it taylor. i skard. i no lik dis nite. i bes havin bad memrees. it no fun! i so fraid. i want a hug! i need eileen! i need sumone! i need dis nite to end! i jus ned a hug and sumeone ta tel me i gona bes ok!
it bes windy oteside! i skard of the blowin winds!
is der sumeone around ta tok to?
im so sad. i been feeling sad all day. i been anxious too. dont know whether to call eileen or not. want to but dont know if I should.
just dont know what to do.
maybe will go make some christmas cards and watch something on tv.
distract myself hopefully that will work.
if not i’ll text eileen. she’s probably busy though and I shouldnt bother her.
Em age 12
WE’RE STILL NOT DOING TO GOOD! STILL NOT OK!
BUT WE’RE TRYING!
DOES THAT COUNT? EMOTIONALLY WE’RE SPENT!
WE’VE BEEN AGITATED ALL EVENING!
CRIED A LOT TOO!
WE’RE JUST A MESS! A COMPLETE MESS!
CANT SHAKE THIS!
I DID HAVE A NICE BUBBLE BATH THOUGH WHICH DID HELP A LITTLE!
NOW I’M GONNA MAKE SOME TEA! SIP ON IT AND TRY TO SELF SOOTHE!
THIS IS THE LONGEST FEW HOURS I’VE PUT DOWN IN A WHILE!
I’M READY FOR A BREAK NOW!
WHEN YOUR BLUE, WHO CAN YOU TURN TO?
YOUR FRIENDS, THAT IS WHO!
YOU’VE ALL BEEN SO AMAZING! THANK YOU THANK YOU!
WITHOUT YOU I DONT KNOW WHAT WE’D DO!
I havent talked to my partner jess in weeks. I wish I could. I have tried calling her. But the facility she’s at they dont seem to answer the phone. I guess I’ll just have to keep on trying until someone answers it. I get disheartened though. I’m sure she thinks I dont care, or I cant be bothered to call. Nothing is further from the truth. I miss her so much. I miss all of their system. Its hard though when she’s in that residential facility. Things have changed so much, our relationship has changed so much. She’s been there almost 5 years now. 5 long years. Thats a long time. And honestly? I dont know if she’s ever coming out of there. I just dont know. She doesnt know either. Part of me thinks she wont. Its very tough to see her be in there. Our kids dont understand why their mommy, because jess was a mom to them, they just dont understand why they cant see her, talk to her, hear her read to them. Its heartbreaking. I hope we get to talk soon. I just miss our long talks, where we’d put the world to rights. Our deep conversations. I miss those.
So I have a further progress update on how baby Josh is doing.
Some of his tests came back, and it wasn’t good news.
He was born without the glands that produce hormones, this is going to obviously cause him huge issues. The doctors put him on medication, and he’ll be on it for life.
Without this medication, he wouldn’t produce any hormones, so he wouldn’t grow.
They still don’t know if he’s deaf, or blind. But they do know that his level of downs syndrome is the most severe one that there is.
Its all so sad. One positive is that he’s feeding better now. He’s taking a few ounces at a time now. It exhausts him, just the action of sucking the bottle. But he’s doing it and that’s really positive.
He’s a little fighter. Please continue to keep him in your thoughts and prayers, there is still a very long road ahead for him and his parents.
I just found out some sad news about baby josh, my cousins little boy. He’ll be three weeks old on Tuesday. They did the heel test, that babies get when they’re born, 3 times now, and on Monday they’ll be doing it a fourth time. The reason being that his bloods and that test, showed up some abnormalities with his thyroid gland, the levels of something are extremely high, and doctors have said due to this he is going to have a lot of issues. He could be severely brain damaged, he could be blind, deaf, he also has the most severe level of downs syndrome possible. The tests for that already came back positive. If he’s severely brain damaged, he probably wont survive, but the doctors really aren’t sure, his digestive system is also effected, when he takes a feed, he is exhausted, and sleeps for a long time, the mere fact of taking the bottle exhausts him. The doctors have said that if any of us are going to come into contact with him that we need to have the flu jab. They’re going to put him on medication for 3 weeks, to try to calm down the levels of whatever it is in his thyroid gland that’s high. Then, after 3 weeks he has to go to Dublin, to the big childrens hospital up there for a deep scan, a scan where they’ll put radiation into his neck. Its really sad news. I’m heartbroken for my cousin. If you pray please pray for their family, either way the outcome for him wont be great, no matter what happens. All we can do now is hope. Hope for the best for him.
Prayers and supportive thoughts would be very much appreciated.
liz is fraid
liz is sad
liz is skard
liz need a hug
liz no wants go sleep
liz be fraid of the dark
liz not ok
liz crying now
litle liz age 5