Announcement

Collapse
No announcement yet.

Doctors say nothing else can be done for my 17 y old daughter please read..

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Doctors say nothing else can be done for my 17 y old daughter please read..

    Hi i'm not even sure what to write here.. so i will post this

    IN DEC. 2010 MY DAUGHTER ELIZABETH 15 Y OLD AT THE TIME HAD A MASSIVE STROKE.. DURING THIS PERIOD OF TIME SHE WAS DIGANOSED WITH A DISORDERED CALLED MOYAMOYA.... THIS IS DISORDER WHERE THE CAROTID ARTERY CLOSES OFF AND NOTHING CAN BE DONE. IN APRIL 2011 AND MAY 2011 THEY DID BRAIN BYPASS OPERATIONS TO TRY TO GET HER BRAIN THE O2 AND BLOOD SUPLLY IT NEEDS. THEY DID NOT TAKE. THEY HAVE TOLD ME THAT SHE WILL CONTINUE TO HAVE SMALL TIA (MINI STROKES) TILL A STOKE TAKES HER LIFE.. SHE ALSO HAS RESTRICTIVE LUNG DISIEASE (THE MUSSCLES AROUND HER LUNGS ARE NOT WORKING) AND NOTHING CAN BE DONE.. SHE HAS A COUGH OUT PUT OF 35% AND A INTAKE OF AIR OF 45% .. SHE WILL BE 18 IN DEC.. SHE HAS THE AUTISM/ASPERGERS, NEUROFIBROMATOSIS, ADHD, AND MILD SPASTIC DEPLISA CP OF HER LEGS. THEY DON'T KNOW HOW MUCH TIME SHE HAS JUST KNOWS THAT SHE WILL CONTINUE TO HAVE SMALL STROKES TILL A BIG STROKE TAKES HER LIFE..

    I am ok most of the time then every once and a while something happens and I just start crying.. like yesterday was a bad day for her for TIA's mini strokes and I was very emotional knowing that it could be anytime.. I'm trying to get her to live life as normal as possiable, we are waiting on make a wish to come through for her..

    I have good days then i have bad days with my emotions of knowing what will happen and not knowing when...

    Thank you
    mom2nfautism(moyamoya)

    #2
    Dear Mom2, I am so sorry you are facing this heartbreaking diaganois, Honey you will need to live all your moments with your precious girl in a right now , that is the best. I have a grandchild with cystic Fibro. and their lung function has had those same numbers , it is heart breaking all they suffer through.
    I do hope make a wish comes through for her and you all can have some great times that you can talk about over and over, and relive and celebrate your precious time together.
    God Bless you and your daughter , please come and let us hear from you ...someone is usually on at any hour of the day!
    This isn't my fourm, but when someone's heart is breaking , we can certainly reach out to help give some support if we can, hurt and pain is something we all experience at one time or another, I am sending you a cyber hug (((hug))) and prayers for the strength you need to to make it throught this hard part of your life.

    Comment


      #3
      Mom I was just wondering how you are faring. Sounds stupid to say cause I can't imagine but we are here for you if you need us.

      Comment


        #4
        haning in

        hi I'm hanging in there.. she had a bad TIA yesterday with vomiting but she is doing ok. thank you

        Comment


          #5
          Mom, your story is heartbreaking. ((((gentle cyber hugs)))) Pati

          Comment


            #6
            ((((((mom2nf))))))

            My heart goes out to you, and I'm here to support you through this difficult journey. I have been and am now where you are.

            I call it "pre-grieving," where we try to steel ourselves for the predicted outcome. Our thoughts go in directions no parent should ever travel. The stress of wondering if and when is enormous. We strive for normalcy, while being protective. We drink in every aspect, every nuance of our beloved child, keeping them close to us.

            Please allow yourself to feel all of your feelings, to let the tears flow, as they are a balm for your soul. Embrace Elizabeth, and cherish the moments you have together. Create new memories.

            May you find some comfort in knowing that others are praying for you and Elizabeth and that we will be here for you, whenever you need to talk and share.

            Sending healing and strengthening prayers ~

            Love & Light,

            Rose
            Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

            Comment


              #7
              Thank you.. her make a wish trip is Aug. 7 to the 13th so excited for her. :)

              Comment


                #8
                ((((((Bea & Elizabeth))))))

                That's wonderful news! My prayers are with you for safe travels and a wonderful experience. I'm sure that your camera will be working overtime!

                Meanwhile, please keep us posted on how Elizabeth and you are faring.

                Love & Light,

                Rose
                Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                Comment


                  #9
                  Gettin' to be time! Hope all is going fairly well so you can enjoy a bit of excitement.

                  Comment


                    #10
                    I'm so sorry to hear that! I have spastic diplegia myself. As long as she has a happy life,albeit a short one, and feels loved, it is all worth it. I hope you do not mind my asking, how did the trip go?

                    I will be praying for you!
                    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

                    Comment


                      #11
                      ((((((Bea & Elizabeth))))))

                      Checking for an update from you. Hoping that all is well and that Elizabeth was able to enjoy her Make A Wish trip.

                      You are in my prayers.

                      Love & Light,

                      Rose
                      Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                      Comment


                        #12
                        not good news..

                        she had a good make a wish trip.. she had a TIA while on the tirp that made her sick at her stomach.. and then on way home from trip she had TIA all the way home...

                        When we got back we finished packing up to move to texas.. the day before we loaded the truck I took her to her lung doctor and got bad news.. In feb. 2012 her muscles around her lungs were down to 35% use.. well in Aug. of 2012 they are down to 5% use..

                        which means if she gets a cold, it will turn to phemunioa and she may not recover casue she can not cough things of her lungs anymore.

                        waiting to into NF doctors in Texas..

                        Comment


                          #13
                          ((((((Bea & Elizabeth))))))

                          Thankfully, Elizabeth was able to take her trip, but I'm so sorry that she suffered with TIAs. I do hope that she enjoyed some of her trip.

                          She has so many challenges. God Bless Her. And all of this is so very wearing on you. God Bless You.

                          Did Elizabeth's lung doctor mention the possibility of a trache? It is beneficial for deep suctioning to keep the lungs clear and the SATS up. My son has a trache, and I know it's saved his life numerous times in just the past year. It isn't scary at all. Like everything else, you get used to it. If the docs suggest a trache, let us know, and I'd be happy to answer any of your questions or concerns.

                          Keeping you in my prayers ~

                          Love & Light,

                          Rose
                          Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                          Comment


                            #14
                            I'm so sorry to hear that her lungs are worse!! But I'm very glad she had her trip. The trache might help.
                            Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                            My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

                            Comment


                              #15
                              mom2nfautism - As a minister I am praying for you and yours and also praying for a miracle to happen - I have witnessed many things so I am always hopeful. Tons of gentle hugs to you and yours, as well as blessings and prayers. I am so glad That Make A Wish is sponsoring ya'll - I am sure it will mean the world to you and yours.
                              Love and Light
                              Blessings
                              Alex44
                              Skypilot

                              Comment

                              Working...
                              X