Quick Update.... Alex is EXTREMELY cranky. It is obvious he does not feel good. His labs are not great. He is dehydrated. We are going to replace extra fluids today. I am so hopeful that this will help him feel better.
I have spoken to Dr. Koenig, as well as the GI nurse and Dietician. Everyone is trying to decide whether we need to change anything.
Pl​ease pray for Buggy to feel better and for Mommy's patience.
Ali

PS- My best friend's mother is in the ICU and critical. Please pray for them as they struggle through this time.

Thank goodness the week slowed down a little after my last update! Bug and I desparately needed a reprieve. Wednesday I went to the MOMS club meeting. It has been over a year since I have been able to make one of these meetings. It was so nice to catch up with old friends.

Thu​rsday our beloved OT Liz came for her twice weekly session. I can already see the strides Alex is making with her. I am so thankful for her kind, patient way of working with Buggy. He truly loves her.

Friday and Saturday we just lazed around the house. Sunday was more of the same other then church. I have a cute story from church. They were short on Sunday school teachers this week because of Labor Day. So they were going to watch a movie. About half way through the service, I sent Bruce to check and make sure they didn't have popcorn out. Which Buggy is severly allergic to. (Thank you Kristin for always looking out for Alex) So Bruce comes back shaking his head. I whispered to find out what the problem was. His answer...Bu​ggy was sitting with a "big girl" and kissing her non-stop! I had to chuckle! That is my ladies man. I quickly figured out that it must be Brooke, his favorite "helper" who took him under her wing a few years ago.

Medical​ly we continue to due pretty well. There are a few concerns but mild in the grand scheme of things! One is that Alex has been extremely pale for a few weeks. Like think ghost white! In the past this has always signaled the need for a transfusion. However, his blood counts have looked okay so we have no reason behind his poor coloring. The second is his liver numbers continue to not be great. I think this is something I am just going to have to adjust to. I believe this is probably his new "norm". The last is something that I am waiting to here back from the doctors on. When Alex first started having his clotting issues, GI assumed his vitamin k was deficient because Vitmain K is needed for your coagulation factors (to make your blood clot) and is produced in the liver. With his liver not doing well it would make sense that he didn't have enough vitamin K thus causing bleeding issues. They gave him an infusion in the hospital, but when his clotting numbers didn't get better they through out the vitamin k theory and called in hematology. He was given plasma to replace the factors he was deficient in and haven't had clotting issues again. However, we added a vitamin K level to his monthly lab draw. In July, his level was 1112 (this was shortly after the infusion). In August, it was 535. This month came back at 271 and we are starting to see some bruising again. So I am thinking that Vitamin K deficiency could really be the problem. This would be both good and bad. The good is that we can treat it and keep the bleeding issues under control. The bad is that it is an infusion that has to be given in the hospital due to some serious side effects if it isn't given correctly. Anyway, I will keep you updated as I know more about this issue.
The last medical issue is one that seems we have dealt with Alex's whole life. He is once again losing weight instead of gaining. Alex was 35 lbs when he came off of TPN in April. As of yesterday he was 31.8 lbs. We are not panicked as he still is playing and acting okay. It was a known fact that when he came off TPN he would go back to being slightly malnourishe​d. He just cannot absorb formula as well. However, I am not sure at what point we will need to intervene. Please pray for his weight to stabilize.

I think that is all! Phew!!! Labs are tomorrow so I will update after I have the results. Hope everyone has a wonderful Labor Day!

What a crazy few days we have had! This is the busiest we have been in a long time!

Saturd​ay Morning we woke to gorgeous weather! We surprised Alex by telling him we were going to the zoo. Going to the zoo is one of Alex's very favorite things to do. He loves animals wholehearte​dly and has since before he could wal and talk. The zebras (Alex's favorite) greetes us in in a perfect viewing area. The elephants treated us to a swim in his watering hole. And Alex got to "pet" a horseshoe crab, a sea star, a sea urchin and various other sealife and shells. So all in all a wonderful morning.

Sun​day we were off to church. As Bruce can atest, Sunday's are always emotional for me. Something about being in church feeling God's presence and singing the praise songs always moves me to tears. It is the one time during the week that I slow down enough to allow the reality of our world and our crazy life to creep into my thought. My tears are not always tears of sadness. Sometimes they are tears of relief that God is walking side by side through this journey with me and has me and Alex firmly in his grasp. Such was the case this Sunday as we stood singi​ng one of my favorite songs. Oh No you never let go. Through the calm and through the storm. Oh no you never let go, Lord you never let go of me. What an awesome reminder that we will be okay no matter where life leads us. Church was also awesome this Sunday for two more reasons. One, i think I saw every one of the girls who have been so supportive over the last who years. As I hugged one after another of them, I was reminded how lucky we are to be involved in such a caring family. The second was surprising to me... As I dropped Alex off this week, it was with some trepidation! I walked up to Alex's classroom to realize that I had never seen either of his teachers before. That is enough to cause me to panic for a moment, although at this point Alex could probably teach some doctors a thing or two. So as I quickly handed him off, I let them know that if they had snack, Alex wouldn't eat. Alex quickly piped up, "but I can smell". You should see the looks I get sometimes!!! So it was to my delight when I arrived an hour later to find Alex grinning ear to ear practically jumping out of his skin to tell me everything he had made and done. The nice older man who had been his teacher for the day looked at me and said, "How sweet is he?" Of course my response was that he is pretty stinkin' sweet. So when I asked if he had been okay, I got one word in return. "Perfect". Music to a Mother's ears! So all in all a wonderful Morning at church.

We quickly came home to get in a nap before heading off to Daddy's soccer game. It has been a long time since we have made it to a game. When Alex was younger we were at EVERY game. The "guys" have literally watched Alex grow up since he was 6 weeks old. Several of them are "uncles". You see Bruce has played with most of the same guys for the entire five years we have been in Texas. Alex was buzzing all day to see Uncle Rob and we were both excited to see our friends Abby and Mitchell. Daddy's team one, Alex and Mitchell played and I got to chat with Abby. So all in all a success!

Yes​terday, didn't slow down any either! We started with labs (which I'll get to in a minute) , shot, needle change day, and a ton of fun. Monday's are really hard because Alex has to get his procrit shot. His procrit helps his body produce red blood cells and is the reason we haven't needed a blood transfusion in 4 glorious months! However, it is extremely painful. Alex doesn't care one bit about the needle. It is the medicine. it is a medication that burns as it goes in and the burning lasts for several minutes. On top of that we also change Alex's Port needle on Mondays. Alex calls Monday torture days! We have discussed it with Alex and rather then split it up he would rather get all the unpleasantn​ess done in one day. He does great with his port (usually doesn't even cry) but who would like to have a needle stuck in there chest! We always have to pray beforehand that Mommy gets it on the first try with Thankfully these days is pretty much always! So after all the torure...we had school. Alex and I got started and about halfway through he said, "Mommy, I am LOVING school today". I said, "Bug, i thought you loved school everday?" His response...."​But I REALLY love it today!" So I think it is safe to say school is still a hit.
After school we quickly lied down for nap knowing I would have to wake Bug up for teh second day in a row. Something I try not to do! (It really does cramp your style when your five year old sleeps 4-5 hours every sfternoon. Not that I would give it up!) We quickly headed off to playgroup even if we were 45 minutes late (Sorry girls!). As always the kids had a blast and the Moms had some much needed chat time. I really think there are days we like it more then the kids. Just don't tell them that!
At 5:15 Bruce picked us up for a special treat! Somehow in the craziness of the last few weeks I never told ANYONE that we had tickets to see the Texas Rangers (MLB) las night! So we were off to Alex's first baseball game. He was really excited as we pulled up to the stadium and marched inside to our seats. His eyes were dancing around as he took in the sights and sounds of the stadium. Br​uce and I had to give each other then eye above his head and try not to chuckle as he quickly exclaimed, " Oooh cotton candy. I have got to have some of that". Bruc​e was looking at me like he was crazy, so my hasty reply was that it was his first baseball game. So like any other kid at their first game Alex patiently (OK not really) waited fort he Cotton Candy man to make his way to our section. Who cares if you can only smell it right! Sometimes it hits me how "normal" Alex is in the midst of his crazy life! Alex was bored in parts as can happen at a baseball game, but loved dancing and showing "his moves" during the inning breaks. My favorite part was when the Rangers got on a roll in the bottom of the fifth inning. The stadium came to light and Alex was standing and cheering and then after a homer fireworks went off and his face lit up! We left shortly after as Alex had been asking to go for a little while. So as we're walking out of teh stadium he kept saying, "how come we have to go? When can we come back"? Thank you so much to everyone at the Starlight Organizatio​n for the tickets. It really was a fun night!

So how's that for a crazy few days in the Beckwith household??​??

On to the medical front... Alex's labs were not as good this week as they have been in previous weeks. His liver continues to show stress. And the chronic dehydration showed up in his kidney tests this week. As of right now, the plan remains the same until I hear differently from Alex's GI.

The rest of the week should be significant​ly quieter! Thank goodness. We ask that you continue to pray for Alex's health, for Brucey to find a job and for Bruce's back. Bruce pulled a back muscle (and shouldn't have played soccer) and is considerabl​y more pain then he was in last week.

Ali