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