Alex and Maddy

Alex and Maddy

Saturday, February 25, 2012

The joys of homeschooling

This week was beautiful in Texas. 70's and Sunny. Just perfect. Early in the week Alex and I decided we would take a day off school and go to the zoo. It was just the 2 of us. We had such a nice time just being together.

Alex is thriving in school. He was so excited this week when I ordered a balance for science. I got one picture of him playing with it at the school table.

Friday, February 17, 2012

Cruising Along

Things continue to move along here. Alex and I quickly fell back into our routine after our quick trip to Houston. We are doing great with school. We are two thirds of the way through are year. We are on track to finish at the end of May. What an incredible accomplishment as my boy pushes through so much to succeed in his schoolwork. Just yesterday he had an 88 question unit test that he once again scored 100 on! I am so proud of the hard work and effort he gives me day after day regardless of how he feels.
We continue to love our time with friends and look forward to each cub scout and playgroup event. Our friends bring so much joy and excitement into our otherwise monotonous days. Alex is thriving with his psychologist who he loves dearly and is holding his own in OT and PT where he is slowly making progress.
Medically, things are going pretty well. Alex's bloating is a little better since we have started intermittenly using the ferrell bag again and are trating his Small Bowel Bacterial Overdose with antibiotics. He has tolerated the decrease in TPN well. We are hopeful we will be able to stop it again in the near future. We had a night where we think he suffered a series of small seizures, but is okay now. We will continue to watch and be sure he doesn't start having more seizures, but it seems to be an isolated incidence.
We had a few rough spots over the last week as Alex's pet fish, Harry died while we were in Houston. Alex was very sad, but handled it pretty well all things considered. Then this past Saturday, my sister had to say Goodbye to her beloved black lab, Ernie. We were all sad as Ernie was an awesome dog. One of the things that has been apparent is how far Alex has come in his year working with Dr. Kristy. For so long a week like this would have sent him into a really hard stretch of sadness and grief over our sweet Samuel. His handling of these losses was so "appropriate" and while there was talk of Samuel it was in a healthy way. It still breaks my heart how much more poor boy has endured both physically and emotionally in his short life and yet his empathy and compassion is incredible. He has been so sweet to his Aunt Jenn-Jenn as she hurts over her loss. He has even offered to giver her all his money so she can get a new dog. I love to see the kindness in his heart.
It hasn't also been sadness though....Alex who has always been a character has been so funny these last few days. I'll leave you with two hysterical quotes from the mouth of my Bug. I wish I could bottle him and sell him. We were talking about our upcoming camping trip with Cub Scouts. He said, "I hope I don't get Poison IV's". We tried to correct him to explain Poison Ivy, but in our house it will forever more be Poison IV's. Then he was joking about Bruce passing out. He told us, "Daddy, if you pass out don't worry. I'll give you mouth to mouth precipitation". Oh boy does he make us laugh!
As you pray for us over the next little bit, I ask that you continue to pray for Buggy's health, but also for Bruce to find a new job. While we are thankful that Bruce is employed, his current situation is very stressful, a ton of hours (most days he leaves before Alex wakes up and gets home after he is in bed) and not enough money! We are hoping he can find something that is an all around better solution for our family.
Thank you for always sharing our ups and downs with us. We love you!

Tuesday, February 7, 2012

Appointments with LOTS of information

We have made it home! We had a great weekend. Alex and I both had fun catching up with our best friends and enjoying some down time. We braved some crazy rain on Saturday to head out to the annual UMDF Energy for Life Walkathon. It was amazing to see hundreds of our friends and fellow fighters standing in the pouring rain ready to do our part to raise money to find a cure. As the walk was about to start the rain stopped and the skies cleared and we were able to walk without getting soaked! What a testimony to the love and strength of so many fighting this disease and their families who were willing to support this cause regardless of the weather.

Yesterday was supposed to be an easy day with two quick appointments. It was a lot of information!

We saw a new cardiologist first. We really liked him. He came in and we talked about Alex's symptoms and history. He confirmed Alex's dysautonomia and scheduled him for a test to look at exactly what happens in his body and the best way to treat him. Your autonomic nervous system controls your heart rate, blood pressure, sweating, digestion, repiration rate, pupil dilation, etc. Alex struggles with many symptoms of dysautonomia and it will be great to have a treatment in place to help in this area. After we spoke for a bit they did an ECG and Echo. During the echo they found an ASD (Atrial Septal Defect) or a small hole in Alex's heart. I was not prepared for this finding as Alex has had numerous echo's in the past without this finding. Unfortunately when the Doctor came back in to tell me we would schedule a closure I didn't ask any questions. Oops! What I do know is that in April, Alex will go to the Heart Catheterization Lab and they will go in through his groin area and feed a catheter up through a vein to his heart and place a closure device. We are unsure how this will effect Alex, but we are hoping it reduces his fatigue, helps his chronic paleness and exercise intolerance. Certainly not the appt I was expecting!

After 4 hours in the Cardiology clinic, we headed to meet with our GI. Our GI had wanted to see us to check on how Alex was doing since the procedure in January. Overall, Alex has done pretty well. However, our two main problems have been bloating and pain. After discussing these symptoms with Dr. N. We decided to let Alex use the ferrell bag for drainage whenever he is very uncomfortable. It is great to be able to give Alex some relief when he is hurting. He looked at his stomach and saw the amount of distention we are dealing with. He decided to put him on 2 weeks of an antibiotic to see if small bowel bacterial overgrowth (very common in kids with poor motility in their GI systems) could be adding to the distention. We are hoping to see some improvement in this area. Since we have been able to stop using the ferrell bag 24 hours a day, Alex is no longer losing a liter of fluids a day. We are going to cut Alex's volume of TPN (IV nutrition) in half and see if Alex can tolerate it. We will closely watch for signs of dehydration and/or weight loss over the next few weeks. Assuming things go well, we will attempt to come off TPN in the next few weeks.

So as you can see it was quite a bit of info for just 2 appts! I am so excited about all the positive changes we have seen in Alex's care over the last year. My hope and belief in all that Alex's life can hold is higher now then it has been in years. I continue to pray for treatments that will improve Alex's life as well as all the other kids living with mito.

Thank you for always praying for us and surrounding us with your love.

Friday, February 3, 2012

Fun Weekend

We are in Houston for a weekend of fun! Tonight we are celebrating our sweet Lauren's 7th Birthday! Tomorrow we will walk in the Energy for Life Walkathon. Monday we have two appointments and then we plan to head home.

Alex continues to do pretty well. At this point he has stopped licking all foods as it really bothers his stomach and causes quite a bit of pain and nausea. However, he is pushing himself to continue to make it without a ferrell (drainage) bag. He is doing a great job with school and his behavior has been fabulous.

This week we had to get new tires for my van. I hate car touble, but we were told it was not safe to drive by two different places so it had to be done. Oh well, our safety is more important then money!

I will update after our appts!