Updating on baby josh’s progress

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.

Baby Josh update sad sad news

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.
Thanks guys!

Update on baby Josh!

Baby josh is coming out of hospital either tomorrow or Friday!

He’s now feeding every 3 hours. He’s only taking small amounts but he’s feeding! He’s making good steady progress! The doctors are very happy with him!

The consultant said there is no point in him being in the hospital, he doesnt need to be there! All of the test results havent come back yet from dublin, but the doctor said they were happy to let him go home, and when each result comes in, they’ll call a meeting with his parents.

We’re all so pleased that he’s making progress and can go home! He really is a little fighter!

Only time will tell how bad his hearing loss is, the hole in his heart is, and whether he can see or not. Also, his feet are turned in so there is also that to contend with but the doctors say physio may rectify it! Only time will tell if that is the case or not though!

For now he’s getting to go home to his mom and dad, brother and sister!
He’s a miracle!

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Happy news!

Guys,
It looks like all the prayers you’ve been sending to me regarding my cousin and her little boy are being answered! Thank you so, so much!

He’s doing a little better tonight. He took 35 ML of his bottle. He will have heart and lung issues, but so far he’s responding well to treatment! He’ll be in the neonatal for a while though. Tomorrow he’s having a heart scan to see how severe the heart issues might be.

My cousin is more accepting tonight of his disability. She’s heartbroken but she’s coping well. The neonatal nurse gave her a card with some phone numbers of charities that deal with downs syndrome so she has some support when she leaves the hospital.

Nobody is allowed to see the baby right now, except the parents. No one is allowed into the neonatal unit.

I’m so happy things are looking up! Its good news!

I appreciate all of the kind thoughts and prayers that you’ve all sent! They are really helping!

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Sad news about my cousins new baby

Remember a few days ago I told you my cousin christine had a baby? And we all thought everything was fine with them? Well it wasnt.

When the baby was born he looked ok. But he didnt make any sound. He cried I think at birth but then once in the ward afterwords he never made a sound, or moved. He had tiny ears, and he wasnt feeding properly.

The doctors came that evening, and looked him over. It turns out he has downs syndrome. He is also deaf. His ear canals arent developed properly.

His heart and lungs are very weak too. He’s gone to neonatal and is in an incubator now. We dont know if he’ll make it. We’re hoping he will but literally its hour to hour. He’s very very ill.

If you pray please pray he’ll pull through.

We’re all devastated. Its awful. How something as happy as the birth of a new baby can turn into heartache within hours. Its so so sad.

Please pray he’s going to make it. I know he’s badly disabled, but my cousin can deal with that. We just want him to live.

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to my readers…I need ideas?

so as you my readers all know, I work on friday afternoons with children, in a preschool for kids with special needs.

well its the start of a brand new month, that means me and the other preschool teacher are getting ready to do some new activities with the children.

Each month has a different theme to it, set out by the curriculum that the preschool follows. This month, the theme is growth.

So what I am asking you guys is…

have you got any ideas for activities I can do with the children related to growth? Take into consideration that these kids are between ages 2-5 with most of them being between 2-4 and they have a lot of different issues ranging from sensory issues, to downs syndrome etc.

as an example, the other preschool teacher has already done something with the older age group about the body, and next friday afternoon we will be planting beans with the kids I work with.

so any ideas guys? anyone want to go look on pinterist to help me out?

I’d really appreciate it.

so growth, activities surrounding that theme?
thanks guys!
carol anne

Tour of the preschool I’ll be working at

this morning i went to look around the preschool that i’ll be doing my work experience placement at.

i met the manager, anita, who is my supervisor, I met sonia the preschool teacher I’ll be working with, and I met fiona, the mobility and orientation officer.

i sat and chatted with anita for a while about the placement. she told me about the kids. there will be five kids…all of whom have special needs. she only told me about two of the kids additional needs, because we didnt have time to go through everything. of the two she told me about, one has a visual and hearing impairment, and one has downs syndrome.

she said there are also a set of twins, and she did tell me they are very active, and so can be pretty full on. she told me that the little boy who has downs syndrome, he has a habit of pulling peoples hair, so i will need to tie back my hair to prevent this.

she said some of the kids have behavioural problems. but she said sonia is very good with the kids and has a great way with them. for the first week or two i am to observe the kids and observe sonia and how she manages their behaviours.

anita said after the first few weeks i’d be expected to organise activities to do with the kids, i said i’d like to read to them, and that isnt going to be a problem, there are tons of braille books there. so that will probably be my starting off activity once i get a little bit familiar with the kids.

i had an O and M session and fiona orientated me around the room I’d be working in. its a really well equipped room, lots of toys, books, art supplies, etc. the chairs are all child sized, it will be a bit of an issue fitting in one lol. but i tried it out and i do fit so thats good.

they said if i feel overwhelmed at any point i can take a five minute break. anita also showed me where the fire exits were and what we needed to do if there was a fire.

i’ll have to bench nitro at reception, basically tie him on and leave him there until i am done in class. i did that today, i left him there and he was whimpering and pining for me. he’ll have no choice but to stay there and get used to it, he isnt used to me leaving him on his own a lot.

so i’m pretty pleased. everything went off smoothly. and i cant wait to start on friday.

just so your aware, any future entries where I reference my work experience especially entries to do with the kids where i mention names and behaviours and stuff will be passworded.
if you’d like to read them let me know, but if i’ve already given you my password then it will be the same one so there wont be a change in password or anything.
so if you dont have it, and want to read about my experiences working with the kids, email me for it.
carol anne