Hiya Clare
Tiring aspect isnt the word for it, some days shes bouncing off the walls. lol. She has an attention span of 10 mins. 15 if i am lucky. Though she can spend hours on the comp playing her My little pony games.
Jasmine has a slightly speech problems, which we also learnt sign language, and she has a set rountine. For example when we go outside she will go to the flowers, wash her bike with the hose, climb in the dog kennel, and go into the shed. Well one day, the dog kennel was moved, and she cracked it. She was very distraught, so i had to move it back to the orignial spot. The school is helpimg me, as jasmine also has a problem with food, she doesnt try anything, and her meals consists of ham/cheese/salada on a plate or happy meal(checken nuggets)/Pop corn chicken/ 2 min noodles/ vegemite sandwiches. Last night we celebrated because she has some apple with me. 1 quarter to be exact. The school is helping me to get her to eat more and expand her taste buds. Jasmine only drinks Milk or Water. Mostly water. She used to eat vegies until the hospitial incident 2 years ago, thats when she went off food. Jasmine also takes off when out shopping. Or she run from aisle to aisle, and you gotta chase her, its a friggin nightmare esspecially when i am coughing my heart out trying to catch up with her. I get homecare and respite for jasmine about 4 hrs per fortnight.
The ausitic school in which she is in, has helped her alot, esspecially with cooking and excusions. She also has the same moods as me, now thats freaky. Its like looking at myself. lmao.
Yous can ask anything you want, as my personal webite is bout myself and also Jasmines ausitism, from when she was first dignosed. If your interested and have 10 mins to spare feel free to check it out.
http://www.angelfire.com/ms2/CysticFibrosisMarfan/jasmine.html <--- Info on her Ausitim/CF and Marfans
http://www.angelfire.com/ms2/CysticFibrosisMarfan/Speech.html <--Speech therapy lessons
http://www.angelfire.com/ms2/CysticFibrosisMarfan/Learning.html <--Jasmines special clases at rusdens
Kathryn
----- Original Message -----From: Clare StaceSent: Thursday, August 25, 2005 9:51 PMSubject: [cysticfibrosisdiscussion] DaughterHi Kat,Your daughter must be a blessing and a ... tireing aspect of your life. I am so sorry that she is sick with several conditions. I have encountered several autistic kids in my recent teaching at primary schools - there is so much variation in the severity. Is your daughter verbal? - I hope that is not rude of me to ask.With much admiration for youClareI didnt know you were having problems sleeping. Dont be surprised if the Dr gets you to see a numberous amount of Doctor's who specialises in Marfans, and also an echocargiogram done. The measure your arm width, look at your chest/ribs cage, go to an eye specialist and also they check out the roof of your mounth, your into a heap of FUN and boredom. lol. Not to mention another talk about your family history, and who else is tall in your family....What are you toes like? Next time your Dr brings up marfans, ask him bout Beals, as its the "sister" of Marfans, but most Dr mistaken Marfans for beals.Hate to put a dent in "most girls are generally tall", throw that out the window, as most of the tall people i have met all have marfans. Abraham lincoln had Marfans, so he wasnt Generally tall......My 5 years old daughter already has heart problems along with her ausitism, her echo proved that, and the Dr said she will probably have Marfans and she will be 6'4.Funny how we both have the tiredness, but is diagnosed differently, i get the 2nd part of my blood test results on Friday for thyroid - as she said that is making me tired, as well as lack of iron. And your having throat problems. I am surprised you havent gone thru heaps of blood tests. Let me know how everything goes, as i am very interested to know.:-)Kat----- Original Message -----From: kitakins83Sent: Wednesday, August 24, 2005 5:53 PMSubject: [cysticfibrosisdiscussion] my sleep clinic appointmentsaw the sleep clinic today. i have a study done on sunday [how quick
was that?]. this will interest you kat. the doctor kept asking me
about marfans syndrome! 'are you sure you dont have it?' 'has anyone
checked for it?' 'has anyone ever mentioned it?'. weird huh. he seemed
to be shocked at the fact that some girls are just naturally tall lol.
he said either way he is going to keep marfans in mind if and when he
makes a diagnoses. anyway, he seems to think i have sleep apnea.
apparently i have quite a narrow and floppy throat and that *could* be
the cause of my tiredness. charming! dont ask me how im going to go to
sleep with cords and machines everywhere. i plan on taking my sleeping
tablets along with me. i just hope this shows up something because
life as a zombie is starting to wear thin with me.
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