Sorry it has been so long since I have updated. The last couple weeks has been kind of up and down.
I'll start with the good... Gramma and Grampa (Bruce's parents) came to vist for a few days. We had so much fun. We stayed really busy while they were here. Gramma came to PT to see Alex work. Gramma and Grampa came to Horseback riding. And we all went to the Dallas zoo. It was a really nice visit. I was so glad they got a chance to spend some quality time with Alex.
The other good news is that we ordered Alex a cooling vest and it is AWESOME! As most of you know. Alex has some pretty serious temperature control issues. In the past if it was hot out he would "wilt" (for lack of a better word). Alex does not sweat so his body does not cool and he loses all energy. Anyway, we first tried out the vest on Thursday at riding. It was the first week we didn't have to stop a thousand times for water. Then we used it Friday at the zoo. I was amazed. It was 95 degrees out and Alex did great. His face didn't even get very flushed. I have already ordered another vest. I really feel like this will allow us to enjoy our summer and not stay cooped up inside. Alex already knows the routine. When we are heading out, his first question is "Am I gonna have to wear my vest?"
The last positive...We love Ms. Fran (our nurse). She and Alex has formed a really nice relationship and he looks forward to her coming. It is really nice for me to know that I have 2 days where I can get some stuff done and hopefully get a few mintues to myself. She has already become such a part of the family. She is missed all weekend long!
Middle ground... Right now Alex and I plan to leave on Thursday for Houston and return on Saturday. We are scheduled to see GI, Dr. K and have a hearing test. We were also supposed to see endocrinology, but there has been a mix up (see below). We are a little concerned about the hearing test. Most kids with mito do fine with the kind of sedation that is used for the test. BUT as Dr. K said, we know how Alex is!!! So our plan is to leave after the test. If he even "bats an eyelash funny" he will be admitted overnight for observation. We have just had too many problems with anesthesia (which Dr. K has witnessed first hand) to take any chances. His vitals signs tend to go crazy, he spikes fevers, and his stomach shuts down so we can't feed him. Anyway, all of that to say, we hope to be home Sat, but we'll see.
Now for the bad... I'll start with the easiest. Alex's first appt on friday got cancelled. We are trying to get it rescheduled right around our visit so we can still see the Dr. I should know more today. It just means we will have to stay in Houston longer then anticipated. Alex and I will most likely be staying at the Ronald McDonald House. The one time we stayed there Alex LOVED it! They have a huge playroom. I had a hotel booked for this trip, but Alex has begged and begged, So I gave in. If we have to stay through the weekend, we will have friends there with us.
A couple of weeks ago, I decided to trial a food. We have not trialed anything since last July and I just felt like it was time. We first tried broccoli. He loved it. He ate it fine for about 4-5 days. Then we noticed he was having trouble swallowing. Then he stopped eating it. We retried it and stomach aches prevailed. So we decided no go. Then we decided to trial Cranberries. Alex also loved them! He ate them for about the same amount of time. I noticed he was sleeping a ton at the beginning, then he could not sleep. He was waking up crying several times a night. And he started complaining of stomach and leg pain. I had a feeling the cranberries were the cause, but was going to push it a little farther. Well, On Thursday May 1st. Alex woke up ate some cranberries and started crying 30 minutes later. he said, " Mommy, I don't think I should eat those anymore. They always make my belly hurt really bad." So they were gone also. It has taken us about 10 days to finally get back to normal. It has been a rough few weeks with Alex just not feeling well. Bruce and I have decide that we are done with food trials for the forseeable future. Alex is content with his 3 foods as any of you who have spent time with us can atest to. It is the preconceived notions of other adults that Alex needs to eat a more varied diet. He does not ask for more. It is really hard on him physically and emotionally to fail a food. It is hard on all of us to suffer through the pain of the following weeks. I feel like the cons outweigh the pros at this point. If Alex gets to a point where he really feels strongly about trialling something else we will reconsider, but for now this is it. I am waiting for a final blessing from our GI, but feel very confident that he is going to be in agreement.
Finally, a friend of a friend lost a little girl to mito last night. She was 6 years old. This has hit really close to home. Bruce and I are both struggling emotionally. It takes us someplace we don't want to go. We cannot fathom losing Alex so young. The scary part of mito is that there are no answers. Alex could live to see 80 or he could be taken from us at any time. It is our reality and it is not a fun thing to stare in the face.
So many prayers needed...Most importantly pray for Amie and Doyle (Audrey's parents). That they can find peace in knowing she is in a better place where she is finally pain free. Pray for Bruce and I as we wrestle these tough emotions and fears. Pray for Alex to keep fighting with his corageous and carefree spirit. Pray for safe travels this week and appoointments that fill us with knowledge.
Thank you for all the love and support you surround us with.