Any Cerebral Palsy parents out there :)

[lilesMom]

Stupid freezing phone
Afo def don't look comfy.
U would think they should have cushioning inside

 

[essie0828]

 

[lilesMom]

Sorry been mia
How ye doin xxx

Looks like this preg might be ectopic
Not sure yet
Was at the hosp today
Back again on thurs.
Sorry we bothered with ttc now
Should hve just been happy with s

Hope all's well with ye xxx

Any progress on treatments or testing for hayley xxx

 

[essie0828]

Hi sweetie. Sorry Ive been MIA as well. Been thinking of y'all and I hope everything goes well tomorrow. Ectopics are scary Its always a risk to ttc, it just seems way more scary now when you already got one little guy here on earth depending on ya. Dont lose hope on more babies just yet Something tells me you will get another shot at this someday. Love to you all.

We have a little more information on DDs condition and blood tests have been ordered for next week. If she shows elevated levels of cystine, homocystine, or methionine then we pretty much have a diagnosis. No further genetic testing will be offered. If blood tests are inconclusive then we may be offered another round of testing that will include Dh and I. Things are so crazy right now. DD progress is nothing short of amazing. Everyone is noticing. As heartwarming as it is, its alarming. I really think she has been very ill and we have been ignorant as to why. Im beating myself up over not doing the MRI sooner. I should have. I trusted that she had CP and i struggled with exposing an already damaged and developing brain to sedation for that amount of time. Ugh! Im so stupid! If she does indeed have this metabolic disorder, its treatable I feel I have missed so much priceless time. We could have been changing her diet, we could have been giving her Betaine, we could have been giving her B12 injections. I feel useless. Thank God for DD keeping me busy. She is amazing. She is mocking me, a lot, too much really Picking up a few curse words in the past WEEK. She is still using signs but she is combining them with words to form sentences. Tonight in the bath, she tooted, and the smell was no less than wicked. She signed "all done" furiously and said "Up up mama, I poo." This child was not speaking a month ago. I am flabbergasted. Shes identifying when she burps. She asks for a bath every night by dragging me to the stairs and saying "up up" while signing bath. She never did that stuff before. Shes a total stinker and lazy with the therapists. We are totally doing in home therapy and trying to avoid illness in DD and she is taking advantage. This is her turf and she is trying to call all the shots. She is responding to requests more and more. Its really almost unsettling. She still can have a few bad days a week but they are diminished. Her endurance is up, way up. She can go wide open for 6 to 8 hrs straight before crashing for a nap. She is wearing me out most days. Love it! We have changed her diet some and may end up going to a vegetarian type diet. Ive added as much b12 to her diet as I can until we get more news. Something has changed, something is helping, but I cant say for sure as to what.

 

[lilesMom]

That's fab she is so much better hon Xx
Does she hve mild cp or is diagnosis changed totally of tests confirm?
That's brilliant her speech and awareness hve come on so much xxx

Cautious good news fir me today.
Looking like normal preg again
But too early to tell if viable.
Fingers crossed
Afraid to get too hopeful :-D

 

[essie0828]

Thats good news dear. Thankful its not ectopic When will you get another scan or bloods?

She still has some mild cp damage that is visible on the MRI. I'm not sure if they change her diagnosis or just add to it. I cant wait to see the blood test results. Of course the geneticist is at a conference or something and cant send the orders until next week. I hate this waiting and not knowing what to do. In the mean time im reading everything i can find. I really hate figuring out genetics. Its so confusing and I have forgotten the terms over 15yrs. So i have three windows open to read one article. Dictionary and wikipedia open all the time. And that time is limited to when DD sleeps now that she is on the move.

 

[lilesMom]

Multi tasking and reading are hard to do together alright.
Xx
Hoping u get ur tests soon hon. Xxx

My blood results this eve put me back again.
Only up 50%, not doubled
They want me back Sat for bloods
And Monday for bloods and scan
Argh.
I'm back to fairly sure things aren't gonna end well
Fed up of not knowing
And I can't bring s with me
I've left him more this week them I'v e done his whole life

Sorry for the rant :-D
-

 

[essie0828]

You poor thing. Im glad you have people to keep him and help out. I was in the same boat last year around this time. I had to leave dd more then than ever. How is he doing? Adjusting well to being without mama some? Hayley did better than i expected with it.

 

[lilesMom]

Sorry been busy
Goin to hosp every second day and trying to make munchkins food
And do his therapies and still clean the house.
I'm wrecked from it
He is happy still
But it's hard yo squish his therapies in while missing time

 

[essie0828]

Aww sweets let the house go a bit and have a rest. There will always be something needing cleaning but just forget it for a day or so if you can. I understand though. Sometimes its not an option. I really hope you get some good news hun. Happy (late) Valentines day sweetie

 

[lilesMom]

I got good news
We saw a,heartbeat
Measuring behind but that happened with Simon too
Was expecting bad news
So I was wrong :-D

 

[essie0828]

Thats Wonderful!! Congrats mama

 

[lilesMom]

Thanks hon
How ye doin?

 

[essie0828]

We are snowed in and expecting an ice storm tonight. Lost power today for a few hours and will probably lose it for an extended time if we get enough ice to break the trees down. Had over a ft of snow from Monday, temps in the -20°F range, and now ice. Done with winter! DD has had a blast in it though. Thinks snow is yummy, lol. How u getting on hun?

 

[lilesMom]

Oh man. Hope the,weather improves soon x
Our buggy is broken and it's raining lots so we r stuck inside
Was getting peed off but u. Def hve it worse weather wise
Lil mab is good
Saying more sounds again
Sleeping better again
And in good form
So we r doing bettrrv:-D

 

[essie0828]

Glad to hear that hun. Sucks about the buggie but when its rainy and cold, you dont miss much .
How you feeling? Is it sinking in that you are pregnant!

Thats weather in KY for ya, lol. There's a saying here, "If you dont like the weather, stick around another day." We get a crazy mix of weather. We have finally thawed out some now, temps dipping into single digits sometimes at night but above freezing during the day. Not long till we will be having some weather similar to yours. Rain! Lol. Spring here is wet, usually. Soggy, messy, cold and wet. DD loves rain, she laughs when we are caught out in it. Goober

We still have the blood tests to do for the metabolic disorder. Didnt risk driving with her in this slick stuff. She has an eye doc appointment tomorrow, trying to square away the orders so we can make one trip.

 

[lilesMom]

I'm still half hoping bad half afraid
Hope is starting to win though :-D
I'm planning in my head so hope things go well now
Hve ny dating,scan March 26
Won't be too long coming in :-D

Glad ur,weather is thawing x
We get a funny nix too
Was snowing this morn
Back to rain now

Hope blood tests go well
Would it be better if they confirmed?
I would hve answer and know how to treat
Or us there still hope its not?
Sorry if stupid qs xxx

 

[essie0828]

Keep your hopes dear, they are precious things

I'm not quite sure how to answer that honestly. I really dont understand this metabolic thing well enough. The more I dig the more questions I have. Too many unknowns to say. I absolutely want to do SOMETHING, but I dont really want to see another diagnosis. The treatments available don't help every type of these disorders. So knowing wouldn't guarantee us that Hayley will respond to treatments. I'm just taking it as it comes right now. We will see genetics again March 20, close to.your dating scan and by then we should know. I want to be tested myself. I want DH tested as well. That may not be offered if her blood tests confirm either methylmalonic aciduria or homocystinuria. Its a waiting game for now. to y'all especially the squish.

 

[lilesMom]

Waiting is horrible xxx
Hope they sort things out for ye with tests soon.
Most important thing is hayley is doing well xxx
Ur brain would be addled from the possibilities
Main thing is ur doing all u can fir her
And hve good docs on ur side
Xxx

 

[essie0828]

Phone ate 2 of my posts! That's so aggravating

How are you doing!? Giggled like a schoolgirl when I seen the ticker So freaking happy for you! How's the family? S? Your mom?