Tuesday

[wedding]

If its a school day I send a treat to school. That's basically it for day of Bday stuff. If it's not then his party is that day. We don't do anything else. The kid is showered in gifts and treats around that time.

[lahdeedah]

Thanks for the input everyone. Just want to figure out a way to make the day more special than any other day since it falls during the week. I think I will get a chocolate sprinkle donut for that morning. M has a girl classmate that has the same birthday, so her mom and I are going half on mini cupcakes for the class. Once we get home, I’ll let him pick what we are eating and have a cupcake and his presents ready for after dinner. My coworker does a birthday chair. For all her kids’ birthdays, they decorate a chair at the table that only the birthday kid can sit in. I might do that since it’s simple enough. Maybe tie some balloons and streamers to it.

Eta: I see you do the chair, too! flamingo

[lahdeedah]

My tapa is going crazy. The same posts over and over and out of order.

[jewels]

mwhip I don't think I had a chance to comment about your FIL. I hope you were able to get there quickly and that he is ok

[cagoldi]

How’s everything going this week, wedding?

[wedding]

Nov 13, 2018 16:26:34 GMT -6 cagoldi said:

How’s everything going this week, wedding?

Ok. The weekend was good. I have therapy again Thursday. How are you doing? Any headway on finding someone?

[lfig]

Whew, what a day. 6 hours at the hospital then a 3 hour drive home.

The EEG did show increased abnormal discharges in the brain...but on the right side (which controls the left side of body) so it doesn’t explain the right hand issues.

She is sending us to the Cerebral Palsy clinic for the hand issues. I asked her if Sierra has that diagnosis and she said that with the combination of several of her issues she thinks that it warrants a Cerebral Palsy diagnosis.

She wants to try the new FDA approved drug Epidiolex (cannabidiol) since we are still not controlled with seizures. And if we dont see some improvements with that then try the Vagus Nerve Stimulator, which is an implanted device to help disrupt and minimize seizures.

So we head to the CP Specialist at the end of the month and hopefully THEY can help with regaining use of the hand.

[wedding]

I’m sorry lfig. How are you feeling about having another diagnosis? I don’t know anything about CP.

I hope the new drug helps. I have high hopes after seeing documentaries about it in seizure patients.

[wedding]

FYI- JCPenny is doing their buy 1 get 2 pairs of boots free sale today. See post on GD. I just got three pairs for $80!

[klong11]

lfig have the previously considered the CP diagnosis? I didn't realize it could present it self later in life and not only at birth.

[guster]

lfig, I’m sorry the appt was what you had hoped it would be. I hope the cp specialist can give you some answers.

[lfig]

Nov 13, 2018 17:45:03 GMT -6 wedding said:

I’m sorry lfig. How are you feeling about having another diagnosis? I don’t know anything about CP.

I hope the new drug helps. I have high hopes after seeing documentaries about it in seizure patients.

I’m wallowing in self pity. This is just not the life anyone wants for their child.

But it is what it is. So imma put my big girl pants on and do what we have to do to get her the help she needs. Just like with each of her many other issues.

[guster]

Nov 13, 2018 18:04:07 GMT -6 lfig said:

Nov 13, 2018 17:45:03 GMT -6 wedding said:

I’m sorry lfig. How are you feeling about having another diagnosis? I don’t know anything about CP.

I hope the new drug helps. I have high hopes after seeing documentaries about it in seizure patients.

I’m wallowing in self pity. This is just not the life anyone wants for their child.

But it is what it is. So imma put my big girl pants on and do what we have to do to get her the help she needs. Just like with each of her many other issues.

You are such a good mama to her! This made me tear up.

[lfig]

Nov 13, 2018 17:50:23 GMT -6 klong11 said:

lfig have the previously considered the CP diagnosis? I didn't realize it could present it self later in life and not only at birth.

It’s never been talked about much before. But I’m not terribly surprised either because CP seems to go along with several of her other diagnosis in kids. The damage was done before birth, likely from her brain being squished by the fluid because of the hydrocephalus which was likely a result of her gene mutation. But I read that often the signs and symptoms often don’t appear until infancy or preschool years.

[lfig]

On a positive note, I got to have lunch with Sunny41!

And S got to see lots of fish. The aquariums at the hospital are her favorite!

[jewels]

lfig you are such an amazing mom to S. I can’t imagine how hard it is to keep getting clobbered with more diagnoses.

I hope the CP specialist is able to help with her arm

[mwhip]

lfig you and S are amazing with your always positive attitudes, truly an inspiration! And after seeing someone get an EEG today, I have no idea how you do that with a small child.

[mwhip]

Thanks for all the well wishes today, FIL seems to be okay, but we got no test results today, which is frustrating. Based off what I heard, he had 2 seizures this morning. The doctors seem insistent that this time they will figure out if its due to blood pressure (which was normal this morning) or brain activity. We waited around all day for the EEG results, but they never came around with them. So hopefully tomorrow we know some answers.

[flamingo]

lfig I'm sorry the appointment brought about a possible new diagnosis and even more questions/stress; I hope the new drug will work for S. I imagine you must feel sometimes like you get one fire stamped out only for another one to pop up a couple feet away. And as others have said, you are a wonderful mom to S--never doubt that for a minute.

[wedding]

lfig it’s ok to wallow for a bit. She’s had such a tough hand dealt but you guys have created this amazing life for her but it’s ok to grieve the loss of your ideals. Please talk to us when you need to. You are always such a rock and it’s ok to break sometimes.

[joelies]

Sending hugs lfig. S is so lucky to have such great parents to love and advocate for her. I can only imagine how tough it is to see her life turn out differently than you imagined, but this is the life she knows, and you have clearly done an incredible job of making it wonderful for her. But please, always know you can vent here.

[lfig]

Thanks ladies. I try not to let it get to me too much but it does sometimes.

[lfig]

Also flamingo I feel like this is relevant for you...

www.ksdk.com/mobile/article/news/nation-world/you-can-now-get-chick-fil-a-delivered-nationwide-and-your-first-sandwich-is-free/507-614146244

[Sunny41]

klong11 I feel you on the celebrity homes. I'm sure it is just 1 of their properties.

mwhip did they do an MRI? I hope they can figure it out and get it under control.

Had a great lunch with lfig and S today!

[Sunny41]

lfig I don't know how you don't get overwhelmed more often with everything. You and yh handle these things great. Part of handling everything is some grief and chocolate. Also I wanted to tell you how much S has grown since our last lunch.

[peachsmama]

You all are so amazing lfig. Take some time to wallow, complain and rant and whine all you want. You've earned it. And we're here for it, whatever you need. Also I was scrolling past her picture and my mom says "oh my gosh, she's beautiful!"

[mwhip]

Nov 13, 2018 20:24:09 GMT -6 Sunny41 said:

klong11 I feel you on the celebrity homes. I'm sure it is just 1 of their properties.

mwhip did they do an MRI? I hope they can figure it out and get it under control.

Had a great lunch with lfig and S today!

They're doing an MRI tomorrow.

[inthekitty]

lfig, it's okay to wallow sometimes. You're family has had to face and continues to face a lot of challenges. It's got to be so hard to have another medical problem to deal with. And it's okay to be upset from time to time to see S go through these issues. But luckily S isn't alone. You and your H are clearly so devoted and stay on top of it all. That isn't easy and you can talk about it here anytime. Sometimes I think about the things my mom went through and still goes through with my brother. You inspire me just like she does.

[vino]

lfig I’m sorry the appt came with a possible new diagnosis, hopefully the new specialist can help with her right side. You and YH are such amazing parents, truly an inspiration. I love seeing pics of her, she’s such a sweetie.

We’re here for you to vent and celebrate with, never forget that 💜

[klong11]

Ended up ordering cfa for Cadence's class on her birthday. The 3 vegetarians don't come on Mondays, which was my main concern.