Could use some good thoughts for my granddaughter

[LuvOrlando]

I am so sorry your family lost Samson, this must be very difficult when he was such a support

 

[DisneyWorldMimi]

I am so sorry your family lost Samson, this must be very difficult when he was such a support

Thank you. When we received his ashes from the vet, they had also done a paw print for us. Natalie was pleased to have that.
Samson was one of a kind. When one of our other cats had kittens at first he didn't do much. But then Gracie (mama) got sick with acute mastitis and the vet said they almost lost her twice. When she cam bottle feed. Samson would come in the room and distract the ones not being fed. Unfortunately we lost two, but were able to keep the others healthy. One got adopted and we ended up keeping the rest.
When we adopted a dog that started having some issues (just falling over while outside, but still awake), he would lie next to her on the couch when she had to wear a heart monitor. Never did figure out what was going on with that, but it went away. We guessed that she was so malnourished that her body was adjusting to the food and was having some issues with how much she was getting. (She was underweight, had mange and severely neglected when we adopted her).
Natalie is taking things in stride as always and never lets anything keep her down. She had a good week last week. Her school had a Harvest Fest and my DD decorated their car for the Trunk or Treat they had with it. They also did a Trunk or Treat at the other Catholic Church and she had fun with that. Saturday morning they went to the local Farmer's market and had a good time. Then Sunday night we went to another Harvest Fest at a local church. They had games and free popcorn & slushies. They had two food trucks out and lots of tables set up for people to eat at.
One thing that Natalie has really gotten into lately is religion. I am a lapse Catholic and haven't really been practicing my faith by going to church. I do pray and will say the rosary at times. Natalie has her own bible and recently got a different one that had a really nice cloth case to carry it in with a place for highlighters and such. She had borrowed one of my cloth book covers (actually bible covers) and put her first bible in that. She then gifted me the first bible. I have given her a rosary bracelet and I just gave her a silver cross that was my mother's. She wears it every day. She is really taking care of it because it came from her (great) grandma.

 

[mommasita]

What a beautiful cat. I’m so sorry.

 

[DisneyWorldMimi]

My granddaughter has some appointments this week. My husband & I just returned from DC after attending my parents inurnment ceremony at Arlington National Cemetery. My DD & GDD picked us up from the airport yesterday and then left to go to Orlando that afternoon. My DD said they kept getting re-routed due to a number of accidents and only got on the interstate at the turnpike.
Today, my DD took GDD down to Disney Springs to see all the Christmas Trees. She didn't let her know ahead of time that they were going to do that. She said that as they went through security, my GDD was crying happy tears she was so excited. They had two appointments in Orlando today and then will have a couple of appointments tomorrow in Gainesville. They were driving up to Gainesville this evening. They will be home on Wednesday.
I am glad that she had a good morning at Disney Springs. When we asked her what she wanted for Christmas, she said she just wanted to help others. We finally got her to sit down and pick some things out in the Target Christmas Ad and a Christmas Fingerhut catalog.

 

[lisaviolet]

Hope everything is going well as can be.

 

[DisneyWorldMimi]

Natalie & my daughter are back down in Gainesville for more tests. This afternoon she had a full MRI & CT. They were able to do it today instead of squeezing it in between appointments tomorrow. Day full of appointments tomorrow and a few on Tuesday. Then they are headed to Disney for a couple days. My daughter keeps saving money for these trips for appointments. It takes some stress off the appointments. While Natalie doesn't like to use it, she has a stroller that she can use if she starts getting tired. She doesn't want to be judged since her disability is invisible.
My daughter was able to secure a room at POR as a surprise. They are going to go to Epcot so I told her about painting the mural. They haven't done Epcot on their last couple trips. Natalie has developed a love for anything Lion King. Nicole was able to find a Lion King Monopoly game and gave it to Natalie today.
Natalie is getting baptised and confirmed on Easter Sunday at the church associated with her school. She talked to the youth minister herself about getting this done. She has classes she has to attend, one at a parish in one of two other places. When they told me, I told her that I knew her grandma (my mom) would be very pleased to know that she is doing this. (My mom passed in 2018)
This trip should help determine some things neurologically. She will be having a number of blood tests, sedated due to the last time when she passed out. She was doing better, laughing & talking to the tech and then she was out. Her heart rate went up. She is on a heart monitor for this month and then any other appointments will be local.

 

[mommasita]

I hope they have a magical trip, prayers going out

 

[DisneyWorldMimi]

Video chatted earlier and so far they are having a blast. My granddaughter loves rollercoasters. My daughter will do some, but is not too thrilled with some. Natalie LOVED Rock 'n Rollercoaster! You can tell she is laughing in the picture, while my daughter is screaming.
They were going to chill after dinner, but I got a message that they headed to Magic Kingdom. They are doing Epcot tomorrow.

 

[DisneyWorldMimi]

My DD & GDD went to Pensacola today for a cardiac appointment. Here is the summary of that visit:
"1,824 days is the number we were hoping for today but it's not the number we got instead it was...273 days which is 9 months.
We saw the cardiologist today and we were hoping to be on a 5 year follow up plan but she isn't instead we go back in 9 months unless something severe happens before then. Doctor said she definitely has tachycardia but wants to monitor her because he believes she is at risk for something more.
He did say that she is a strong young woman and has defied all odds so far but definitely wants to keep a close eye on her."
While not exactly what they wanted to hear, it wasn't bad.
On another note, my DD has worked at GDD's school since the summer after 1st grade (her first year). She started in the Main office and really enjoyed it. After Hurricane Michael, they had to move to another church property for the time during repairs. She started doing some part-time hours at the day care at that church. When they were finally able to move back to their own campus, they opened a day care/pre-school (originally Pre-K4 to 8th grade). My DD is in the Infant room and loves it. The original director of that side ended up being the new principal and rarely came over to the Pre-school side. Basically saying "not my circus, not my monkeys." They would hire teachers and the teachers would quit after a week because it was absolute chaos. They finally got a Pre-school director and she lasted about 3 months. Right now DD is shift supervisor, so floats between rooms at times.
One of the infants (J) she had in her room, the parents love my DD. When she was moved to the 1 yo room, that teacher is not as hands on or much for giving reports as to how the kids do during the day. There is a big difference between going from the infant room to the 1 yo room and then to the 2 yo room (which is run like my DD does the infant room). Some parents feel there is something lacking in the way the teachers deal with the kids and the parents. After their last trip to Gainesville, J's parents were going to pull her from the school completely. DD said she would bring her back into the infant room since she was under ratio. J's parents then offered my DD a position as a Nanny for J. The pay would be comparable to what she is making now and there are a lot of pro's to it. After the first week back and seeing just how much of a disaster things had become, she talked to us and we discussed it. In the end we told her it had to be her decision. With the way things are going for the daycare, it could go bottom up by the end of the month and she could be out of a job. She opted to take the nanny position and will start at the end of the month. She loves this little one and she seems to be the cutest little thing. I think she is going to be happier there. Right now she is basically working almost 12 hours a day with no lunch break some days. Plus there have been times that if a state official had come through, they would have been shut down because rooms were out of ratio, teachers weren't paying attention to kids, etc. My DD has been there the longest and thought she had a good coworker/friend in another teacher. They were going to be co-shift supervisors, but the other person didn't want to do that. So it has been on my DD. She has had the support of the priest and a new nun who is now the new principal.

 

[lisaviolet]

What a long haul. Been thinking about you all. Prayers sent.

 

[lisaviolet]

Thinking about you. Hope you have more clarity on everything.

 

[DisneyWorldMimi]

Update on diagnosis, she has the following: Sjogren's syndrome with keratoconjunctivitis sicca, Feeding intolerance, Autoantibody titer positive, Hashimoto's thyroiditis, hypersomnia and Gastroparesis. She has been fighting a medical battle since the age of one and it is rapidly getting worse. She struggles with vision problems (wears glasses, double vision, seeing spots), leg issues (leg pain in both legs), stomach pain, loss of appetite, headaches and fatigue (her body wants to sleep 18 to 20 hours a day), and daily fever (up to 104 when asleep). She now also struggles with Tachycardia "heart racing" episodes multiple times a week and the doctor is not sure why so they referred her to a cardiologist.

She had an issue with PE the week of August 28th where she felt dizzy, light headed and said her entire body felt numb after only being outside 30 mins. Praying she doesn't have any issues this week. Doctors said they will try and come up with ways to help her hopefully this week if she has any further issues with it. She was supposed to have labs done that week and it didn't happen. Her veins kept rolling and they stopped trying. My daughter has a group page dedicated to Natalie's medical journey. She was asked by one person if the lab had tried a vein light. She said she didn't see them use one, but thinks they were looking for an excuse not to do the lab work since it is difficult to find a vein that won't roll.

This is a reality every morning for Natalie...She gets ready for school and gets in the car and falls back asleep until about 5 mins before car line starts then I get her up to brush her hair again before she gets out and heads to class. It is the same in the afternoon on the drive home so she normally gets her homework done right away before she falls asleep. (see picture attached)

On the way home yesterday, they heard a song on the radio and they both really liked it. Natalie says it reminds her you can't live in the what if stage of life all the time. You have to take the chance or answer the call no matter what. The song is by Cody Johnson and is called "Til You Can't."

They are on a countdown of 32 days to a Disney trip where my daughter is going to run the Disney Wine & Dine 5K and do the other races as virtual races. Then they will be going up to Gainesville for more appointments. Nicole is hoping maybe they will put in a port for blood draws.

They do make the most of their trips down to Gainesville. They try to do a Disney visit each time, whether it is just to Disney Springs and staying offsite. They might have passholders so they hit one or two parks. Usually it is a two day trip. Nicole's boss got them tickets to Mickey's Not So Scary Halloween Party. Nicole loves being a nanny because the little girl is a sweetie. They are expecting a boy at the end of this year or the beginning of next year.

 

[RogueX]

Update on diagnosis, she has the following: Sjogren's syndrome with keratoconjunctivitis sicca, Feeding intolerance, Autoantibody titer positive, Hashimoto's thyroiditis, hypersomnia and Gastroparesis. She has been fighting a medical battle since the age of one and it is rapidly getting worse. She struggles with vision problems (wears glasses, double vision, seeing spots), leg issues (leg pain in both legs), stomach pain, loss of appetite, headaches and fatigue (her body wants to sleep 18 to 20 hours a day), and daily fever (up to 104 when asleep). She now also struggles with Tachycardia "heart racing" episodes multiple times a week and the doctor is not sure why so they referred her to a cardiologist.

She had an issue with PE the week of August 28th where she felt dizzy, light headed and said her entire body felt numb after only being outside 30 mins. Praying she doesn't have any issues this week. Doctors said they will try and come up with ways to help her hopefully this week if she has any further issues with it. She was supposed to have labs done that week and it didn't happen. Her veins kept rolling and they stopped trying. My daughter has a group page dedicated to Natalie's medical journey. She was asked by one person if the lab had tried a vein light. She said she didn't see them use one, but thinks they were looking for an excuse not to do the lab work since it is difficult to find a vein that won't roll.

This is a reality every morning for Natalie...She gets ready for school and gets in the car and falls back asleep until about 5 mins before car line starts then I get her up to brush her hair again before she gets out and heads to class. It is the same in the afternoon on the drive home so she normally gets her homework done right away before she falls asleep. (see picture attached)

On the way home yesterday, they heard a song on the radio and they both really liked it. Natalie says it reminds her you can't live in the what if stage of life all the time. You have to take the chance or answer the call no matter what. The song is by Cody Johnson and is called "Til You Can't."

They are on a countdown of 32 days to a Disney trip where my daughter is going to run the Disney Wine & Dine 5K and do the other races as virtual races. Then they will be going up to Gainesville for more appointments. Nicole is hoping maybe they will put in a port for blood draws.

They do make the most of their trips down to Gainesville. They try to do a Disney visit each time, whether it is just to Disney Springs and staying offsite. They might have passholders so they hit one or two parks. Usually it is a two day trip. Nicole's boss got them tickets to Mickey's Not So Scary Halloween Party. Nicole loves being a nanny because the little girl is a sweetie. They are expecting a boy at the end of this year or the beginning of next year.

Oh that is so much for anyone to go through, especially a child.

I can sympathize with the rolling veins, on average it takes about 6 tries to get bloodwork done. My last trip to the ER they used a vein light and still couldn't place an IV. And when I needed a PICC line placed, I broke a nurses 30 year perfect record. After 3 tries, they gave up and placed a different type of line in my chest.

 

[PollyannaMom]

Oh that is so much for anyone to go through, especially a child.

I agree. Hugs to you all

On the way home yesterday, they heard a song on the radio and they both really liked it. Natalie says it reminds her you can't live in the what if stage of life all the time. You have to take the chance or answer the call no matter what. The song is by Cody Johnson and is called "Til You Can't."

She sounds so brave.

 

[LuvOrlando]

Oh wow, that is a lot for your family to be taking on all at once, so many complicated terms must make things tough on you all. I hope that the fact you have a diagnosis means your granddaughter will get the added professional support she needs and that the rest of your family will be less worried and better able to enjoy each other

 

[DisneyWorldMimi]

She has always hated having blood drawn. I have seen her try to climb a wall to get away from them when she was four. She hears the cart coming down the way in the Peds ER and she pushes the bed away from the wall and is down behind it. She is getting better. But there were times that it would take four people to get blood.
They approved her for a jogger/wheelchair even though she is 12. The only time they use it is when they are at Shand's and occasionally at Disney. It is only when her legs get tired. Shand's has been fantastic.
My daughter found out that there had been referrals sent down to them from the time she was 2. She was never notified by her primary doctor. We figure her gastroparesis was going on when she was two. She was in the hospital for a week and couldn't keep anything down. She would eat, throw up, nausea med. (Rinse, Repeat) Finally they gave her an enema and it cleaned her out. The food she was eating had no where to go, because of what she had already eaten was taking it's time getting through her system. The doctor in the hospital told her primary it was acid reflux.
Right now her biggest fear is that the kids in her class will talk about her because there are things that she cannot do. Some understand that she has been out of school for doctor appointments, but she has some new classmates that have not been in her previous years classes. She goes to a Catholic school and the classes are small. Right now I think she has 10 classmates, most of which have been in classes from when she started at the school.

 

[DisneyWorldMimi]

It has been awhile since I have done an update. There have been a number of things that are being looked into.
1st - we were able to get blood drawn for the lab tests that Shand's needed. I took her in and between myself and the additional tech we were able to hold her to get them done. She said what hurts isn't the needle (that does a little), but the rubber strap they use on her arm. Near the end of the draw, I had her start doing some slow, deep breathing and that helped her out. Unfortunately, we found out a couple days later that they missed some of the tests. We took her back in and with the same two techs, myself & my daughter, we got the couple vials they needed. I had her start the slow, deep breathing right after the needle was in. (they used a peds needle for her). Also they put the strap on her arm over her shirt sleeve.
2nd - they did go to Shand's in January and got some tests done. Since then she has been evaluated for a wheelchair, has new glasses because her vision is deteriorating and had started with Occupational therapy and Physical therapy.

As of March 4th this is what has been done:
Update on Natalie and everything on the to do list:
- Talked to Nephrology and they said to wait for them to call me to make an appointment because they are backlogged on referrals right now.
- Talked to Shand's multiple times last week except neurology so hoping to hear from them next week.
- Talked to Social Security office and they are backlogged so it won't be till at least July or later before I hear from them.
- Picked up Natalie's new glasses on Friday so she was happy

- Natalie had an appointment with her local PCM who went through all her current issues and told me which doctors to reach out to about each one
Natalie's current issues are:
- Headaches (2 to 3 days a week)
- Blurred Vision (occasionally)
- Not sleeping well somedays
- Sleeping most the day other days
- Only eats once a day (if at all)
- Always thirsty
- Frequent urination
- Feels dehydrated all the time
GI specialist at Shand's says that she could be getting headaches and having trouble sleeping because her body isn't getting enough nutrients. He started her on a new medication to try and help her eat more. He said if it doesn't seem to help then we will talk about a temporary feeding tube (no more than 6 months) for overnight feeds and fluids to see if that helps.
GI specialist also said to also talk to Nephrology about the always thirsty, frequent urination and feeling dehydrated. He said her labs showed minor dehydration (but not enough to need IV fluids) and so he said they might want to do a more in-depth check of her kidneys.
Endocrinologist said she is not diabetic and her thyroid looks fine for now

Rheumatologist said the labs didn't show anything new or unexpected just a confirmation on her autoimmune disorder and immunodeficiency. They said it also helped them realized that her old doctor seemed to be way off course so no reason to be alarmed as long as she takes her medications everyday

They did talk about the possibility of a sleep study and some other testing in June but I have to talk to neurology first and then I will find out what type of testing they are thinking.

Her body is unable to regulate it's temperature, so she can be cold and then get very hot. She sleeps with a fan on at night because that is when she seems to get hot the most. She has missed quite a bit of school due to not getting enough sleep, headaches and nausea. She is keeping up with her school work through the school's Schoology Program. My daughter plans to change her to homeschooling for next year. My daughter also got a new job. The nanny position was fine at first. The wife got pregnant unexpectedly and she has very bad post partum depression. They dropped their house keeper and expected my daughter to add those chores to her routine with no extra pay as well as taking care of two children - a two year old and a 3 month old. (mother was off work for three months). There is a storage place less than 1/4 mile from our house and they had a job opening. She applied online, but followed up in person and then got the job. So far she really likes it - a lot less stress. The past couple weeks were a bit more hectic in a way. A bad thunderstorm took out the power and even after it came back on, they were having trouble with their gate pin pad. The gate would be left open until 10pm and then she would run over and close it each night. It should be fully repaired in the next couple days.

Natalie never complains about anything. Myself, my husband & daughter forgot about Easter. So last night my daughter went and picked up some things at Walmart and it really made her day. One item was a Manta Ray Smush-mellow named Maggie, whose birthday is 2 days after my granddaughter's birthday. I have ordered her a silver rope chain and birthstone charm to put a cross that belonged to my mother on the chain. The one it was on broke.

My husband ended up in the emergency around March 16th for a couple days. They found he had two nodules on his thyroid. One is large enough to push his trachea to the right of midline. His white blood cell count was high and so he has seen an Advance Oncology Certified Nurse Practitioner. They were waiting for additional test result to come in to see the course of treatment they will suggest and also what the Endocrinologist says about the nodules. He has been having trouble sleeping and so gets exhausted easily. He was on Methadone for a number of years due to nerve damage headaches. An Air Force doctor shocked his nerves when removing a lipoma and damaged them. He has been off of Methadone for a month now. He slowly weaned himself off because the VA doctor was going to stop him completely and I saw what happened to him when he was without it for 6 days. He was suicidal. If I didn't have my daughter, I don't know if I could have handled him. I do give him credit, when he had some bad thoughts just after he finished his last dose, he gave me his guns and knife. He is now fine and he has one back. I have to find the other and the knife because I put them somewhere safe, but forgot where.

Here is a picture of how my granddaughter was whenever she was picked up from school. She would always be exhausted and would sleep on the way home and go right in to the room and go to sleep until dinner.
She also got a surprise Christmas gift from her "Uncle" Jeremy. He and my daughter are best friends & like brother & sister. Jeremy has been in her life since she was a baby. He was in the military and was medically discharged last year. His family lives in the same town not far from our house. His first stop was to see her. She has a military bear that has his last name on it.

 

[BroadwayHermione5]

I am so sorry. I hope they find out things soon.


For what it’s worth, I have acid reflux and IBS/endocrine issues so it is possible for them to be correlated.

And as a full fledged adult, I am finally having other things diagnosed that make me want to sue every doctor I had as a child (especially my main pediatrician. Omg did they miss a lot). It unfortunately happens, and I am so happy they are finding out answers. Definitely better to find out now than as an adult.

 

[DisneyWorldMimi]

We found out in December 2020 on their first visit to Shands, that referrals had been sent to them from the time she was two. Her doctor & insurance never told my daughter about these referrals. The doctors at Shands told her.
I started having a twitch on my right eye in 1992. When we moved to Florida in 1993, I started going to doctors to see what it might be. They ask told me it was stress. When the internet became accessible, I started looking up things that could cause this. I figured out I had one of two things: Blepharospasm or Hemi-facial Spasm. Seven years after my first doctor visit, they diagnosed me with Blepharospasm. I stayed getting treated. In 2014 I changed doctors and he said I had Hemi-facial Spasm because it was only on the right side of my face. The injections of Botox my previous doctor gave me, always left me with an eye droop. The new doctor's injections of Botox, never have me that. I haven't had an injection since 2021. No more twitches, no eye droop. I went over 15 years getting the wrong dosage and placement of the Botox. My new doctor is an ophthalmologist and was professionally trained to do these injections for both Hemi-facial Spasm & Blepharospasm. It is a blessing that a problem with billing helped me get to the right doctor. I have hypothyroidism also, but it is under control.
The nodules on my husband's thyroid were found in June of last year but was never given a referral for them from the ER. The same ER he went to recently.
I twisted my foot two weeks ago. Iced and took motrin for a few days it seemed fine. Last week it started hurting more and then Sunday I went to the ER. I have a bad sprain in the muscles on the outer muscles on my lower ankle. They were surprised that it didn't hurt more. I said that I walked on a fractured hip for two months. Still don't know how I did that.
Natalie is doing all her schooling from home through her current school until the end of term. It is so much easier for her. She has some problems with short term memory. Because of this, whenever they do a Shands visit they always make sure they do at least one day at Disney. They have annual passes and they put a bit aside for these trips. These are things she will remember. She loves her mom & daughter trips. She felt bad in November because my daughter was going to do the 5k run but ended up with back strain from pushing Natalie in her modified stroller. We are going to try and do a 5k together (Nicole & myself) next year.

 

[mommasita]

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