Well Chandler is back in u of m. We are on 11th floor this time. He is having increased seizures an his oxygen an heart rate are dropping again. He has had about 14 so far today an he keeps having them. They said he is only supposed to stay tonight but i have a feeling it is gonna be longer now with him dropping so much again. They are watching his heart for some reason too don't know why just yet well give updates soon.
SO..i think chandler is sick again. We tryed him off antibiotic an now he is running a fever. I hate that he has so much medicine it drives me nuts. This is not what i wanted for my baby. I also found out today my poor baby is scared of thunder storms. Every time it would thunder his body got real tense an he started crying i just cuddled him an laid down with him. He is finally sleeping now.
So if anyone has any imput or experience let me know?
I have court on Tuesday because the apartment we live was not suppose to be rented out because of the condition of foundation an heater an electrical an some other problems which i didn't know when I moved in. It was shut down last year an i am not sure what i should do really. I am going to court an giving them everything thing i have the pictures documentation on problems. An paperwork of the city. But idont know what all i should say or what not to say i guess. Its my first time going to court!
Well i will update everyone on how it goes.
Well chandler,kaeden,karen,an jimmy gave me a good birthday. My mom helped too. Chandler an kaeden played at karens house an drove lighting mequeen. Chandler loved it his eyes got so big. Chandler has not sleept really at all past couple days. He keeps trying to sit up by himself he crunches his own body, its cute. He has two top teeth coming in. He is still having a very hard time with his bowels. He is getting three laxatives an still hasnt went an i feel so bad. He doesn't seem fussy or anything. He just lays there an stares at people,outside,tv ,seahorse. He also has enjoyed watching the birds. I dont know how well he sees them but he likes when they sing. He also got to see my bestfriend kita a couple days ago. Kita is a dog an she is always watching him an making sure he is ok everytime she is here it is so cute. Chandler is almost nine months an i try to not think about him passing because the drs say before a year. But he seems like he is getting better it is so hard to not get your hopes up. He has been on oxygen more lately which is a downfall. My oldest son kaeden has started asking scary question that i have no idea how to answer. He asks how is baby chandler gonna die, when is he gonna die, where will he go, when will he come back, all i can say is idont know kaeden doctors think chandler will not be here on his first bday. Than he says they are wrong they have sassy mouths an that chandler will be five with him. I take it one day at a time an what ever happends i deal with that day an sometimes the next. But more updates later. Hope everyone has a good hoilday weekend.
We went to a family cookout at nanas house. Chandler cuddled with everyone and he was awake allday. He went outside an played in a kiddy pool the water was too cold for him,he didnt like it. He loved being outside in sun cuddling with uncle Jorge. He seen papa George,Aunt Steph,Dante,Aunt Miranda,Ali,Kaylee,nana,Aunt nikki,tony. He visited an cuddled. I am glad we can take him out and he can enjoy family time an being outside. There will be more blogs to come.
We went to the beach as a family. Chandler loves being out he was awake the whole time. He loved the movement of the waves. He liked the water once he got use to it. He liked the feeling of the sand in his toes. he had fun but he over heated so easy an started having seizures but once he got cooled off he was good. I am glad he enjoyed the time out.
<p>Well, i had a good mothers day. Chandler,kaeden,Nikki,and me went out an enjoyed the nice weather. Chandler went in his first swing. He keept trying to fall asleep. He loves napping in the sun. He loves being outside. He watched his first baseball game. Kaeden an Chandler got me a flower for mothers day. Jimmy made us a good dinner. Chandler has been teething so he a little crabby but he is still fun to do new things. Even thou he doesnt smile or talk i can still tell when he is enjoying something even thou the doctors say he cant enjoy anything because his brain doesnt work like that. I am his mother an i have learned what his face or body actions are like when he is upset or content or happy. Its a mother son bond thing. Lol. It still bothers me when people see him an the wisper an look over. Most of the time they end up coming over an talking to him an asking what's wrong with me. it just amazes me how rude but nosey people get. Than.when i say he has a rare disorder <br>
The look on their face changes 100%. Chandler is speacil in his own way. He gets enjoyment from things other babies dont. He loves laying in the sun. He loves sitting by river in the grass just watching the water. He seen his first bird also. His eyes pop wide open when the bird started chriping. Last week he also got his first puppy dog kiss right on his cheek from nakita. my best friend Nikki Brought her dog over an they loved eachother. Everytime Chandler made a noise she was right there making sure he was ok. Everytime someone went by him she was right there. When she kissed him he moved his head up to look at her.an his eyes got huge. He is also on an antibotic permantly because his body is getting sick real easy an cant fight it off. He isnt having seizures anymore untill he runs a fever or stops breathing. Well that's it for now.
Well Chandler was off antibotics for two days an he is sick again. :(
He is running a fever again, more seizures an stopping breathing. We have had him on oxygen allday. He is doing better on it. Its hard causd he gets better than gets worse again. I talk to u of m tomorrow. To find out what we need to do. They said today he might have to be on antibotics permanently. He has been sleeping pretty much non stop. He went ran errands with momma an Karen.yesterday. He is just like a cat. He loves to nap in the sun. We also found out Chandler likes to watch.turtle tale movie yesterday. The pic of him in bouncer he fell asleep watching it. Will update everyone tomorrow.
Chandler has been sleeping alot the past two days. He doesnt even wake up to eat. Both his older brothers are here so i am surprised he isnt being.woke up. I think he could sleep through anything. He went out to lunch an a little shopping today. He liked when the blew his hair. He would move his head up an start to open or close his eyes. He also wants to eat so bad. He held onto his bottle last night an was trying so hard to get milk out. Well thats it for the past couple days!!
Well so far in may
Chandler has been awake all day during the day, he is still being sucktioned alot. He has went to nana's house twice. He has visited with uncle Jorge, Aunt Steph, Aunt Miranda, James, nana, Susie, Ali an Kaylee. He has enjoyed being outside. But he doesn't like the grass i learned. He likes not having to wear socks on his feet, i think he stops fussing once they come off. He has starting trying so hard to repeat what you do. Dad an i have stuck our tounges out at him an he trys so hard to do it back. He is gaining weight good. He weighs 12lbs 8Oz 23inches long. the fingers on his left hand are so fat its cute. He also went bowling for the first time. He loved the lights, he looked around for little while an went right to sleep.
Since we have been from Mott Chandler has been sick pretty much whole time. He has been on various antibiotics. He has also continued to have seizures so we have added meds an went up on meds. We also started getting private duty nursing care in the home..so dad an i can look for jobs an go to appointments an clean an also get out. Hospice comes in twice a week to check him over an check meds. Doctor at Mott that is following Chandler very closer thinks his time is coming closer but said he cant tell us exactly. We have deicided that we are not going to take him back to stay in hospital if it isn't absolutely necessary. It is so hard to make decisions in his best interest because we have no idea what will happend.
Chandler Richard Slack
He has been a miracle since he was born. He is a little fighter. He has had a tough time since birth but he is making it through. He has been such a joy. Even though he doesnt do normal baby things. He has taught everyone around him to enjoy the most simpleiest littliest milestones he has made his little half smile brings tears to my eyes almost everytime, it only happends once in a great while. when he opens his eyes ever once in awhile, it lights up a room. He is a cuddle bug. He has brought alot of people closer an taught everyone whats important. The people that have distanced themselves, its only their loss. He has forsure made me see who cares an we doesn't. I love my little Chandler man!!!<3
<p>On march 2nd Chandler was re admitted to Mott hospital but in picu instead. He was having alot of destats. His heart an oxygen keept dropping. They keept bagging him because we didnt know what was causing it. They put him on cpap an started eeg. Which showed seizures. Some caused him to stoo breathing.an some started because he stopped breathing. They didnt think he wasnt going to make it home. They did an emergency surgery for a trach because his airway keept closing off. he was on vent for a few days after because he didn't want to breath on his own. Finally got him off. Than we had a meeting with all doctors. They said that he had less brain activity an they give him six months or less. They said the seizures are damaging more brain an there isnt much left to damage an they think eventually his brain wont tell his heart to keep Beating or him to keep breathing. We were sent home march 17th.
<p>Chandler was born 9/2/11. His due date was 10/2/11. He weighed 4lbs 14Oz, inches long 7:22am. <br><br>
He's was an emergency csection because his heart rate keept flat lining an he wasnt moving. This went on for a month before he was born but doctors said he was fine. When he was born he wasn't breathing so he was intabated. He was sent to another hospital with a nicu. The doctor came an told me in recovery it didn't look good. He wasnt breathing, he was missing fingers on one hand, he had clubbed feet, he had a cleft plate, an his bottom jaw was too far back. During his stay at nicu they told us his brain was Moshe, he was having seizures, an he had a chromosomal disorder trisomy 18. That he wouldnt enjoy life an he wouldnt live off ventilator. They gave him 1% chance he would. On September 5th we had him baptized an took him off. He had a few bad moments but pulled.through. His oxygen an heart rate were very unstable. On September 19th he was sent home on a heart monitor, feeding machine, an sucktion machine. On September 26th he was readmitted to the picu because he was unresponsive, stopping breathing more, an his heart rate was dropping more. on September 28th he was flown to Mott childrens hospital because Saginaw didn't know what to do for him.
During his stay at Mott they did an eeg, which showed no seizures, they did an MRI which showed, over half of his brain was dead due to strokes while i was pregnant. They said they give six months to a year. we were sent home with hospice an the biggest concern was keeping him comfortable. hospice came three times a week. He started seeing all kinds of different speacility doctors. The genetics doctor found out he doesnt have any chromosomal problems but a mutated gene flna they said they never seen before so they had to do some research. Chandler started doing things he wasnt suppose to so they said they were gonna think of him as he was gonna live a full life. So we started planning surgerys.
