Texas Trouble

The weather in Texas...well let us say it is HOT!! We have finally jumped into the 100's. For some reason it feels hotter than normal. We were really enjoying the mild weather. We then realized that it is almost July. The bad thing is that we are taking a two week vacation to Utah. We will really feel hot when we return. The high's in Utah are the lows in Texas.

First of all Conner has been having a hard time dealing with the heat and us keeping him inside as much as possible. We visit the local pool as frequently as we can. We now realize why people in Phoenix love having pools. If we move back, a pool will be standard. He finds ways to channel his enormous amounts of energy....in productive ways by developing his art skills!! Wonder what the design looks like? Possibly, the police outline of Conner's dead body when we saw it? Conner said he was drawing an E.....you decide

I, Kim, decided to try to focus this creative energy into something fun. This is the "golden pyramid". We ran out of blocks so we started grabbing things around the front room. It consists of his building blocks...A&D bummy cream...Diego jeep...bubbles...lotions...and a bulb syringe. It was rather tall. I'm thinking of switching from public health to art...I would say I could sell this for....$135,000 or so!!

Conner has wanted to start taking some pictures. This was Leslie and Nikolas doing some therapy workouts while we constructed our "art". This served two purposes. Leslie can relax yet still do therapy with Nikolas.

Last but not least the Texas Beam's are now terrors on the road. We sold one of our cars and purchased a minivan. This was a huge step for us...for both of us. We are adjusting to the minivan, and enjoying its convenience!!! A common phrase is that "trouble comes in three's". We figured we would try to get a heard start on driving a larger vehicle before trouble maker number three arrives in December!!!!

Home

Yay!! We were only in the hospital for 5 days. Nikolas recovered well from his peritonitis, I think because he was the healthiest he's ever been going in to it, so his body was able to fight it off more easily. The peritonitis was caused by a bacteria that one of the nephrologists said he hadn't seen cause peritonitis since the 70's. Of course that would be what Nikolas had, he never does anything ordinary!!! They didn't resolve the issue of his port...they tried, but with no luck. His port had another fibrin sheath at the end of the catheter and the catheter itself had moved up two centimeters from where it was originally placed. They put him under anthesia and stripped the fibrin sheath off and pulled the catheter back down into place and told us it was fixed and it should work. They were able to get blood from it once and then it quit working again. No one really knows why or what else to do. The port is supposed to make blood draws easier and be less of a hassle, but we've had nothing but problems with it and it's almost been more of a problem than it's worth. We're just glad we're home and that we had a short stay. Today, Nikolas is very happy and smiley and full of energy. I'm so glad.

Hospital stay #4

On Friday, Nikolas woke up happy as could be, he was fine all day and woke up from his nap smiling. Around 3 in the afternoon, he started crying and didn't stop for 2 hours. He had a fever and he was obviously very uncomfortable. We suspected peritonitis (an infection in his belly), so we gave him some pain medicine and put him to bed to dialyze him, then waited to see what his fluid looked like in the morning. Sure enough it was cloudy and junky so our doctor told us to take him to the hospital to get treated, because with Nikolas we really can't take any chances. Whenever we come to the hospital we are always hopeful that it will be a short stay and that the original problem will be fixed without any other complications or problems developing. So far he seems to be getting better, even after just one day of treatment. We are hoping to just be here a few more days and then be able to go home and finish his antibiotics at home. Of course, his port didn't work when they tried to draw blood, so they are trying to figure out what is going on with that. And, of course, since we are in the hospital, the daily amount of poops has doubled, at least. What is it about this place that makes him poop!?! No offense to the wonderful hospital staff, but please let us get out of here as soon as possible!

Nikolas swimming

We decided to let Nikolas go swimming this summer instead of just sitting on the sidelines in the sweltering humid heat. I was a little nervous about putting his catheter and G-tube in the water, ya know, because of his history of infections, but the doctors say as long as the water is chlorinated, he can get in it. So, his real first experience was on Memorial Day at the hotel Wendy and her family stayed at when they came to visit us. The pool had salt water instead of chlorine, so we just put his feet in.

We had fun with the Crow's and were glad that they spent the holiday with us. Here's Nikolas and his little cousin, Bethany.

And here's all the cousins (minus Bethany who was sleeping) Conner, Nikolas, Cameron, Wesley and Carter. Conner has so much fun with his cousins and gets so excited when they come to visit.

Anyway, the next day, we went to our public pool with the Bertoldos to celebrate Jackson's first birthday and Nikolas was all decked out with his swim trunks and hat.

He had a lot of fun and was very smiley.

Here we all are, enjoying the pool

We even let Nikolas have a taste of the frosting from Jackson's cake. You can see from the picture that he liked it!

Good news!

Nikolas had an appointment this week with Dr. Simon and the nephrology team. They were all very pleased with his progress and with the fact that he has been out of the hospital for 2 months. So, Dr. Simon said he was going to refer us to the transplant team in San Antonio to start the work up for Nikolas's kidney transplant. This was wonderful news for us. We weren't expecting it for at least another 4-5 months. The first appointment (we don't know when it will be yet) will be an all day event where we will meet with several different doctors and get blood drawn from Nikolas and from Kim and I to see if we are a match. If anyone else wants to be tested to see if they are a match, we will be able to find out how you will go about doing that. I think Nikolas's insurance will cover the costs for anyone who wants to get tested (even if you don't live in Texas), but I'm not 100% sure on that. Realistically, transplant is still probably about 6 months or more away but we were very excited that Nikolas is stable enough to get the work up started and to be moving in the right direction.

Lakeside Eating and Camping

We recently went to dinner with my classmates. They will all be graduating, or have graduated as of today. We have been in the same classes together for the last two years. A majority of us got together and had dinner at The Hook. It is a lakeside restaurant on the shores of Lake Bryan. It was a lot of fun, and Leslie was finally able to put faces with names. She had never met any of my classmates. It was a bittersweet dinner. The bitter side is that I could have walked today, I dropped two semester because of hospital stays, and received my masters degree with them. The sweet is that I was able to spend a lot of bonding time with my family, and maybe the economy will be better when I finish in December. Only 1 of the 12 at the dinner have a job.

The beautiful sunset we watched while eating.

A family photo

A class photo

Our stake had our father's and son's campout at Lake Sommerville. Leslie talked Conner and I into going up for the campout. Lauren, a good friend of Leslie's, talked her husband, Nate, into going also. We rode together, camped, ate, and tried to keep our boys as clean as possible for their moms. The most difficult task in the world is keeping two three year olds clean. Conner was super excited to go camping. It was really a fun time, and Conner and I had a fun time bonding.

Our little campsite!

The Beam family tent, large enough to fit our family of four, and more....

Our sleeping arrangements. Conner had his own twin mattress. Somehow it deflated in the middle of the night. So I moved him over to my mattress. He loved having his own sleeping bag.

Thankfully I ran into Nate at Walmart. We were both purchasing some last minute manly camping stuff. Thankfully he mentioned that there would be a lot of bugs there. Well this was outside our tent in the morning. This is just one tiny little corner or our tent. Needless to say there were lots of bugs, and thankfully we had bug spray.

Conner having his first boy scout breakfast of licorice and gold fish.

Thanks for going camping with me Conner. I hope this made up for the last week of all the times I said, "Conner I can't play Go Fish. Daddy is studying and doing homework." Unfortunately he heard that phrase a lot. Both he and I endured and survived finals, barely!

Chromosome information

So, I finally heard from the parent of the other child with the same chromosome deletion as Nikolas. I emailed her a list of about 40 questions and she answered them all and welcomed more. It's so interesting to me, however, that her child seems nothing like Nikolas. Other than some hearing loss that is corrected by hearing aids, her child has NO other medical problems...no G-tube, no feeding problems, no kidney problems, no thyroid or parathyroid problems, no calcium or nutritional problems, no diarrhea....nothing. The child did have low muscle tone (like Nikolas) and had some developmental delays but was crawling by 12 months, walking by 18 months and can now run and do all daily activities of life normally. Nikolas is not even close to crawling and he's 14 months old, but I'm sure that has to do with the fact that he spent 6 months of his first year laying in a hospital bed. She also said her child has some learning disabilities and was recently diagnosed with autism as well, which causes volatile and unpredictable behavior. So, I'm not sure if all this information helped me feel better about what is happening with Nikolas or if it just made me see that his condition seems much more severe and the two cases are so different they aren't really comparable. I definitely didn't like hearing about the learning difficulties and the autism but have to come to grips with the fact that those problems are real possibilities for Nikolas. The fact that the child is doing all the daily activities and goes to school and has friends and plays with other kids gave me some hope for Nikolas that he hopefully won't be an invalid or homebound, but again, the cases seem so different it's hard to compare. So, was the information helpful? I've yet to decide.....