feeling very low

[nathollyandmatthew]

some of u may have seen my posts about matthew
hes 16 months and has on going problems, reflux, asthma, dair allergy, central sleep apnea, failure to thrive, swallwoing probs
today he had a sweat test and since yetserday have felt more and more down about the possible outcome of this test
we wont get the results til tuesday
we r due bk to hosp on sunday to have his blood test done, which will check his immunity, CPK and also check for Coeliac disease
theres also been the talk of a syndrome he could have
we r due bk at GOSH hopefully soon for more tests, MRI, sleep EEG, genetics review, sleep study, bulbar EMG, videofluscorpy to find out about his probs now and any others he may have
for a 16 month old he has sure had it rough since being born and the thought of further things being wrong is horrid
i know knwoing is the best thing so he can b treated and i shoudl think what if but CF really scares the crap out of me and the doc is concerned about matthew
i feel so down and i try and talk to hubby but he dont say much so i just get on with it
i also have a dd whos 3 and is fine and i find it so hard as i feel shes missing out on a family and a brother
i just hope and pray that tuesday brings up postive news for once instead of one bad
thanks for listening
Natalie

nat, I recall your earlier post
I know how you feel as dd went through all of this very early on her her life and now she is 3 it is all kicking off again with education etc.
What syndrome did they mention would you be prepared to say? My dd has a syndrome too, quite uncommon and i know how isolating it can be.
I am sorry you have had to wait this long though
Big hugs, feel free to CAT me if you want to

natalie dont apologise, you are going through a really difficult time at the moment.

All of us on here have been through or are going through hard times with our children, my DH is the same as yours doesnt want to know-i think its his way of coping but its hard for me/you to do all the worrying and coping on our own.

Hope you get some news soon.

Hi, just wanted to let you know that i know i how you feel. All the tests that you mention, Harry has had. To make it worse most of the results were negative. I have felt really down this week, Harry has been in hospital and i feel so ...i dont know..fed up is suppose. Harry is the light of my life and i still grieve for the things that he will never be able to do. If the results of the sweat test show that he has cf, i suppose the positive thing is that he will get some treatment.

Thinking of you

Denise

thnaks girls the paed last week mentioned pierre robin syndrome have spoekn to a few people onhere and im still quite cnfused as matthew dont have the probs u r menat to have apart from the small chin, so we just have to wait til GOSH see him we was told 4-6 weeks and its been 6 weeks nxt week i have spoke to the neuro nurse on many occasions and just been told we r in the system
GOSH i can sort of deal with but its these latests test results,
hes CPK levels have been tested already this will b the 3rd time and both have come bk bordeline high so that is another worry
i look at matthew and see a lovley little caring loving 16 month old who doesnt look ill and u would never think there is anything wrong with him looking at him, he loves all the nurses and is such a flirt and is a real little fighter to just get on with things the way he does
thanks again
love nat

natalie agree with all other posters
hugs
xxx