17/08/2023
UPDATE
Hello friends,
I have been waiting to make this post until I knew what route I was gonna take for the next part of our journey, I am still not completely sure of this direction but i am as close as I can be at this point.
If you have been following us along this road, you already know that we were denied being seen at Mayo clinic because of our state insurance status.
You should also know then, that St Jude's has nothing to offer us either at this time. Because there is no definitive critical treatment plan places like Shriners and st jude arnt a option. Some people don't realize that the Shriner's Hospitals specialize in orthopedics and burns, while St. Jude's specializes in childhood cancer treatment, we've been told these hospitals aren't appliable for our needs.
Amalie has been treated locally all her life for all the different illnesses and general care, shots, minor things etc..
We love and trust her doctor here, but her primary doctor can only do so much.
As 2020 rolled.in and the world was nuts..It was apparent that there were other things going on with my little girl. It seems we were always at the doctors. We started our specialist journey at saint francis children's hospital in Peoria at the end of 2020 which was difficult because getting in to see the doctors throughout 2020 and 2021was ridiculous.
As I've stated before, she was misdiagnosed many times, so it was only after the complications from the tonsil surgery and pneumonia, that we were referred to a cat scan where they found the mass, We were then sent to lurie childrens Hospital in Chicago.. this is where they started many investigative procedures through multiple doctors and appointments.
Again we were stretched out over 4 months of specialist. We were never given a social worker, never referred to any financial aid program's or hotel vouchers, no papers were submitted for us not even at the Ronald mcdonald's house for shelter- nothing. It was only by the grace of god and my friends, with kindness and go fund me money, We were able to afford the expense in travel, lodging, the non Insurance paying treatment suggestions.
After finally seeing the neurosurgeon up there and processing his analysis.. Amalies doctor and I agreed we should have a second opinion for her quality of life..so we were sent to barnes children hospital in saint louis. It was a month after that, we finally were contacted from the social worker at Louri hospital in chicago.She apologized for the misunderstanding but at this point, it didnt apply as we were now in Missouri jurisdiction.
Thing about being at Barnes hospital, Everything that has to do with the hospital is covered on our insurance we can utilize it but just there...any programs that are offered through social work outside of it, we have not been eligible for because we are residences of illinois, not Mo, so once again the cost has been out of our pocket.
Working a low waged job that you can only work so many hours at and then taking time off for your kid when she needs you cuz she's sick, or having emotional breakdowns, as well as the traveling to her doctors takes time off, Is truly a form of redundant poverty. :(
It's impossible to stay afloat let alone get enough to be ahead again only the people who have supported us are the reasons we have made it this far.
Although all of these hospitals i have mentioned are very good, Yes we know and they have had their own strengths. We have had some satisfactory engagement at times, even moderate diagnosis and/or treatments. BUT, We have not found enough answers to make a difference, the ones necessary to make my baby girl's quality of life not just acceptable, but really better-long term better!
Early July we had a repeat MRI, ordered by Amalies neurosurgeon at barns, Although the measurements of it have altered almost a centimeter in 10 months, we've never received any further instructions or communication from her doctor there. She was so determined that there wouldn't have been any change and that I did not want to even entertain having surgery on my little girl as the dangers would outweigh the benefits...
All of her expertise and i've heard nothing back.
Most recently when she experienced whatever virus and pneumonia, It caused some damage to her Eye, that now sets differently on the same side of where the cyst is. She cannot open it completely like she did b4 this last go around.
This concerns me, it doesn't seem to be a light subject in my eyes ts her vision!! Yet we have been told nothing about why this is.
Last week we completed an e e g to monitor the theory of the petite maull seizures she seems to be having undetected
Meanwhile My daughter is still experiencing the same (sometimes debilitating) symptoms right now- She has been so uncomfortable for so long in her little world... that now this life of pain is normal :(
She Still is unable to go to school in person, to many issues with "regular" institutional schools. So her social outlets are minimal.
She once was above her grade level academically, 3 years ago, hell even in spring of 2022...Now though she forgets what she's learned In a period of hours. She still falls down, she still gets massive headaches. She still gets nauseous, sometimes sick.. She still has issues with her vision, Sometimes she's not sure if what she's seen as reality or imagination, lots of confusion all the things I've said before. Except for now, she's been the medication to help with inflammation, (thats not really working anymore) it doesnt really help with headaches that she still having or help with her sleep habits/issues, which are awful again! Just meds that we cant just stop, and all they suggest is to change up her medication or increase it to see if it will help again...really trial and error of treating the symptoms not the problem.
I'll tell you what the meds ARE doing...they're causing her psychological breakdowns, along with self loathing, over loaded insecurities..My 11 year old is now questioning the value of life.
I mean what is that?
I asked a fellow parent friend of mine last night. What would you do if they put your daughter on ibuprofen and anti-inflammatories for over 2 years. And now her side hurts all the time (told its growing pains) - daily, weekly for months...anyway...And he responded he wouldn't do anything, because he wouldn't let that happen. and I said what would you do then if this is all you are given? And he responded whatever it took to not do that and get better. Right.....
Treating the symptoms isn't treating the problem, And why is it that? Is it because of the insurance game? Seems really inappropriate to play this waiting /guessing game on a regular basis for a little girls body, brain and life..
Soo what is our next move, we'll it's not Mayos, but there are 3 hospitals in the nation that specialize in arachnoid cyst treatment, Neurological issues and inflammatorily effects, according to the research done by my team and my self,
Seattle WI, Boston MA and st pete FL
I am torn between Boston and Seattle. I have had discussions with both intake departments and i believe they both are excellent choices but which one will we get the most out of and be able to sustain living while doing so?
At this time It looks like Seattle is our pick,
Regardless of the of the place, I know what I will have to do for this to happen and that is bring my daughter to the hospital and take her through the emergency room, after that the insurance game is no longer leverage. Pretty sad but the world we are in.
B4 you ask, YEs...I am so worried about everything! I have I've always been an adventure, but I've been pretty beat down by life over the last few years... I find myself over thinking everything..
I've been so stressed for so long- often just lost in this with her wondering am I being the best mom ? Am I doing everything I can for her?- Is it the right move...its all I talk about, her illness or our struggles, it gets old for us, what we go through, what she's going through. And what my friends and people who love me go through watching it, enduring my cry's for help or stagnate place of disappointment.. Sad for those who didnt know that I was once so full of life or my little girl who was so very happy all the time..
About our living arrangements, well although we do adore this place that we live in- even with some of the concerning issues it has, My landlord is still selling the place and it's really out of my hands what happens, until then we are going try to make it work but we have to travel to find the cure.
Honestly its one foot in front of the other so to speak
So I have started selling everything and working on my van to incorporated it as travel van, I figured If we lost our place we at least have our van made livable till we get to the next step. Maybe somebody will make her father support her adequately, Life would be so much different if that happened for us! Or maybe the courts will catch my ex-husband and make him pay that $56000. He owes me in support, Maybe Social security will just execute a plan.. or maybe we will find the doctors that will make my little girl better again...SO I can get back to life as well before im cooked up..you know get a regular job, and non dependent on unresponsible parties and proud of my life again..
So as I'm taking my baby girl, I have figure if they are not going to be able to fix this and she someday can lose her vision, I want her to have the memories of something more beautiful then this..Certainly, much better than being depressed, fading away laying on a couch 65% of her time, at 11 years old.. lets go see things
My van has work that needs to be done, I have not been able to take it far for a while, struts and a tire bar. It was estimated $2500- We also need the work done to make the inside appropriate for travel I can do alot of it with my friends but we need the money to get us where were going. This is why we are having the benefit.
Stay tuned here, Well keep you posted
Thank you for the time you took to read all this,
❤️ to all
Deidre and Amalie
