The Bald and the Beautiful

We started January out with a bang. New Years Day was spent at none other than Primary Children's Hospital. Our home away from home! Jackson's picc line got a crack in it and that means nothing can be infused. The radiologists were nice enough to squeeze us in on a holiday/Sunday. We knew we would meet our deductible quickly, but never imagined this quickly!

He has to be heavily sedated for the procedure and he use to wake up very mad and feisty. But now he wakes up pretty mellow and in la la land. He was so content to play with his blood pressure cuff and other hospital toys. We were only there for about 5 hours. It's so much nicer to be an outpatient at PCMC rather than an inpatient.

The radiologists(ones who place the picc lines) know us by name, as we see them so often. The one guy was joking that they should have a punch card where you buy 10 piccs get a free trip to disneyland. If only....Jackson has been through about 7 or 8 piccs but luckily we have not been admitted to the hospital since Halloween. That is a record for us. It feels so good to say that his days out of the hospital are greater than his days in!

This is what 2011 looked like in regards to medical bills and/or insurance statements. I naively got this little file folder thinking we could keep everything filed nicely inside.
We know 2012's stack of forms will be even bigger but we are so grateful to have such wonderful insurance. Once we meet our out of pocket maximum everything is covered 100%. And while the out of pocket max can seem steep, we know it could be much higher. We estimate Jax's bills to be about $700,000 by now. Lots of people say they would never trade their kids for a million bucks. And I really wouldn't....I'd be losing money!!

January brought a change of diet for Jax. For the past 8 (almost 9 months) I have been pumping 5-8 times a day to give Jackson "the best of the best." For awhile he wasn't tolerating any formulas or additives they tried to mix with the breastmilk. I feared I would be stuck pumping for the rest of my life. Luckily we decided to try the formula above. This was our last option(or so we thought). Neocate has NO allergens in it (milk, soy etc...), is hypoallergenic and has all the proteins already broken down. Your body doesn't have to break anything down, it's done for you. We started the Neocate by mixing it with breastmilk with the plan to increase formula and decrease breastmilk. This formula has the worst taste/smell in the world. All formula smells bad but this was far beyond that. Jackson hated the stuff. You've heard the line "A baby will never let themselves starve to death....." I'm here to tell you that is a lie. If they are forced to drink Neocate, they would rather starve than drink it.

I battled Jackson with this formula for 2 weeks. It consisted on him drinking about half the ounces he is suppose to. I would give him an 8 ounce bottle and it would take him about 3 hours to drink 5 of the ounces. By that time it was almost time for another bottle. The dietitian suggested mixing a tiny pinch of sugarless Kool-aid into the milk. That did not appeal to him either.

Long story short we found out that he can tolerate AND likes regular soy formula! So we've switched him to that full time and he loves it. And insurance is probably glad we've switched as well. The Neocate formula costs about $900/month!! You would think with something that expensive they could make it taste a little better.

Jackson is so close to sitting up on his own. This dragon ball popper is going to be his main motivation to mastering it. He giggles and squeals when its on.

Here is an action shot of Jackson in pure excitement mode. When he gets excited about something his whole body tenses up and he shakes. It is the cutest thing.

Jax is now rolling stomach to back and back to stomach. He's slowly figuring out that he can get to different places and things by rolling around. Carter is a little wary of his new tricks because it means his things are no longer "safe."

Jax and his binky.... The love of his binkie may be the death of me. Jackson doesn't suck on a binkie. Jackson plays with a binkie in his mouth. He can't keep it in by himself. He won't suck hard enough on it to keep it in by himself but yet he almost can't function without it. This "problem" has resulted in me being very creative with the placement of his blankets to try and keep a little pressure on the binkie. Luckily he has become able to hold his own binkie and so it's no longer a problem. I go in a see him just like this every sleep. Holding his own binkie. FINALLY

Mr. Jax really loves to eat. You really can't eat in front of the boy without offering him something. I think his absolute favorite foods are avocados and meatballs. I really haven't fed him anything that he hasn't liked(which may not be saying much since he has a somewhat limited diet.)

At 8 1/2 months Jackson is weighing in at 17 1/2 pounds. In another pound he will have tripled his birth weight. He even moved up from the 3rd% to the 10%.

He is doing so well. We continue to decrease his TPN and he continues to gain weight which makes the end of TPN a closer goal. He is such a sweet, happy baby. He has a cute little personality that makes us forget all the work we've been through!

At 8 months:

This is all the hair that Jackson has. He has not lost any since birth but it has hardly grown. His hair is very light. It will most likely have some red in it but it's hard to tell with such little amounts.

He still has 0 teeth. And none that are in sight of popping through. Bald and toothless and darling. Carter had teeth by 5 months so Jackson is not following suite.

Now onto a totally random part of this post:

I get asked a lot if Jackson having no hair and no teeth are part of his condition. Part of me wants to say "Is this really the first bald and toothless baby you've ever seen!?" So the answer is NO. Totally unrelated. And to answer another question I've been asked several times (mostly by the same person) "No, Jackson will not be 'slow' because of his condition." Do your intestines play a part in your reading or math skills? Didn't think so.

And please, just because your dad's brother is a doctor of any kind and you tell him you've met a short gut patient, please don't come and tell me how awful and horrible it is to be a short gut patient. And what a poor quality of life he will have. Believe you me, we know exactly what we're dealing with and we know this is no walk in the park. And most likely, your dad's brother doesn't really know a single thing about short gut. All he knows is what he's read about in a textbook his first year of Medical school. Short gut is not a good thing to have. But I promise there are worse diseases/conditions out there. And medical advances have come a long way and Jackson is expected to live a long and healthy life.

Feels good to have that off my chest. And don't worry, all of the random people who have asked/told me these bizarre things don't read this blog so I don't have to worry about offending anyone.

Cautious Carter

January has brought a lot of firsts for my Cautious little boy. He is not a fan of taking risks(he gets that from his mother) and so he's very hesitant to try new things. Since we missed summer swim lessons I decided to sign him for winter lessons.

Carter LOVES swimming. Carter loves swimming on HIS terms. He doesn't like to get his face wet or water in his eyes or ears. He has no desire to swim alone.

Enter swimming lessons....

The first thing they moved was the back float. We have been unable to get Carter to float on his back or even lay down in the bathtub. The first day his poor little eyes were wide with terror and he was clinging to his teacher, hanging on for dear life. Now he can float on his back (although it still freaks him out a bit). He actually doesn't mind floating on his back until the day came where the teacher let go of him and wanted him to float alone. But he has made such great progress in that area.

He will now swim with his face underwater where before he kept his head above and tried to doggy paddle. He actually likes to do bobs in the water now.

He does reach his limit at swimming lessons though. I feel bad for him and part of me wants to scoop him up and never make him do something that scares him ever again. But then the rational part of me knows its good for him. Very good for him.

And no matter how "traumatized" he is after each lesson he keeps begging for more. So I know he's not too traumatized! He takes lessons on Tuesday and Thursdays and each day he will ask "When will it be swimming lesson day!" He just finished his 4 week session and we signed him up for the next session as well. Needless to say, he did not pass this level! But I'm so proud of him for facing some of his biggest fears and going back day after day to practice.

To make sure none of his skills are forgotten, Carter will proudly show me all of his moves in the bathtub now. The front float, with face fully submerged.

And the back float. He's actually fine floating on his back in the bathtub since he knows he can't sink!

The 2nd risk of the month:

Learning to ski. He has now been to Beaver Mtn. 3 weeks in a row.

The first day he got fitted for a new helmet, skis and boots. The man at the shop, who was very nice, was initially helping him. Carter got a little overwhelmed so we stepped in and took over the fittings.

Then out to the slopes where we learned that Carter is NOT a natural skier! But bless his heart, he did try.

He started getting the hang of it after a few trips down the mountain. He even started asking us to let go of him so he could go by himself. He hasn't quite figured out the whole balance thing yet but is making good progress.

Neil was so patient with him.

There were a few of the expected meltdowns but nothing major.

Carter's favorite part of the experience was the magic carpet. That was his motivation for skiing down the hill; to be able to ride back up again. He viewed it almost as an amusement park ride.

After a long morning of skiing we unwinded in the lodge with some snacks and a juice from the snack bar. Which is now a must have apparently.

I'm so proud of my little boy for being so brave and trying all these things that really stretch his comfort level. I keep reminding him that he was scared to death of walking for the longest time and scared of riding his bike and now he's a pro!

And now for some sweet pictures of my brave boy.

Tuckered out after a long day. Snuggling with Monkey. Monkey makes everything better really.

Carter is quite a copycat sometimes. One morning after laying down on ice packs for a bit to ice a sore back Carter decided that his back was quite sore and had to have him own time on the ice packs. This required Monkey and Mickey and his blanket!

2011 Recap

11 Things I've learned from 2011..........

11. There are a lot of kind and caring people in this world.

10. Having 2 kids is more than double the work of 1 kid. Especially a baby with medical issues.

9. The food at Primary Children's is quite good. Is it bad that I enjoy their food so much?! (Including their frozen yogurt machine and their crack cookies.)

8. Our 2 families are wonderful, wonderful people. I don't think we could have made it through this year without their love and support. Dropping everything to help us even when it wasn't convenient.

7. Being a mom is the most wonderful thing in the world. Also the most physically and emotionally exhausting job in the world. I wouldn't trade my boys for a million dollars. (but maybe for a billion dollars I would consider.....jk)

6. Neil is my calming source. He manages to keep his mind when mine is all but shot.....and then helps me regain mine.

5. The best time spent is with family. Whether in a tiny hospital room or in our own home, it is priceless.

4. Obama was right about one thing......there should be NO maximum on how much your insurance pays for one person.

3. You can never pray too much. And you never tire of others praying for you.

2. There is always someone who has it worse than you. You would probably never trade your trials for someone elses.

1. The Lord's idea and my idea of what trials I can handle are very different. But I trust him and his plan so I will continue to carry on. He will not place a huge trial in your life and then leave you alone. He will carry you and strengthen you when you think you cannot possibly handle one more day.

Pre Christmas, Christmas, and Post Christmas

The rest of December flew by. I wanted to do lots of posts throughout the month but that didn't happen.

This guy is now 7 months old and weighing in at 16 pounds. The weight has really started to pile on and we're so happy. He'll probably never been rolly or fat but we are loving a little extra "Jax" to hold on to.

We invited the cousins and Grandma and Grandpa over for a Gingerbread making house night. It didn't go as smoothly as I hoped. It is hard to make graham crackers stay upright with just frosting.
Carter didn't mind, he happily shoved candy into his mouth as fast as he could.
Everyone got in on the action and some decent looking houses finally were created! Everyone had eaten so much candy that the finished projects weren't that exciting!

Christmas Eve came. We ate dinner with all of Neil's family. And I left my camera in the car. We opened some presents up there and Carter walked away with so many great presents I considered calling it good for the rest of the year....

One is his presents, a McQueen race track controlled by remote. It took my dad reading the instructions and Neil running the screwdriver to put the thing up.

We were lucky to spend Christmas Eve with Neil's family as well as part of mine. My parents and younger bro and sis came to spend the holiday with us. We celebrated with a delicious London Broil, grilled to perfection. I marinade a mean Broil and Neil grills it like nobody's business.

Once again, I failed to take many pictures. Carter was a grouch that day, thanks to a late nap so he wasn't in the mood for pictures or much of anything. As we read the Christmas story from the Bible he cried and yelled "I don't want to read the scriptures." Ahh memories.

I ended up making the sugar cookies without him. Vegan sugar cookies to be exact. My first attempt and they turned out really well. Carter loved them and so did Santa and his reindeer.

Our only family picture over the holiday. Christmas Eve with the boys in their Christmas Jammies all ready for bed.

The only thing Carter was really in the mood for that night was opening one gift. I let him open his present from Jackson. A Lightning McQueen toothbrush holder and matching cup. It was a hit.

Christmas morning came early, Carter was up shortly before 7. Even Jackson woke up a bit early and joined us for the festivities. Santa brought Jackson a barnyard that makes sounds and plays music. He approved.

And some bibs, toys, and plastic spoons. How did Santa know exactly what he needed?!? My parents got him a little dragon that plays music and pops balls up into the air. He was fascinated by it and would watch it while shaking with pure excitement.

Santa fulfilled Carter's dreams and desires by bringing him the carwash that he has been eyeing for months. And much to my dismay, it has a place for real water! There were wet spots in the carpet all day!
He got a great Mater alarm clock and his other favorite was an ambulance that makes real noises and the doors open in the back. He takes his monkey and cat for rides in the hospital each day. Apparently these stuffed animals also need picc lines and TPN. I cannot afford any more expense in regards to hospital bills!

Me and Jax. Luckily I got a new robe to replace the dinosaur I am sporting in this picture. Did you know that I am obsessed with robes and wear mine for hours a day?

Neil has wicked bed-head. And Jax hardly has any hair. Jax was very content and satisfied to watch us open our presents and play with wrapping paper.

My 2 boys. Together on Christmas. The best present I received that day. I was so glad Jax was home with us that I managed to overlook that Carter threw yet another fit when I asked to take his picture.

Grandma Alma(that is what carter calls her) feeding Jax a mist the chaos of opening presents. Carter was in charge of taking each person their presents and would usually even open it for them before the present got to them!

Grandma and Grandpa E even stopped by to see what Santa had left us.

Another McQueen present. This car is for an app on the Ipad that Carter loves. Santa brought this. Santa is just feeding into the addiction that is the Ipad.
Jackson is close to sitting up on his own but needs a little support. He loved sitting here playing with his new toy.

My favorite present for Jackson. This cute monkey hat. Isn't it darling? And NO I didn't not crochet it. I can barely sew on a button. I paid someone a handsome penny to crochet it for me. But seeing his fat face in it is worth the money!

After Christmas we went to Idaho to spend time with my entire family. Again, I rarely broke out my camera. (that is my new years resolution, more pics!)

I had a handful of willing people who wanted to play, feed and snuggle Jax. He is just starting the phase of "stranger anxiety" and took a few minutes to warm up to some of them. But once he did, he loved all the attention and love he received. Although none of them ever wanted to change a poopy diaper.............

Chloe feeding Jax. I could sure use a 7 year old as helpful as her in my house.

Along with the extra help I received with Jackson, Carter also had built in babysitters. Their names were Mario, Luigi, Dry bones, yoshi,....etc. He and his 2 cousins, Tristan and Mitchell spent HOURS a day playing Mario Kart. From morning to night we could find them on the couch. They were so cute. And so BAD at the game! The 3 boys had a great time together and I wish we all lived closer so they could play more.

Jackson even decided he wanted to play Mario Kart. Truth be told, he was no worse than the little boys......:)

Goodbye 2011. It was a long year, hard year. But still a wonderful year. Looking forward to an even better 2012.

Catch Up

So much to catch up on.

We kicked off November with surgery. Not for Jackson but instead for Carter. He had his tonsils and adenoids removed. This was the only picture I got the entire day. Don't let this peaceful picture fool you into thinking this is how recovery was. This was a rare, rare moment.

Once we got his pain controlled with medicine after surgery, and after the inevitable throwing up subsided, he was happy, energetic, and wanting to eat anything and everything. I figured this recovery would be a breeze. He hated taking the medicine. And I don't blame him. It tasted horrible. So we had battles with this every 4-6 hours. Him screaming and running away and then half the time having to hold him down to slip the liquid in his mouth. Finally he realized that the medicine did in fact make him feel better. So instead of 20 minutes of fighting, we were down to 10.

Then the real kicker: Roid Rage. You've heard of it right? Steroid Rage? Yup, Carter gets/got it. Everytime he has an allergic reaction he is put on a steroid for 2 days. This time after surgery he was put on it for 7 days. Side effects? He had all of them, in the worst way. Increased appetite, altered taste buds(nothing tasted good to him) trouble sleeping, mood swings(oh the mood swings). Several nights in a row he would be awake every 1-2 hours just crying and screaming. Bad part was that he wasn't fully awake and we physically couldn't wake him. It would take both of us to calm him down, finally get him back to sleep, and then he'd be awake an hour later. And during the day his temper was out of control. He would go from super happy, to devil child in about 3 seconds. And the day he went off the steroids was even worse, because come to find out, he was having withdrawls. So, next time he needs a steroid I will probably skip town for a couple of weeks. The tonsillectomy in and of itself was pretty easy. But 'Roid Rage, it's real!

November brought new foods for Mr. Jax. He now eats rice cereal, beans, peas, and canned turkey. Looks and smells like cat food. That stuff is horrible and the first time I made him try it he was gagging like crazy. Now I thin it out a bit with milk and he quite enjoys it. He is noticing us when we eat and really wants to join in. We also let him chew on licorice sticks, jerky sticks and crackers for a little texture and added flavor. He quite enjoys the jerky which is lucky since meats/proteins will be a huge part of his life.

Carter and Jax are developing a cute little relationship. I know Carter is anxious for the day when Jax can really play with him. Carter loves to talk to Jax and gets really excited when Jax smiles back and he always tells me "Ahh, he loves me."

Thanksgiving was a very special day for us. And not just because it was Thanksgiving....this was the first holiday we have spent out of the hospital since Jackson was born. We were so grateful for our little turkey this year and for his daily improvements!

My happy Turkey wearing his Thanksgiving get up.
He's finally learned to hold his own bottle. Which is so great for me if I need to do something else during eating time.

Our little monkey isn't really so little anymore. Do you see that double chin and that round belly? I have never been happier to see a little chub on a baby. He is gaining weight at a great rate now and we pray it continues. And in better news, Jax graduated from "therapy" today! They flagged him as a bit behind when it comes to playing and interacting with toys. But when they came and visited him today they were so impressed. He showed off his mad skills by picking up objects, passing them between hands and so forth.

He has rolled over several times but does not do this consistently. He has the capabilities to do so but chooses not to. He is just like Carter. Content, Lazy......whatever word you want to use! He can roll over but is just fine to lay on the floor and play in whatever position you put him in. I asked the pediatrician if I should be worried that he's not consistently rolling or sitting up yet and the pediatrician's words were: "congratulations." Congrats on having a slower mover which means you don't have to baby proof anytime soon. I am actually fine with having him stay in one place for as long as he wants.

Carter has really been a difficult child lately. Whoever said 2's were terrible obviously never had a 3 year old. Carter has really become almost a different child the last few months. We butt heads every single day. He is very emotional and seems to have a meltdown at the littlest things. I love him dearly but he sure keeps me on my toes.

We've been doing a few things to try and get his energy out. He's been to a gymnastics place twice and loved every minute of it. He's a cautious little boy but once he warms up to things he really goes at it.

Loving the trampolines.

This picture is a prime example of the drama this little boy brings. A simple request to have his picture taken turns into this. These are their Christmas pajamas that our Elf Simon left for them. Carter has worn them every single night since. I have to wash them and have them back to him by bedtime.
Here was the best shot of the night. Happy, go-lucky Jackson with Angry, sulking Carter.

Sweet Jackson getting ready to celebrate his first Christmas.

We've really been talking up Santa lately and Carter has been really excited to go and see him and tell him what he wants. He has been very consistent on what he wants for Christmas this year. A Carwash. He found this little car wash at Kohls months ago and has been asking for it ever since. And since he owns about 1 million cars, a carwash makes perfect sense.

When we first got to Santa, Carter got stage fright and refused to get close to santa. He didn't cry or anything but he kept telling us he was scared. I plopped Jackson down on his lap to show him that Santa wasn't scary at all. The first thing Jackson did was reach up and pull Santa's beard. Hard. I guess he was testing to see if this was the "real" santa or not. The beard and long hair are real. But I'm pretty sure Santa's suppose to have a white beard and hair. Not yellow like this guy.

Finally got Carter up to see Santa. He wasn't really scared anymore, just a little shy. He did speak right up and told Santa that he would like a carwash and maybe even a race track for his cars. They had a nice little conversation and Carter posed for a picture without any tears!

Is it bad that I secretly like it when they scream, cry and try to escape Santa's arms? It just makes for a better picture really. Maybe next year Jackson will be terrified. I can hope anyways.

I asked Santa for another holiday spent at home with my 2 boys and hubby. I don't need any other presents beside that.