Calvinball wrote: ↑Mon Jun 11, 2018 9:10 pm
For a bit of good news, chocolate ice cream today with the speech therapist was her first food since Thursday before all this went down. She had a bit of a tough time with the mouth movements and swallowing at first but after a bit was taking small spoonfuls pretty well, and even gave us some smiles and a few words, which was very heartening to see.
Long road ahead but ice cream is already proving to be an integral part of the recovery process.
Auds transferred to inpatient rehab on Friday. Only one parent can stay overnight so that’s been Brit. Friday night was rough for everyone. Grant kept me up until about 445 am, and I had a sinus/upper respiratory bug from the hospital that was at it’s worst that day. Aud’s new room was small and shared with a teenager. She was terrified that night and ended up finally falling asleep in one of the lounges. They moved her to a different room yesterday.
On the good news front:
She is now cleared to eat most foods and isn’t being fed through the tube anymore, just hydrated. She also is able to use her left hand a bit, moving it around and even has a bit of a grip back. Both hands aren’t as strong or well controlled as they used to be, and she may have a tremor going on.
Left leg is still pretty weak; she’s able to crawl slowly but does faceplant pretty often, mostly from the left arm being weak.
All in all though, good progress! Most importantly we are seeing her regular personality coming back, and cognition/memory doesn’t seem too affected.
Calvinball wrote: ↑Sun Jun 17, 2018 10:11 am
Update for everyone:
Auds transferred to inpatient rehab on Friday. Only one parent can stay overnight so that’s been Brit. Friday night was rough for everyone. Grant kept me up until about 445 am, and I had a sinus/upper respiratory bug from the hospital that was at it’s worst that day. Aud’s new room was small and shared with a teenager. She was terrified that night and ended up finally falling asleep in one of the lounges. They moved her to a different room yesterday.
On the good news front:
She is now cleared to eat most foods and isn’t being fed through the tube anymore, just hydrated. She also is able to use her left hand a bit, moving it around and even has a bit of a grip back. Both hands aren’t as strong or well controlled as they used to be, and she may have a tremor going on.
Left leg is still pretty weak; she’s able to crawl slowly but does faceplant pretty often, mostly from the left arm being weak.
All in all though, good progress! Most importantly we are seeing her regular personality coming back, and cognition/memory doesn’t seem too affected.
Sent from the Beer Depository
Good update is good! Thanks. Continued good luck to all of you! Hope you feel better, too.
Where are these mangos?
Detroit wrote: ↑Fri Apr 16, 2021 1:19 pm
I don't understand anything anymore.
Calvinball wrote: ↑Sun Jun 17, 2018 10:11 am
Update for everyone:
Auds transferred to inpatient rehab on Friday. Only one parent can stay overnight so that’s been Brit. Friday night was rough for everyone. Grant kept me up until about 445 am, and I had a sinus/upper respiratory bug from the hospital that was at it’s worst that day. Aud’s new room was small and shared with a teenager. She was terrified that night and ended up finally falling asleep in one of the lounges. They moved her to a different room yesterday.
On the good news front:
She is now cleared to eat most foods and isn’t being fed through the tube anymore, just hydrated. She also is able to use her left hand a bit, moving it around and even has a bit of a grip back. Both hands aren’t as strong or well controlled as they used to be, and she may have a tremor going on.
Left leg is still pretty weak; she’s able to crawl slowly but does faceplant pretty often, mostly from the left arm being weak.
All in all though, good progress! Most importantly we are seeing her regular personality coming back, and cognition/memory doesn’t seem too affected.
Sent from the Beer Depository
Really happy to hear she’s doing a bit better. Hope that momentum continues.
Calvinball wrote: ↑Wed Jun 20, 2018 6:36 pm
More good new; we are home!
She’s like 80-85%, which is good enough to not be inpatient anymore.
Now just getting her all the way back and figuring out how to not have this happen again.
Great news!
Put that money toward her college fund.
Desertbreh wrote: ↑Thu Oct 17, 2019 3:05 pm
DFD. The forum where everybody makes the same choices and then tells anybody trying to join the club that they are the stupidest motherfucker to ever walk the earth.
Calvinball wrote: ↑Wed Jun 20, 2018 6:36 pm
More good new; we are home!
She’s like 80-85%, which is good enough to not be inpatient anymore.
Now just getting her all the way back and figuring out how to not have this happen again.
DUDE!
SO glad to hear it.
Re the bolded, you do you even go about doing that?
We wait on the intensive genetic testing to see if we can get a final diagnosis.
In the meantime should she get sick to a certain extent, which was discussed with her neurologist, we be proactive and reach out to her drs/take to the hospital before she hits that breaking point.
Re the bolded, you do you even go about doing that?
We wait on the intensive genetic testing to see if we can get a final diagnosis.
In the meantime should she get sick to a certain extent, which was discussed with her neurologist, we be proactive and reach out to her drs/take to the hospital before she hits that breaking point.
Got it. Let's hope you find out what it is so you can learn to proactively, as you said.
Where are these mangos?
Detroit wrote: ↑Fri Apr 16, 2021 1:19 pm
I don't understand anything anymore.
So, the big genetic sequencing test completed, and we had a follow-up with her neurologist, who has been the point person for us.
Good news/bad news.
The testing came back normal. In fact, her Dr was surprised that there were no secondary findings at all. They look at thousands of markers that are identified as indicators for various illnesses, secondary findings would be things unrelated to what we are trying to figure out, so if she had a positive market for like cardiac disease or something. She said she’s never seen a perfect result like this.
So bad news is we still don’t have an answer. Good news is, as she put it, if this test had an answer, that would have been bad news.
So she is going to have a follow up MRI and we’ll go from there. Meantime we just have to keep her from getting sick as well as we can, and if she does get a fever we have to take her to the hospital.
Thanks again to everyone for all your support, it hasn’t been easy dealing with this in all aspects.
Thanks for the update. Hopefully this was a one time thing and from here on out you guys can be proactive since you know what to look out for
Desertbreh wrote: ↑Thu Oct 17, 2019 3:05 pm
DFD. The forum where everybody makes the same choices and then tells anybody trying to join the club that they are the stupidest motherfucker to ever walk the earth.
Calvinball wrote: ↑Sat Aug 25, 2018 8:40 pm
So, the big genetic sequencing test completed, and we had a follow-up with her neurologist, who has been the point person for us.
Good news/bad news.
The testing came back normal. In fact, her Dr was surprised that there were no secondary findings at all. They look at thousands of markers that are identified as indicators for various illnesses, secondary findings would be things unrelated to what we are trying to figure out, so if she had a positive market for like cardiac disease or something. She said she’s never seen a perfect result like this.
So bad news is we still don’t have an answer. Good news is, as she put it, if this test had an answer, that would have been bad news.
So she is going to have a follow up MRI and we’ll go from there. Meantime we just have to keep her from getting sick as well as we can, and if she does get a fever we have to take her to the hospital.
Thanks again to everyone for all your support, it hasn’t been easy dealing with this in all aspects.
Sent from the Beer Depository
Appreciate the update. Kinda frustrating that they still don't have any answers, but good that everything looks normal and she appears to be healthy. Also good that you now know to jump on any fever immediately. I really, really hope this doesn't happen to her again!
Where are these mangos?
Detroit wrote: ↑Fri Apr 16, 2021 1:19 pm
I don't understand anything anymore.
Okay, I really fucking suck at seeing new threads here that I'm not subscribed to.
I just saw this last night and just sent you a donation a few minutes ago. I really hope it helps you guys out. I normally never say that I'm praying for anything or anyone, but I don't think it can hurt in this case, so I am thinking about your family and only wishing the best. I sincerely hope that they figure out what is going on and that it is all smiles and good times going forward as things return to normal.
CorvetteWaxer wrote: ↑Mon Sep 03, 2018 11:18 am
Okay, I really fucking suck at seeing new threads here that I'm not subscribed to.
I just saw this last night and just sent you a donation a few minutes ago. I really hope it helps you guys out. I normally never say that I'm praying for anything or anyone, but I don't think it can hurt in this case, so I am thinking about your family and only wishing the best. I sincerely hope that they figure out what is going on and that it is all smiles and good times going forward as things return to normal.