I have never hated a word so much in my life. I never knew I hated this word so much until just two days ago.
This was the word Hannah’s neuro used to describe Hannah’s condition to her NIH pediatrician.
“Tremendous amount” of white matter loss in her brain, according to her latest MRI. This was compared to her MRI at the NIH two years earlier. Hannah’s brain has atrophied “tremendously,” and in its empty space is a lot of cerebrospinal fluid.
No matter what we try to do to help “heal” her at this point, it won’t matter. Reality is, there is nothing to help anymore at this point. Her brain is continuing to deteriorate.
Things have snowballed this past month starting with that first hospitalization just a few weeks ago.
Hannah’s NIH pediatrician shared that extreme agitation and problems swallowing are some of the signs of end-stage Gaucher’s type 2. In Hannah’s case, she has lost the ability to control her secretions, trouble swallowing, and is losing control of her tongue.
Friggin’ sucks!!!!!!!! More later…need a break…
We just love you guys Carrie. You are doing all you can to give your precious girl the comfort she needs at this time. We will all continue to pray for you to all find peace in this impossibly hard situation.
It does effin suck! How do they explain the good progress she has been making over the last year? Her motor skills were improving, she was sitting up longer on her own, showing responsiveness to visual stimuli (Mickey and iPad), interacting well with others. The cerezyme treatments seemed to be making a difference. Right?? what suddenly changed?
I am so sorry. I feel like I am reliving part of my journey through your family. These diseases…there are no words for how unfair they are. Sending you love.
Please know, you all are in my thoughts. Hannah has endeared herself to everyone she has crossed paths with, no exceptions. Sending love and strength during what must be an immeasurably difficult time. My heart goes out to your family, Carrie.
There are literally no words. I physically hurt for you. I’ve laid in the dark thru the night staring at the ceiling. Praying. Wondering what words of comfort I could offer. There are no words. Just know that my heart is grieving and aching with you. I had prayed that this trial would not come…that a cure would be found. Hannah is an amazing miracle. She is teaching so many! Her fighter spirit doesn’t surprise me…look at her mom n dad! Prayers continuing to go up for Hannah, for you and Robert and for big brother and big sister.
I’m so sorry. I don’t know what else to say. I’m just so sorry.
Yes, unfair does not even begin to describe this turn of events. Praying for you and your whole family through this time, knowing there will be some special moments you will cherish.
Sending lots and lots of thoughts and prayers to you and to your entire family. *hugs*
I’ve typed and erased… Typed and erased. I hate that it has come to this. I pray for Hannah, and for you all- for strength, peace of mind, and comfort. Love you guys!
I am so sorry, hon. Breaks my heart.
So many thoughts and prayers continuing to come for all of you.
Hate isn’t a strong enough word. Praying. And loving you all so much.
There are just no words that anyone can say that could bring any comfort to all that you are going through right now.
My heart aches so badly for you all and I am madder than hell that our dear Hannah has been to hell and back so many frigging times, it makes me wanna scream. Its just not fair.
You and Bobby have been so incredibly strong through all of this not to mention Ethan and Abby. Hannah is one amazingly strong kid and a real fighter (Of cos look who her parents and siblings are)
Stay strong my loves and our prayers continue for you all!!
Love you all,
Susan
Susan
I’ve never commented before on your blog, but I just wanted to let you know that you and your family are in my thoughts and prayers.
I am a friend of Sarah Knight’s and she asked for people to pray for your family with a link to your blog. I just wanted to say that my family will continue to pray for yours. Your little miss Hannah is absolutely beautiful and I thank you for sharing her with us, people who are strangers. May God bless your family and send you the fruit of peace and the gift of Right Judgement. We will be praying and sending you love and support. God Bless.
Carrie, I subscribed to UB what seems like a lifetime ago. It’s amazing how that community that you and Robert built is still supporting one another all these years later.
I just wanted to let you know that I will keep your family in my thoughts and prayers. I know that there are no words that can take away your pain, but hopefully knowing that there are people out there (many that you have never even met) that are thinking of you and sending you their strength will bring you some measure of comfort in the days ahead.
Hmm Emma had loss of secretions for about a year before she died. Are you using suction? And brain matter Emmas took over a year….I’m wondering why they are putting her on hospice when it seems she has more time! Call me 910.575.1154 or email whichever is easier for you cuz something isn’t adding up to me. But sending tons of hugs!
I am so sorry Hannah is going through this. I keep her and your family in my prayers.