Rewind Time!

So I know I haven't blogged since before June. Well there has been a lot that has happened. Lets Start in June . My dad passed away on June 16th, he was the young age of 51! I being the oldest got all of the responsibility of taking care of everything. Well we took Tristan for family visitation at the wake (Sunday)for 1 hr. Then we had my husband's parents come pick him up. By 2am Tristan was very sick and stayed sick . His infusion wasn't until the end of the week and he was getting sick and staying that way. Well infusion day finally came and thank goodness, but by this time he was really in bad shape. After Dr.K examined him he decide that they need to raise Tristan's infusion level to  hopefully help him get better. Mind you this whole time I feel HORRIBLE ! I took my son to my dad's wake for just 1hr during family time and it resulted in him getting a larger dose of infusion levels PERMANENTLY! I though my son should say goodbye to his Grandpa , boy was I wrong! Never AGAIN! I took about another week for him to start to feel better. This was June Infusion.

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!!

July and August Infusion !

They both went OK. I am just know getting things back in order. It's been a rough couple of months . Hopefully once I get back into the swing of life (Which should be very soon Sorry) I will make a very long post. Bare with me just a little longer :)

God bless everyone !

Huge update coming up!

Hello, Everybody I will be doing a huge update coming up soon. Tristan is having an infusion today July 23. He also had one in June Which we now get a larger dose of the infusion now. I will explain all that in the update. It's been crazy here . MY dad passed away as well as all kinds of other things!

I will be back to post soon

Infusion Updates

Infusion Updates coming soon for April and May! There have been no changes in anything . So I will be updating soon. Were trying to finish up his homeschooling work then I should have some time to type everything up .

God bless everyone:)

Thanks for your blood donations and all your prayers !!!!!!

Picture Mania

It's been SOOOOO Long! Were going to go backwards for a flashback!

Ok I know I'm such a very bad blogger. For that I am truly sorry.. I have had very many things happen. Let see where to start ?? Let's go all the way back to Tristan's Surgery on Jan 21.

Tristan had his tonsils removed.. His tonsils have been infected with a bacteria most of his life. His tonsils were very badly infected. They were covering most of his throat and were trying to move into his gland in his neck . They were actually pushing his gland in his neck out which made it seem like he had compacted glands. Thank goodness they weren't compacted that would have been very painful to fix on top of everything else. Plus it looked like he had some damaged tissue.
Thank goodness when they did the surgery that once they took out the tonsils everything that was wrong went back to normal because it was all tonsils . Everything fixed itself when all the tonsils came out. Thank you God for making it all tonsils and all the other work didn't have to be done:) The Tonsil recovery was bad enough. Lets start after surgery...
We were in recovery and Tristan start getting sick and vomiting every where about every 5 mintues. The nurses and doctors where worried that Tristan would reputare and start bleeding which would require another surgery. So We did what we know how to do Pray that he didn't start bleeding. Which I can say worked very well Tristan never bleed at all. We had to spend the night in the hospital because he kept vomiting all the time. They gave him medications to keep from vomiting which didn't work at all . Nothing seemed to work . So once again We all (nurse,doctors,family) Starting praying that he could get some relief and be able to sleep and heal with no problem. Finally he stopped . The next day we were released . We were given very detailed instrustions on what to look for and what he was and wasn't suppose to do. One any bleeding in thorart or nose come straight to back to hospital for more surgery. Two Tristan is not do anything except lay down or sit up no running, playing rough etc., jumping etc. for two to four weeks depends on his healing. Basically watch tv and play his video games. Try telling this to a child who is very active . Nothing but super soft foods like liquids for 4 wks. He wasn't thrilled with
So now where at home and it's not even been a full 24 hrs after leaving the hospital were having issues again! Let's do this from how we experienced it. It's 12:45 am were just getting ready for bed(It's been a very long day) Tristan's sleeps in our room when he doesn't feel good or has had surgery or infusions. Were tucking him in on his pallet he's made. (this is at the end of my bed ) Turn on the tv and get in our bed. All of the sudden Tristan says" he doesn't feel good." I say" ok what's wrong. I hear nothing " I say again " Whats wrong?" I see my son stand up with a tear's rolling down his cheek and he's tapping on his chest .. then I see his stomach all sucked in like he doesn't have one or it's up in his rib cage. I realize he's not breathing and can't breath . We quickly jump into action . We give the inhaler doesn't twice doesn't work at all ... I set up the breathing machine with steroids in it give that 4 times and finally things start looking a little better he can breath but still not like he should. I call the hospital and let them know where on our way back and whats going on. We get there and are there for over 4 hrs and they have no clue why this happened or why or have a reason. This isn't the first time my son has quit breathing or had extremely bad breathing issues. Thankfully we are very calm and level head and have been trained on what to do. So with no reason on why this happened we were sent home with more things to watch for. It's 6 am in in the morning and we finally get to sleep. Tristan is finally sleeping . I think the rest of the night it seem like we slept in shifts or with one eye open so to speak. Well the rest of the day went ok..... Now it's time to go to bed again. Once again we put him to bed. For some odd reason I woke up at 3 am I couldn't sleep . I hear my son making this awful wheezing noise So I go to the end of the bed to check on him as I get to him I see he's dead asleep and his wheezing is getting worse and worse (like he's gasping for air) so I wake Dale up and we get his breathing machine set up with the steroids I put the mask to his face . At this point Tristan is still asleep and having breathing issues. We couldn't get him to wake up. After 3 rounds of steroids he finally wakes up but has no clue whats going on or why this is happening . So once again I am talking to the hospital and they have no clue whats happening or why. After about 40 min Tristan is back to normal and ready to go back to sleep . Want to talk about not going back to sleep. Now If I hadn't been awake I don't won't to think of what might have happened or if he had been in his room on the other side of the house. Or sleeping very well for the next couple of weeks.

Well that was all the nightmares that happened . After these nights Tristan Started having chest pains 5 to 6 times a day for the next couple of months. We have went to a heart specialist to make sure nothing is wrong with his heart now. Thankfully everything has came out fine. They haven't found out why he's getting chest pains. His heart looks good. But still no answer on why the chest pains :) Thankfully it's April and I can say they have finally went away but, he does still get them every once in awhile but not every day. There was many other things that happened during Feb-April but that would be like reading a book.

Now It's April and were back to his normal self:) We did have infusion in Jan, Feb, and in March we had 2 infusions. Our April Infusion is on the 30th of this month now were all caught up to speed. I am very great full that my doctors have shown me what to do and that they have enough confidence in me that I know what to do and how to handle things.

I am sorry for the great detail but I wanted people to see or understand what it sorta like in my shoes. I am thinking of posting what it's like a day in my life . So people can see how much work goes into having a child with medical needs. So next time you meet someone with a child with medical needs , you want judge them or wonder but maybe you'll take the time to talk to them and ask how there day is going. I have learned from other who have children with medical issuse that some times they just want to talk or to have someone tell them there doing a good job.
So my challenge to all you next time you out and you see someone like us I challenge to ask them how there day is going and tell them god loves them and they are doing a wonderful job. You'll will leave them with a smile on there face and yours.

I will post some pictures in another post

So 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!!

Infusion 15,16,17 (DEC, JAN, FEB)

Well the infusions went good. They will keep going every 4 weeks. Now I should be able to get back to details . On every infusions . Now that things are not crazy. Tomorrow I update about the surgery that Tristan had in January. We just had another infusion ON March 5th and we have another one ON March 30th so I will up date those two infusion together since they are in the same month.

So 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!!