JULY -- Was a very busy time trying to run around and get all my dad's business taken care of, and getting his things prepared . I was barley home it seemed like . Thank gosh my husband was able to be with Tristan and Lilly. Well with the large dose of the infusion more things start to happen .. We noticed that the week before Tristan's July infusion he started getting extremely tired and his whole body hurt , plus all his energy is drained. I know that more things happen to him the large the does goes. As of June we are at a 1 and 3/4 of a bottle . Which is really really close to the 2 bottle max. Which worries me .
Some good things did happen in July! Seemed like every time I was at my Dad's house cleaning it out my cell phone would ring. Make-A-Wish would call me to tell me that Tristan had been approved for a wish. They also said they would be in touch very soon. Couple weeks went by and I was back down at my dad's and they called again to schedule a time to come meet with Tristan. The other good thing that happend was the Dr. K . walked in a said "let's take Tristan off his antibiotics and see how he is plus I want you to expose him to some people" I say " after what we just had happen last month are you CRAZY!" Dr.K " You can yell at me if it doesn't work! We need to see if him being on the large dose of the infusion is going to be able to take him off his antibiotics. This will also tell us if he will ever be able to come off them." my response" o.k. he's been on those since birth. I trust you but if get sick then what happens ? Does the infusion level go up again ? " Needless to say two days after his infusion we took him to Six Flags he last 4hr and started feeling sluggish so we left. I will say the park was pretty empty. After the next day Tristan seemed fine . Which was great. Couple days later he was sick and stayed sick!
August -- Infusion came and the experiment was over Tristan was put back on his Antibiotics permanently! Unless they think they want to try it again . Tristan also started 2nd grade in his home school program. Tristan was also sick all month long he had something wrong with his eyes that they couldn't figure out what type of infection it was along with a bunch of other things.
September -- Infusion went as normal and things started to finally look better .. or so we thought. Tristan was test for his Cholesterol in August and we got the results in September. His bad Cholesterol is way way to high over 200 in the upper 200 and his good Cholesterol was below 30 . Tristan has been having chest pains again to so we are will be going back to the Dallas Heart Center and to the LIPID heart Doctors over the next couple of months. They will be testing him for the heart condition that my father had just to be safe. Good news in September Tristan got to meet with the wish granters to find out his wishes. It was a very surreal moment. You never know how your going to feel. I have very mixed emotions about all of the stuff with Make -A-Wish! A couple weeks later we find out that Tristan's wish to go to DISNEY WORLD will be granted. In November we go to DISNEY! We will be staying at GIVE KIDS THE WORLD which isn't for the general public. It's for wish granting organizations . Tristan can't fly so we will be driving out to Disney.
Well thanks for being patient and listening to are life in rewind short version style. God bless !
God Bless Everyone who is praying for my son and family
God Bless all the people who DONATE blood and plasma!
We ARE VERY GRATEFUL!
Please people keep donating that blood and plasma ! You are helping my family. I am very grateful to everyone who has ever donated. God Bless you all in every way!!
