Tummy Tales Part 3

The morning of Kaleb's second surgery, my feelings were all over the place.  I was no longer confident that the GJ was going to help.  I was worried we were putting him through another surgery for a tube that was just going to work itself out again.  I was still terribly disappointed that Kaleb was going to have to go back on continuous feeds again.  And on top of all of that, I had a very strong feeling that more was wrong with Kaleb's digestive system than we knew and/or they were looking close enough to find.  In fact, I'd felt that way for a very long time.  For almost 22 months, everyone and I do mean everyone has been telling us Kaleb is a Cardiac kid....Cardiac kids throw up.  The problem with that explanation, is that for the past several months we've been looking around at other Cardiac kids who have STOPPED throwing up and STARTED eating (by mouth) by now. 

The plan for the surgery was a replacement of the GJ tube and a shot of Botox to the pylorus....yes, I did say a shot of Botox.  Apparently, in addition to helping some of us feel better about ourselves, Botox is now used to paralyze body parts that need to relax a little more.  The hope was that if Kaleb's stomach started emptying better following the shot(or not), we would have a better idea of how to proceed with his treatment.  I found it mildly amusing that Kaleb at 21 months old would be the first in our family to enjoy a shot of Botox, and insurance was going to pay for it.  I might have even suggested that they could save the leftovers for me....or I might not have. ;) 

We were in Pre-op waiting for the fun to begin, and the anesthesiologist walked in and introduced himself as Cardiac back-up anesthesia.  I mean absolutely nothing against the poor man, but that was pretty much IT for me.  With Kaleb's Heterotaxy and his history of arrhythmia, this Mama Bear was in no mood for the back-up team on this day or any other day.  I'll be honest.  I was just a few seconds from grabbing Kaleb and heading for the door.  Then the most unbelievable thing happened.  Our surgeon, Dr. Megison, walked right by the room, saw us and came back.  He didn't know Kaleb was having a procedure that day, was concerned that he was still having problems, and wanted to observe to see if there was anything he could do.  I can't say enough good things about the man.  I felt a little better, but still didn't think I could reconcile the back-up anesthesia part.  Then the 2nd most unbelievable thing happened.  Kaleb's Cardiologist, Dr. Nugent, on his way to St. Paul, walked right past the room and stopped to check on us.  He reassured us that Kaleb has been doing very well, that should anything scary happen the right people could get to him quickly, and suddenly I knew it was going to be okay.  Thank you again, God, for sending the right people to us when we most needed them.

They took Kaleb back for the procedure, and everything went smoothly.  When Dr. Barth met with us immediately after, he began by telling us, "I think we really learned something today."  While placing the tube this time, he and Dr. Megison took a close look at the pylorus, and even got a picture of it wide open.  There had been no need for the Botox injection, after all.  However, they discovered Kaleb has had a very unusual GI defect the whole time.  He has extra folds of tissue that completely cover his pylorus, and prevent it from emptying correctly.  In addition, the position of his intestines directly connected to the pylorus makes peristalsis incredibly challenging(or pretty much impossible).  All of a sudden, his incredible gastric emptying problem and intense vomiting made sense!  We finally had proof that more was wrong with his digestive system than just being a Cardiac kid. I can't tell you how many GI specialists have seen Kaleb, and not one of them thought a structural defect would be found. 

You could tell Dr. Barth was very surprised, and unsure of how to proceed.  The unique positioning of his intestines made it very likely that the newly placed GJ tube wouldn't last much longer than the first one, and Kaleb needed general anesthesia to place both of them.  He clearly needed the GJ, but it wasn't realistic to put him under every couple of weeks to replace the tube.

We'd been here before, with a situation that called for a solution where it didn't seem there was one.   The people at Children's Dallas are really good at finding seemingly impossible solutions.  Dr. Barth, thinking out loud, suggested that a much longer GJ tube might be the answer, but he had to find out if it was available in the size necessary for Kaleb.  It was, and Kaleb was back in Interventional Radiology the next morning for his 3rd GJ tube in 2 weeks.  I was understandably terrified, since this was Kaleb's second date in 3 days with the rotating table and no anesthesia/sedation meds, but this time would be different.(slightly) Using the newly placed GJ tube as a guide, the Radiologist was able to place the new tube that was 8 centimeters(3.14961 inches) longer than the original, successfully and in about 15 minutes.  I'm grateful that it was successful and Kaleb didn't need another surgery, but again....no one will ever convince me that it can't be done better than strapping a toddler to a rotating table and jamming a foot long tube the diameter of Rigatoni into his belly, absent anesthesia and sedation meds. 

Back on the Cardiac floor, with his newly placed GJ tube, his tube feeds were restarted, and we were able to start thinking about getting back home.  We were told by the GI team that they have never seen this defect before, and if they document it, they'll give us a copy.  It's strange how I thought I would feel better when we finally had the answers for his GI problems, but I don't.  There really is no magic "fix" for this problem.  His longer GJ tube will help him grow, and that's really important.  But we don't want him to be tube-fed forever.  Dr. Barth says kids with the severity of feeding issue that Kaleb has usually eat by the time they are 8-10....years old.  I'm still in shock about it.  He says we'll be happy years from now that we've been patient.  Well...it's clear he doesn't know me very well because I've never been a very patient person.  ;)

For now, I'm focusing on seeing everything positive about this GJ tube.  So far, I have the following list:
1.  He's been cleared by Dr. Barth to get back in feeding therapy, and I'm optimistic that with our awesome Baylor Our Children's House therapist, Lauren, he will start rockin' the potato soup again soon.
2. He's no longer vomiting formula(he is still vomiting though), so he's growing!!  He's finally hit 22 pounds, and drum roll please....he's ON THE GROWTH CHART! What? What?! Yep, that's our not so little man checking in at 10th percentile. 
3.  There are some amazing tubie moms out there that sew the most amazing covers, backpacks, and clothes that make tube-fed life much easier.  Kaleb has been working on wearing his backpack, and he looks adorable!  It's still a work in progress, because with the formula, bag, and pump, it's several pounds of extra weight.  But I'm so proud of how he's just accepted it as another part of him without complaint.
  
That pretty much covers how Kaleb got his GJ tube, and everything we learned in the process.  We continue to be amazed by the resilience of our sweet baby, and thank you for continuing to love him and pray for our family.

One day, one hour, one minute at a time,
Jenifer

 

So happy he was peacefully sleeping after surgery

 

 

Finally an escape from the room-wagon rides rock!

 

 

Calling me on his remote phone while working his Iphone app-a Mama fave!

 

 

Listening to his heart with his special stethoscope-it is on the right side!

 

Dr. Pepper anyone?  2 days after GJ, he started doing this for the first time.

 

His wonderful Mimi(my mom) sharing a nap

 

ROADTRIP!! The car is filled with something for every possible disaster, tons of toddler entertainment, and beer for mom and dad when we get there. Austin-bound for the next 36 hours. Wish us luck!

Never Give Up

 

 

 

 

  The night before Karl and I got married, he gave me a necklace with 2 hearts that are connected.  I love it, and have worn it almost every day since then.  When Kaleb was born and the time came for his life-saving Cath procedure, it was impossible to watch him be wheeled away from us-so tiny and alone.  The kind nurses of Children's let me tape the necklace to Kaleb's bed, so we felt that part of us was always with him.  It's become a ritual for every procedure he's had since then.  The first Christmas after he was born, Karl gave me a pendant with Kaleb's birthstone...Peridot-green like a frog(could it be any more perfect?!)... to add to the necklace.  This past Christmas, Karl's parents gave me the K...for my 2 boys....and then the necklace felt finished.

 

 

  

 

 

Back in March, when Kaleb's participation in the Baylor feeding program was "suspended", I was terribly disappointed.  I really believed that the program was at least the beginning of Kaleb beginning to eat and enjoy food.  I'll admit I started to worry that it might never happen, and I was just overwhelmed with sadness about it. 

The same week he was dismissed from the feeding program, we left for the Round Top Antique show.  We had planned the trip 6 months before, but now my heart wasn't completely in it.  I did manage to dig up some enthusiasm for my pilgrimage to the Junk Gypsy tent, though.  Anyone who knows me well, knows I am a HUGE fan of the Junk Gypsies.  I was wearing their stuff long before they left College Station, and I'll probably still be wearing it under my flannel muumuus 30 years from now.  But I digress...

In the JG tent, I had just picked out a "My one and only rebel child" onesie for Kaleb, when this necklace caught my eye.  As soon as I read it, I knew it was made for me.  Suddenly, I felt this amazing combination of hope for the future and shame for even temporarily doubting my son's potential.  From the beginning, he's been defying very long odds, and learning to eat will be no different.  A year ago, I prayed  he would be doing half as well as he is now.  He just needs time, but my expectations for him(not of him) are always getting higher.  As his mom, I'm not only there to cheer when he reaches each precious milestone; I'm also there to (lovingly) push him to the next one.  Sometimes, I just need to remind myself to be patient...something I'm not likely to be better about any time soon.  But oh, how I love my sweet, smart, adorable, hilarious, precious, loving, incredible son.

 

 

Tummy Tales Part II

Nobody enjoys having a child spend time in the hospital, but Tuesday was, by far, the worst day of the whole experience. The plan for the day was a "quick" trip to Interventional Radiology for replacement of the GJ tube, restart feedings/tolerate well, and go home by the end of the day. It was a really good plan. Mid-morning they took us down for the procedure, and I was fairly optimistic but worried at the same time. They strapped him to a board just like the one for his Upper GI from days earlier. If you imagine a piece of plywood the width of his body, with 2 metal wheels on the ends for turning similar to a rotisserie oven, you've pretty much got it. Then they pull his arms straight up by his ears, and apply the Velcro straps across his forehead, waist, and legs. Of course, that's when the screaming started, and I absolutely don't blame him. We've seen the recovery from 2 open heart surgeries and several general surgeries, but this is the procedure I can't get out of my head. As you can imagine, I tried everything I could to calm him, but nothing worked.

The idea was to feed a covered wire through the G-button stoma, past the stomach, and into the first (about) 10 centimeters of intestine. When(if) that was accomplished, they would feed the GJ tube along the wire, pull the wire out....and wa-la! The first Radiologist began confidently enough, but right away got stuck in the stomach. Within a few minutes of not being able to get through the pylorus(part that connects the stomach to the small intestine), she became increasingly flustered until she finally gave up, and tried to explain why it wouldn't be possible for anyone else to do it. Luckily, the tech and I convinced her to let another Radiologist give it a try, and it turns out the 2nd guy was actually the best guy they have at Children's. He came in very confidently, arranged slightly different equipment, and encountered the same problem with the same result. After 23 minutes 13 seconds of radiation and a little more than an hour strapped to the board, they let me have him. He was so exhausted from the whole thing, he fell asleep before I could even get him off the board, and continued to sleep for 4 hours. I was so upset, I didn't let anyone touch him for the entire nap.

As with many of the procedures Kaleb has experienced, the intervention was necessary; this one was also unfortunately unsuccessful. The reason I was so upset was because he had to endure this procedure without anesthetic or anything to alleviate anxiety. As parents, we know our children the best. About halfway through the procedure, I asked the radiologist and tech if my nurse could come give Kaleb something and they said NO. "This procedure doesn't usually require anything" they said. Well, I'm just the mother after all(said with extreme facetiousness), but from my vantage point my child was not only terrified, but also very much in pain. I let it continue because I knew the alternative was surgery, but no one will ever convince me that it couldn't have been handled better.

The rest of the afternoon, as Kaleb slept, Cardiology/Radiology/GI teams went to work figuring out what the new plan would be...apparently completely separately, though. Within the first hour, GI came in twice with the new plan-surgery the next morning to replace the tube and receive an injection of botox(yes, you read that right!) to temporarily paralyze the pylorus and hopefully allow better gastric emptying. Shortly after that, my nurse came in to tell me that it had been arranged for Kaleb to receive a stomach spasm medication and Interventional Radiology was going to try again----what?! He ran off to verify, and the Attending Cardiologist came in to tell me that we were getting ready to have a terrible storm, and she wasn't sure how they were going to DISCHARGE us safely that evening...huh? No one had bothered to tell her that our morning procedure failed. Needless to say, everyone started communicating more effectively after that, and I had my only laugh of the day.

All areas deferred to GI, and the surgery was set for Wednesday morning. At this point, Kaleb hadn't had formula in more than 24 hours, had 2 failed IVs throughout the day, and even the IV team said he didn't have any veins left to work with....Tuesday was AWFUL!! All I could do was hold him, tell him how much I loved him, and how sorry I was over and over again. It couldn't have been enough. All day long(when he wasn't passed out), he cried and said, "Mama" hundreds of times. I love hearing him say that so much, but on this day, it felt like someone was ripping my heart out and stomping on it every time.

Thank goodness for daddy! He knew what a tough day Kaleb had, and he called our church to see if someone could visit us that night. We don't say this enough on the blog or Facebook. Prince of Peace Lutheran is AMAZING! They have been praying for our family since before Kaleb was born, visited us countless times at the hospital, and even prayed with us at home when we needed them. Thank you God for leading us there for our church home. This night, Pastor Landon came to see us. He listened to us, loved on Kaleb, and prayed with us until much of the day's awfulness faded away. We particularly enjoyed seeing pictures of and hearing about his new baby girl, Noa.

Karl spent the night since Kaleb was having surgery the next morning, and we ended the evening with a bit of Kaleb's latest obsession---Handy Manny! He loves it! The surgery and everything we learned from it, is a story for the next time. Thanks so much for praying for and loving our family!

One day, one hour, one minute at a time,
Jenifer



Handy Manny time with Da-Da



How can I get this thing in my mouth?



Taken shortly after he clubbed me in the head rolling over-he's a full contact sleeper!



Early morning snuggle time with da-da and Elmo



Tummy Tales Part I

When Kaleb had surgery more than a week ago, we had no idea the twists and turns his recovery would make. The original plan involved a few hours in the recovery room, and then HOME.  Monday's(13th) surgery was successful, but he woke up highly agitated and his blood pressure was between 180-190 for several hours.  That misbehavior earned him a stay on the cardiac floor, and that was fine.  His feedings started, and midway through the next day, so did the throwing up.  Since he now has a GJ tube(feeding tube that empties in the intestine) he was throwing up stomach acid/bile, not milk....major bummer since the hope was no more throwing up.  Since he was "tolerating" his feeds Wednesday, we were discharged-yay!  Looking back, he had a major gagging/throwing up episode about 5 minutes before we left, and we probably should have stayed a while longer.

Wednesday evening, there were a few more vomiting episodes, but everyone agreed it was better than it had been, so we continued to have hope that it would resolve.  Thursday morning, Linz(our day nurse/surrogate Gma) was with us, we were preparing to get to therapy at Baylor Our Children's House, and he started throwing up blood.  From that moment, the rest of the day led to re-admitting him to the Cardiology floor for testing/evaluation.  They suspected he had an obstruction of the pylorus, which was preventing all his stomach contents from passing through the intestine.  It was a pretty scary time, because every resolution involved emergency abdominal surgery.  They did an ultrasound...couldn't find the pylorus....upper GI...finally found out Thursday late afternoon there was no obstruction, but clearly there was a big underlying problem that no one could figure out.

The best anyone could come up with at that time was total bowel rest for 24 hours...turned out to be more like 28, and then we re-started his feedings S-U-P-E-R S-L-O-W-L-Y.  He did pretty well, and by Sunday, they were encouraging us to leave again.  This was particularly exciting because it happened to be my birthday, and who doesn't like taking their baby home from a hospital stay as your big gift?  So discharge Sunday afternoon....Happy Birthday to me....some fairly minor vomiting ongoing, and my wonderful mother stayed with us to help monitor him through the night.

Monday morning, Kaleb was awakened by one of the biggest MILK vomits I've ever seen.  Anyone who has a GJ tube knows this is a major problem, because the tube passes at least 10 centimeters into the small intestine, so there is no milk in the stomach to throw up.  We started calling the GI office, which on Monday morning is a complete disaster.  I must have called 50 times, and couldn't get past the "increased call volume leave a message" recording.  By the time I received a call back from one of the nurses, it was early afternoon, and we were directed to go to Children's for an x-ray.  At this point, we were totally convinced his new tube was out of place, and being fairly new to the GI side of being chronically ill, had no idea what we were supposed to do.  By the time we got to the ER, the Interventional Radiology Department was pretty much done for the day.  Of course, that is the department that replaces the GJ tubes, so they sent in the most irritatingly happy Resident to break the bad news to us....Kaleb would be admitted AGAIN, put on IV fluids, and taken to IR the next morning.  I think they were taken aback when I jumped out of the chair and began suggesting all the things we could do to keep him home with us until the next morning.  I was as close as I've ever been to flipping out, but didn't.  Amazingly, they were so worried about Aspiration Pneumonia after 18 months of projectile vomiting, up to the Cardiology floor we went for the 3rd time in a week.

Since this is fast becoming the longest blog of all time, I'll stop here and finish the 2nd half for later.  The craziest parts are still to come, so stay tuned!  Here are some pictures of our precious man from the first part of the week.

One day, one hour, one minute at a time,
Jenifer

 

Bird watching with PawPaw before surgery

 

 

 

 



Playing cars with Daddy

 

 

 

Hugs before he had to go back

 

 

Nap with his new zebra-lovey

 

He loves his Elmo

 

 

His new obsession-all phones all the time!





A Bump in the Road

Okay, so I think we can all agree I'm a terrible blogger!  I have the best intentions, I promise.  Things happen at least a few times a week, and I say out loud, "I'm going to put that in the blog tonight," and then I don't.  What can I say?  Life gets in the way.  But December 19th being the last post is really really bad!

So much has happened in the world of Kaleb in these months I hardly know where to start.  First of all, cardiac-wise he's doing GREAT.  They have taken him off diuretics entirely, and hopefully by his next appointment with Dr. Nugent, we'll get a 6 month clearance.  Fingers crossed.  We'll see.  His Sats are between 78-82, which is well within his expected range...and further proof that this kid is incredible since he NEVER stops moving. ;)

He's been getting regular Speech(feeding), Physical, and Occupational therapy, and he's made some amazing progress.  If you've been watching us on Facebook, you know Kaleb can WALK.  It's absolutely amazing to watch, and I don't think I'll ever grow tired of it.  When he's 10, I'll probably still be an enormously proud Mama--all right, I promise I won't embarass him like that.  I think at least part of what makes it so amazing is when he takes off walking the long stretches, he pauses and looks at us with the biggest smile on his face, and then keeps going.  He knows how impressive he is!

Unfortunately, he has developed terrible torticollis(terrible inflexibility of the neck muscles that leads to his head tilt to the right) that will require intense stretching and strengthening of those muscles over a relatively long period of time.  We think his modified crawl that we affectionately refer to as his "gorilla baby" move has reinforced this over time.   We've switched to PT services with Baylor Our Children's House in Dallas, and we're excited that he finally starts next week.

Back in March, Kaleb finally got into Baylor Our Children's House day patient feeding program.  We had been waiting for quite some time, and had high hopes that he would leave the program eating at least a couple of day feedings by mouth.  It started out well, and he seemed to be making progress.  Unfortunately, the discovery of the advanced torticollis and his ability to vomit between 5 and 10 times per day(normal if you know Kaleb, but really freaked them out) contributed to them suspending our participation in the program.  I won't lie.  I was devastated.

To make matters seem that much worse, everyone we trust with Kaleb's feeding and GI issues was telling us we needed to convert Kaleb's G-button to a GJ tube.  What this means is that the tube going into Kaleb's stomach to feed him would be changed to a tube that bypasses the stomach and empties in the intestine.  Since the food bypasses the stomach entirely, in theory, he shouldn't throw up anymore.  From what we've learned so far, the only major negative to this change is that Kaleb will have to go back to continuous feeds all the time.

After much research, and many weeks waiting for details to be worked out between our private practice GI and Children's GI team, Kaleb is scheduled to have this procedure and an Endoscope performed on Monday.  I'm trying to be positive about this, but it's really hard.  Our sweet boy has just started walking, and now he has to be connected to his feeding pump for 20 hours a day.  It might sound silly, but this feels like such a huge step backward for him.  How did we get so far away from Kaleb being able to take enough by mouth that we could cut back on his pump feeds?  It makes me sad.

Thank goodness, there's an incredible network of parents of tube-fed kids, and a few moms have created some amazing products to make the lives of our kids easier. Kaleb already has several belly belts and G tube pads, and now he can add a feeding pump "backpack" to his arsenal. It's a really cute sock monkey pattern, and holds his feeding pump with the bag of formula so that he doesn't have to be attached to the pole that usually holds it. We've been having him wear it with the pump inside so that he can adjust his balance for the extra weight.

I remember often, back before his heart surgery, in several of our gazillion talks with Dr. Nugent, he addressed the difficulty of feeding issues and cardiac kids.  I remember clearly when he told us that we would spend more time overcoming Kaleb's feeding problems than we ever spent on the cardiac issues.  Well....of course, I thought that was ridiculous!  I truly believed that after his heart was mostly corrected and we could really focus on feeding, Kaleb would be eating by his 2nd birthday.  But as with just about everything else so far, Dr. Nugent is probably going to be right.  Everyone's best estimate of how long Kaleb might need his tube in the GJ position is 1-2 years.  When the dietician at Baylor first said it, I started crying.  Dr. Barth, the GI doing Kaleb's surgery on Monday said that he sees kids with Kaleb's severity of feeding problems(as in total lack of oral intake) eating pretty well by 8 years old.  I was so stunned that time there were no tears.

I've spent so many hours thinking about whether this is the right path for Kaleb, and imagining that having to wear the backpack will hold him back, I've lost sight of the fact that I am not in control here.  As hard as it is, I never have been. Kaleb is a precious gift from God, and this is all part of His plan.  It wasn't so long ago that I was praying for Kaleb to have a chance at life, recovery from life-threatening complications, and to be able to enjoy life at home like so many other babies.  We've been incredibly blessed to celebrate his first 20 months of milestones, and each one is better than the last.  Where is my faith that eating is part of the plan? 

Watching him play wearing his backpack-try to walk and fall down, but get right up is such a major lesson for me.  I have to try harder not to project my fears onto this little guy who is so happy, loving every bit of life he can squeeze out, and absolutely fearless.  Today is Mother's Day, and like every other day, I thank God for this funny, smart, adorable, loving, miracle that holds my heart.  Please pray that Monday's surgery goes smoothly, and that Kaleb is stable enough to go home that day.  Please also pray that the adjustment to his feeding tube will finally stop the vomiting, so that he can feel better, start growing, and maybe even start to eat.  Thank you so much for praying for and loving our family. 

One day, one hour, one minute at a time,
Jenifer

 

Christmas with cousins Samantha and Jacob

 

 

Christmas with cousins Noah and Avery

 

First hair cut-way harder on Mama!

 

 

Playing between therapies at Baylor OCH Dallas

 

Are you...talkin' to me?

 

I make this look GOOD!

 

Get up early. Sow the fields. Feed the hogs. Wait...

 

1st zoo adventure-where's Elmo?

2nd hair cut-where's my baby?!





Christmas here we come!

I can't believe it's almost Christmas!  We've been so busy in the Prinz house, it's just come up so quickly.  This is my absolute FAVORITE time of the year, and since we were in and out of the hospital and quarantined last year, I've been out of control this year.  By out of control, I mean with wanting to have every possible Christmas experience with Kaleb, of  course!  We've acquired most of the baby Christmas pajamas available, driven to see Christmas lights, put up the most beautiful "soft ornament only" Christmas tree, attended the Richardson opening of Santa's Village, had pictures with Santa taken TWICE(and had to be stopped on the 3rd attempt), and Santa is going to be really really good to Kaleb this year!  We're just so happy he's home and doing so well this Christmas.  What more could we ask for really?

Kaleb is still in all 3 therapies 2 times a week, and he's progressing well!  We go to Baylor Our Children's House for Speech/Feeding therapy, but PT and OT come to our house through Therapy 2000.  He's scooting all over the place, can stand on his own while holding onto something, and has just started to make animal sounds.  His MOO is absolutely adorable!  The most recent great news is that he's really starting to take bites during feeding therapy.  It's amazing how proud I feel to watch his little head move towards the spoon...which he's never done before now!  He's working really hard in each therapy, and making progress every day!

Cardiac-wise, Kaleb is doing great!  He had a Cath in early November to make sure everything looked good from the surgery and no issues had developed, and he looked wonderful!  Dr. Nugent was pleased and relieved that we checked, and now he's letting us go for a while.  Woo hoo!  We now go to Cardiac Clinic once a month for a check up and he takes a Synagis(RSV) shot once a month, too.  Very soon, Kaleb will go to every 3-months check up, then every 6...it's awesome!  Of course, there's still one more open-heart surgery in his future, but we're told it's a couple of years away.  That's fine by me!!

Right now, we're preparing for our first big trip with Kaleb!  We're spending Christmas with Karl's family in Houston, and I'm starting to freak out a little bit.  I made a list of everything we need a couple of weeks ago, and have been planning in my head forever, but it's now time to get ready to go....AAAh!  It didn't take us long to figure out that our cars are too small to take our small army of supplies, and thankfully my parents are letting us use their SUV.  Between Kaleb's medical supplies, my pumping supplies, and Christmas gifts, there's not going to be much room in the car for us!  But we really are looking forward to being there.  Kaleb has never met his cousins, Jacob and Samantha or his Uncle John, and he's only spent a couple of hours with his Aunt Jenna, so we're really looking forward to being with them on the holiday.  I'll have to let you all know how it goes when we get back.  Wish us luck!

Have a wonderful Christmas and a Happy New Year everybody! 
One day, one hour, one minute at a time,
Jenifer



Children's Medical Center Holiday Parade

 

 



20 minutes into the parade--he was out!

 

 



Richardson Santa's Village Rudolph's house

 

Another cute pic from Santa's Village

 

 

1st pic with Santa!

 

 

 



 

A favorite from November!  Love him in a pumpkin!

 

1 year pictures--more like 14 months!

 

Super Kaleb and his "super" family for Halloween

 

 

Our little "Fly Boy" w/flipper slippers