RIH CHANDLER RICHARD SLACK

I would like everyone who is expecting or if they child as similar problems to Chandler's that they are aware of the gene FLNA that is very rarely seen. Because none should have to go through what myself an family has went through.  No child should have to go through what Chandler went through.  He fought hard every day for his life. An yes we did what we could to make him comfortable an make sure he enjoyed what he could.  It was still a horrible way to live. He knows he w as loved very much an will be missed everyday. During his last few hours.  His nurses an I did what we could for him. I held him three hours before an made sure he knew I was there for him an that it was OK. I don't wish this on my worst enemy.  Losing Chandler is the worst thing that has ever happened to me. I will forever had an empty place in my heart.

Please don't hesitate to ask questions an if you feel you are being blown off or your concerns are going unanswered than keep asking. 

RIGHT CHANDLER RICHARD SLACK!!! MOMMY LOVES YOU BABY BOY AN MISS U SO MUCH.

September 5th 2012

Well as i promised I would update everyone.

Chandler passed on sep fifth at five pm. He was very comfortable an loved. He fought hard an had a good year. We made sure he experience what he could an made sure he was involved in family outtings. Chandler passed from two infection in his lungs an one in his urine.  The antibotics weren't working anymore. 

Chandler will truly be missed an loved everyday. He was a miracle baby an he will never be forgotten.  He touched so many people an taught everyone so much. I love you my sweet baby boy!!! RIH CHANDLER RICHARD SLACK!!!!  MOMMY N DADDY N BROTHERS LOVE YOU!!!

Happy birthday chandler.

HAPPY FIRST BIRTHDAY CHANDLER RICHARD SLACK.  sorry you have to spend your first bday in a hospital on life support.  But you made it to celebrate you birthday.
Chandler was admitted to u of m hospital on August 31 2012 because he wasn't responding an he was stopping breathing an having trouble breathing.  On September 1 2012 chandler was stopping breathing every three minutes an would have to be bagged to come back. So he was put on life support.  He was also started on fentnal for pain. On September 2nd 2012 we talked to doctors an decied to stop all medication except pain an anxiety control. We also decied to pull life support.  So...christina, aunt miranda,kaeden,nana,papa,aunt steph, uncle jorge an Dante came to see him. We had a nice time with family spending time with chandler. At 11pm we pulled life support..  As of right now chandler is having trouble breathing but is doing alright on oxygen an fentnal. We are just waiting for him to get weaker an weaker. We are loving on him an making sure he is comfortable.  Well this is it for now till later.

We love you chandler Richard slack!!!

8-3-12

Well we have finally moved into our own place. Chandler likes being back in his crib. He is starting to get sick again.  I feel so bad cause he is so miserable an i have to work when he needs me. Kaeden enjoys having his own room again. We found out that Chandler is getting another mri, they want to fix his feet an his cleft. We also found out he is only deaf in one ear which is great.  We dont know how well he can see thou. He isn't real grabbing things anymore, an he trys to sit up some what but not so much anymore. He has started therapy. So hopefully we can get him out of his bed more. We have started repositioning Chandler every two hrs because he isn't doing anything an we r worried he may get sores from laying so much. His heart rate an respiratory rate has been increased lately.  Hopefully we get mri soon so we know where his brain is. The doctor seems to think Chandler won't pass from his brain. That he is going to get sick an not be able to get reid of it. We are planning Chandler first birthday.  It is so hard because he ia going to be a year an they keep saying he wont. I want to give him as many experiences has a can an i hope he makes it to enjoy his first birthday.  We are also talking about different pain meds because his body is getting use to the morphine an i feel horrible having him on meds but if i don't he will be in constant pain. I feel good that i am doing everything to make sure he is comfortable an has a good life. But it still bothers me he cant enjoy things like other kids an he cant do things like other kids but all we can do is work with it an do our best.

July 7th 2012

Well fireworks went good. Chandler did amazing he liked all the bright colors an he didn't jump once. He stayed awake for the whole show. Chandler an kaeden got to visit with family.  Chandler went to his first cookout at uncle dels. He got to visit an meet new people. He stayed inside most of day cause it was too hot outside an he would start having seizure if he over heats. Both boys did better than i thought they would.  Chandler loves glow sticks. He wouldn't let the glow stick go.