Any Cerebral Palsy parents out there :)

[essie0828]

I chickened out and didnt buy the tests. Totally avoided the store all together And still no AF. Trying not to get really stressed about it, could just be a longer cycle. But I have been clockwork for 3 months. Not trying but not taking birth control either. :O Time will tell or ill finally make myself poas again.

 

[lilesMom]

I hve to prop him but he is mostly doing it himself :-D
So that's great :-D

I should stay away from tests :-D
Its making me focus too much.
I'm ok either way
Cos I'm half thinking we should wait :-D
But possibly we won't :-D

 

[essie0828]

Lol. Roll on Saturday! That really is good about him standing, it took Hayley a lot of practice and extra time to get it. Like a year and a half! She can stand out in the open but will fall easily if bumped. If she has something to lean on she is quite stable. I almost think she could use a cane. For now mommys hand is her cane but it may be a good option for later. I saw a small pink one at a drug store recently and almost tried it but she was more interested in wielding it like a sword. May not be time for that yet

 

[essie0828]

AF is here

 

[lilesMom]

He is a long way from standing on his own yet
But doing good again now,thank God.

Hurray for af :-D
I hve no clue if I am anymore
Would usually hve bfp by now if I was
So might be af too. :-D

 

[essie0828]

Aww I hope you get your BFP soon. If not roll on next month Let me know how th OV tests work for you. I havent used them very much. Someone gave me a partial pack with 4 tests and i used those but more for confirming ov than targeting it.

Hayleys genetics report is back. There is an abnormality in a region that markers for some metabolic disorders lie. The test wasnt specific enough to see those specific markers so more testing is needed to confirm. So as of now it looks like my little girl has very mild cp along with a possible metabolic disorder. Methylmalonic acidemia and homocystinura are named in the report. Both are quite scary but possibly treatable. Honestly I dont know much about either disorder yet. My head is still spinning.

 

[lilesMom]

It's good to know whatever it is for treatment
But no wonder ur head is spinning xxx
Hugs xxx
How long will new tests take
Hope it's fastxxx
And good answers
I know nothing about either of them
I'll hve to look them up xxx
Hugs again xxx

 

[essie0828]

I will have to call Monday and book the other tests. It will probably take a while for the next round of genetics. Im pretty sure they will be looking for samples from DH and I to confirm. We both have to have the recessive gene for these disorders for DD to be affected. She will need to be tested for blood and urine levels of some specific chemicals and we will need to see a Registered Dietition because her diet will likely need changing. If she indeed shows signs in her blood. Management seems to be dietary, low protein diet and supplementation of enzymes and B vitamins especially.

 

[essie0828]

Its Saturday! Any news on the ttc front? Hoping you got your BFP

 

[lilesMom]

I read up a little
there seems to be lots of treatment,and management to help xxx
Hopefully it moves fast for ye now hon xxx
Such,a shock to get for ye,all xx

No af but still bfn
Think my tests may be dud :-D
Might hve to invest in proper ones if no af tomorrow

 

[lilesMom]

Was with my mom,all day
Her,epilepsy is gone bananas again.
Stupid epilepsy

 

[essie0828]

Sorry to hear about your mom. Epilepsy sucks. My aunt has it, she cant drive and has suffered some terrible falls. One down a flight of stairs helping my cousin move into the dorm. Its really bad sometimes, sometimes she's normal. Its a very odd disease. Her grandson has epilepsy as well. The older people in my family say "it skips a generation". Kind of folkloreish but I see where they get it It seems to do the same in your family. Do you have epilepsy yourself lilesmum?

I think dietary management is a big thing with those disorders. Also have to start keeping watch on her little kidneys and liver. Her cbc came back a little dodgy in those areas once when she was particularly ill back in October. The kid just couldn't shake a fever, always had cold type symptoms and very lethargic/hypotonic. No one could tell me why. I had her see so many doctors and each was kind of stumped. Im wondering now if she wasnt having complications from one of these metabolic disorders.

 

[lilesMom]

From what I read it seems infections are more serious,
Ie harder to get rid of.
Thank God ye will know from now on.
They can take proper precautions xxx
Hugs
Hope ur ok now.
Was a big shock for ye xxx

No I don't hve epilepsy thank God.
Simons comes from the area of his brain damaged by stroke
But it has skipped alright :-D
Hoping Simon won't hve it forever

Still no af
But still bfn, doh

 

[lilesMom]

My b and b is gone weird
Answered u but it's gone,again
Still no af.
Been getting bfn
Got new tests in post this eve
very faint pos.
I Sid think I ov a little bit late this month
So I'm hoping that's why it's late.

How ye doin xxx

 

[essie0828]

Ha! A line is a line! Congrats! You wasnt kiddin when you said you get pregnant quick

 

[lilesMom]

I'm still a bit unsure
It was ridiculously faint
Butvit was eve and I drink lots.
I'll do a proper one inthe morn
How ye doin Xx

 

[essie0828]

Are you going to keep testing or go see the doc? Hehe. So Excited and happy for ya!

We are doing well, going through some transitions in DD's therapy where she is almost 3. She is aging out of early intervention but we are going to delay pre school until we have more info on her condition. So we are setting up at home therapy sessions and attending some speech clinics at local universities. I have her exit assessment from early intervention but I havent read it yet. Those sorta depress me sometimes so im saving that for later. Its been a good day so far, not gonna change it.

 

[lilesMom]

I'll do both :-D
Prob go to Doc tomorrow.
Hayley is growing up on us, hee hee
Is it her same therapists at home
Or New ones

Gotta give munchkin bottle abs meds
So be gone now for a bit Xx

 

[essie0828]

I cant believe she is gonna be 3. Its very strange. She will have some of the same therapists, some will be new. It will just be mostly home based instead of at the rehab hospital. Still be doing OT, PT and Speech. Speech is where she is delayed the most, expressive language especially.

 

[lilesMom]

That's great ye won't hve to travel
Hope New therapists are great
Xxx

Stronger positive today
Went to Doc,and got bloods done.
It's safe to saying preg now
Hopefully Il stay that way for a bit :-D
Xxx