"Alexander and the Terrible, Horrible, No Good, Very Bad Day"

During the last two weeks much of my time has been spent crouched on the bathroom floor, reading a book to Gwen, and hoping beyond hope that she will inadvertently use the toilet in the process. Some of the time has been successful, and LOTS of the time has been a failure. What have I learned in the process? Well, mainly that potty training is hard, really hard. It's going to take time, lots of time. Good thing that we have lots of books, books that take me back to my childhood, and books that make me smile and remind me of what life is all about. Today I was reminded of one of those books that I recently read to her. It was almost a perfect match for the day that we had today, thus the title of this post. If you haven't read this book, please do. It's a must. In it, Alexander had a day where nothing seems to go right. That is just what happened here. Let me start at the beginning. You'll probably want to sit down. It might take a while......

One thing I love and hate about Nate's occupation is the LONG 12 hour shifts that he works three days (and sometimes nights) a week. Last night was one of his long shifts that left me and the kiddos home alone, which is usually not a problem but an enjoyable adventure, but unfortunately I was hit with a migraine - horrible pain, nausea and vomiting, and blurred vision - at the exact same time (lovely).

After getting the kids to bed and taking some migraine medication, I too went off to bed, but found myself restless and unable to relax because of the constant pounding of my blasted noggin. Around midnight I slowly started to relax, only to be awoken at exactly 12:00 by my alarm clock, blaring to life at top volume, lovingly set by one of my children (how sweet). This, of course, woke up Beckham, reminding him that he was always hungry, and making him demand Pediasure. And after getting him a bottle and tossing and turning for a few more hours, I was finally able to drift off to sleep around 2:30. My slumber was disturbed an hour later as I opened my eyes to my tiny 3 year old, demanding that she needed to sleep with me and I, of course, gave in and pulled her into bed with me, thinking that she would quickly fall back to sleep.

I was definitely WRONG...Gwen had another idea.

After pulling her into bed, Gwen quickly turned over to Beckham (who is in a crib in our room because of his steroid hunger during the night) and yelled for him to wake up, and then began laughing and playing on the bed. I sat her down immediately, explaining that it was "night night" time, only to hear Beckham yelling again and demanding more food (oh joy). I once again filled up a bottle of Pediasure and handed it to him to fill his stomach, but soon found him soaked from head to toe from a 10 lbs diaper (you moms know what I am talking about!). This called for the lights to be turned on, a complete diaper and clothing change for the little guy, and, of course, made Gwen even more hyper and ready to play. Mind you, this was all with my pounding head guiding the way. Yeah! But don't worry, I got Beck changed and Gwen did fall asleep...3 hours later (I should know, I was awake for it!).

When Beck awoke me at 9 AM, I turned to find Nate asleep next to me, He looked so exhausted from his crazy night shift in the ER that I forgot about all my exhaustion (yeah right) and quickly took Beckham downstairs to get him his meds - due a half hour earlier...oops. As I went to give Beck his meds, I noticed that one of the bottles was almost empty and required me taking out the stopper to get the last remaining drops. As I did so, I missed directed my aim and sent a fork piercing into my skin (smooth move Kim). I probably would have screamed out in pain if I hadn't smelled a foul odor and realized that Beckham had not only pooped, but blew out (literally) of his diaper all together. I won't go into further detail, but know that this was the blow out of blow outs that would make almost everyone sick, or make my brothers, Nate's brothers, and Haley (it's true) proud to call Beck their nephew. And with this, there is only one thing that I can do: stick him in the bath.

As I began peeling off Beck's clothes and starting the bath water, I heard my screaming, sleep deprived (I wonder why?) Gwen, come into the bathroom. She continued to scream as I bathed him, during which time I noticed something funny about Beck's left hand. His left pointer finger and much of the back of his hand was deep purple, almost black - from a bruise? from a blood clot? from a broken bone? I don't know - and causing him pain. I quickly grabbed him out of the bath and took him into my bedroom (with the screaming Gwen in tow) to show Nate, who agreed that something was not right and then went downstairs, found my phone, grabbed Gwen some milk to stop her crying, and then called the transplant team to talk about his hand. As I talked to his transplant coordinator about Beckham, Gwen, was silent until I heard a huge wail escape her mouth. I turned, expecting to see her throwing another fit, and found her covered in vomit (are you freaking kidding me?). My brain at this time was about to explode - from both the situation and my migraine - but didn't (whew), so I cleaned up Gwen and her puke.

On the transplant teams advice, I trudged off to the doctor with both kids because Nate had to sleep during the day because of his overnight shift. Once there, both kids lost it - Gwen because she thought the appointment was for her, and Beck because he knows the appointment is for him - and I ended up carrying both of them most of the time (if you do the math right, you will realized that that is almost an extra 60 lbs I was trucking around). I'm sure my arms will be pretty sore tomorrow because the appointment lasted for more than 2 hours so that they doctor could make sure he was not missing anything with Beck. The results are that his finger is not broken, and they could not see a blood clot. It looks like Beck must have injured it at some point when we were not looking. Labs were also drawn and his hemoglobin is 10.5 (no kidding) and his platelets are 44 (lower than I was expecting, but the transplant team was not overly concerned by this).

As I drove home from the doctors I pondered over my crazy morning, looked back at my kiddos who both had a sucker in their mouth, and stopped at a fast food restaurant to get the kids something unhealthy to eat because they had had a hard morning. After ordering and receiving their food, Gwen, of course, lost it because she did not want "french fries," Beck cried because I could not get food back to him fast enough, and I smiled because I knew that when we got home, they were both going to go down for their nap.

It is now night, both kids are in bed, and Nate is home to help me. All seems forgotten. Was it a "Terrible, Horrible, No Good, Very Bad Day?" No....but it was defiantly not my favorite. And in the words of Alexander, "My mom says some days are just like. Even in Australia."

Three/Update/Father's Day

Again, I am trying to shove a whole bunch of info into one post. I guess you could say it is my way of multi-tasking.

First off: 3 was the big number for the week in 3 different ways.

1. Our little Gwen turned 3 this week. Yeah Gwen! I can't even begin to describe how much we love our little girl and how thankful we are to have her in our lives. She has literally been our saving grace with all that we have been through with Beckham.

Some fun facts about Gwen:
1 - She currently weigh's 5 lbs less than Beckham!
2 - Her favorite thing in the world right now is Scooby Doo.
3 - She has not yet mastered the art of potty training, but tries to coach everyone else when they are in the bathroom (sliding books under the door for them to read, continually uplifting them with phrases of "you can do it," and giving them a high 5 and an "alright, you did it!" when they leave the bathroom).

Gwen's anxious anticipation to blow out her candles.

...and she finally gets the chance.

After cake, presents, and playing, this is how Gwen ended up spending much of the night. She actually was not feeling too well, and the excitement of the day wore her out.

We love you Gwen! Happy Birthday!

2. Our next big "three" of the week is a HUGE milestone that we have just conquered.... Beckham has now been out of the hospital for more than 3 weeks! Can you believe it? We have not reached this mile stone since February, and to tell you the truth, WE LOVE IT! Now all we have to do is make it past 6 weeks. It has been almost an entire year since we have done that.

3. Our last "three," or something that includes a three, is that Beckham has reached 30 lbs! I'm not going to lie, 30 lbs is definitely adding more than just much needed weight, for Beck is seriously chubby right now....and serisouly cute. Here is the proof:

How many chins can one kid have? Oh, and yes, that is Desitin on his face again. Seriously, why does this kid feel like it needs to be on his face and not his butt?

On to the "update" portion of this post (are you yawning yet?). Beckham had labs drawn on Thursday which, of course, clotted and needed to be re-drawn on Friday. After 4 finger pokes, and three tubes of blood on Friday, I received a call once again from his home health nurse, letting me know that all of that blood had also clotted. She once again came right back and re-drew Beck's blood, but this time from a vein puncture. The results from that blood showed that his hemoglobin had risen to 9.4 (holy crap...that's basically normal for Beckham!), but his platelets had once again clotted. I am guessing that his platelets are basically normal as well because he stopped bleeding from the vein puncture almost immediately after she took the needle out! Crazy! I can't believe that I have a basically normal baby, but I LOVE it! Let's just hope that he stays healthy and does not catch something that will reverse his progress (not the easiest thing since the sick bug has been running through our house, and Beckham is a walking germ target with the steroids, Tacro, and destruction of his B-cells from the Rituxin).

Last, but not least, HAPPY FATHER'S DAY to my afro wearing (note: the afro was cut off soon after this picture), ridiculously good looking, incredibly dedicated, insanely hilarious, and kind hearted husband. Our kiddos couldn't ask for a better father and I couldn't ask for a better husband. We sure love all of you (even the afro!)

Update/Cardiology appointment/ Zoo visit

My mom called me worried, stating that it had been a long time since my last post, and wondering if we were still doing alright. Her inquiry was one of many, which reminded me how lucky we are to have such wonderful people continually concerned and checking up on the status of our little guy. I do apologize for the lack of posts over the last week (or longer) as I have been procrastinating due to the fact that labs seem to constantly change, and I keep waiting for more info. I have also been unable to post because it seems that every time I sit down to type, I am disturbed every couple of minutes by a little toddler, demanding more food (seriously. I have already gotten up 5 times since I started this post to feed my bottom-less pit). And I should also add that there is a lazy factor in there as well (just being honest!).

First off, we are still home. Woo hoo! This is not only a shock to our family, but to his doctors as well. They were definitely not thinking that Beck would make it this long without another hospital visit. Either did we!

Second, I'll give a Beck update (since I am sure that's what most people are curious about). For now, he is doing fairly well and staying stable. Stable is good! During his labs last week, Beckham's PICC line decided to kick the bucket, spring a leak and have to be removed (he had it for 3 months). What a bitter/sweet thing to happen (bitter because now he will have to have weekly finger pokes, and sweet because now I don't have to deal with the stupid thing!). Labs were still able to be drawn from the blood oozing from the hole where his line went into his arm (which only took 5 minutes to stop bleeding...how nice!), which showed that his hemoglobin had risen to 5.8 (small rise, but we'll take it) and his platelets were at 97 (holy smokes!). The doctors were all very encourage by the lab news, saddened by the PICC line news, but have no plans to have a new PICC line placed back in. Labs were checked again this week and showed that his hemoglobin has risen to 6.7 (yeah!), but his platelets were at 13. I literally felt my heart sink when I heard this news. It took three months to get to the 97, just to have it crash back down again. Good thing that my heart was able to recover the next day when I was told that the 13 was inaccurate (whew). The real number is still unknown, but it is definitely over 13. The lab only counted the platelets that had not clumped, and in order for them to clump in that fashion, he has to have a sufficient amount. The thought is that they are probably still around 97(ish). Cross your fingers!

Beck also had a cardiology appointment this week. The transplant team was very pleased to see the change in his color (still pale, but without the yellow tinge) and also pleased to see his HUGE weight gain. Beckham left the hospital at 23 lbs, and now weights 29 lbs. He is a chunk...and I don't use that term lightly. He also had a ECHO yesterday that showed that his heart is working great and tolerating the high doses of steroids and also his weight gain. Beck's transplant doctor is going to have a chat on Monday with the hem/onc team to see if we can start to lower his steroid dose. The plan for now is to be on the steroids for 8 weeks (he's been on them for almost 4 weeks), but we are hoping that this 8 weeks includes his steroid taper. Here's hoping! For now we will not see the transplant team until July.

This how I found Beck after his cardiology appointment. Do you see the size of his cheeks? Such a steroid face.

Lastly, we made a break out of the house to visit the Des Moines zoo last week. The zoo sets aside one night a year for what they call "Dream Night," which is a night just for children with serious and chronic illnesses and their families. All I can say is that it was awesome. The zoo provided food, entertainment, crafts, opportunities to feed the animals (including a giraffe), gifts for the kids, and many more. Beckham was pretty grumpy through out the entire thing, but Gwen was in heaven. It w

Beck spent most of the night screaming in the stroller (except when he was eating!).

Gwen loved the princesses!

Gwen with Nate's sister Haley. We miss you Haley. Hurry back!

Still home to update!

After a whole week (and one day), Beck is still home (knock-on-wood) and is doing as well as can be expected, given the fact that he is still very ill. Since February, Beckham, has not been out of the hospital for more than two weeks. We are sure wanting to break that record. Wouldn't it be great?

Beck and Gwen out for a walk. Do you see him giving one of his rare semi-smiles?

Since being home we have had a great time keeping ourselves busy with lots of appointments for Beck, visits from our families, long walks outside in the beautiful weather, and trying desperately to keep 'Captain Angry' happy and eating. Beckham's steroid rage is in full force, and along with that, his appetite has also kicked into full gear. Beckham now has at least 3-5 8oz bottles of Pediasure a day, along with two during the nights (you can only image how many diapers we go through), and 3-5 meals. When he is not cursing the world, he is screaming for the fridge to be opened, or asking that he can be in his high chair to eat. Truthfully, it's been great to see his appetite back, as opposed to his complete appetite loss when his hemoglobin was so low. His Buddah belly is back, along with his adorable chubby cheeks. We can't help but smile every time we see....even if it is very hard to make him smile in return.

WARNING: The below picture is a little brutal!

Taken during Beckham's first haircut (despite his expression, he was actually really good during it). We needed to get rid of the 'Donald Trump' look (the long, comb-forward hairdo) so we gave him a nice buzz cut. As you can see, he was still bleeding from when he hit his mouth almost two days before. Can you see the color of his blood? Looks like Koolaid right?

Beck's hemoglobin has remained in the 5 range, with the highest being 5.5. His platelets were at 47 last week (I know, don't fall off your chair) and continue to climb. What thrilling news this is for us....now it' his red blood cells turn. His low hemoglobin still makes him quite weak and he prefers to be held much of the time. He also tires very easily (yeah, my heart breaks when I hear him huffing and puffing to climb the stairs) and needs to take frequent breaks. Of course he still finds plenty of time to torment his sister, color on the walls, and climb on the table.

Lot's of meds to add to his list. At this time last year he was down to two meds.

That's it in a nut shell. We will continue to take it day by day, and relish in the fact that we are home and loving it. Thank you for all of those that continue to reach out to our little family. We feel so blessed to have some many wonderful, kind hearted friends and family.

Much love!
-Beckham & Co.