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Post by kimnz on Feb 1, 2005 12:55:54 GMT -5
Hi there,
It is so wonderful when we get to hear of some of our (your) children doing well with speech, I am so happy for them and their parents.
I am wondering (bearng in mind that each child is different and they all come with different problems) generally speaking - what are your tips and helpful suggestions for helping children at the 4-7 year old level for learning to speak in longer utterances and pronouce words clearly??
Some, do not have access to speech pathologists with experience in the area of children with Down syndrome and I would love to hear some suggestions. I am sure that many of you would have frequent SL therepy and could help us all.
We ourselves have been using the written word and pictures. I also make sure that Jordan can see the way I prounounce a word and I tend to emphasise the sound that I am wanting him to say eg I point to my bottom lip and exaggerate the the "ffff" sound for a word begining with f.
I need to know more.
Kim
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Post by kimnz on Feb 1, 2005 12:58:13 GMT -5
Hey that is wonderful news Wanda and Mia, I am so happy for you that you will be getting the services that your baby deserves!
Kim nz
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Post by kimnz on Jan 30, 2005 13:36:27 GMT -5
Hi Julie,
I am Kim from New Zealand and have only just joined this site too! Isn't it great?
There is lots of information in the health area from people who have been there and done that before. My little boy is Jordan and he is six years old, we live in Whangarei.
I have passed on the information to the editor of the national editor (magazine) dsa in New Zealand as it is so good. Where did you find out about Uno Mas?
Kim New Zealand
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Post by kimnz on Jan 28, 2005 22:01:26 GMT -5
Hi there, I have just been looking around the site and I think on the part that talks about "who's who on Uno Mas" may have had postings that are suppossed to come here to this part of the site. I can't get in to send a message to the people as it is for administrators and moderators only but there are people introducing themselves and wanting contactiing. I thought I would let you all know as I am only new here myself. Maybe they could be redirected.
Kim
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Post by kimnz on Jan 28, 2005 21:38:43 GMT -5
Thank you Debbi for the welcome.
I have enjoyed going through this bulletin board and reading the postings. I cannot seem to find a place on the bulletin board for posting photos, some of you have special pictures of your child when your postings come up and also a couple of you have them on your bulletin board comments. I would like to put Jordan's up too. I've clicked the above insert image tag but nothing from the photos area on my computer comes up. Where do I go??
Thanks, Kim
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Post by kimnz on Jan 30, 2005 13:30:14 GMT -5
Thank you all for the warm welcome!
It is so nice to be part of the group especially since living so far away from everyone, you have been very kind.
I also posted a message in the health section and a couple of people repied to that too.
From Kim in New Zealand
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Post by kimnz on Jan 28, 2005 14:37:25 GMT -5
Hi there, I am Kim from New Zealand. I have posted a couple of times on the message board and put my story on the "our stories" board. I haven't been in Uno Mas for very long. My little boy is Jordan and is 6 years old. He has ds, Hirschsprungs disease (bowel) and my accident they found out he has Pethes as well (hip). He is going into hospital the end of February for removel of his rectum and part of his sigmoid colon. I am scared and frightended about this. He seems to be doing fairly well apart from these two problems. Golly you miss getting the heart problems and end up with other ones instead. I have five children a 21 year old, 18 yr old, 17 yr old and 12 year old.......then along came Jordan just when we thought our family was finished. Thank you for listening to me. Kim
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Post by kimnz on Mar 26, 2005 0:09:09 GMT -5
Hi Kim,
I nursed our youngest little boy Jordan (almost 7 now and also has ds) for two years! I also fed our other four children. Jessica (our third) being fed the longest as she had asthma and eczema.
We had constant problems with obstructional apnoea. So if we didn't get a burp up the milk would come up and he would stop breathing for a little while, not to the blue stage at all. Although Jordan would often tire (and he didn't have a heart problem) he would not become breathless as your little one seems to.
Do you think it would be worth mentioning this to a medical person in case it is related to his heart? I note you say he is on oxygen and I presume it may be related to this?
Does it take a long time to feed him? For Jordan it did take quite a while to feed him as he suck was not super strong but definityly strong enough to get a good feed. That's why we were so vigilant in burping him as if he brought his food all back.....I had to feed him all over again.
Congratulations on the birth of your sweet baby! Apart from the feeding, how is he/she doing?
Take care
Kim nz
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Post by kimnz on Mar 31, 2005 21:23:22 GMT -5
When we were down in Auckland (for Jordan's Hirschsprung's operation) we were suppossed to have got coeliac markers (we spell it differently over here) done. Jordan's bms are still offensive smelling since the operation. However they weren't done so when we went to visit the paediatrician here in our area (Northland Whangarei).
I printed out the information that Bob gave me in the above letter. She took a brief look at it and said we always do "IgA" and that was the end of it. The print out said "total" IgA which I imagine is different for IgA. Is it??
As we have to go back for further bowel surgery I thought that if there was any discrepancy with the cd blood test........they they could do a biopsy while he was under the GA.
I have been given a blood test form for CD markers only and I am presuming that this may not show up CD...if he did happen to have it.
I thought they did a bowel biopsy......do they do a stomach biopsy?
I also thought that if there were starving Jordan for GA that the antibodies wouldn't show high as he would have been without food for 4 days prior to the bowel surgery (Hisrschsprungs).
Kim
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Post by kimnz on Mar 27, 2005 1:24:10 GMT -5
Thank you Bob!!
That's just what I was looking for and I will copy it off and give to the paediatrician. Our paeds in this area are general ones so anything specific is wonderful. In Auckland (our largest city) and other areas of NZ they would have paeds that are more specialised but not where I live in the North.
Kim nz
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Post by kimnz on Mar 24, 2005 16:30:39 GMT -5
Hi there,
Could someone please tell me what "coeliac markers" I should be asking for when I see our Dr (blood test).
I believe that coeliac disease doesn't always show up with normal blood tests but that there are extra ones that do show it up. I have no idea what the other tests are (apart from bowel biopsy).
Do you?
KimNZ
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Post by kimnz on Mar 27, 2005 1:21:37 GMT -5
Thanks everyone for your support, replies and encouragement. We really appreciate it!!!
What a wonderful lot you all are.
Love from Kim and Jordan nz
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Post by kimnz on Mar 24, 2005 16:27:03 GMT -5
Hi everyone,
this is Kim from New Zealand. Just an update that we are finally back from hospital. Jordan (aged 6, almost 7) went to Auckland starship children's hospital. He was VERY lately diagnosed (about 6 years old) with Hirschsprung's and the operation was for full removal of rectum and part of his colon.
My little boy had an awful time in hospital with very unpleasant proceedures. It sure was a traumatic time for us all. Unfortunately he got a few high temperatures and the surgeron could not do the full operation. He did a colostomy which we are having lots of problems with leakage with and will perform the rest of the operation in 4-8 weeks time and closeure of the colostomy.
I was so hoping for everything to go according to plan.
Our school is not happy about having a child with a colostomy at school (not that we could send Jordan at present anyway with the colostomy problems) so at present I am schooling him at home, I was hoping for a teacher's aide to help me as Jordan is funded with one, I was told yesterday that it is only for the school. So I am at this stage providing my own materials (apart from a couple of readers and a tape which the school gave me to borrow). I am hoping that we may be able to get on to "hospital schools" at least that way I would have some support.
Despite the above, our Jordan is still a happy little boy, and still eager to learn and be involved with everyone, we love him so much and at times like this you wonder what life would be without him.....is sure wouldn't be easy.
They seem to think he also has something (just picked upon xray) called hemi hypertrophy. I noticed that he has one palmer crease on one hand and a normal crease on the other, same with his foot. This has an association to renal tumours....they scanned him and he hasn't got them but I believe it is something that has to be kept an eye on.
Jordan started off with a hiss, bang and roar, walking at 15 months old, tryint to talk early on and very interested in learning. We seemed to have got away with some of the other problems that little ones with ds have. Then it was like we were hit with the rarities....Perthes, Hirschsprungs, hemiypertrophy etc.
We now have to have "markers" done for coeliac disease. I know we have had this before and it came back negative so I am unsure why they would be doing it again.
Still smiling.........Jordan and Kim NZ
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Post by kimnz on Mar 27, 2005 1:25:41 GMT -5
Thank you all very much, the information is just great.
Kim nz
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Post by kimnz on Feb 6, 2005 0:30:06 GMT -5
Claire that looks like a great site, I look forward to searching around it.
Thanks Kim
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