A Roller Coaster Week

This past week has been full of high's and lows! It started really well with our annual Cub Scout Rocket Launch. Watching the rockets soaring up to 700 feet above us and seeing the kids running to find there rockets really is fun! Alex was happy to see his buddies, but still wasn't feeling great so we didn't last very long. Instead of making a new rocket, we once again launched our "Samuel" rocket. I am not sure we will ever have another rocket!

Most of the week we had a very quiet week with just school and psychology. We did have our first Den meeting on Tuesday night. Alex had so much fun with his buddies. I love to watch the times when he can just be a kid...telling secrets, laughing and playing. I was really happy that starting Tuesday I started to see some of Alex's "spunk" return. For the first time in months there is a hint of the light that I have really missed! On Wednesday, Alex had his first unit test for schoool. We continue to be really happy with our new curriculum and they include tests every 20 lessons. I am not talking a few small questions. His test was 4 pages of math and 13 pages of other material plus a 20 word spelling test and dictation. I am proud to say that my little smarty pants got EVERY SINGLE ONE RIGHT!!!!! I am so proud of the hard work he puts into school and responsibility to always want to do his best.

Tuesday's low was a prescription that was stolen from our front porch. The pharmacy replaced it and it wasn't a really big deal. BUT it really bothers me that someone would take a prescription that is sitting at someone's house. Serves them right they didn't get any "good" drugs...just prevacid.

My van had been so slow to start ever since I got home from Houston last week. It seemed like the battery, but after having it tested we were assured it was not. Panic set in as this car is only a few years old and car repairs were definitely not in the budget. We nursed it along with plans to take it in yesterday. However, Wednesday when I went to go run errands the car wouldn't start. Not having a working car is not an option is this household. If Alex were to get sick and I couldn't quickly get him to a hospital, it could mean the difference between life and death. So I told Bruce he needed to get home ASAP after work so we could figure out what was wrong and come up with a game plan. Luckily when Bruce got home he was able to jump start the car immediately. We took it to a local shop and they assured us that it was indeed just a dead battery. Woohoo! (I never thought I would be so happy to have a dead car battery) So an hour later, my car was up and running.

Thursday I had an oil change scheduled and was informed that my car is going to need tires soon! AGGGHHHHHH! I hate car "stuff'. But I also got the good new's that Dr. Kristy (Alex's beloved psychologist) will be covered as in-network through insurance for another six months. Yippee! We really would be lost without Dr. Kristy at this point. She has been incredible with Alex. After years of anxiety and OCD and the extreme grief of Samuel's death, Alex is not exhibiting signs of any of these things since working with Kristy. She really is a God send in our lives.

Friday was a day I had been dreading. Friday was the one year anniversary of the day Samuel passed away. Last month on his birthday (and for several days preceding) I was nothing short of a blubbering mess. I wasn't sure emotionally how I was going to handle this day. Surprisingly, I did okay. Kristy and I had made the decision together not to call attention to this day as far as Alex was concerned. If I was really upset, I wasn't going to lie to him, but we also weren't going to make a big deal. I kept pretty busy on Friday and tried to avoid going back a year in my head. I did something I rarely do and just tried to avoid thinkking about it. Those of you who know me well, know I am very in touch with my feelings. I am not afraid to feel hurt and cry. But I simply decided I wasn't going to do that in this case. September 23, 2010 in a day that has forever changed me. It is a day that I can picture in perfect clarity and they are not pictures that you want to relive. That day I lost a baby that I loved like my own. I watched my best friends and second family say goodbye to their beloved son. I watched Alex and Lauren suffer through realities and emotions that no six year olds should ever have to face. That day forced me to face my very worst fears in this world. Samuel, both his life and death are a part of me. They will always be a part of me, not just on September 23rd, but everyday.

Last year at this time, Alex was in the hospital, very sick. He was on Day 5 of a temp that we had been unable to get under 103 at any point. He was having seizures. He was hallucinating. It was not a good time. Just hours after Samuel's death Alex's temperature broke out of the blue. And I don't mean came down a little. Alex's temp went from almost 105 to 98 with no explanation. No part of me doubts that Samuel had a part in that. Missy and I have talked many times and we firmly believe that Samuel is keeping an extra close eye on his buddy and keeping him safe.  You will remember that we flew to Stanford on Samuel's birthday. So I had to chuckle when I got the call Friday afternoon informing me that Alex's SubQ IG (immune therapy) was approved "just that morning" and they were calling to set up the first infusion. We are so hopeful that this treatment will help Alex stay healthy and out of the hospital and able to participate in more "normal" kid activities.

Yesterday, I headed off to a Cub Scout Leader training and Bruce and Alex headed off to meet the Den to sell popcorn at a local Walmart. Alex is excited it is popcorn time again! he loves selling popcorn. He set two goals for himself this year:
1. To be top salesman for the Pack again
2. To sell $1000 worth of popcorn.
If you would like to help Alex meet these goals please visit www.trails-end.com.
Alex's Scout id is 7676878.

We love each and every one of you. Thank you for the neverending love and support showered upon our family.
Ali

The Joys of Home

I really don't have a whole lot to update. We are home and loving every minute. It feels so nice to be in our own space. To have the suitcases unpacked and put away. To know that there is no looming trip on the horizon. As always we are trying to dive back into our regular routine while catching up on bills, laundry, cleaning, mail, etc.

Alex's temperature finally broke late Monday night. It was very interesting because his temp came back to normal about an hour after we lowered the rate of his feeds to our previous rate. (We had been diluting his formula and running it faster when we stopped the IV fluids). I am not sure if this was a coincidence or not, but I was just glad to see a normal temp. His temp stayed down Tuesday while he enjoyed his time in music and playing with the child life volunteers. We also had a very special visit from Baskets of Hope. They are a group that brings baskets of treats along with bibles and christian music to kids in the hospital. The baskets were delivered by two Houston Texans. They hung out with Alex and prayed for him. He enjoyed meeting "real" football players. All in all it was a good day. We headed home Wednesday morning.

Alex is doing okay. I was hoping he was going to perk up a little quicker once starting TPN. He is still pretty low on energy. We are not sure if it is still his body trying to catch up on nourishment or getting over the virus that made him sick. Either way we are hopeful that his spark is back soon.

I can not thank you enough for al the prayers, messages and calls. They continue to lift us up when we are down. We are so very thankful for the incredible group of family and friends that stand beside us.
Ali

Hospital Update

Things are trekking along here.... Alex is feeling better but still running consistent temps between 100-101. At this point we are not sure what infection we are fighting. We do know that his labs started to look much better after 24 hours on antibiotics. We have not seen the primary team or Dr. P yet this morning so I am unsure if we will do a full course of antibiotics or not.

From the GI side of things, labs look good. His weight is up a tiny bit, but they said they need to assess it in 2-3 day chunks. They are making it sound like they want to keep an eye on him for a while! UGGG! I am hoping if things stay stable they will change their minds.

Alex's temperment and behavior has been excellent. He has been playing quietly and watching lots of movies. I have told him we will start school tommorrow. He is trying to convince me that you cannot do school in the hospital! Last time he got Dr. K to write him a Dr's note excusing him from school. It's a conspiracy around here!

I will update if I have any more info or there are any changes later!
Ali

Not What We Expected!

We are in the hospital, but not necessarily for the reasons we expected! We saw GI yesterday morning and as we expected they were very concerned about his weight and current nutritional status. It was decided that Alex should be admitted to start TPN and watch labs closely. There is a syndrome called refeeding syndrome that is seen in severely malnourished people when they are given proper nutrition. It makes their electrolytes very unstable. So they decided he needed to be watched in the hospital for several days and check labs every 12 hours.

We headed to home to get all of our stuff and head back to the hospital. We were admitted to the general pediatrics floor and within an hour he had spiked a fever. This started a mad rush to try and get labs run, cultures drawn, antibiotics started and us moved to our "normal" unit for more complex care.  Unfortunately, there were no beds available so it took a little while. The poor boy had to be stuck for blood, do a throat swab and a nasal swab. It was a hard night! He was able to fall asleep about 8:30 and we got antibiotics, IVIG and TPN started. Alex spiked a higher fever to 103. We have done labs twice and it is clear he has an infection, but still have no source.

We have seen several doctors, but until we know what is going on and see more labs we have no plan for when we will be discharged.

I will do my best to keep y'all updated. Thanks for your prayers.
Ali

Update on our appts

We arrived in Houston on Tuesday. We had a sleep study scheduled for Tuesday night. Sleep studies are one of Alex's least favorite tests, but he did VERY well. He was a trooper while they hooked him up and was asleep before the tech even left the room. Poor baby was exhausted!

We woke up yesterday morning to quickly run home and shower before heading to the hospital for 2 appointments. Our first appt was with Dr. P (Alex's allergist/immunologist). She totally caught me off guard when as soon as she walked in she announced that she was going to be starting Alex on Sub Q immunoglobulin (just like IVIG, but a different infusion method). This is a treatment that has been used sporadically on Alex many times and has been on the table as a regular treatment for a long time! It is an infusion that should help Alex's immune system work better and keep him from getting sick so often and so severely. The majority of the appointment was spent discussing this. Alex also needed to get another vaccine as he has no titers for pneumoccocal.

After a break to visit some friends and grab lunch, we headed to our second appt with Dr. J (the pulmonologist/sleep dr). She unfortunately only had very preliminary results so we discussed a lot of "what ifs". The first thing she did was a Pulmonary Function Test. Alex's results were significantly worse then his last two PFT's. She also confirmed that Alex definitely has asthma. After discussing that we moved on to the sleep study. She does know that Alex has both restless leg syndrome as well as Periodic Limb Movement Disorder. She is going to run some labs before we determine whether or not to treat. She did not have any results, but we discussed possible oxygen or bipap at night depending on what the results show.

We see GI tomorrow. I have been told at this point that we are putting Alex back on TPN at night. I will not know until tomorrow whether we will be admitted for a few days or not.

Ali

On the Road again...

I feel like this is the story of my life recently and I am pretty sure Brucey would agree! We stop in briefly to do laundry and restock meds and supplies, but I feel like I have spent the last 6 months living out of a suitcase!

This time we are in our second home...Houston! We drove in bright and early this morning. We were hoping our GI would have a cancellation today and be able to squeeze us in, but he didn't even have clinic. OOPS! Alex has a sleep study tonight which he is less then excited about. We have only done one sleep study almost 3 years ago and it was traumatic to stay the least. For a child with sensory issues there is nothing fun about eeg leads that smell and oxygen cannulas. Luckily we are 3 years into this journey and have been through much worse. At this point Alex is on oxygen almost every time we are in the hospital so he isn't nearly as freaked out as last time. I just hope he keeps us the brave face once we get there tonight!

Tomorrow, we see our immunologist and pulmonologist. The allergist/immunologist is one of the main members of Alex's health care team. One of the doctor's who knows him best. So Dr. K wants her opinion to weigh in on what we should do regarding Alex's weight loss and hydration issues.  On Friday we see GI and then they will make a decision. We have been told by numerous people to expect to be admitted.

At this point we will let the week play out. I am unsure how long we will be in Houston. Hoping for a quick turnaround and some quality time in our own house!!!

Ali

PS- I guess I should say he is doing fabulous on the new med. The first two doses caused some stomach pain, but since then we have had no problems.