Could use some good thoughts for my granddaughter

[DisneyWorldMimi]

That us a lot for a young girl @DisneyWorldMimi . What a cutie pie she is.
it sounds like you have all been through a lot. Sending prayers to your entire family

She is my love.
When I was pregnant with my daughter, I was debating between two names - Nicole Gillian & Natalie Grace. I decided on Nicole Gillian. Later when my daughter was pregnant and we were at her ultrasound appointment, the tech asked if she had picked a name. She said she liked the name Grace, but more for a middle name. I told her how she was almost Natalie Grace. She liked that and so now I have my two girls, with the two names I had picked. Nicole's cousin has a daughter named Grace, who is a couple years younger than Natalie. She also has a half brother names Anthony, which would have been the middle name as a boy's name if I had a boy. I knew Nicole was a girl almost from day one.

 

[DisneyWorldMimi]

New update on Natalie. She has a set of appointments setup for December. They have added an additional diagnosis of Postural orthostatic tachycardia syndrome (POTS). This explains the tachycardia events she was having.
She finished school from home for the last school year. This year she is going complete Home schooled. The school she has been enrolled it have a number of different subjects beside the normal. She is really interested in rocks, so they were able to get a kit on different rocks.
In September, she went to WDW & Universal with her extended family. One of my good friends and her kids have basically adopted her as their niece. My friend & her husband are Grammie & Grandpa Dave. Jeremey and his younger sister, Saralin love to spoil her when they can. Natalie can get a DAS pass, but like when my daughter & her go, they only use it when necessary. She did get one for Universal and so got express pass for all the rides. She had a great time with all of them. Jeremy has two young boys and if he noticed that Natalie & Saralin were getting looks from guys, he would send the two boys and tell them to "do the light work."
The picture attached was taken at Bass Pro Shops when Jeremy came to visit at the end of May for Natalie's birthday. The other picture is of Natalie & Jeremy from a Disney trip in 2017.

One thing that Nicole does when they have appointments in Gainesville, is plan a trip to Disney. They have annual passes and considering that they go a minimum of twice a year to Gainesville, they have paid for themselves. It gives Natalie a chance to be a normal person. Plus she will have all these memories of their trips.

 

[LuvOrlando]

So heartwarming, happy you have answers to help her manage her well being and that she has such wonderful supportsadorable.

 

[flyingdumbo127]

Very heartwarming indeed. Truly God Bless all of you!

 

[DisneyWorldMimi]

It's been a a little bit since I've updated. Nicole, Natalie & Barbaralin are going down to Gainesville for Natalie's bi-annual doctor visits. She also has a new doctor in Orlando. While in Orlando, they are going to go to Sea World for a change.
When Natalie has to have blood drawn prior to her trips, she always wants me to go with her. We have to let them know to use a small needle and they get someone to help hold her arm. I talk to her and help her keep calm. If she has to get labs down at Shand's it takes a few people to hold her down.
She does enjoy going to Disney Springs when they are in Orlando. They let their annual passes lapse, but will be thinking of getting them again next year. My daughter wants me to do a RunDisney 5K in the park. We have been doing a number of virtual races through a number of different groups. Main Street Bella has a number of Disney related virtual races. I think they do 2 or 3 a year. I did my first RunDisney Virtual with the Springtime Surprise set.
Natalie is still doing home school and it makes it so much easier for her.

 

[flyingdumbo127]

Just seeing this now. Many prayers for Natalie and your entire family. As an fyi, there are topical anesthetics EMLA creams (both over the counter, Lidocaine, and by prescription) and sprays that help make routine needlework not be painful. The cream just needs to be well applied in advance and given enough time to work. Most hospitals and doctors offices, ask in advance, should have this. Extra hug to you, DisneyWorldMimi.

 

[DisneyWorldMimi]

Just an update on how things are going. Nicole (my daughter) is currently looking for a lab that can do some specific labs and is having trouble finding one. They normally go to Quest for her lab work and I am the only one Natalie will allow to go with her. These labs have to be done in a Very Specific order. This written at the very top of the orders and cannot be done out of that order. Quest was going to do the labs, but not in the order that was required. My daughter had to point out that the doctor stated to her that the instructions must be followed as they are written.
Natalie is starting 8th grade this year. She has been homeschooling for the last couple years. She got accepted at a different homeschool site this year with a full scholarship. She is taking 8 courses: 1: Pre-Algrebra; 2: Grammar & Composition; 3: Intro to Coding; 4: Social and Emotional Health; 5: Middle School Health; 6: Personal Finance; 7: Spanish and 8: Portuguese.
The academy she got the scholarship through has already sent her a laptop computer to use, because the one she has isn’t good enough for some of her classes.
She gets an allowance twice a month and with that pays for her own Spotify account, Game Pass account and other things that she might want.
Looks like they will be having her go to Gainesville once a year, with a possible one day trip also. She is going to an appointment in October and then they are going to Disney with my “sister” and her daughter
Then in December she has an appointment in Orlando with a new doctor she got earlier this year. I’m going with them and we are doing a trip to Disney then. I haven’t been since 2015.
At the beginning of the month, my “sister,” her daughter, Nicole, Natalie & I went up to Atlanta for a concert. We saw Lindsey Stirling and it was an amazing concert. The first two acts, Audriix (pronounced Audrey) and Walk Off the Earth with their sons, the Luminati Suns were great too. WOTE did a couple of compilations of songs. One was all Beatles songs and it was really good. They put in a number of obscure Beatles songs that normally people forget about.
Lindsey Stirling was amazing. When her show started, it had the comments from Piers Morgan and Sharon Osbourne from when she was on AGT 10 years ago. These were very negative comments and Sharon stated she would be better in a group instead of by herself.
She did a very energetic program, from playing her violin while working with arial silks, in a hoop that is also used for arial performances. One song she ended by becoming a Butterfly up in the air. She did perform one of my favorite songs and that was Shattered by her and Lizzie Hale. I want to say she used the Lizzie Hale voice section for her performance. I have seen where someone else sings while she plays, but this show she didn’t have anyone sing. Her new song is based on her breakup with her fiance three years ago. It is called Survive.
As for Natalie, she enjoyed the concert and takes everything else in stride. She knows what she can and can’t handle and any time she spend with my “sister” and her family, she lets them know if she needs a break.
My “sister” is my best friend and they have become a bonus family to Natalie. Her son has always called Natalie, his niece from the time she was born.
The picture of Jeremy hugging Natalie says it all. The other picture is of her and Saralin, Jeremy’s sister (my bonus daughter/niece). These two are two peas in a pod.