'Angel' Emilee's Story (Written by her Dad Charlie) Archives - ROHHAD Association

‘Angel Emilee’s’ (story written by her dad Charlie)

Emilee 1

 

Continuing on from the last blog I had written I think it is about time to go into after my beautiful Emilee had to leave school . Emilee had a hard time with this, but she could not stay awake in class and was starting to get to the point where she would get violent out of nowhere.  It seemed crazy to me when the violent outbursts would happen because Emilee was the type  of person that would not hurt anyone or anything.

I learned when her outbursts were going to happen because you could see in her face it was not her or not the true her it was a crazy blank look . Only people who spent a lot of time with her could see it happen.  This lasted for the rest of the time she was with us but it did seem to have cycles where it would happen more in certain times than others .
Soon after Emillee would behave like this, she was always so sad and saying how sorry she was which would make me very sad.  I knew that was not how my girl normally was but it did make it hard for us to take her to see people she did not know well because they where scared of her and it seemed to me like Emilee knew this and it would make her worse.  When she was not doing this she was the most loving caring person in the world.  Emilee had dreams and one thing she would often say was ‘I want to be a scientist so I can find cures for all the diseases in the world’ this was so nobody or anything would ever have to be sick ever.  This often lead to her becoming extremely upset and she would start saying everyone is dying and she would scream and cry.
It was so hard on her not being able to control all the feelings she felt so much. I had to hide my tears a lot of times. I tried to never let her see that i was upset or sad about anything for good reasons. If Emilee seen someone feeling bad she would try to cheer them up if she was feeling good and having a good day but if it was a bad day she would have a very hard time and her mood would change quickly from happy to sad to angry and so on. This could happen very quickly and go on like this for hours changing from different moods all in a matter of minutes.  The emotional and mental side to ROHHAD is incredibly difficult for the children to go through and so incredibly hard for all the family.  That is all from me just now I will have another blog soon about Emilee and my son.

Angel Emilee’s Story (written by her dad Charlie)

Emilee 1

 

It is time for me to talk a little more about my beautiful daughter Emilee, and what we as a family have gone through.

In my last blog I finished by sharing that Emilee had taken some tests for gifted children, I shared that she had just missed out on passing those tests fully because of her health declining and immediately after those tests Emilee was to spend more and more time in Hospital.

One of those times her temperature would not even register on a thermometer this was a huge concern for doctors and they flew her on this occasion like many others to the children’s hospital in Pittsburgh.

They still have no clue, not any idea what is going on with her but are running so many tests and investigations, test after test after test; she was spending so much time in hospital. We would get her home for 1 week or if we were lucky 1 month and then she would be back in hospital.

During all of this my Emilee was always so brave. This as you can imagine is not easy on any of us and it is really affecting my son. He and Emilee were always so close and I could tell it was so hard on him, I tried to act like it was all okay but it was so far from okay. His grades now went from the highest grades and honour roll to almost failing all his classes.

Emilee was completely out of school now she was in hospital so much and when she was home it was great to have her home but then it was also so hard knowing she was so sick and there was nothing I could do to make her better. I did my best to care for her and followed what the Doctors said to do which was check her blood sugar regularly because now she was diabetic and keep her on her diet. We stuck to her diet and the cares the Doctors advised and yet still she would keep getting sick. Further decline in her health meant she was no longer able to go to the rest-room on her own so we had to put her back in diapers. Her sodium levels would not regulate and neither would her temperature and so it continued back and forth in and out of hospital.

Emilee really struggled to stay awake and was becoming more and more lethargic, she was also becoming violent. Hallucinations set in and she said that she saw ghosts. Her hunger was unbearable at times and she would eat anything and everything including non foods, this we later found out was another problem caused by the ROHHAD Syndrome. In fact all of the symptoms she was now battling daily were all caused by ROHHAD.

Her pituitary gland was not regulating itself so she now had so many meds to take on top of her insulin and oxygen. At night she would kick me all the time when I would try to put her oxygen back after it had come off at night. She truly hated having it on and some times the kick was in very sensitive spot lol . The Drs would think she was asleep because she slept so much but she would also fake like she was asleep and got very good at it.

So they would tell me things right there in front of her thinking she was asleep and a lot of times she would hear it. The worst thing she heard when Doctors thought she was asleep they told me she was dying they did not know when or why but it was happening so much was going on and they had no way to stop any of it. When she heard that after the Doctor left the room she started screaming and crying saying she did not want to die I stood there fighting tears back and told her she was not going anywhere not for a long time.

Sorry I have to stop writing for now, I will write some more another time, take care to all of you who are reading Emilee’s story and blog, I hope this helps some of you that are dealing with this messed up serious disease, or that it helps those who want to understand more about ROHHAD, understand a little of what the families are going through, Thanks Charlie

Emilee 2

 

‘Angel’ Emilee’s story continued as written by her Dad Charlie

Emilee 2Well time to say a little more about my lovely daughter from where we left off.

Thinking back to when Emilee started school, it should be the happiest days of her life however at the same time she is getting sicker and sicker and none of the Doctors can tell me what is going on .

I can tell you it was very frustrating when all they can say is watch what you are feeding her even though you know that is not the problem. In Kindergarten she was doing very good and still had a few friends but at school not so much. I can see Emilee is still gaining more weight and now her temp will not stabilize it ranges from 106degree F( 41.11 degrees C ) to where it does not even register on the low end of thermometer and again Dr s do not know why.

Academically Emilee is still achieving 100% on all her school work even though she misses a month straight being in the hospital.

Having tests done and trying to keep her temp normal is mostly why she is spending so much time in the hospital for at this point. When we have to go to the hospital our local one they send her to a bigger hospital that is a 2.5hr drive for me and I still have Tony her brother to take care of. As a single parent it was hard to juggle it all and sometimes I would keep him with me and go to hospital to be with Emilee. This meant he was also missing school and for now he was doing really well in his work at school too.

Then sometimes I would have to stay at home and Emilee would be at the hospital by herself; I hated both situations take Tony with me and he misses school or leave him with someone and I go to hospital with Emilee or leave her alone in hospital. None of those decisions were easy and such a difficult choice to make neither is very good for any of us.

For now we where getting through it . Many times Emilee would end up falling asleep at school, we know now this was due to ROHHAD. I would go and collect her and bring her home and despite this her 1st grade work was excellent.

Her body and mind was getting worse and worse, she became affected by Diabetes which was really difficult and some violent tendencies were starting, her behaviour was changing before this she would never have hurt anyone or anything ever. As all of this was progressing and her body was changing so much, still Doctors could not tell me what was going on.

In the summer months Emilee spent 2 weeks at her mom’s and while she was there she had a seizure this was to be her first one of them with more to come. Her mom lives 8 hrs. from me so I went straight down there to see what was going on and still the Doctors had no answers for us they knew she was sick but did not know yet what was causing everything.

I was so scared of what was happening to my beautiful Emilee and then her mom decided she is going to try and take her from me. Her mum went to children’s services to try and keep her. I loved my daughter with all my heart and I knew that staying with her mom was not in her best interests given that I was her main guardian and her father, I fought hard for Emilee as I knew it would be very hard on my baby girl. I went to a lawyer and managed to have Emilee returned home to me were she belonged.

Not long after she returned home her teachers wanted to test her for gifted classes because of how smart she was and how good she was in school . The problem was getting it done because she was spending more and more time in hospital and missing so much work because she was still having so much trouble staying awake at school. When Emilee did manage to take the test so when she did very well but just missed out by a few points…………………………………

I will write more again soon, this is enough for me just now; none of this is easy on me but I hope it helps or comforts some people more to come soon.

Emilee 1

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