky. These little men are our loves...

All my love, hope and respect goes out to any and all parents who have battled through prematurity, developmental delays, medical problems and/or chronic illness. I would never wish the heartache on any soul. My warrior parent badge goes out to you and all your friends and family members who have supported you through your battles. I know that our loved ones have taken on some of our heartache and it's felt by many. I would like to thank all of our family and friends who have championed and supported us through this journey. We love you and can't thank you enough.

These pictures are from night the boys were born. Two years ago almost to this minute. Jason took these shots with his phone to show me while I was upstairs in recovery. I'm not sure if I've ever shown a picture of Jaxon while intubated for the first 24 hrs. I didn't see the boys until they were 9 hours old the next day - so tomorrow is a special day for me in my own way.
The boys were about the size of a beanie baby.
1 yr old!
Jax was still having a hard time holding his head straight.
The boys today. Both walking and talking in their own language!
Jax's muscles.
Birthday fun at Monkey Joes. The boys had a blast!

I think this is the first of MANY video games they'll be playing together!
Birthday dinner, mmmm!

Monday, July 12, 2010

2nd Birthday Party

The boys had a great birthday party on Saturday. It was hot and sunny, and our central air went out of course! Everyone at the party was a trooper about it and we had a great time. We're so lucky and fortunate to have both of our boys running around with smiles on their face at this party. I can't believe we're going to be parents of TWO year olds officially this Wednesday! 

In kid-news, Jax has been doing well with his episodes. He went from Tuesday afternoon until Saturday morning, and neither were "bad". I mean, none are good, but there's a definite difference between a simple vomit and one that causes him to not breath and convulse. So we're continuing to only give him his probiotics w/serotonin once a day  and the Domperidone before each feeding.
I had a long, yet productive meeting with Jax's surgeon on Friday afternoon. We're trying to "burn" off Jax's prolapse (stomach lining tissue) that is sticking out of his stoma site with silver nitrate sticks. The surgeon says it worked well for another patient of his, so we're trying this to see how it works. The doctor showed me how to do it and Jax wasn't in any pain at all. The only trick is he gets really upset being held down, so when we do these treatments at home (every 2-3 days) I'll rub vaseline around the tube site (with the tube taken out) so when we put the silver nitrate (they look like match sticks) on the tissue, it doesn't touch his belly skin. It looks just awful and turns black immediately and then it bleeds for 24 hrs. I can't  imagine how Jay will be able to stomach seeing this when we do a treatment tonight! While the surgeon was showing me how to do it, all I could think of was how Jason would feel queasy seeing this! So we'll see... but so far, the first treatment has already helped!

The boys had their 2 yr old pictures taken on Sunday, and they turned out "ok", but I'm not sure if we'll order any or try taking them over. We're hoping to take them to a fun dinner for their birthday on Wednesday and they have their 2 yr physical with the pediatrician on Friday.
Here's some pictures from Saturday:

Monkey cupcake tower that I made.
Cookie favor bags.
Sorry for the blurry photo!
The food!

Birthday boys!
Special birthday shirts!
Getting their cupcakes
Jaxon with little Miss Layla.
Jaxon with Mommy.
Brady with Auntie Rachel.
Brady with Teeta (Krista). 
I think B was grazing food off a lot of people!
The boys loving their new slide from some Aunties.
Jax with his cupcake.
Big B loving some cupcake!
Layla loving some cupcake too!
The kids playing with the toddler-Pinata. 
You just pull the ribbons until the special one opens the monkey head!
Jax was the lucky one!
I just realized I didn't get any shots of the party outside. Maybe some friends or family did, so I'll add pictures through the week of other shots I can get my hands on!