Guess who's 2??

GWEN is 2!!!

Gwen turned 2 yesterday. I can't believe that our little, feisty, sweet, little girly is 2. We celebrated her birthday with a super duper fun party with some great friends of ours here in Des Moines. We served her favorite foods: hot dogs and Caesar salad. Isn't it weird that I have a 2 year old that loves Caesar salad? What a girl.

Most of our posts or updates are about Beckham and this is fun to do one solely about our little Gwen. Here are some fun facts about her.

1. Full name: Gwenyth K Scadlock.
2. Born: June 18, 2006 and weighed 7 lbs 2 oz (she was due June 28th).
3. Favorites: Elmo, The Wiggles, shoes, her blanket, and her binki (we are really trying to break her of that. Currently she only gets a binki at night and when she steals it from Beckham).
4. Famous phrases:"What doing?," more pees (please)?, " "okay," and "bless you."
5. Dislikes: Nursery (we are hoping that changes soon...it would be really nice to go to Sunday School), sharing with Beckham (we are hoping that changes also but we are pretty sure it won't anytime soon), milk (she takes after her mom on that one) and riding in the car.

We are so glad that Gwen is ours forever. She is the sweetest and cutest daughter and the best big sister to Beckham. Her adventuresome spirit, feisty nature, and contagious laughter is the greatest gift we could ask for. While Beckham was in the hospital she was so good. She did such a good job when she stayed with our parents (whom she hardly knew because they live in Utah) while they were here to help us. She continues to do so well (most of the time) with all of Beckham's care.

Happy Birthday Gwen, we love you too much
for words.

Here are a couple of pictures from her party. Enjoy!

Gwen got a tricycle for her birthday. She loved it so much that she would not even get off of it to blow out her birthday candle. We had to bring the cake to her on the bike.


Blowing out the candles with her friends


She loved the cake...even though she does not look like it!

What the weather?

What a crazy couple of weeks we have been having here in Iowa. I hope that everyone out there is aware of the flooding (I am speaking to those out of the state...of course!) that we have been having in this state. I have been a little disappointed in the national news in the way they have shown footage of the floods because they are SOOOO much worse. Here are a couple of pictures that truly show the devastation that has happened here because of mother nature.

Downtown Des Moines

More Des Moines

Iowa City

Cedar Rapids

More Cedar Rapids

These picture only show 3 out of the hundreds of cities effected by the floods.

I have had a lot of people inquire about us (thanks for caring!) and just to let everyone know...we are fine. We live in West Des Moines and not near any rivers. I feel very fortunate to live where we do and I am grateful that we chose to buy a home here instead of near Nate's school in Des Moines.

Please pray for the people of Iowa. 83 of the 99 counties in Iowa have been considered a disaster area and billions of dollars in damage have been done. Today our church meetings were cut short so that we could volunteer our time to pass out supplies that were shipped here from the church headquarters in Salt Lake City. I felt a wave of emotion as the bishop explained how devastating the floods have been and how many people are out of their homes, and without power and clean water.

Wow...I can't believe that this has happened in the town that I call home.

-Kim

Answer & Info

I thought that I should probably answer the "where are you moving" question that I posed in my last post. The answer to that question is that we are not moving away from Des Moines....at the current moment. Nate does not graduate until December and has not yet applied to grad school. He has a list of about 8 masters programs that he will apply for but he cannot apply until he takes the GRE. He is scheduled to take that in GRE (good luck Nate!). We are selling out place because of two issues. 1 - because we have out grown it and 2 - so that we can hopefully have it sold by the time we do move (where ever that will be).

On another note...check out this blog. My friend Erica is quite the blogger and every Saturday she does a post entitled "Saturday's Someone" where she spotlights a friend. This week she chose me to spotlight. I feel so flattered. Erica is such a great friend. We had a tornado scare here in Des Moines this week and Erica and her husband made sure to call us and make sure we knew about it so that we could go and hide. Good thing they called because we did not know about the tornado warning. Thanks so much Erica.

-Kim

Update 5/31/08

Sorry that I have been such a blogging slacker. This has been a much better week here in the Scadlock household. Beck seems to be feeling so much better and is showing it by getting into everything. Beckham has always been more calm then Gwen and we figured that he would remain that way....WRONG!! He is just as active as her! I can't believe how fast he is learning and growing. Last night he was watching Gwen climb on the coffee table and in no time he had figured out how to climb on the coffee table as well. His new favorite thing is to climb up the stairs in our house. I just hope that he does not follow in Gwen's footsteps and walk at 10 months...but I would not be surprised if it happened. No one would be able to guess that this little guy had a heart transplant only 9 months ago. What a baby!

The only real sad thing that happened to Beck lately is that he fell and tore his Frenula (a membrane connecting the inside of each lip to the corresponding gum). The interesting thing is that the week before he tore it, we took the kids to the dentist. The dentist checked out Beckham's gums to make sure that he did not sustain any permanent damage while he was intubated in the hospital. Beck's gums looked great, but the dentist noticed that Beck had a very large Frenula and he told me that he would most likely tare it by injury. Sure enough, a week later Beckham tore it. It bled quite a bit and was pretty painful for him. On the bright side, at least they will not have to clip it when he gets older.

I thought that this might be fun. Here is a couple of fun reasons why Gwen & Beckham are truly our children:

1. Beck recently had his nine month check-up and here are his stats - 90% for height, 10% for weight and 75% for head. Just like his daddy (tall, skinny, and with a big head - well the big head was when he was a baby)!

2. For those that read this blog and don't know me that well probably don't know that I have a little obsession with Michael Jackson. Don't get me wrong, I think that he is pretty weird dude, but man do I love his music and dance moves. The other day Gwen was being picky about which DVD she wanted to to watch. I decided to try something new and put on my Michael Jackson DVD. Below is a picture of the way Gwen remained during the entire DVD. Yeah...definitely my child!


3. Nate is a huge soccer fan (if you could not already tell by our son Beckham's name) and he has recently been teaching Gwen how to kick a ball. Gwen was practicing kicking with my large yoga ball last week and she walked up to Beckham and kicked the ball as hard as she could, exclaiming "catch" as she did so. The ball hit Beck right in the face and re-injured his torn frenula, resulting in another bloody lip. Gwen is taking right after her daddy and is a kicker!

4. I was feeding Beckham breakfast the other day and all of the sudden I noticed that he was falling asleep while eating. I quickly grabbed my camera and recorded it. So cute! He is just like me...I can fall asleep anywhere and I sleep like a rock.

That's it for an update from our house...wait...speaking of house, we are soon going to be putting our townhouse on the market. If anyone (those that live in Iowa that is) know of anyone who is interested in a cute little place PLEASE let me know. The best part about our home is that it has a two car garage. Yeah!! Trust me, you want a garage when you live in Iowa and the temp gets to -30.

Our cute little home! We are going to be so sad to leave it.

Have a great week!

Kim, Nate, Gwen & Beck

Update 5/18/08

We made a trip to the ER today for our little Beckham. He spiked a high fever yesterday and it continued through the night and into today. The funny thing is that we had a great "first" half of the day yesterday. We all woke up early and went to the Farmers Market (for those that live here in Iowa that have not been to the Farmers Market all I can say is that you need to go. It was super fun with lots of great food and much more). After the Farmers Market we went to a graduation party and then came home and played around. It was after all of that when I noticed that Beck was acting a little lethargic. I picked him up and that's when I noticed that he was smoking hot. I took his temp and it was around 103 degrees. He was also grabbing his ear (crap..not again!) and it was also oozing some. What the heck (I know the "heck" term makes me really sound like I am from Utah!), why can't I keep Beck's ears healthy? He was also refusing to eat or drink anything all day. I called his transplant coordinator and we both agreed that it would be best to just bring him into the ER because Beck always seems to catch the weirdest viruses/infections. So we skipped church (we felt like this was a good reason), dropped Gwen off at our friends house (thank you sooooo much Bret & Erica!) and headed to the hospital. To make a long story short, they concluded that our little man has another outer ear infection and a fever. He was given two shots of Rocephin, a prescription for another antibiotic, and sent home. It is strange to me that all of Beckham's ear infections only effect his outer ear and not his ear drum. I guess that is our Beckham!

Other than that we have all had a great week. The C.A.R.E. race last week turned out great. It poured rain, but that was not a problem. Nate ran with both of the kids in the jogger stroller and finished in around 30 minutes. Nice job! I volunteered for the race and stood on the corner directing traffic and telling the runners which way to go. The problem was that I forgot to ask which way the runners were supposed to turn and when it came the time to direct them I just had to guess. Luckily I guessed correctly.

Nate running with the kids

Beckham is growing so much. He now crawls like a normal baby and pulls himself up to a standing position against furniture. I can't believe that my baby is already 9 months. We will leave you with a fun video of our little guy. The video shows Beck's new trick.

Love,
Kim, Nate, Gwen & Beckham

Beckham on the News

Here is a link for the story they did on the little guy in anticipation of tomorrow's Donor Awareness 5k.

Organ Donation Gives Infant Normal Life

(Nate made us a logo for the race)

Update 5/7/08 & info

Last week we had the opportunity to participate in 2 Iowa Donor conventions. The first was held in Iowa City and the second in Des Moines. Our part of the convention was to tell Beckham's story and do a sort of "show and tell" with our little guy. The convention in Des Moines was such a neat experience because the lady who picked up Beckham's heart from the location of the donor, was able to meet Beckham for the first time. Nate already knew her from work but this was my first time meeting her as well. She walked up to Beckham and held him and cried (I cried as well, but there is no surprise there!). She never gets to see the donor recipients after their transplants and it was so touching to her (and us) to be able to see what miracles come through her job. We are so grateful to be able to participate in donor awareness programs. It is our way of trying to say "thank you" and to let others know how amazing the gift of organ donation truly is.

A great update is that Beckham has not thrown up in a whole week! Yeah! I think the reasons for this is because we have switched his Prilocec to Prevacid (which we can mix with food), he is finally over all of his ear infections and his tooth that has been bugging him has finally popped through his gums. Lets hope this continues. Beck has also gained back all of the weight that he has lost. Way to go little buddy! Upping his calories has really helped...in most ways. The only bad problem it has added is that Beck now has quite the gassy instrument on his back side and it is deadly!! I did not know that a 9 month old could make that kind of noise and smell that bad.

Some bits of info is that our cute little guy is going to be featured on the news tomorrow night. Sorry that this is such late notice but we just found out about it. Dan Winters from WHO-TV 13 (NBC) is coming by tomorrow to tape a segment that should be featured on the 6:00 PM news. The segment is pertaining to the C.A.R.E. organ donation awareness run on Saturday. We will put the segment on the blog after is airs.

Speaking of the C.A.R.E. run, let us know if you are planning on running with us. You will want to sign up as an individual because we are not signed up as a team but we have cute little "Team Beckham" stickers for everyone to wear (if you want to). Thanks in advance for everyone who is participating. Let us know if you need further information about the run.

One more bit of info is that we have met a great family who is expecting their third child, a girl who they are naming Mia. Mia has been diagnosed with Critical Aortic Stenosis (the same diagnosis as baby Noah) and will require a heart transplant upon birth. Our hearts a prayers go out to this sweet family and I look forward to getting to know them better. One neat thing is that they can list this little baby when her mother is 36 weeks along. Please pray for them all.

Much love always,
-Kim, Nate, Gwen & Beckham

C.A.R.E. 5k & 10k

Hey all of you Iowans (and outside Iowa is you are interested) please come to the first annual C.A.R.E. (Compassion for Awareness, Remembrance, and Education) 5k & 10k in Waukee, Iowa on Saturday, May 10th. This race is to spread awareness about the importance of organ and tissue donation and to give thanks to the donor families for their unselfish gift of life to the donor recipients. What a great cause to run for! The race is sponsored by the My Angel Foundation. Register to run here. You can walk or run in the race or even push your kids (in a stroller of course). It begins @ 8:00 AM. We hope to see you all there.

Update 4/28/08

All ready for warm weather (if it ever comes!)

We visited the GI doctor today and I think that we might finally have some options (hopefully). The GI doctor actually was very impressed with Beck's size even though he has lost some weight. His exact words were "he's a chunk." Beckham is only in the 25% of weight for his age but he has such a big head and such huge cheeks that people think he is super chunky. Well, I guess that he is chunky next to our little Gwen.

We actually were really excited this weekend and full of hope because Beckham went 3 days without vomiting but then Sunday he got really mad during med time and vomited. Maybe I should look at the 3 days as progress. The GI doctor said that this is a "learned behavior" issue (which we already figured) and that he thinks the G-tube would be a bad idea because with the tube we would be putting the meds directly into his stomach and if he gets ticked off he can still vomit all of his meds. He does not rule out a G-tube, but wants it to be a "last option" resort. His suggestions were to first- add extra calories to his food so that he can re-gain the weight he lost and second - we are changing one of his meds (Prilosec) to a powder form so that we can mix it with his food. He hates the Prilosec and a lot of the time that is the med that sets him off. The doctors third suggestion was that we have a Speech Pathologist come in and work with Beckham to help him not react to his meds and anger with vomiting. We'll see if any of these work.

Beck was playing on the floor the other night and suddenly stopped.
I went to check on why and this is what I found. SO CUTE!!

We have a pretty busy week with doctor appointments, speaking events for Iowa Donor and lots of other stuff. I will report on the happenings soon. Enjoy your week.

-Kim, Nate, Gwenyth & Beck

Update 4/22/08

Beck's culture for his ear infection came back yesterday and showed that it is a Staff Infection. Yucky for our little guy, but at least it is not another crazy bacteria infection that his doctors have never heard about. His meds seem to be helping a lot (when we can get them down him) and the creams also seem to help. Beckham's ears ooze not only on the inside but behind his ears and besides the oozing they crack and bleed. We have been given a couple of creams for these issues and I think that we have finally found the one that works.

On to the vomiting issue. Nate and I are at a complete loss on what to do about this. Beckham now not only vomits when we are giving him his meds but whenever he gets mad as well. His vomiting started happening a little over a month ago and at first it was once and week and it has now evolved to almost every day and sometimes twice a day. Because of the large amounts that he is vomiting his weight has gone down and now he now has to have weight checks every two weeks. His weight loss is not the issue that most concerns the doctors, but the fact that he is vomiting his meds. He has to have his meds and there is no way around that. We have used every trick that his doctors and others have come up with. Some of them include flavoring his meds, a binki that you can give meds through, a bottle with a syringe that you can place meds in, spacing out his meds, and on and on and on. You can basically name it and we have tried it. Our baby is just to darn smart and he will not be tricked. This basically only leaves one option and that is a GI tube. We are meeting with the GI doctor soon to discuss this and see if he has any other options. I am truthfully okay with the GI tube because I know he has to have his meds and I know that the GI tube will be temporary. I just hate that Beck will have to get another scar on his little body. But the way I look at it is that if he has to have some sort of set back I think that this is the best option.

A great thing for us to report is that he had his cardiology appointment on Friday and everything looked great. His heart looks awesome and the doctors can't say enough about how amazing he looks. A neat thing that happened at Beck's appointment was that the cardiologist who first saw Beckham after he was born and diagnosed him, stopped by the room we were waiting in. When I first met this doctor he was very "professional" (that is probably the best term to use because he was kind but not overly friendly and I am sure that was because he was delivering very bad news to us and did not want to give us false hope) and this time when he was completely different. He came into the room, went over to Beckham and smiled and played with him. He was so sweet and in awe of how well he is doing. His last words to us before he walked out was "miracles do happen." I was so touched by this because he is right. Miracles happen. My little Beckham is a living miracle. I always wondered what makes a person want to become a doctor (more particularly a specialist in something) or a surgeon or so forth and take lives in their hands and see such sad things. Now I know that moments like when he saw Beckham make his job all worth it.

That's all for now. We will keep you posted on anything else. Have a great week!

-Kim, Nate, Gwen & Beck

Update 4/16/08

Sorry it has been so long between posts. Here is an update on the last couple of weeks.

Last week the "sick bug" visited the Scadlock household. Nate came home from Texas with a cold which soon passed on to Gwen, Beckham and myself. Gwen and I felt sick, but it was "a normal cold" sick. Little Beck's cold was of course much worse and I took him into the doctor (because of the severity of his cold and of course because I am paranoid!). The doctor said that Beck's cold was also a "normal cold", just intensified because of his immuno suppressed state (duh). He did not seem to get too much better and by Wednesday he had spiked a high fever and was clutching his ear. By the weekend I noticed that his ear was all red and was oozing (not as bad as the last time but I did not want to wait for it to get worse). I took him in to the doctor again today and they did another culture test and sent us home with more meds, drops and creams. We should get the results from the culture back in a couple of days.

On a happy note we had a couple of exciting events this weekend. On Saturday we all went to Costco as a family. Yahoo! This may seem insignificant to some, but to us this was a real treat to be able to go somewhere as a complete family. It seems like the only time we ever go anywhere all together is when we go to doctor appointments. I can't even express how fun that is (note my sarcasm). Also, on Sunday we went to church as a family. We sat in the back and we did not attend all the meetings but we did go at least. It was especially nice to sit next to Nate at church and have his help chasing Gwen. My next project will be to arrive on time for church. I have never had to get two children (and myself) ready for church at the same time and I completely underestimated how much time I needed.

Another exciting event is that Beckham is finally sitting up. Yeah! I worked really hard at this. I would sit Beck up and feed him cereal pieces one at a time. He would not notice that he was sitting up because he was concentrating on eating and soon enough he had the hang of it. Way to go little dude!

Beck sitting up all by himself!

One frustrating thing that happened this week is that Beck has developed a very bad habit. I mentioned in an earlier post how we are struggling with giving Beckham his meds....well that has evolved into a serious problem. Beckham now gets so angry when we give him his meds that he throws up. This does not mean spits up but actual projectile vomiting and large amounts of it. It is so frustrating because 1 - we just have to re-give all of his meds and 2 - he has a 3 hour period around meds where he cannot eat and when he throws up everything in his stomach it makes him hungry and there is nothing that I can do about it and 3 - he has been losing weight because of it. I am not quite sure what to do about it. It has happened almost every night this week and I am at a loss. I feel so bad for the little guy but there is nothing I can do about it because he has to have his meds because they are keeping his body from rejecting his new little heart. We have tried spacing his meds out so that we are not giving them all at once but that makes him just as mad more often. We have also tried every product imaginable to help trick Beck into taking his meds. I am scared that the next step will be a G-Tube (gastronomy tube). Truthfully, I can deal with that. I will to deal with anything to help my little Beckham. If anyone has any suggestions I would be thrilled to hear them!

I'll end on another happy note. Nate's finals are next week and I cannot tell you how excited he is for this semester to be done. I know that the kids will love having their daddy at home more often. Yeah for summer break, yeah for warm weather and yeah for no school until August.

Looks like Gwen is getting ready for finals as well!

Here is a fun little video of the kids. They are starting to play together and it is so cute. I caught this video on the tail end of them playing so it is not the best. Please ignore the fact that Gwen has no pants on. She takes them off the moment I put them on so I have given up. Please also ignore the fact that Beckham's outfit won't snap up all the way over his backside. We are at that awkward "in between" sizes phase. He is grown out of 6-9 month clothes but does not fit in 12 month clothes.

That's it for now. As always, thanks for all of your prayers, thoughts and kind words for our little family. I know that saying "thanks" is not enough to express how grateful we are but it is a start!

-Kim, Nate, Gwen & Beck

Update 4/2/08

Happy Greetings from the Scadlock household. I would love to say "happy greetings from the Scadlock yard" or "happy greetings from the Scadlock's, enjoying the great outdoors," but no...Iowa is still cold and we are still stuck in doors. Iowa was even kind enough to kick off the month of April with snow. Lovely! It's alright because I am sure that the warm weather is just around the corner and soon I will be complaining about the heat.

Gwen enjoying the snow

Everything here is great. Last week Nate traveled to Dallas, TX to attend the National Nursing Association meetings. This was a great opportunity for him and his career. Last year for a school project Nate and a few others wrote a resolution about how they believe that it should be a law that all coaches are CPR certified. His school liked the resolution so much that they sent him and another to the Iowa Nursing Association meeting to present it to the board. The Iowa board liked it so much that they sent him and another girl to Dallas this past week. They completely paid for the trip and put Nate in this amazing hotel (rooms are from $750-$1,500 a night). Nate's resolution passed with a 99% rate. Way to go! During this time Nate was able to meet with many different people from top schools in the USA. This will help immensely when it comes to the time where we will make the decision on where to move for Nate's doctorate or masters program. Our top choices (right now) are: University of Utah, University of Iowa and the University of Michigan. Nate will start applying this summer so we will keep you posted. I am leaning toward the University of Iowa because I am little nervous to leave Beck's doctors.

Nate's hotel (not quite a Super 8!)

While Nate was gone his aunt Kally and his cousin Miquel came to stay with me. I know...I am a wimp when it comes to staying alone and I am so grateful that they were here to keep me company and entertain my children. Actually this was a great thing for me to have them here. Nate's aunt Kally just celebrated her 19th year of having her heart transplant. I know that I probably drover her crazy talking transplant...but I can't express how much it helped. I am still such a basket case when it comes to Beckham and it is great to know that I am supposed to feel that way. Kally is a great photographer and she took such cute pictures of my kiddos.


Other then that, we are all doing great. Beck is getting a tooth and is not the happiest camper but he is doing pretty well. We got his results back from his CMV test yesterday and he tested negative! Yeah! This does not mean that he will be able to come off the Valcyte, but it does mean that the med is doing its job. Beckham's ear also finally stopped oozing. Yeah again! Here is a couple fun facts: Beck weighs two pounds less than Gwen and they are now in the same diaper size. I love it!

Look at Beck's scar. You can barely see it!

That's all from us. Wishing you all warm weather very soon!

-Kim, Nate, Gwen & Beck

Update 3/21/08

Beckham's results from his ear culture came back this week. They showed that Beckham's ear infection turned out to be a bacterial infection. In fact, the bacteria that was infecting his ear was one that neither his pediatrician or his transplant doctor had ever heard about. It is a very rare bacteria that seldom effects humans unless they are immuno-suppressed. Hmmm...well go figure! Beck's ear is still oozing some, but we can at least touch it and clean it. He has finished both of his antibiotics and now we just have to give it more time to heal. It just takes him a little longer than most babies!

Beckham seems to be doing great. He has recently started crawling (well, army-crawling) everywhere. He still has no desire to sit up, but we know that he can do it because we can sit him up and he will stay until he realizes what he is doing and then he immediately face plants into the carpet. Here is a video of him "crawling." Nate recorded it on his phone so it is not the best quality.

Beckham is also starting to get into things. I was changing Gwen's diaper the other day and when I went to reach for the Desitin tub (yes, we have to buy Desitin in bulk tubs) it was not where I left it. I looked over and Beckham was rolling around with it. I cleaned it off of his hands and off the carpet and returned to changing Gwen. Nate came down a couple of minutes later and started laughing. He picked up Beck and turned him around to show me his face that was covered in Desitin. Oops.....I did not think to even check if he had Desitin on his face. It was pretty cute.

Yesterday we took the kiddos to the zoo here in Des Moines. Not the best zoo I have been to, but it was free and the kids loved getting out. We also took our little friend Elijah. Elijah was a blast to take. He loves animals and named each and everyone we passed. Elijah has leukemia, and is currently battling the disease. He is such a little fighter. If it was not for his bald head you would never know he is sick. With Beckham and Elijah together we called our group the "immuno-suppessed express." Good thing that Gwen is finally getting hair or you would think we had a whole slew of sickies!

Happy Easter to each of you. Also, a happy spring. Spring is such an exciting time for us because we are finally getting closer to escaping from our little hideaway!

-Kim, Nate, Gwen & Beck

Update 3/12/08

I had a feeling that I should have waited to publish my last post because I just knew that things were going to change. I was right.

Beck's ear infection did not heal as quickly as we had hoped . By Wednesday of last week it was oozing so badly that you could not even see the inside of his ear canal. By Friday, his ear was hurting him so badly that we could not touch the outside or anywhere near his ear. He would scream every time he ate and every time we tried to rock him to sleep. I again took him in to the doctor and he quickly decided that his ear infection was much worse and he needed a stronger antibiotic...actually 2 stronger antibiotics. I was also instructed that if it got any worse over the weekend that I needed to immediately call his transplant and pediatric doctors. Beckham was up most of the night on Saturday and by Sunday he was beside himself in pain. After talking to the doctors we decided to give it one more day on the new antibiotics before taking more extreme measures. By Monday his ear looked slightly better (after I cleaned some of the built up gunk out of the outside of his ear) but after talking to the transplant team we decided to get his ear cultured to be on the safe side. I took him back into the doctor and they cultured his ear and they also decided that his ear infection was an outer ear infection. We are still waiting on the result of the ear culture. However we did get the results of another test and Beckham tested positive for CMV again. Darn it, darn it, darn it!!! He is now back on the Valcyte. I hate this medicine. It is so hard on his GI tract. There is no chance of him being without a diaper rash/open sores for a long time. Other then all of the above, Beck is doing great. He has lost a little weight because it hurt his ear every time he ate, but I am sure he will gain it back in no time. Beckham seems so healthy and strong that I tend to forget that he is immuno suppressed and every time he gets an illness it will be worse for him than other babies his age.

The rest of us are all doing great....for the most part. Gwen woke up on Sunday night with a smoking hot fever and then I woke up the next day with a wonderful cold. It is crazy how we can still get sick when we have almost no contact with the outside world. But we did visit the doctors office three times in one week and that is the best place to pick something up. That's alright. We will all be fine. Actually the weather has been nice the past two days and Nate and I have been able to take the kids on walks.

We hope that all is well in your homes and that you are also experiencing great weather. We are going to take advantage of it while it lasts! Have a great week.

Kim, Nate, Gwen, & Beck

Update 3/5/08

Darn....more meds for Beck. Oh well, it was nice while it lasted!

Beckham's meds have increased and not only have more been added but the volume has increased as well. This is always a challenge. The biggest challenge is getting him to take and swallow the meds orally. We feel so blessed that Beckham does not have any tubes, but I watch other mothers who have children with tubes, and they are able to put the meds in them and the child does not even notice. It is so hard to hold a 7 month old still long enough to get all of the meds down him. You would think after this long he would be used to it...but he is not. The other major problem with increasing his meds is the toll it takes on his GI tract and this means return of the monster diaper rash. Ouch!

Beckham and me visted the doctor on Monday because his ear was oozing (nasty). I had noticed it a couple of days earlier and brought it up to Nate and Beck's home health nurse. They both looked at it and both agreed that aside from the oozing it looked relatively healthy. Beckham was also NOT having any signs of an illness (congestion or fever) but he was acting very fussy. When the doctor looked at it on Monday his response was that the ear drum "looked healthy," but the stuff coming out of it was a "sign of an infection." He thinks that his ear drum must have ruptured recently and was now draining the infection. This was so different than any of Gwen's ear infections. In her first 9 months of life she had over six infections and had to get tubes put in her ears. Each time she had an ear infection she had a fever and congestion. I am not complaining at the fact that Beckham did not have a fever or congestion, I just feel bad that I did not think about him having an ear infection earlier. He could have been put on antibiotics earlier and not had to suffer so long. I guess that I am just a parent beating themselves up. I know that this sounds weird but I am actually grateful that Beck is suffering from something that normal babies suffer from and not something that is life threatening. Beck is now back to his normal happy self.

The rest of us are all doing great. We are sure ready for some warm weather. Last Sunday we had "sort of" warm weather and Nate and me decided that it was warm enough to take the kids on a walk. We bundled them up and stuck them in the double stroller and walked outside and right when the garage door went up we were devastated by the sight of rain. Oh well, we took the kids out anyway! When you are stuck inside all day you will take what you can get.

The kids all bundled up in their stroller ready to go...

And here's the whole family, rain or shine

That's it for us. Thanks as always for your continued prayers and thoughts on our behalf. We feel the strength of all of your prayers each day....just look at our Beckham, he is here because of all of your prayers and faith!

Wow! I can finally make two ponytails in Gwen's hair!

-Kim, Nate, Gwen, and Beck

Update 2/25/08

It's been a great couple of weeks (for the most part) here at the Scadlock household. Being that it has been as low as -32 (with the wind chill) here in Des Moines we surprisingly don't have to much to complain about.

Beckham has had quite a few doctor appointments and each one has been very positive. His cardiology appointment went great and his ECHO, EKG, and X-Ray were all normal. This is such great news and such a different experience then when he was in the hospital and we watched the doctors worried faces after looking at the results of the same tests. At that same appointment he was taken of 2 medications! Beck's last CMV test came back negative so he was taken off of the Valcite which is a blessing because that is a mean drug. He was also taken off of Enalipril because his blood pressure has remained normal for the last couple of months. He should have been down to only 2 meds but sadly a new one was added. He now is taking Prilosec for reflux. Hopefully this will help with his spitting up. I can't tell you how many outfits both Beckham and myself go through each day because we are both covered in his stomach contents.

Another appointment Beckham had was to see where he is developmentally. He is now 6 months old and to be in the developmental range of a 6 month old he had to score between a 90 and 120 on the development test. Beck scored a 112. This is so great for a baby that basically laid still for the first 2 months of his life. He is still behind in many aspects, but we are glad that his brain is developing normally. He still has no interest in sitting up or putting any weight on his legs. I am very alright with this because I don't think that I am ready to have 2 mobile children. He also seems to favor using his right side more than his left. The Nurse Practitioner and Physical Therapist who see him do not seem to be too concerned, but they are going to bring an Occupational Therapist with them the next time they come just to be on the safe side.

At Beck's six month appointment he weighed 16.5 lbs. What a chunk....well not really, but compared to our skinny Gwen he is chunk. He is in the 25% of weight, 75% for height and his head is in the 50%. I think that Beckham's cheeks make up half of his weight! Beck was also given the clearance to introduce solids into his diet. He has only been given rice cereal thus far and he actually loves it.

Looks yummy eh?

The only thing that our family has to complain about is that both of our children have black eyes. Yes, you heard me right, they both have black eyes and NO we do not beat our children! Beckham's black eye was caused when Gwen walked by him with her sippy cup full of milk and accidentally dropped it on him. It hit him right in the eye. Poor little guy!
Gwen's black eye was caused by her finally achieving her goal of crawling out of her crib. She fell flat on her face. Her bruise started on the side of her face but by the next morning it had moved under her eye. Poor baby girl.

Black eyed Beck

Black eyed Gwen day 1

Black eyed Gwen day 2

The black eyed twins

Other than the black eyes we are all doing great and trying to stay healthy and sane. To tell you the truth I can't find it in myself to complain about anything when we have been given something as precious as Beckham's new heart. This winter will end soon and once it does we will emerge from our cave to explore the outside world. Again, a big thanks to everyone for their continuous support of our little family. We feel so blessed for all that we have.

-Kim, Nate, + black & blue Gwen & Beckham

Valentines Day/CHD Awareness

We are so grateful this year to be celebrating Valentines Day as a family and we are also grateful to be part of CHD awareness week. Many of you may be wondering what CHD is.....well CHD stands for Congenital Heart Defects. This week is the national Congenital Heart Defect Awareness Week and I would like to let you know some facts and statistics about CHD.

• According to the March of Dimes, congenital heart defects are the #1 birth defect. It is estimated that 40,000 babies with Congenital Heart Defects (CHD) are born in the United States each year. To put CHD it in a better statistics: about 10,830 babies are born each day and out of those babies about 411 are born with some sort of birth defect. Out of those 411, about 87 are born with CHD. Isn't that crazy? I never knew this before I became a heart mommy!

• Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects. Although some defects are genetic, in many cases the cause is unknown.

• More than 1 million American children and adults with Congenital Heart Defects and Childhood Onset Heart Disease are alive today.

• CHD is the most frequently occurring birth defect, and is the leading cause of birth-defect related deaths.

• Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHDs are not detected until adolescence or adulthood.

• Some CHDs may not require treatment other than periodic visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really "cured."

• Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and Childhood Onset Heart Disease.

• It is estimated that more adults than children are living with congenital heart disease, and this population is expected to grow by 5% each year. Yet, many adults with CHD are not receiving adequate ongoing care from trained specialists.

*Beckham's heart defect is so rare that I could not find statistics on the number of babies born each year with Mitral Valve and Tricuspid Valve Stenosis.

This "heart" of our Valentines Day this year is focusing on the precious gift of Beckham's new heart. My good friend Crystal (and Nate's cousin) whose son Noah received a transplant a month before Beckham left me a comment once and it made me think. These are her words once she saw Noah's old heart:
"Here was the heart that had grown inside me and was suppose to be keeping my baby alive and now it's sitting on a table, the heart that nearly killed him.... How am I supposed to feel? Then I imagined the new heart beating inside him. The one another mother created and gave to my son. The one that is now keeping him alive. The price that was paid...."
I sometimes sit and feel Beck's heartbeat and marvel at the fact that Beckham grew in me, but his heart did not. It grew in another mother, a mother that lost her sweet baby. There is no words to express my gratitude toward that mother. I am actually playing with Beckham as I am writing this and he is smiling and laughing. I am so grateful that he is still with us, that he has a second chance at life, that he is able to sit and smile and laugh. We love him so much.

Children die each day from CHDs and while waiting for a heart transplant. I know that donation is a hard concept to think about but the one thing I do know about organ donation is that it is something that you never really think too much about until you are in a situation where that is the only option to save a life. Lets hope that this never has to be your option. If you would like to know more about CHDs or organ donations or make a monetary donation please click on the below links.

CHD
Organ donation

Happy Valentines Day!
-Kim, Nate, Gwen, and the "heart" of our family Beckham

Snow Day

It snowed enough the other night that Nate's school was canceled so we took Gwen out to play in the white stuff for the first time.

A tale of a press conference, the US Secretary, and a whole load of crap

With Beckham we have had on occasion the opportunity to speak at a few events in order to promote Organ Donation and support the people that did so much for us and our little guy. It is a way in which we can "pay it forward" and show our gratitude. Well, today we had the opportunity to speak at an event headlined by the ex-Governor of Utah and present US Secretary Mike Leavitt. It was a conference used to promote the utilization of electronic systems in the health care industry and the importance of electronic health records.

The event ended up being a bit different than we expected. We arrived at Des Moines University to see three suburbans surrounding a car. We walked by and there were still guys in the suburbans, but not in the car. As we walked in we saw various 'suits' walking around hurriedly and then a bunch of Secret Service guys running around. I have to admit I didn't expect that for the US Secretary of Health and Human Services. We asked where Leavitt was and were told that when he came in that he was immediately escorted into a little room with 'key-card' only access. There was a guy with the little mic in ear guarding it. So we sat and waited. A few minutes later a woman escorted us into our own room close to the conference auditorium where we could wait with Beckham.

We waited a while and an occasional person popped in to tell us "Secretary Leavitt will be here in 20 minutes" then 10, 5, a few, etc. At about the 5 to 10 minutes Kim smelt a familiar odor and handed Beckham to me. Problem is that when I went to change him we found an explosion of sorts. It reached from the middle of his back down to his 'now green' shoes (no kidding). And it left a strong 'virus-enhanced' stench. Of course it had to happen today. Kim took his pants to the restroom to do a quick clean up job and I kept my efforts on stinker. I cleaned him up the best I could, but the only real way to hide his new look was to wrap his blanket under his armpits and let it drape down. Kim got back with his un-salvageable pants at about the same time a Secret Service guy poked his head in to say "Secretary Leavitt will be here in 30 seconds". At that same time some other political representatives began filtering in. More than one had that look on their face...yeah that stink look that the slight explosion of a baby in a small room can cause. Kim tried very hard to get the smell out by using hand sanitizer on everything, but that smell did not want to leave. It was all we could do to keep from laughing as next USS Leavitt came in and shook our hands. He was nice and we just talked about Utah for a couple of minutes before being escorted into the conference.

We went in and first an old Governor of Iowa and apparent buddy of Leavitt spoke and then the Secretary himself took his turn. The first five minutes of each speech involved professing their respective man-crushes upon each other...don't you love the customary butt-kissing of politics. Then I spoke in order to add a personal touch to the statistics and logistics that had been previously discussed. During this time I was holding Beckham...blanket kilt and all...fortunately it never dropped to expose his less the white onesie.

Overall it was a good experience...blow out and all. Beckham just doesn't seem to have much respect for politicians.

Sorry that we do not have any pictures of our event. We of course forgot to bring our camera. Go figure!

Nate, Kim, Gwen and stinky boy Beck

Update 1/19/08

We visited the GI doctor at the beginning of January to hopefully find a reason for Beckham's bloody stools. We had three different theories by three different doctors (CMV, medication side effect, and lactose intolerance) and we just wanted to know which one or if all of them were the cause. The GI doctor quickly ruled out lactose intolerance because when Beck initially went into the ER at Thanksgiving his tests came back showing that his body had no allergies and irronically when tests were run a couple of weeks later (when he was switched to the soy formula) they showed that he had developed allergies from the new formula. No wonder he hated it. The doctor also ruled out CMV as the cause for the blood. His theory was that he had bleeding nodes inside his colon. If this was the case then it was not anything serious to worry about. The doctor wanted to do a sygmoidoscopy (placing a small scope inside the first 6 inches of the colon...yuck!) to make sure that this was the cause. Beck had the sygmoidoscopy on 1/14/08. They did not sedate Beckham for the procedure because of his age and because it was not a serious procedure. I am sure that this was very uncomfortable for him because you should have seen his face and the size of his tears when they brought him back to us. Poor little guy! The procedure showed that Beck had a perfectly normal colon with no bleeding nodes. This was good news. I guess that medication side effects in the cause for the blood after all.

On 1/11/08 we made a trip to Iowa City. This trip was not for a doctor appointment but for an award ceremony for the University of Iowa donor team and critical care team. The team received this award because of their success rate of families deciding to donate their loved ones organs. To receive the award a hospital has to have a success rate above 75%. The University of Iowa team has an 81% rate. That is incredible! Our family was asked to come and tell Beckham's story and personally thank the donor and critical care team. We felt that this was a privilege because this was the least that we could do to thank the team that helped save our sons life. A man also spoke who had a sister that passed away and his family made the decision to donate her organs. This was such a neat thing for us to meet a member of a family who had chosen to donate life. This man was so incredible and gracious. Since his sisters passing he has become an spokesperson for the Iowa Donor organization. We feel so blessed with the gift of Beckham's heart. We cannot express our gratitude in the least amount to the family who donated their child's organ during a time of their morning. We have been given a gift that is priceless and we will be eternally indebted to the donor family, the Iowa Donor organization and the team of doctors and medical staff who work so hard to save our baby Beckham's life. The award ceremony was featured in the local Iowa City News and paper. Please click below to view the news clip and newspaper article. Don't be alarmed because the news clip has some technical difficulties and freezes half way through...at least it does not freeze before it shows Beckham's piece!

Iowa City Donor News Clip

Iowa City Donor News Article

Nate came home from work on 1/14/08 with a bald head. This was very unexpected but for a very noble cause. Some very good friends of ours (The Hancocks) have a three year old son Elijah who has just been diagnosed with Leukemia. Elijah is a very sick little boy and could use all of the prayers we can give him. Nate along with Elijah's father, two uncles and another family friend decided to shave their heads in support of Elijah's recent hair loss. Please read about his story at Elijah's blog .

Beckham continues to do very well. He is a sweet, calm and happy child. I know that we have mentioned this before, but you would be shocked at how good he is. He loves to sit and watch all of us especially Gwen. The only thing that has been an issue lately is getting his Tacro level in the appropriate range. He is growing so fast that his Tacro needs to be adjusted quite frequently. Beckham is in the 12% of weight, but the 70% of height. He is definitely a Scadlock (tall and skinny). Gwen is also doing well and has three times tried crawling out of her crib. Ahhh! I was not ready for this. I am so scared to put her in a bed because she is so busy. I know that she will be out of that thing the moment we put her down for bed at night. We knew that we were going to get to this stage...we just did not want it to happen yet. I guess that it is for the best because now we can put Beckham in the crib.

Thank you, thank you, and thank you again to everyone that has reached out in anyway to our family through out this 5 1/2 month period. Our hearts are so full of gratitude.

Love,

Kim, bald Nate, Gwen and Beck

Tadhg Michael Kilgore

A sweet family in the University of Iowa PICU lost their little baby boy last night. Tadhg (pronounced like tiger without the "er") Michael Kilgore was on the heart transplant waiting list for over three months. He never received the precious gift of a new heart, but he showed what an amazing spirit he had to fight and hang on for as long as he did. The Kilgore's situation was so similar to ours. Just like with Beckham they had no idea that there son had a heart condition prior to birth. They also have a beautiful daughter just like Gwen.

We feel so fortunate to have been in contact with this family and to have been in the same room as little Tadhg. Please pray for this little family. You can read about his incredible life at Tadhg's blog

-Kim

Update 12/19/07

What an eventful month it has been for our family!!

Nate and Gwen flew to Utah for the Thanksgiving weekend to attend the funeral of Nate's great grandfather. They left Thanksgiving morning (at 3:00 AM because they were leaving from Omaha) and returned home on Sunday night. They day after they left I was changing Beckham's diaper and noticed blood (Beckham had also been acting really fussy which is very unlike him). I called Beck's nurse and the transplant team in Iowa City and they all thought that it would be best to go to the ER. This of course had to happen the one weekend that Nate is away from me and to make matters worse I could not get a hold of him to tell him that Beck was in the hospital. Thanks to my good friends here in Iowa I was not alone long. If you are reading this, A GREAT BIG THANK YOU AND I LOVE YOU to Erica and Courtney. Thank you also to Bret and Wade who came to the ER to give Beckham a blessing. I cannot express what great friends we have here in Iowa whether they be from our church, work or school. It makes being away from our families so much easier.

It could not be determined in the ER what was wrong with Beckham so the doctors decided to keep him over night and run a whole bunch of tests. This meant a lot of needle pokes...and for you with heart babies you can understand what I mean by "a lot of pokes" because it is very hard to find a vein in them. Each test was coming back negative which was good and bad (good because he did not have some illness and bad because we still did not know what was wrong with him). The doctors also thought that Beck might be lactose or soy intolerant, and since I am his source of food they put me on a no-dairy and no-soy diet. Let me tell you how hard that is. I never realized how many things have dairy and soy in them. I did not notice much of a difference in his stools or in his behavior with the elimination of soy and dairy.
We were released the next day with still no answers to what was wrong but we were still waiting for the results of a couple more tests. A couple days later the results of a CMV (Cytomegalovirus) test came back positive. It was explained to me that almost everyone has CMV during their life but if will show up as a sore throat or something very mild. In an immuno suppressed individual it effects them more seriously. It apparently has effected Beckham's GI tract. He is on a high dose of an antibiotic. This antibiotic can cause babies to become neutropenic (low white blood cells) and he has to have blood work done often to make sure that this does not happen. The only symptom that we have notice is that is gives him horrible diarrea. This makes his already bad diaper rash even worse. I hate changing his diapers because he screams out in so much pain. We have used so many diaper rash creams (over the counter and even behind the counter) and cannot seem to find anything that is a permanent fix. Ilex and Calmoseptine are not even working. Any suggestions? I think that we have tried almost everything. Beck is being such a trooper through the whole thing. He will have to take this med for at least 3 months. He has also recently developed a rash that has covered his whole body. The thought is that it is Eczema. I got some cream for his skin yesterday and I am waiting to see it this works.

We just celebrated Beck's 4 month birthday. He is making huge milestone. He is rolling over and batting at toys and he laughs and coo's non-stop. He has recently found his feet and is always holding at least one. He is doing well for all that he has been through. A physical therapist saw him recently and said that she is so surprised that he is not farther behind. Yesterday he was put on all formula because the doctor still thinks that he might be lactose or soy intolerant. Beck is not thrilled about the change from breast milk to formula but he is doing great. I would not be thrilled either because the new formula smells like old cheese and stale crackers (no lying!). Gwen has also hit a milestone. I can now get a small ponytail in her hair. Those with bald little girls can understand what an exciting thing this is for a mother. Nate and me are also doing great and hitting our own personal milestones. Nate recently finished his semester in school. This has been one of his hardest. He has almost a month off until he starts again. I have also reached a milestone. I think that I have come to the realization that I am not going to be able to relax....which I have also come to realize is just fine. I am always scared that Beck is going to get sick and I can't relax about it and I always seem to freak out every time that Beck gets sick. I know that he will get sick a lot and I know that he will make it through it....but I am the mother and I am entitled to freaking out about it!

We are very excited to leave behind 2007 and move onto 2008. We had such an "eventful" year (to say the least) and we are excited to move forward. We have been so richly blessed this year ands we have so much to be thankful for during this holiday season. We cannot possible thank everyone enough for all that they have done for our little family.

Here's to a very merry Christmas and happy 2008!!! We hope that you enjoy the below video clip of Beck.

Much love,
Kim, Nate, Gwen and Beckham

The Beckham Scadlock Show

We have had requests to speak about our cute little kiddo at a few luncheons and such in the next year, but today Beckham made his first television appearance. You can watch it by clicking the "Beckham's News Story" link below.

Beckham's News Story

Eric Hansen from KCCI Channel 8 came over to our house and filmed our little guy for about half of an hour and asked us a few questions. On queue our children decided that only tears and screams were what they were going to give the camera, but the guys did a pretty good job and still getting a few 'happier' shots of our cute little monsters. Enjoy.

Update 11-17-07

We apologize for how long it has been since our last update.....we know that we sort of left you at a cliff hanger. Just to update you, Beckham is now out of the hospital. He was in the hospital for less than 24 hours and has not needed to return. His Tacro levels have remained at an acceptable range and he seems to not have been effected at all by his hospital visit.

Since then we visited Iowa City for Beck's check-up. We brought the old bottle of Tacro so that it could be tested. The results came back and they showed that his Tacro was mixed incorrectly and there was almost no Tacro in the bottle. This is such a serious mistake!! We ourselves did not realize how serious this was until Beckham's transplant doctor told us that he had heard of this happening one other time. He said that by the time they checked they boys Tacro level and found out how low it was, it had already permanently destroyed the boys heart.

But enough of the glum, Beckham is doing very well and has been so much fun lately. He is smiling and cooing non-stop. He even has a cold right now and is still just as happy as can be. That is so much different than our experience with colic Gwen. Beckham is also going to be a star beginning next week. Next Tuesday afternoon KCCI Channel 8 news here in Des Moines is coming over to do a little 'feel good' piece on our little man for Thanksgiving. Better start cleaning the house. For those that are not in Des Moines, we will try to tape the special on Beck and place it on our next post.

Much love and thanks,
Nate, Kim, Crazy Gwen, and the Beckmeister

(Gwen is getting ready for next week's Holy War)