Update 11/29/08

Guess what? Beck is still at home! Shocked? We are also. Since Beckham's release from the hospital on the 11/16, we have not had to be re-admitted. The good news is that we have not even come close to it (knock-on-wood). More good news is that he has only vomited once since being home and his dirty diapers are also less (less to him is only 7 a day instead of 12-15...yeah, we change a lot of crap in our house). And the best news of all is that we have our old Beckham back. Our sick, tired, skinny, little guy has been replaced with a happy, hungry (I mean hungry), ball of energy. What a delight it is to have him back to his old self. We sure love this little guy to pieces. While he continues to heal and gain more energy, we are still aware that his condition is still quiet serious. Beckham does not understand this and wants nothing more than to be thrown around and tackled by Nate. Soon, we keep telling ourselves. Soon.

Can't you tell his appetite is back?

Since being home, Beckham finally tested positive for something. CMV. Bummer. This is his third time having this virus. Hopefully the third time is the charm. Beck is now back on Valcyte and will be for six months. Before he was only on it for a period of three months, but his transplant doctor thinks that it would be best to go longer and hopefully get rid of this virus for good. I know the question you are all thinking: "Could the CMV be the underlining cause for all that has happened to Beckham?" and the answer is yes, no, and maybe. I'll explain. Yes, it is the cause for the sores in his colon which caused the bloody stools. No, it is not the cause for his stroke, but maybe it could be what triggered him in the first place to get sick and start his downward spiral (because he did have CMV in the summer). Does that make sense? Probably not...but it doesn't make sense to us as well. We still have a lot of theories and unanswered questions.

Beck's meds went from this.....

to this.

As for what is going on in his brain, we are in the same boat of unanswered questions. Beckham and I visited the Neurology doctor in Iowa City. For the most part she is extremely pleased with his progress. She loves the fact that he is eating, speaking, moving again, and not vomiting. However, she is a little nervous about the fact that he is not walking, that he chokes on fluid, and that the veins on the left side of his body are more noticeable. I'm not sure what to think about the walking thing. Beckham has never technically "walked." Before his stroke he would take as much as 10 steps, but now he will not take more than two. I personally think that Beckham could walk if he tried, but he is a quite stubborn (just like his daddy). He definitely is weakend though. I don't know what to think about the choking on fluid thing either. Before his stroke he would take a bottle, a sippy cut, a straw, and even a cup. Now he will only take a bottle. Every time he tries anything else he chokes and coughs. Lastly, the noticeable vein thing does worry me. I had never noticed this before until she pointed it out (This is great. Just another thing to keep me up at night). She thinks what could be happening is called Hydrocephalus - accumulation of water on the brain. Beck's clots might be responding well to the blood thinners, but the area around his clot could still be building up fluid - and since his clot is on the left side of his brain, it's making his veins more prominent on the left side of his body. We will not know for sure if this is the case until we do another MRI. That will happen in two weeks or so along with an MRV and retinal exam. One thing I can say that will bring some comfort is that I know that Beck's neurologist thinks that he is stable and improving. She is a VERY careful doctor and I know that she would not have let us leave the hospital today if she did not believe that. I'm okay with that.

We will have many more follow-ups with hematology, cardiology, GI, and neurology soon. I can't wait until we can finally say that Beckham is "out of the woods" and on his way to solid ground. We will get there.

-Beckham & Co.

Jake, the boy who gave Beckham his heart...

Despite two months of up and downs, Beckham is doing very well at home and very happy to be here. The night we came home we found a very special letter in our mail pile. It was from Beckham's donor family, the Campbell family from New York state. We wrote an anonymous letter to them a couple of months ago sharing our gratitude for their selfless decision. We found out that through the power of 'google' that they have been following Beckham's journey since January and were as excited to hear from us as we were from them. We have now wrote back and forth with the family and I asked if I could tell Jake's story.

I am going to relay the story of their son in their own words, taken from a paragraph in the letter that they sent to our family.

(Baby Jake)

"Jake was born on May 25th, 2007. Despite being on the small side at birth (6 pounds, 2 ounces), he was perfectly healthy. Ben, who was 21 months at the time, was thrilled to have a baby brother. Everything was right with the world, as they say. By the time Jake was about 3 weeks old, he was developing reflux, which made most of the time he was with us very uncomfortable for him. Holly, who was nursing him, spent many nights awake with him. Most of the time he would only sleep if he was being held, or if we were in the car; he was so uncomfortable on his back. Despite this, we have many wonderful memories. He had the most amazing smile. We spent one evening playing hide and go seek with Ben, and Jake popped up on the couch, smiling away. We also remember a wonderful weekend at a family picnic, when many lives were touched by his adorable smile. He loved it when his mommy sang to him. Just before we lost him we went to an amusement park in Pennsylvania, and he was so good that day. That night and the next he was able to sleep six hours straight in his bassinet. We thought we were finally turning the corner. Then, on August 13th, Andy put him down to make a bottle while Holly was at school for a function. When he returned, Jake wasn't breathing. A heroic effort was made, first by Andy, then the paramedics. They were able to get his heart beating again, and put him on a respirator. He was flown to Strong Memorial Hospital in Rochester, and when we arrived the doctors told us the terrible news. His brain was completely unresponsive. We held vigil through that night, and another CAT scan the next day told us the same thing. On the 15th, two days after he stopped breathing, our "little star" was declared officially brain dead. It was with some difficulty that we decided to donate his heart, which meant that we would have to say good bye to him while he was still on life support. That was hard for us, but we knew that it was the best possible thing to do, not only for the family that his heart would soon reside with, but for ourselves, knowing we could make something positive from the most terrible thing imaginable. In the end his corneas went to two different individuals, restoring their sight, and you little Beckham received Jake's heart." - The Campbell Family

After a very difficult 2 months, in which we have hardly left the hospital, it is important for us to remember the sacrifice that was made so we have this time with our little Beckham.

It was great to read about the Campbell family and their two beautiful children, older brother Ben and baby Alex who was born just this last August. We have thanked them many times since our correspondence began, if you would like to do the same you can use the comments section of the blog.

Update 11/17/08

Another quick post to let you all know that Beckham is home. I didn't want to do an update until we had been home for a full 24 hours (I was scared that I would jinx it) and so far little Beck is doing great. He is SO happy to be home. We are still dealing with some GI issues, but we are working really hard to keep Beck hydrated. Lets all cross our fingers that we can stay home. We'll write more later. Thanks again for all of the continued prayers, kind words, thoughts, and support for our little family. We can't even begin to express our gratitude.

-The whole family Scads

Update 11/16/08

We're sorry for the lack of posts these last couple of days. We were waiting until we had more news to share. Unfortunately, not much has changed.

We are still here at the U of I hospital. Beck's test results have started to come back (he has literally had hundreds of tests run) and each one has been negative. We never thought that it would be frustrating to get a negative result on a test, but it is! We still have no idea what is wrong with our little guy. The biopsy's that they took from his colon have also come back negative for bacteria and virus. He still has the bleeding sores in his colon, but he is no longer passing large clots of blood in his stool. They are now only streaked with blood, and some have no blood at all (this is a good sign). Because of this Beckham has been allowed to eat again. His diarrhea has lessened some and he has not vomited since he was transferred to this hospital. If his diarrhea continues with blood then they will do an endoscopy on Monday. He will have to be put completely under for this procedure.

Some great news is that Beckham's clots are shrinking. They used a dopler to check the spots where he has clots in his leg, neck and arm and only his neck still has a clot. The clot in his neck is shrinking though. They have not taken another look at his brain, but they do not feel that is necessary at this point because he is acting so well.

We have been told that we will probably never know what is has been ailing Beckham (not very comforting). They think that whatever has been raging inside his body for the last couple of months will clear up on it's own (eventually). Beckham is acting like his happy self. He is eating, drinking, and playing non stop. He even had enough energy yesterday to take a step from Nate to my arms. He is definatly weakend and it will take some time for him to regain his strength. We are hoping to be able to take him home soon. We sure miss our Gwen and hope to have her back in our home soon also.

Thank you for your continued prayers for our little guy, his doctors, and for the rest of us. We have truly felt the power for them. We hope to update the blog again soon with anything other than blood clots, puke, and poop. Soon!

-Beck and family

U of I (11/12/2008)

Where to begin? As previously passed on we had spent the last few days at Blank Children's Hospital only to be transferred back to University of Iowa Hospital yesterday afternoon.

Beckham has had bloody stools that began late Sunday night. Kim told the resident at Blank that night, but he told her it was more likely to be 'red sauce' from the spaghetti that he ate that afternoon. They progressed through the night and by the next morning it was more than obvious they were blood clots. That or an old Italian pasta recipe calling for erythrocytes in the sauce. Once assessed by GI it was determined because of the complexity of Beckham's history over the last weeks and even the last year that University of Iowa would be better equipped to deal with these new problems.

Over the last six weeks Beckham has been in two different hospitals and eight different hospital rooms with over four of the last six weeks being spent overnight in the medical centers. He has been seen by urology, ENT, GI, peds neurology, neuro surgery, adult stroke team, transplant team, peds cardiology, radiology, peds hematologists, and various intensivits/ hospitalists. He even topped it off with a 2 hours ambulance ride over here yesterday.

Today they start diagnostic testing on his colon which consisted of sending stool to lab, blood draws, an abdominal x-ray, an abdominal ultra-sound, and topped off with a colonoscopy (we are sure he is attempting to suppress memories of that last procedure - the colonoscopist didn't even take him to dinner first). The colonoscopy revealed that he has sores throughout his colon and through a biopsy of intestinal tissue they will try and diagnosis if the root cause is ischemia due to clotting or some sort of viral/bacterial issue.

He was miserable all day, but things improved slightly as they did remove his Foley catheter and let him start drinking clear liquids late tonight.

I am sure there is more to tell, but our state of mind is less than clear these days. It is much like Gallagher gave our brains the same treatment his gives his watermelons. (For those that don't know Gallagher is a comedian that smashes watermelons with a sledgehammer as the grand finale of his act...keep up now)

Oh, and Gwen is in Utah with Gwanma and 'Papa Scadlock...my mom came last night and went back to Salt Lake City this morning with the little one.

I think that is all for now, hopefully we will have more (and better) news tomorrow.

(There is a Chinese proverb that says "A dog in desperation will leap over a wall". Well, a baby in desperation will suck down pedialyte as if it were the nectar given to us by the Gods)

Back to University of Iowa hospital...

Just a quick update...

...due to bloody & frequent stools, along with vomiting and lethargy, Beckham has been transferred back to University of Iowa hospital. Beckham and I (dad) went with came over by squad this afternoon.

Updates will follow as we know more.

Update 11/8/08

We're home.....we're back in the hospital.....we're home.....and back in again....

The above says it all. On Thursday we were surprised when we were offered the option to be released from the U of I hospital. Naturally, Nate and I jumped at the chance (silly us) and we headed out. We arrived at home around 6:00 PM, and by 8:00 PM Beck was vomiting. After a couple of hours of this we called the Pediatric Neurologist on call at the U of I and he suggested that we go to the ER and get a CT scan. The CT scan showed that his brain bleed and clot are stable (whew) and that the edema around the bleed has lessened. We were released and went home to sleep in our beds.

Beck's home health nurse came the next day and when she weighed Beckham my heart sank. He now weighs a whopping 19.5 lbs. That is 3 1/2 lbs less than 6 weeks ago. Beckham looks so skinny. It breaks my heart!

Later that day, Beck started vomiting again and had 10-12 dirty diapers. His diapers were SO stinky. I am surprised that our house didn't rot because of the stench! After talking to Iowa City we all decided that Beck has to be back in the hospital on IV fluids. They are running all sorts of tests on him again and we will go from there.

We are grateful that we are at least back at the hospital in Des Moines and able to go home at certain times. I am hopeful to have Beck back in our home very soon. We are honestly all doing pretty well considering all of the events of the last 6 weeks. I am sure that it is because of your prayers. Thank you.

Just a quick shout out to my friend Heather (and the rest of her family) before I end this post. Heather lives in Iowa City and she has done so much for our family. I don't know how to thank her enough. We love you so much O'brien family. You are the best!

We will continue to keep you posted on anything.

-Kim, Nate, Gwen & Beckham

Update 11/4/08

We made the big move from the PICU to the floor today. Beck's condition is still considered serious, but he does not require the one on one care from the PICU staff. We are grateful to not be PICU status but we will miss all of the staff in that unit. I can't tell you how much we love the staff in the PICU. The care he received was incredible, but the love that was shown to Beckham is indescribable. I had numerous nurses comment that they went home at night and worried about our little guy. Isn't that sweet? Thank you so much PICU staff. We plan on only seeing you again as visitors and not patients!

I was hoping that Beck's transfer to the floor would mean that he would finally earn the status of "out of the woods," but alas, it does not. We were told that Beck will not be out of the woods until his clots have fully dissolved and his bleed has disappeared. This can take anywhere from 6-8 weeks with the blood thinners. We will not need to stay in the hospital for the entire 6-8 weeks. They are hoping to send us home this weekend (we'll see). This makes me a little nervous to go home with a seriously ill baby and be 2 hours away from his many doctors. I guess that you could say that I am going to be a nervous wreck for the next couple of months (I guess that is not anything new!).

Thank you so much to those from church who came and cleaned and disinfected our home. It means so much to know that we will be coming home to a sanitized place. Now all we will need to worry about is padding our entire house down. Beckham has always had a habit of banging his head on everything as a form of communication. He has tried to continue this form of communication here in the hospital (to the doctors horror, because that is just what a child with brain trauma should be doing) and because of it he has had to get special bumpers in his crib. We do not want to dislodge any of his clots because of the risk of them going farther into his brain, into his heart, or into his lungs.

Beckham will really need to prove himself during the rest of the week so that he can show that he is well enought to go home. During the next couple of days I am going to be taught to give shots (oh joy). Beckham's Lovenox is a shot that is given twice a day and when we go home I will be incharge of his medication care again.

I know we have mentioned this numerous times, but we can't thank you enough for all that has been done on behalf of our family. Your prayers and faith are truly blessing our sweet little boy. Please continue to pray for him.

-Beck & Fam

Update 11/3/08

I have decided to take over updating the blog for the time being (this is Kim by-the-way). Nate and Gwen have gone back to Des Moines for a couple of days so that Nate can attend school and Gwen can have some sanity. Nate's mom is still here with us (thank you Brenda, we could not do this without you) and is on full time Gwen duty. I am sure that is not an easy job right now because Gwen is really struggling with this hospital stay. She has done remarkably well with the past hospital visits, but I think that she has had enough and she needs her family back together.

Warning: This post will not be as medically correct as the posts that Nate has written. I apologize in advance.

Now onto Beck's condition. He had a few ups and downs this weekend, but was very stable for the most part. On Friday he needed to be sedated again for a test and that required quite a bit of medication (of course). His IV also went bad and he had to be poked again for another one. This new IV also went bad later that day and he had to be poked again. Even with the 2 new IV's Beckham was extremely happy and alert.

Saturday started out much the same as Friday, with a happy, active Beckham. His newest IV went bad again and a new one was placed in him. During the second half of the day I walked over to his crib and noticed that his arm looked a little purple and swollen(it was the arm with the PIC line). His nurse and doctors agreed with me, but they wanted me to elevate it and give it a little time. That did not work and a couple of hours later it had doubled in size and a pulse could not be felt without a Doppler. Beck's PICC line had to be taken out immediately. The swelling and purple color in his arm was caused by Venus Thrombosis. It looks like he might have another clot in his arm as well. Poor kiddo! That is 3 IV's & 1 PICC line in 2 days! His loss of PICC line opened up the problem with his Heparin drip. Heparin has to be given by IV, and blood has to be drawn (a lot of blood) every 4 hours to check his Heparin levels. They were drawing blood from his PICC line so that he did not need to be poke numerous times a day. The doctors did not want to take the chance of putting another PICC line back in him and cause more clots, so they decided to change him from Heparin to Lovenox. Lovenox was a hard switch because it has to be given by a shot twice a day, it is not as effective as Heprin, and it only has an 80% reversibility rate. It is also not given to treat Venus Thrombosis in the brain. All these things aside, Lovenox is the best option. We will do what is best for Beck.

Sunday wasn't the best day. Beck's arm was so huge and purple. He could not lift it or even have it touched. He was given Morphine for the pain. He was also very lethargic and sleepy during the day. By night time I was getting quite worried about him and I had the doctors called in. They agreed that he did not look great and they ordered a CT scan. The scan showed that the bleed was not any larger (whew) , but their was more edema in the brain (which was to be expected). This was actually comforting news.

Beck's arm after the PICC line was taken out.

Today, Beck was still tired, but a little more active then Sunday. He also had 2 vomiting episodes. The doctors are not extremely worried about this because he has a lot of pressure in his head that will cause vomiting. They continue to use the phrase "not out of the woods" and I can't wait for him to finally be in the clearing.

As for the cause of all of this...the doctors are still not sure. We are still waiting on the test results for clotting and platelet disorders. We are hoping that those are both negative. Beck's platelets are still low, but somewhat stable.

Thank you over and over again for all of your prayers, fasting, thoughts and comments for our Beckham and the rest of our family. We can't tell you how much it means to us. We truly feel carried during this time. Please continue to pray for Beckham. He is so tough. The doctors have so much faith that he will pull through this. We feel the same way. He still has a long way to go.

Thanks again.
-Kim, Nate, Gwen & Beck

11/1/2008

I was not going to do an update today, but it is 4:30 in the morning and about three Beckham decided we were done sleeping for the night. I thought after him not taking a nap today that sleep would come easy, but apparently he did not get the memo. I can't really get too mad at him though. He is laying against my chest acting calm and restful, but about every 2 to 3 minutes sits straight up, shouts out "DAAAADDY!" and ends the quick burst with an emphatic kiss. How do you really get upset about that?

The plan for now is to keep him on the heparin and there really were not any significant changes in his care plan. All of today's events included IV sticks. Venous access has been a difficulty since we were at Blank and has continued here at Iowa City. In the last couple weeks he has probably been stuck around 30 times with 6 or 7 of those being successful access attempts. That is with the big guns usually being called in (e.g. Lifeflight nurses, nurse practitioners, etc.).

Beckham did have another CT scan this morning which showed that the bleed in his head has become bigger, but they can't really do anything about it at this time. Just another scary fact to mentally digest.

Tomorrow (today) we will post some pictures of the kids in their Halloween costumes. Beckham, in true Beckham fashion, pooped through the leg of his skunk outfit fairly quickly after changing into the black and white striped furry ball of an outfit. Oh, the irony.

Well, the nurses have offered to take him for a wagon ride now...I can hear him chastising them down the hall, but I'm going to take it as my queue to try and get a bit of sleep.

Goodnight (morning?)

Beckham & Fam

10/30/2008

(Today Beck offered raspberries for all)

It seems old to describe the day as a roller coaster after a few straight entries doing just that so we will have to describe today as an elevator, or maybe a teenage girl's mood swing. I could also go with a swing, teeter totter, pendulum, or stock market (well at least the stock market used to go up and down).

This morning Beckham was amazing. They transfused a unit of red blood cells and he was almost goofy giving kisses and teasing Kim and I with our phones.

This was followed up with a trip to MRI. This is supposed to be a simple process of diagnostics, but Beckham (as we know) is anything but simple. For the MRI he needed to be sedated so that he would be still through the test. So the nurse administered 0.5 of Versed & 0.5 of Morphine...not a lot, but often times enough to cause the desired sedative effect. Well it didn't work that way. In fact the desired effect wasn't achieved until over 2 hours later along with another 1 of Versed, 0.5 of Morphine, a 35 mcg bolus of Propofol, and then another 175 mcg of Propofol during a continuous drip. Even this didn't knock him out for the day, in fact he was already come out of it at the end of the MRI before the drip was done, but it worked just long enough. He doesn't quite make anything easy.

When we got back he was stoned and funny. Not sleepy, but groggy. Had I been a better father I would have found him a black light, a lava lamp, and Pink Floyd's Dark Side of the Moon. Next time.

The test revealed both good and bad results (did you expect different?). The good - It appears that blood is getting to parts of the brain that were previously blocked off. The bad - Other parts of the brain seem to be experiencing clotting and edema.

Another downer on the day was the discovery of other clots through his body. He has some clots in the veins of his right leg, which was expected. But then he has a clot in his right internal jugular vein. Fortunately the treatment for both of these is the heparin that is currently being infused. Unfortunately with the jugular clot there is always the risk of a pulmonary embolism.

Today in addition to the efforts of hematology, cardiology, and neurology Beckham had a visit by ENT. Because of his frequent ear infections they want to put tubes in his ears. We also want tubes in his ears, but not quite sure when to throw those in...I really think it should be part of a package deal. SALE! SALE! SALE! BUY A NEW HEART & THROMBOSIS TREATMENT - GET AN ENT CONSULT AND TUBES IN YOUR EARS FOR FREE! FREE! FREE! ACT NOW AND WE MAY JUST THROW IN THE POST-OP ANTIBIOTIC TREATMENT!!!

Despite the ups and downs it was really a lot of fun to have moments with our 'old' Beckham today. There is a long way to go, but we are in good hands and I really believe things are headed in the right direction.

Once again, thank you to all.

Beck, Gwen, Kim, & Nate

10/29/2008

Today Beckham had an awesome morning followed by another scary afternoon.

This morning Beckham woke up happy and ready to play. He smiled and sang while bobbing to songs by his homebody "Emmo". It was fun to see a little bit of our Beckham back.

This afternoon he began vomiting. The first time we didn't think much of it, but then it happened again...and then again. So it was decided to take him for another CT Scan. The scan showed a new bleed in the right hemisphere of his brain, close to the originally origin of thrombosis. The physicians did not indicate that these new developments translate to a worsened condition, but a different condition.

While the situation is scary we still are hopeful that we will be able to get through all this and eventually get our old Beckham back. One neurologist was quick to point out this morning that 'we aren't out of the woods just yet', but we are just happy to not be tumbling down the mountain.

Things really are a roller coaster here.

While having his happy morning he decided to stand a little bit against the crib railings. That is the first time since this all happened with the neurological issues. While doing so he definitely favored his right leg. The first night we were in the PICU Beckham had a femoral central line inserted. Well for reasons still unknown it clotted immediately causing venous back flow. His right leg became very discolored and swollen. The line was removed, but he is still recovering from the trauma. Below is a picture that shows the difference between his right and left leg:

(As you can see there is definite size and color discrepancies between the two legs)

Oh, I'd like to thank Karin Dance for pointing out my mental deficiencies while dating the last two blog entries. The dates have been fixed, but in reality the deficiencies will always remain.

And again, thank you everybody for your thoughts, prayers, and kind words at this time. They are much appreciated.

Nate, Kim, Gwen, and Becks

Tomorrow there is a follow up MRI scheduled to more specifically assess and evaluate the efficacy of the chosen therapies. Please keep our little guy in your prayers.

10/28/2008

(This is another pic taken just a few hours before the stroke)

While our world still seems to be spinning quicker than usual things were a little better today. Beckham was more alert and we were able to experience some of his awesome personality between his naps of exhaustion. He used a few of his favorite words, "daddy" - "bubbles" - "Elmo", and he began eating (drinking) again.

We had talks with the different specialty physicians today and each had different things to say about his condition. The hematology team is really focusing on blood (as hematology does) to be sent out for testing. They are looking to see if he has any sort of clotting disorder. During our converstation many rare disorders were discussed, but we are in wait and see mode. His platelets had a slight recovery today, which should help immediately with the brain bleed, but we still are not sure why the thrombocytopenia exists in the first place. Not sure why the clotting does either. (For those that don't know it is a really strange combo to have clotting issues along with low platelets)

The neurology team is happy with the progress that he has made so far. They plan on continuing with the heparin drip to break down existing thrombi while preventing new clots from forming. They have also started him on Keppra, an anti-convulsant, to increase his brain's seizure threshold. He still has some frightening moments when he seems like he is not going to respond to stimuli, but he has yet to seize since last night.

Interestingly enough, his heart has been golden through this whole process and seems to be the least of our current worries.

I need to shout out a huge "Thank You" to the Nursing Students in the State of Iowa. For those that don't know, I am a nursing student and will be graduating with a BSN in Decemember (well if Beck stops getting hospitalized so I can go to school). Over the last year I have served on the Iowa Association of Nursing Students Board of Directors as the Public Relations Director. This Monday and Tuesday was the huge convention that we have been planning as a board for nearly 600 of Iowa's nursing students from all over the state. It happened to be held in Coralville IA, adjacent to Iowa City so I was already going to be here this week even if this hadn't happened with Beckham. Well I was part of the planning, but I didn't make the first day or most of the second day of the conference because my time was better spent with Becks. Because his condition improved I did go over to be part of the ending meeting of the convention if for no other reason than to have a quick break from the hospital. Well I found out that they had done a fundraiser in Beckham's honor and hundreds of attendees, most of whom I had never met before donated to our family. All I can say is thank you so much to everybody there and thank you to my fellow Board Members (well ex-Board Members, part of the annual convention is voting in a new Board). Thank you all.

Also, my parents flew in from Utah last night and Gwen couldn't be happier playing with Gwamma and Papa. It is a relief to have a situation in which Gwen can get the attention she deserves.

Again thank you for your thoughts and prayers, we know they are helping.

The Beckham Bunch

Update 10/27/2008

(Beckham resting around noon today, he has spent most of his time sleeping since last night)

Today we learned that Beckham was seizing because he was having a stroke. There is a bleed at the site of the clot and that was the causative factor of yesterday's seizure activity.

Tonight he had another seizure episode (around 9pm) in which again became unresponsive to environment and his eyes turned into a left fixed gaze. Also, like yesterday Ativan was used to stop symptoms. He is now sleeping heavily as is common after a seizure.

As for what to do next nobody knows the right answer. Heparin is an option, but because of his low platelet count it could increase bleeding. Not giving heparin is an option, but despite taking away the risk of bleeding you are now risking further thrombosis (clotting). Because of the location of the bleed surgery is not an option.

Decisions are made in a collaborative effort between the intensivists, pediatric neurologists, pediatric hematologists, and his cardiologists.

As for Kim and I the only thing that compares in how difficult it is to watch Beckham go through this is what we watched him go through the first 16 days of his life. This is a close second.

We can only ask that you keep him in your thoughts and prayers. Also keep his healthy care providers in mind as you pray for they face many difficult decisions concerning is route of care.

It is difficult not to have our little man entertain us with his contagious laugh and smile that are available anytime of day when he is healthy.

Again, we will try and keep you updated. We understand that those who know Beckham love him as much as we do.

Beckham & Co.

Beckham back in the PICU (10/26-27/2008)

(This picture was taken just an hour or so before he had the seizure, he has decided to take daddy's hat for his own. Daddy is happy for him to have it)

UPDATE: They have decided to go with the heparin therapy and infuse platelets to combat the thrombocytopenia he is been going up against.

Being displaced from Beckham's room as they insert a central line catheter and unable to relax I've decided to use 'blogger' as a temporary mental release and update everybody to our last 5 hours. Today is his first time back in the University of Iowa PICU since transplantation.

When Kim returned to Beckham's room after finishing the update below this one she found Beckham unresponsive to verbal or physical stimuli despite normal vital signs. She got a nurse and called me. Fortunately I was already in Iowa City working on a conference for Iowa nursing students.

When I arrived at the hospital I found Beckham in a similar state. His pupils reacted poorly and eyes weren't assimilated. The right eye looked straight forward while his left eyed strayed left. He was given Ativan and Benadryl and began to move again after about 15 minutes. After a while longer he again responded to physical stimuli and even began to move around a little bit without being prompted to do so.

At this time a head CT was ordered and the staff called the PICU for a room. I went with Beckham and the healthcare providers to the CT. There he even opened his eyes a little and by the time we got to the PICU he had said 'daddy' and his favorite word, 'bubbles'. Though his actions were still sluggish and he would 'phase out' periodically. The next step was MRI, where he became so active they had to snow him with Morphine and Versed for him to be still enough for the images to get done.

So what is going on? After pediatric neurology looked at both the CT and MRI they've determined that Beckham has a right-sided venous thrombosis (a blood clot on the right side of his brain in the veins). What caused all this scare in the first place was likely a seizure resulting from the aforementioned clot. For now the treatment will be heparin and close monitoring. Hopefully things were caught before any long term damage was done, though it is too early to tell. If the Heparin works than we could possibly avoid any need for surgery.

One thing that brings all the pieces together is that this could be the cause of the uncontrolled vomiting over the last three weeks or so. Every time we seemed close to solving the puzzle of Beckham's ailment we would come up short. This recent diagnosis would override those shortcoming as an 'umbrella' answer to his symptoms.

As for the rest the family? Well we are frazzled, but relieved to have a diagnosis at the same time.

We will try and update any future chages or events.

Thank you to everybody offering their prayers and support. Our Ward is holding a special Fast for him today (10/27).

Beckham & Co.

Update 10/26/08

Greetings from Iowa City. Yup...still here! Yup...Beck is still sick. And yup...we still have no idea why! I guess that you could say that I am feeling a little frazzled at the moment.

We came up here on Friday (like the below post said) and the Urologist literally took one look at Beck and said that he needed to be admitted because he is "a sick baby." Beck has continued to stay a "sick baby" since then. His vomiting is continuing to get worse and his weight dropped from the 25% for his age to the 7%. He has lost so much weight that he has gone down a diaper size (so sad). Nate and Gwen have joined us up here and on top of it all, Gwen also started vomiting (lovely). Her vomiting lasted for about 24 hours. She is doing much better. I was hoping that her vomiting was a good sign and showed that maybe all Beck has is a stomach bug. I kind of doubt that is the case now.

Beck has had test after test and all of them seem to come back negative for anything. His heart also looks great. The doctors are seriously baffled at what is going on with him. Hmm...that makes two of us! We are still waiting on CMV and EBV (Mono) results to come back. I really hope that both of those are negative as well. Tomorrow more testing will be done. Let's all hope and pray that we can get to the bottom of this mystery soon and that it won't be anything serious.

On a happy note, we have seen so many doctors and nurses who took care of Beckham before and after his transplant and they are blown away at how good he looks. It is so bitter/sweet being back here. We love this hospital and the care we recieve, but it also brings back a lot of scarry memories.

We will continue to keep you posted on anything. Thanks again for all of your prayers on his behalf...he sure needs them!

-Kim

Quick Update 10/24

Just to let you know Kim and Beckham are now in Iowa City. He had a previous appointment there with Urology so Blank discharged us and those two went east immediately after. They were supposed to come home tonight, but the Docs at U of Iowa weren't comfortable sending out a sick Beckham so they admitted him.

Now we are just waiting, and praying, to figure out what is going on so we can get on with things...we'll let you know if we learn anything.

Update 10/22/08

So here we are back in the hospital again. That's 3 times in the last 3 weeks. We should be getting close to breaking a record.

Beck started throwing up blood last night and I immediately took him to the ER. Luckily Nate was already at the hospital working and he met me right when I got there. It is embarrassing how well I know the ER rooms. There are signs inside the rooms that I have memorized on both the English and Spanish side...and I don't even speak Spanish! Yeah, obviously we have spent way too much time there!

Anyway, once in the ER it took try after try to get an IV in him. Pediatric life flight was out and they had to call adult life flight to finally get his IV in. One thing that's for sure is that it never gets easier to watch your child get poked over and over again. You would think that I would be used to it by now, but I am not and I want to cry every time. Beck looks like a pin cushion. He has bruises everywhere from needle holes.

Anyway again, it could not be determined in the ER what was wrong with him. His infection levels came back elevated (probably from his UTI), and his platelet levels came back even lower than when we were in the hospital last week. They decided to admit him and get to the bottom of this mystery. Today was just a frustrating as last night. Beck threw up over and over again and looks horrible. He has no appetite and is steadily loosing weight. They have decided to keep us in the hospital until they figure out what is wrong with him.

Beck's test results came back from his test on Friday and they showed that he does have a urinary reflux that will most likely need to be fixed surgically (darn it!). This is probably what caused his UTI and will probably cause more in the future if it is not fixed. We are still planning on keeping Beck's urology appointment on Friday in Iowa City. If he is still in the hospital on Friday than we might have to go up to the U of I hospital as patients and continue our care there.

I think that is all of our latest news. I promise that one of these days I will update the blog with happy news. It's coming soon, I can just feel it!

Please keep little Beckham in your prayers. He has a whole bunch more lab tests tomorrow. Lets pray that they will only have to poke him once to get all of the blood they need for his labs. Lets also pray for an answer to what is going on with our little guy!

Thanks for all of your continued support and love for all of us!
-Kim, Nate, Gwen & Beckham

Update 10/21/08

First off, we are home. Sorry to leave everyone on a cliff hanger. Beckham's vomiting stopped (for the time being) and we were sent home. Two new meds have now been added to his daily routine. One of the meds we have to give 4 times a day (even at 3:00 AM!). I have been so spoiled since Beck's transplant, that I have only had to give him the meds that are once of twice a day. I guess I was due for a hard one.

Beckham had a pretty stable week since returning home from the hospital, but as soon as the weekend began his vomiting started again. Bummer! I am so sick of puke (I am sure Beck is also)! It was not enough puke that I felt that we had to return to the hospital, but still frustrating none-the-less. Beck also has almost no appetite. I have been trying really hard to feed him and he just looks at the food like it is something foreign. I am not going to give up though!

I took Beck to the dentist yesterday because his gum's are extremely swollen and bleeding. The dentist diagnosed him with Herpetic Gingivostomatitis (wow, what a word!). It was explained to me that everyone gets it in their life but does not really notice it. Because Beck is immuno suppressed it has hit him harder. He had a low grade fever for a couple of day, swollen bleeding gum's, and mouth sores. We are hoping that it will run it's course without much excess problems.

The last thing we have to report on Beck is that I took him in for a test at the hospital last Friday. This test was to check for urinary reflux (to see if he will be susceptible for more UTI's). We are also headed to Iowa City this Friday for a Urology appointment. This is for surgery on his hydro-seals and his circumcision. We are also going to discuss the issue with his UTI from last week. Poor little Beck. On top of everything else he is going through he has to have his male organs poked, prodded, and operated on. This kid just can't catch a break.

I know that things have been a little frustrating lately for our little guy, but in spite of it all we know how blessed we are. Beck may get sick a lot, but he is a healthy, thriving, strong little baby. He has so much life and fight in him. We knew that the road after transplant would be a hard one, but it is also so much sweeter than we anticipated.

Thank you all for your prayers and kind words of encouragement. They mean so much to our little family.

Update 10/15/08

The results from all of Beckham's tests came back (which were a lot!) and the culprit for his illness is a UTI. This makes sense because a UTI can have all sorts of symptoms, and Beckham had a whole bunch of symptoms. They ranged all the way from horrible vomiting (that couldn't be controlled with Zophran), diarrhea, fever, smoking high blood pressure (147/88), and super pale skin. Beckham also had bruises covering his face, arms and legs. This was caused from his platelet counts being low. They were not low enough for him to need a platelet transplant, but still low none-the-less.

As for now Beck is being given antibiotics and anti-nausea meds. If he can keep food and liquids down then we may get to go home today. Here's hoping!

Update 10/13/08

On a good note, since our last post Beckham began to improve and start to get better. On a bad note, his sickness started all over again this weekend and now he is back in the hospital. I am beginning to think that there must be some sort of magnetic pull between Beckham and the hospital because he can't seem to stay out of that place.

I have had a long couple of nights and days and I don't have the best frame of mind to type out every detail. I will try to update in the next couple of days when we know more what is going on. The best that I can tell you is that he is still dealing with vomiting issue and other fun (ha ha) stuff. Please keep our little guy in your prayers. He looks pretty miserable right now. He is down 2 lbs and for a baby that is a lot!

-Kim

Update 10/4/08

This weeks highs and lows:

Low - Beck started off this week (last Sunday) with vomiting twice. I thought that it was because of his "loose" cough that he was making himself throw-up (silly me). We watched him closely for the next couple of days and brushed it off.

High - I had my good friend Erica (amazing photographer) take Gwen's 2 year old and Beckham's 1 year old pictures. They turned out so great even though the kids were semi cooperative. Poor little Beck had labs a 1/2 hour before his pics and they had to draw lots of blood from his head. Luckily Erica was able to photoshop out the bruise from his head. Here are a few of my favorite pictures. Gee, my kids are so stinking cute! Click here & here for more info on Erica's photography business.

Low - By Tuesday night Beckham was super fussy and grabbing his ears (here we go again) and so Wednesday morning I took him to the doctor and he was diagnosed with a double ear infection. Too bad he could not get a Rocephin shot for the infection. Last time he was given one he had an allergic reaction and broke out in hives. Now we have to deal with giving him oral antibiotics by mouth. I hate giving oral antibiotics to a baby...specifically Beckham.

High - I finally mailed off the "thank you" letter to the donor family of Beckham's heart. This has been a very hard thing for Nate and I to put into words our gratitude for the gift of life that was given to us and when it was finally finished (only a year late) it brought us tremendous peace. We would love to get a response from the donor but we would absolutely understand if we do not. I just hope that the letter brings them some peace also.

Low - The day after Beck's ear infection diagnosis he started throwing up again. He was throwing up so much that we had to take him to the ER (our home away from home) for fluids. It took 4 pokes to finally get a vein for an IV, but once the fluids and Zofran was in his system he stated to look a lot better. The ER doc was great and promised to try and treat us as "out patients" so that we would not have to stay over night. I think that she could tell that we were a little sick of the hospital. Too bad that Beck did not stay happy very long. It has been three days since the ER visit and he is still vomiting. Luckily we have extra Zofran, but if he does not knock it off soon then we will have to be in the hospital over night. Poor little guy! He looks terrible. He is super cute and cuddly right now but that is because he feels like crap!

High - Beck's blood pressure has decided to stabilize and he was taken off of Enalipril. He is now only on one medication (except for the antibiotic for his ear infection). We have never had so little medication to worry about (knock-on-wood). What an amazing little guy.

Low - Beckham has decided not to walk again since the video we posted last week. Oh well. I guess that I will have to keep carrying him around.

High - I finally started to teach aerobics again! I am only teaching to a bunch of friends from church and the neighborhood, but it sure feels great to get out and be doing something that I love.

I don't think that our lives would be complete without the low's & high's that we experience every week. Even though they are sometimes frustrating and trying, they are part of who we are and we would not be the same without them.

Hope your week has much more high's and a lot less low's!

Walking Stinker

Gwen & Beckham's Halloween costumes arrived in the mail this week (thanks mom!). Of course I had to try them on the kids to make sure they fit (ha ha, I couldn't help myself). Luckily they fit perfect and the kids looked adorable.

Right after I put Beckham's cute little skunk costume on him he turned around, let go of the coffee table, stood, and then took three steps into Nate's arms. Huh? Where did that come from? Beckham has not even been interested in walking let alone standing. I guess that he needed his super hero skunk costume on to have the confidence to walk. Love it! Here is the video I took right after he took his first few steps. Way to go little stinker!

Catch-up #2

While on our vacation in Utah we got to finally meet baby Noah and his family!



Those who have followed this blog from the beginning know baby Noah. For those who have not, Nate has a relative who had a baby boy (Noah) about a month and 1/2 before Beckham. Noah was born with a severe CHD of Critical Aortic Stenosis. He received a heart transplant when he was 27 days old. Noah's mom (Crystal) and I have become great friends and she has been such a support to me during everything that we have gone through with Beckham. It was so great to finally meet them in person.



Noah and Beckham are on different anti-rejection medications. One of the meds causes hair growth and the other causes hair to grow in slow and thin. Can you guess which little guy is taking what med?

Here's some more fun pictures of the heart twins. We sure love you Noah and family and can't wait to see you again!

Catch-up #1 (Beck's Birthday)

I need to "catch-up" everyone on the other stuff we did this summer besides stay in the hospital. Beck is doing great right now so I am going to take advantage of it. First and foremost....

Happy Belated Birthday Beckham!

Our little rock star turned one year old on August 1, 2008.

We were fortunate enough to be in Utah over his birthday and celebrate with our families. Beck was lucky enough to get two birthday parties.

Eating cake at the Scadlock grandparent's home

Schaalje grandparents party

Here are some fun facts about Beckham:

1. Favorite word - "ball"
2. Interested in walking? - Not in the least bit!
3. Favorite foods - anything (this kid is an eater!)
4. # of teeth - 8
5. Favorite thing to do - steal stuff from his sister and then crawl away as fast as he can (it's pretty cute because Gwen is bawling and Beck is laughing).
6. Least favorite thing - getting blood draws. This happens quite frequently and he never gives up fighting it. You think that he would after all this time.

What a year this little guy has had. We are so grateful for everyday that we have had him with us. He is our little miracle baby and we love him more than we can express. Happy Birthday buddy!

Dylan's Dragon Walk

Hey all you Iowans...

A special Walk for the Help-A-Heart foundation is coming up on Saturday, September 27th at the Wagner Park Bandshell in Ankeny. Help-A-Heart is an amazing organization that helped us out so much while Beckham was in the hospital in Iowa City. This walk is in honor of Dylan Hooper, who passed on June 30, 2008. We met Dylan's family while we were in Iowa City for a follow-up appoinment for Beckham and instantly fell in love with them. Dylan was such a fighter and our hearts are broken for his family. Dylan's mom and another mom of a CHD baby founded the Help-A-Heart foundation to offer finacial assistance to familes with children who have CHD's, who have to stay in the hospital for an extended period of time. This event is such a great fundraiser for such an amazing foundation. If you are available please come! I would love to organize a team in honor of Beckham, but I don't know if that will be possible due to limited amount of time we have. If you are intersted in being on a team for Beckham please let me know. Below is race info:

Registration is a donation of $20 for an individual & $40 for a family including 1 or 2 T'shirts. You can pay an additional $10/shirt if you need more. The individual & team who are the highest fundraisers will receive special recognition the day of the walk. There is a limited supply of T-shirts so please pre-register to guarantee your shirt. Register for the race here.

The last news interview...

At the beginning of July we attended an award ceremony for Methodist and Blank Childrens Hospitals where they received and award for their success rate of families deciding to donate their loved ones organs. We did a post about this event in July but we could not post the news clip because it had not been posted to the news station website. We finally received the news clip. We think they did a pretty good job. Hope you enjoy it as well!

Update 8/27/08

Just a quick update to let everyone know that Beckham is finally home after his 17 day hospital visit. He is feeling and looking much better, but he still is having problems with eating and taking his meds by mouth. Because of this he was sent home with a NG tube. We are hoping to get that out soon. We wanted to upload a picture to this post so that you could see how much better he looks but our computer is acting up. I will post more later.
-Kim

Update 8/22/08

Beckham is still in the hospital but he is doing much better. His fever finally broke and that has helped him get a little energy back and helped his blood pressure get more stabilized. His sores on the outside of his face still look pretty bad but they do look much, much better. Beck was also able to get his IV out because he is now off of fluids and they have changed him from Morphine to Loritab. He is now getting paid meds "when needed" and we hope to ween him off of those soon. The biggest thing that is keeping him in the hospital is the fact that he still won't eat by mouth. Although the sores on the outside of his face look better, the sores on the inside of his mouth are still quite bad. I tried to feed him some bread and cheerios yesterday and as soon as he brought them to his mouth his whole body started to shake because it was so painful. He tried really hard to eat them, but soon after getting them in his mouth he spit them out with a mouth full of blood. Poor guy! He is still being fed NG and that is going...alright! He pulls the tube out every chance he gets. He is now getting Pediasure through the NG tube. They bumped up his calories from 27 to 30 and it has really made a difference. When we brought him into the hospital he weighted 19.13 lbs and now he weighs 21.4 lbs. He still is pretty swollen and I am sure some of his weight gain is due to that but he looks pretty cute with a little chub on him.

Beck has also started to smile again! His smiles are small and infrequent, but we will take what we can get. He is also getting pretty stir crazy at the hospital (that makes two of us) and he is ready to go home. We are hoping to get to go home this weekend. Hopefully that will happen. Nate starts school on Monday and my parents need to leave this weekend. I don't know if I can handle Gwen all day at the hospital if Beck does not get to go home. Lets pray that he starts to eat and can come home!

Thank you so much to everyone that has reached out to us during this time. I am so grateful for the meals that have been brought to me while Beck has been in the hospital. Hospital food is pretty nasty and expensive and it has been so nice to have a home cooked meal every day for lunch and dinner. We are so lucky to live in such a great place with such great people.

We will keep you all posted on Beck's progress. Keep him in your prayers. Please also keep this little sweetie in your prayers. Mia is a little newborn that was born with a similar heart defect as Beck and is waiting for a heart transplant. I have been able to get to know this family and they are amazing and have so much faith. Mia is such a cutie and such a fighter.

Thanks again for everything.
-Kim, Nate, Gwen & Beck

Update 8/17/08 & 1 year transplant anniversary

Greetings from the hospital (unfortunately). Actually now it is greetings from the PICU. We were on the general floor before, but Beckham is requiring a little more care and PICU seemed like the best alternative because the other alternative was being transferred to Iowa City. I love the hospital in Iowa City, but I really want to stay in Des Moines, especially while I still have other sick family members.

Beck is doing somewhat better. He has not spiked a fever at all today. He has had a fever for almost 10 days straight and not getting one today would be a big milestone. He sores are also looking better but worse at the same time. They now look like huge open sores instead of large blisters on his face. It seems like all you have to do is barely touch one of his sores and he is gushing blood (seriously). But I know that his sores have to get to this stage in order to get better. I did try for the first time in a week to feed him by mouth instead of the NG tube and it was very unsuccessful. I will give him a couple more days before I try again. Beck's ear infection also looks better. We switched him to a new med because of his allergic reaction and so far he has reacted just fine to it. His Tacro level is also a little more under control. His dose was cute in half to compensate for the large spike and his level has finally started to slowly drop to the normal range. Hopefully this drop in Tacro level will give him the immune system that he needs to fight off this virus.

The rest of us are also doing a lot better. Gwen is pretty much back to normal. My parent are here helping us while Beck is in the hospital and I am grateful that they will be able to watch Gwen so that Nate can continue to mend. Nate is doing a little better. His fevers have stopped, but he has a mouth full of sores to deal with. I think that he has a whole new appreciation for how sick the kids have been because he can barely talk and eat. I am also doing better. My brain was a little fried from having to be in the hospital again with Beck. It brought back a lot of frightening memories from last year. My mental state must be taking a beating because on Friday I went home to visit Nate and Gwen for a couple of hours. When I got back to the hospital I sat down on the chair next to Beckham's crib and looked down and I was wearing two different shoes. I don't know how I did not notice because they are not even the same height as each other. Oh well, that is very typical Kim behavior!

Beckham's 1 year anniversary of his transplant was yesterday. It was a very bitter sweet day for us. Bitter because we had to acknowledge the passing of the sweet baby who's heart went to our Beckham and also because we had to celebrate this anniversary in the hospital. But it was so sweet to celebrate the precious gift that gave our baby life. We don't know how to express our gratitude to the donor family for the choice that they made to donate their baby's organs....but all we can say is "thank you" for giving us the gift of life when a life was taken from you. Thank you for choosing to take a tragic, heart breaking event and turn it into a miracle. We love our little guy more than we can express and we treasure everyday we have with him and we owe it all to the donor family. We would also like to thank all of the hospital staff that worked so hard to save our little man. We sure love you all and can't even begin to express our gratitude to you.

What a year it's been eh? Truthfully, I know that we would not change anything. This year has changed us and made us completely different, better people and we are so grateful that we were chosen to be Beckham's parents.

-Kim, Nate, Gwen & Beck

Update 8/15/08

Beckham is still at the hospital and I don't see him coming home anytime soon (darn-it!). His body does not seem to want to let go of this virus and other problems seem to show up daily...sometimes hourly. The most important thing is that so far none of those new problems have to do with his heart (big sigh of relief). I think it is more my heart that is suffering because I can't stand watching him suffer so much. But I am his mother and that is my job!

Beck looks pretty awful right now. He is so swollen that he can't open his right eye and I am sure it will be that way for the left eye soon. His blisters are now in the "scab" stage and crack and bleed, but this is a good stage because it means that he is on the mend (from the blisters). He has also been diagnosed with an inner and outer right ear infection. They went to treat the infection with Rocephin and about an hour after he was given the med he had an allergic reaction to it and broke out in a huge rash. He was immediately given Benedryl to counteract the effects of the Rocephin. Because of a combination of the Hand, Foot and Mouth virus and the ear infection, Beck has completely refused to eat by mouth. An NG tube was put in his nose yet again. He has already pulled out 5 NG tubes previous to this one and I am sure that it will not be long before this one has the same feight. Beckham also is still having super high fevers. They are so high that he has been given Ibuprofen on top of the Tylenol. Transplant recipients are not supposed to have Ibuprofen, but we have been given permission to let him have it so that we can get his fevers under control. Another problem that has come to pass is that is Tacro level is totally out of whack. Beck's Tacro level needs to stay between 9-16. His level has been around 11.8 and because of this they lowered his dose by .6 so that he could have more of his immune system to fight off this virus. When they went to check on his Tacro level (thinking that it would come back low and they did not want it to be too low) it had for some reason risen to 30. Now we had to stop his Tacro until we can take another level and see if it has changed at all. All in all, Beck is remaining pretty comfortable. He is on a continuous Morphine drip (they had to change the Fentanyl to Morphine because the Fentanyl was making his blood pressure rise) and sleeps most of the time. I am just glad that he is too small to remember this when he is older. I wish that I could say the same for me.

I am not totally sure but I think that is about it to report on (I could be wrong, but it is 4:00 AM and I do not have to best frame of mind right now). I have been staying at the hospital pretty much non-stop with Beck because Nate also has the Hand, Foot and Mouth disease and is quite sick. He is a super hero and has been taking care of Gwen on top of being so sick. I saw them both for a little while yesterday and it was so nice to see that Gwen is getting better.

Thank you so much to all of the those that have reached out to us during this time. I hope that I have not offended anyone by telling them "no" to their offer for help. The only reason I have said no is because I do not want anyone to catch this virus from us. It is very contagious and obviously very miserable. Thank you to those that have not taken "no" for an answer and have come and visited and brought us meals and so forth. We also appreciate all of the prayers on our behalf. Please continue to keep Beckham in your prayers. He has a long way to go. He is super sick, but he is not as sick as he was at this time last year. Tomorrow with mark his 1 year anniversary of his heart transplant. I have such tender emotions at this time for all that we have been through this past year and for the sacrifice that was made so that my precious baby could still be here. I have so much gratitude for all that we have. Please also pray for the donor family of Beckham's heart. They are also going through an anniversary of loosing their sweet baby and I can only imagine their heart ache.

I am going to try and get some sleep now (good luck to me!). Thanks again!
-Kim