[Mysticred]

I know it has been awhile since I have posted. My granddaughter turns 10 on the 8th of July and on the 9th she will enter the hospital again in OKC if not there Cook's Childrens hospital again.

Her seizures have returned. Not as many but bad enough that right now she does not have the strength to walk. Last week she was rushed to the hospital in the small town she lives in Oklahoma then airlifted to OKC children's hospital an hour away. Right now they have her in a wheelchair and she is fighting mad.

On the 15th of this month she will go back to Cook's children's hopsital in Texas and they will discuss yet another brain surgery. At this time she is on several different medicines to try and controll her seizures. We had all hoped the last surgery would do the trick but it only lasted a few months of her bring seizure free and a normal little girl as she calls it.

The only reason she is not in the hospital now is because of her birthday, this would have been the 3rd year in a row this sweet little wonderful child would have had been in the hospital for her birthday. But my daughter begged them to let her come back on the 9th so she could spend the 4th watching fireworks, have a BBQ and celebrate her birthday with friends and family, so they agreed.

I know the last time Sierra was in the hospital dealing with her brain surgeries everyone here was a rock for me. I am afraid I am asking it again. I am not being allowed to go again because they have started my rituxan infusions and my kidneys are being hinky again. I know I need to think of getting better and trust me I am trying but between my granddaughter's surgeries and my son being told he has lupus as well, and my marriage being on rocky grounds I sure could use a few shoulders to cry on.

 

[Joandublin]

Im very sorry to hear this news about your granddaughter. How distressing this must be for all of you :hugbetter:

I will certainly keep you and your family in my thoughts and prayers through these very difficult times. I hope Sierra has a wonderful birthday filled with laughter, love and happy memories to help her through the times ahead.

Luv n stuff
Joan:rose:

 

[KarolH]

This is horrible and I am sorry to hear of your struggles and your families struggles.

I will pray for this little girl. Life is just not fair sometimes.

 

[Marika]

My husband and I recently took his ex firm to court, they had fired him and found a loop hole in the law...so they said they didn't have to give him compensation, redundency money...the judge was furious and awarded us some money not all of it...we lost 150,000 E.....people have aasked me why are you so calm and cool about it....
My reply is always the same...there are worst things in life,,and I have 2 healthy kids....
If good thoughts can heal mine are on the way to your whole family....

Marika

 

[neongirl]

I'm sorry to hear Sierra has such a hard road ahead of her still she has already been through so much. She is such a strong little girl, and I will continue to pray for her. I wasn't aware of your son being dxd with Lupus too, and I'm very sad to hear that news:sad: Hopefully there will be some real progress made concerning the treatment of this disease in the near future and he will benefit from that. I hope the rituxan helps the kidneys straighten out soon! With all of this going on, it is understandable that your marriage would be under a lot of strain, I hope the two of you are able to find some peace in all of this and work things out. (((((((hugs)))))) to all of you.

 

[elisabethm]

Im sorry to hear of Sierra having to go back to hospital again and i will pray for her and the rest of your family.I would hate to have anything wrong with any of my grandchildren so once again i will send all my Best Wishes to you and your family Elisabeth

 

[Nutty]

Sending you positive vibes Mysticred. While suffering is a difficult thing to watch, it is even harder to watch a child suffer. Hoping you find positive things to focus on that will make these other challenges a little easier to deal with. I'm not that good at it myself, but it is important to take care of yourself through these difficult times.

All the best!

Nutty

 

[Maia]

I'll be thinking of you, Sierra and the whole family over these next coming days & will be praying for a longer lasting outcome with her next treatment.

I hope Sierra had a good fourth of July being out of the hospital & she has a great birthday too...

I know this sounds crazy and "out there" but has she ever tried the special diet that can sometimes control siezures in children? I first heard of it from watching a Lifetime TV movie about it & it is actually a treatment that does work for some children. Doctors seldom try it... but sometimes it reaches a point where a person is willing to try *anything*!

Best wishes for you too with some successful Rituxan treatment. Take care... and sending many ((((hugs)))) your way.

 

[Nutty]

Is this the diet you are referring to? http://www.epilepsy.org.uk/info/ketogenic.html

Nutty

 

[Mysticred]

Thank you all of you, I sent a copy of the article on the diet to my daughter she is taking it with her when Sierra sees her doctors on the 15th. If they believe it could not hurt and try it which would mean them holding off cutting into her brain again.

I am sitting here crying like a baby, you people are so wonderful. I would probably go nuts not having you all to talk things over with.

Roughly about two or maybe three months ago my son, Age 29 was told he has lupus and RA. He lives in Oklahoma and he has two beautiful baby boys.
Memphis is 3 almost 4 and Keegen is 18 months old. It was very hard for me to hear my son at such a young age and a new father was now going to battle this illness like his mother. His outlook is wonderful, he is taking his medicine and still trying to stay as active as possible. He is 6'4", 215lbs and very healthy till now, he is facing hip surgery on July 26th because the Ra has destroyed his hip.

At times I shake my head and wonder why this is happening. I have found myself many times asking God why? And my friends tell me what does not kill you only makes you stronger, at this rate I should be able to lift the entire eastern seashore with no problem.

I have tried to stay positive and think of how the rituxan is working, probably would be more positive if I did not have to wait till the end of the month. And I do have great hope it is working, my hair is no longer coming out, the painful swelling and blisters on my legs have healed finally after 9 months. The skin is dried and tight but that horrible pain is finally gone. The doctors believe my left leg down near my ankle will be scarred which is ok with me as long as it stays gone. Sara my wonderful, gentle infusion nurse told me I was getting pretty pink coloring back, I did not look so pastey anymore. So I am positive, or almost positive about the rituxan.

As for my marriage, I honestly believe my husband still loves me but I know my illness has taken a toll on him and on us as a couple. I know he is there for me but I also can feel and see his attitude and it clearly shows he has basicly had enough of this rollercoaster of a ride. It is finally wearing him down after five years of marriage to someone with a illness that seems to not only tear the person apart that has it but tears family and friends apart as well. I have found myself telling him I feel okay even if I am hurting and feel like crap. If I burst into tears it is normally while I am doing dishes or in the privacy of the bathroom. I do not talk about my worries and fears with him often dealing with them alone. Funny thing is I do no blame him, you can only take this illness for so long and it breaks you down, as well as your family and friends. So I come here for the strong shoulders to cry on. Does that make me selfish? :blush:

I thank you, each and every one of you beautiful wonderful people for being here when I need to cry, vent, laugh or even rejoice. You all are my family in my heart, and I do not feel alone when I am here. So for that I thank you and cherish you.

 

[beci]

I am really sorry to hear what you are going through at the moment like so many people on here have said life is not fair, its cruel and always affects the best people. You sound like you all stick together as a family and thats the most important thing, you all fight for each other.

My thoughts and prayers are with you and I hope that together you will get through these terrible times. We are all here for you any time you want a chat. Keep strong and keep smiling. :wink2:

:grouphug2:

 

[sjink]

Hi Mysticred
I don't think it is selfish to come here for a shoulder to cry on. We all need that and groups like this understand how lupus can affect ALL of your life. I've done my fair share of crying in the bath and washing dishes. But I did learn it is best for me to share my fears with my partner. I know he finds it really hard at times when we can't go out together or I just take to bed or am all woolly brained and sleepy, but he prefers to know how I feel as he deals with it better than when I try to pretend I am OK. But different people have different coping mechanisms and lupus can be very hard on all the family.
You have a lot of extra worries with Sierra and with your son being DX as well. So I think you should come here for support and help. I am sure you would be one of the first to offer help back when you can.
Sending you love and gentle hugs
Sara

 

[pennylp]

Wow, how much can a person go through... I am so terribly sorry you and your family are going through such a time.... How awful for your little grandaughter... It sure isn't fair... it is one thing for us to be sick but not children.... My heart aches for you.... I have just became a grandmother and I just can't even imagine what you are going through....
And of course this can't be helping your lupus...
If you ever feel like chatting with someone email me... I would gladly be a good listener ... My prayers are going to be with you and your family today... Sending you much love and hugs...

Love Penny

 

[macfamily53]

Dear Mystie

I am just so not sure of what to say except that life is just to much sometimes but i sure am very gkad you do know that we are here for you for support and prayers.I am sure glad yoiur grandaughter was able to come home for her birthday and the family time.Please keep in touch with everyone here and let us know how you and your grandauighter are doing.I can see you would feel overwhelmed everything right now but for your grandaughters sake you need to try to hang in there.She would not want grandma to get end up in the hosptial either.My prayers are with you both (((hugs))).

Tammy

 

[keebler]

(((Mysticred)))

I am sorry to hear that your precious little granddaughter is still having seizures. My heart breaks for her.

Your granddaughter, you and your family are in my thoughts and prayers.:grouphug2:
:flowery:
Lyn

 

[Zoi]

Mysticred,

I'm so sorry to hear Sierra has to go back into hospital because of her seizures....

I can't imagine what her parents and you are going through who have to watch her go through all this.... I hope Sierra's condition improves very very soon...

My thoughts and prayers are with you and your family :grouphug2::grhug:

Take care,

Zoi

 

[acard]

Hello,:there:
I just want to say that I am so very sorry for all the stuff that you are going through. This site is here for inivuals like us who need support. I know I sure I am glad I can be here for you and I know I come here so very often myself needing these wonderful peoples shoulders-it is okay.
This too shall pass-is what I always ty to remember in the midst of bad news.
Sierra IS going to get through and be a healthier young little lady!
She has gone through so much and is obviously a strong fighter and will win this latest barrage a seizures.
I will pray for you and your family!!!


Hugs,
Becca

 

[karen.w.]

(((((((((mysticred)))))))))))

I am so very sorry that sierra has to go back into hospital and that you & your family are going through so much. life is certainly unfair sometimes, I hope everything changes for the better very soon.

I am glad you can come here and off load mysticred, we will always be here for you :hug:...I wonder if you have also considered some counselling? you have so much on your plate right now it might help to have some professional help too.

sending you all positve thoughts and prayers.
I hope sierra has a lovely special birthday, she certainly deserves it!
lots of love..karen x

 

[lazylegs]

Please wish Sierra a Happy Birthday for me. She will be anxious about the following day, but I hope she can at least enjoy her special day.

You have more on your plate than any normal human being could be expected to handle. I can't even imagine the anxiety you must be going through. Vent all you want here, keeping your feelings bottled up isn't good.

My thoughts and best wishes will be with you and your family during this trying time.

Take care,
Lazylegs

 

[Mysticred]

I love you all, thank you for your well wishes.

Sierra had her birthday party on the 4th her favorite holiday even over christmas. My daughter took her to her favorite park where friends and family was there to surprise her. They had a cook out making all of Sierra's summer food. The kids were allowed to run and play and Sierra walked with braces on, she got tired easily so she would go back to her mom and rest. That night they took her to a fireworks show and she was in seventh heaven.

Tomorrow I will call her on her birthday, I will happily pass on your well wishes and your wishing her happy birthday. She is such a strong kid when I talked to her yesterday she told me that she was ok with going back into the hospital because it will make her legs stronger and she can still be on the cheerleading squad as their mascot when school starts back up. For the last 2 years she has been the school's cheeleading teams little pompom girl, she goes to practice with them and to home games with them and they all take special care of her.

As for me seeking counseling, I have thought about it. I just drag my husband from doctor to doctor so much as it is and to add another one would add to the stress our marriage is going through. But I think I will talk to my primary care doctor and my rhuemy doctor as well. I .myself think this is a wonderful idea......my husband has different veiws of it. I think if my children lived closer it would be easy to ask them for help, but I am in South Carolina and they are in Oklahoma.

I know I need to try and think of myself and my health, which we all know what that is like. I know stress is a big no no with having lupus. But it is so hard to close out what is going on in my life, my kids life and Sierra's life. I feel so for my daughter because she deals with Sierra's illness and now knows her 6 year old son Kaleb is autistic. He had been missed dx with ADHD
and the medicine they had him on for the ADHD just made him worse, so now she is also dealing with that, so my heart goes out to her. She goes back and forth about moving her to SC but she is afraid to leave Sierra's doctors, simply because Sierra has had them since she was born and they all know her and about her illness. Her biggest worry is that there would be no doctor here knowing how to deal with Sierra's platelet problem and the stroke and now these seizures. She is not trusting of new doctors simply because of Kaleb being missed dx for all these years.

Well thank you again for letting me ramble on. I truly believe each and everyone of you are awesome. Thank you for being here for me and all the others. And thank you for listening. :blush: