Another First

Where the heck did a week go????

We have been so busy. Friday we had therapy and school. School is going very well. Saturday we met Missy and Ben (who were in Dallas for the weekend) for breakfast and then headed home to rest before we headed out to a hockey game. Starlight Foundation sent us to see a hockey game. Alex LOVED it! We had planned on leaving after 2 periods, but Alex begged and we stayed till the end of the game. He was not happy the Brahmas lost, but had fun regardless.


Sunday we had our first "go-see-it" with Cub Scouts. We went to the log cabin village which is a replica of a colonial village. The boys really weren't nearly as interested in colonial timeas as they were with chasing each other. It was fun anyway. Alex talks about his friends all the time. He is so happy when he is with other kids. It is always bittersweet. I love to see him enjoy himself, but wish it wasn't such a treat just to be around other kids. Here are some pictures:

Alex making coffee. Don't I wish he could really do that!

Alex pumping water


Alex and Walker

Den 2

Monday and Tuesday were not great days as Alex tried to recoup from the exhaustion of the weekend! The last few days have been better, but we are in for another crazy few days.

Alex and I are getting ready to head to the airport to watch a special showing by the Blue Angels courtesy of make a Wish!!! To say we are excited is an understatement. For years, every October we head outside to catch a glimpse of the jets as they fly over our house. The airport that has the show is less then 10 miles from our house. But this time we will be up close. I can't wait! You can be sure I'll have pictures! Afterwards Alex will get to meet the pilots and take photos.

As soon as we are done with the air show we will be on the road. Where you ask? I am about to say something I never thought would leave my mouth....Alex is going to camp! We are heading to the first annual Mito Family Camp at Camp for All. This is an experience I never thought My Buggy would have. He will sleep in a cabin with the other campers. Bruce and I will be in other cabins. He will participate in all sorts of camp activities. Dr. Koenig and Lakeesha will be there to ensure everyone's health and safety. I will take care of his meds (we all decided that would be best) and his central line care, but otherwise he will have counselors and urses to help him. Many of our friends from the hospital will be there including nurse, child life girls, docotrs, and other kids we know. It should be an incredible weekend. I am so thankful Bug will have this experience.

Straight from camp, Bug and I will be catching a ride to Houston with the Knights. We will have a few days of appts and fun with our good friends before Missy brings us home and spends a few days of girl time with me. Alex will see ENT, GI and Immunology while we are in Houston.

I will not have my computer with me so I probably will not update until I am home. Please pray for bug to have a good time and for his health.

Ali

Both Good and Bad

I'll start with the good because it is so much more fun. Sunday we met some good friends at the Dallas zoo and we had a blast. The weather at this time of the year is perfect. Here are a bunch of pictures from our day.

As you can see Alex had a great time with Reagan and Riley. It is so neat to get to spend time with friends. Tuesday we had a cub scout meeting and Alex had so much fun playing with the boys. Watching him enjoy life so fully right now really warms my heart.

Now for the not so good... Alex's new seizure med is not working very well. He is having seizures every day. It is frustrating for me to see him struggling. I am hopeful we will get a grip on this quickly. Other then the seizures Bug is doing ok healthwise. We continue to try and get him back to his energy/strength baseline that took such a hit with his last illness.

*******This is just a vent (feel free to ignore it)*******

One of the things that I love about having a blog is the ability to put my thoughts down on "paper". For me writing out my feelings helps me process through them. So on to my vent...I am so stressed right now. The financial strain we have been under for the last two years is taking its toll on me. I am constantly worrying about how we will continue to provide for Alex (and ourselves) and enjoy fun experiences when I feel like we are in a deep hole that we can't get out of. I am having trouble sleeping and have been having headaches. I am trying to hold true to my beliefs that God is in control and has GREAT things ahead for us. Please pray for me to be strong and BELIEVE that things will improve.

As always, we feel so blessed to have such incredible friends and family in our lives.

Ali

Bobcats, Rockets and Fun

When I signed Alex up for Cub Scouts at the beginning of the year, it was because we had pretty much decided it was the only thing he could do. Never did I imagine we would meet such amazing people and have so much fun.

Tuesday night was our monthly pack meeting. We knew Alex was going to earn his first badge, the Bobcat Badge. He was really excited. He had also worked hard to earn 3 belt loops in computers, videogames, and bicycling. As we were heading out I grabbed the camera and video camera and told Bruce he was in charge of pictures while I tended to the meeting and making sure my Den was doing what they were supposed to. (I got home and downloaded 3 pictures, so Bruce has forever been fired as photographer). Right after the meeting got started they had a uniform contest. Each den had to send up one boy to represent them. My co-leader and I started looking at the boys and she immediately said, "Let's send Alex up". So we sent Alex up to join the representatives from the other den's. The Cubmaster and another committee member conferred and announced Buggy the winner. I am not sure his uniform was the best, but who could ignore how stinkin cute he was. He was so much littler then every one else. He was so excited to be the winner and get to choose a compass. Later in the meeting the Tiger Cubs were awarded there Bobcat Badges. There was a ceremony where they painted different colors on their faces to represent the values they will need. It was really cute. I continue to love to watch Alex grow and be confident in who he is regardless of the challenges he faces.

Alex after his Bobcat Ceremony

Today was our second Cub Scout activity of the week...a rocket launch! After several trips to Hobby Lobby we picked out our rocket, our engines and Alex and Bruce were hard at work making sure it was assembled correctly. We headed out this morning with our rocket ready. What a neat experience. Words can't describe it so here are some pictures....

Alex with his Rocket

Alex with some of his Friends

Alex and Ryan

Alex listening to instructions from the Cubmaster

Ready for Launch

10,9,8...

Blastoff!

On it's way down

Alex, Owen, and a new friend

We are so thankful we are part of this awesome pack! We cannot wait for our next fun pack activity!

Ali

A Weekend of Fun

Bedtime last night was not exactly the norm...Two weeks ago while we should have been on our first cub scout camping trip, Alex was battling temps over 105 and feeling terrible. We promised him when he was feeling better we would have our own campout. So yesterday we set up our tent, dragged out our bedding, told ghost stories and camped in the back yard. Hershey and hayley weren't quite sure what to make of the giant thing taking up their space. Although Hersh thought it was fun to try and kiss us through the window! It was another fun experience we are so thankful Buggy is able to experience.

Today was truly special. Something we have talked about for quite a while. Three years ago when Alex was diagnosed with Mitochondrial disease we learned that he was eligible for Make A Wish. Being granted a wish is truly bittersweet. While the idea of a wish is incredible, the reality is that you are not granted a wish unless you have a life threatening disease. That is a hard pill for any parent to swallow. For a long time, Bruce did not want to do a wish, feeling like it meant we were admitting death was in Alex's near future. He has realized over the ensuing years that the reality of this disease is that we don't know what the future holds and letting Alex accept a wsh doesn't change that. I was adamant that I wanted Alex to be old enough to enjoy and appreciate the experience. And so with some (okay, a lot) persuasion from my friends we contacted Make A Wish at the end of the summer. We were supposed to meet with them in late September, but once again our plans were derailed by our hospital admission. So Today was the day to meet Buggy'd wish granters! Make A Wish of North Texas is truly magical. The wishing tower and whole wishing place were incredible. Alex was so excited to meet Abbey and Lloyd our wish granters. We arrived and Alex got to choose a color for the wishing tower. Once he had, the room lit up in that color and we followed a magical path into a sitting area. Alex was able to watch a video about the different types of wishes you can make. Then we moved into the wishing room where Alex was given several gifts. Finally we got on to the actual wishing! They had Alex draw his wish. He drew a picture of a zebra. His wish was to sleep with the zebras. After talking to Alex it was decided that we will travel to San Diego where Alex will get to visit the San Diego Zoo, sleep with the zebras at the San Diego Animal Park and visit legoland. Our wish granters were excited about his wish as they do so many trips to Disney, it is neat for them to plan something new. We will not be travelling for some time so I will keep you updated as the process continues!

Alex getting ready to head to the Wishing Place

Arriving at The Wishing Place

The Fountain at the entrance

In the Courtyard

All of us in the Courtyard



Alex making his wish

The Wishing Tower

Let's see what else....Medically speaking Alex is doing OK. This illness has taken more out of him then any other that I can remember. He is napping 5 hours and I am having to wake him up. He is sleeping longer overnight as well. We also noticed some big differences in therapy. Things that he mastered over a year ago were a struggle this week. We are hopeful that he will continue to get stronger each day and be back to himself in no time! His labs look pretty good. We are once again battling pretty high triglycerides, but are decreasing his lipids yet again to try and get a handle on it. Tomorrow will be our first day without IV seizure meds so we will know whether the new seizure med will work. Please keep your fingers crossed!

We will forever be thankful for the help of our friends and family as we have struggled through difficult financial times. We cannot wait until we are back on our feet and able to pay forward the kindness that has been shown to us. In the meantime, we ask that you continue to pray for us as we struggle to right the ship.

This week is Alex's last week to sell popcorn for Cub Scouts. To those of you who purchased...Thank you. If you would still like to purchase please go to www.trails-end.com. It will say You are supporting no one on the top right side in green. If you click on change then you can enter Alex's scout id # 7676878.

Thank you for blessing our lives with your love and friendship.

Ali

Home Sweet Home

WE ARE HOME!!!! As in we slept in our own beds last night. I never knew what a comfort home could be before we began this journey.

This will be a quick update because I am still exhausted and trying to catch up around here. Alex is doing well. He is now on TPN and lipids several times a week to try and get some meat on those little bones. We are also still working on getting his new seizure med up to a decent level so we can wean off IV seizure meds. He is having a little nausea and stomach pain while we try and get feeds back to baseline. Other then that he is feeling pretty good. Emotionally he is hanging in there. He is still talking about Samuel and Heaven quite a bit. He has been very sweet. He seems to know who is having the hardest time dealing with Samuel's passing and he is showering those people with extra affection. The death of a friend (especially one with the same disease as you) is not a reality any 6 year old should face.

I am doing okay. Missy and I had a good night talking through our feelings. We also took a ride out to the cemetary to visit my little buddy. Missy's extended family is like my own and it was so nice to be able to have some down time with them. We are all anxiously awaiting our next visit.

And so today we try and get bacl to "normal". (I am not sure anyone would call our life normal!) We will pick up school. We have a crazy month ahead of us. We have some cub scout events, a birthday party, playgroup and the month culminates with mito camp. I will be praying that i can keep my Bug healthy to enjoy all this fun we have planned.

I promise to be better about updating again!!!
Ali

Still Here

Alex and I both spoke at the service. I am so glad I said what I needed to say. Otherwise I would have had regrets. The service was nice with lots of staff members telling stories about Samuel.

Over the last week I have not been as detailed with some of Alex's medical info as I have been preoccupied with my sweet Samuel. So I am going to try and catch you up. When I called Bruce last Thursday night to let him know about Samuel, he was understandably shaken. He has heard comparisons about the boys for years. Needless to say he got up Friday and drove here to be with me and Buggy. Knowing how scared he was, I asked Dr. Koenig to sit down with Bruce so he could ask any questions he had. Little did I know Dr. Koenig would surprise me with info. Apparently, Dr. Koenig is much more concerned about Alex's liver then I realized. He will most likely go into liver failure at some point and we will probably have little warning. We are already doing everything we can to protect his liver, so we will just pray that his liver continues to function. We also discussed the fact that in the last year we have been much more lax about coming down to Houston for fevers. That simply cannot continue. A fever that we ignore and do not treat promptly could be the difference between life and death. Protocol for any child with a central line is to be on antibiotics for 48 hours for any fever while they rule out an infection. We have to go back to following that protocol. It was a hard conversation to have, but we were glad to get chance to ask Dr. K anything we needed to.

Where we are now.....We are trying to change Alex to a new seizure med in the hopes that he can absorb it better through his GI tract. We are slowly ramping up to a full dose while tapering off his IV keppra. We are watching to make sure he tolerates this medicine and also that he does not have an increase in seizures while we make this transition. In the meantime, Alex's labs have not looked good the past few days. At this point we don't know why they look so bad. It could be that he is on the verge of getting sick again, it could be from the new med, or it could be from the blood transfusion (oh yeah, he got blood last night). And so we sit and wait and watch labs. We are hopeful that they will look much better tomorrow. We are also watching his heartrate as it has been much higher then baseline the pst few days.

The hope is that things will turn around and we will be discharged on Monday. Alex is in good spirits and giving the nurses (and me) lots of much needed love.

Thank you for keeping us in your prayers.
Ali