We met with Dr E., Hannah’s new genetics doctor today. I really liked her from the standpoint she seemed to know what she was talking about, she was upfront, and she didn’t sugar coat anything.
However, based on what we told her and her examination today, she believes that Hannah likely has somewhere on the spectrum between type 2 and type 3. The most concerning features were the obvious hepatosplenomegaly at birth (enlarged liver and spleen) and what she considered abnormal eye movements in Hannah. I’ve noticed that it does take Hannah awhile to find something and to focus on it, but she did a eye exam on her, and she found that Hannah’s eye movements are similar to what we be considered the first signs of neurological involvement. She also has brisk reflexes in her lower extremities, but that may or may not be related at this point.
She is glad we are meeting with Dr. S next week, as she has worked with him personally for many years. He is a neurologist, and she is a genetics doctor, and they would work together on treating Hannah, as she works with quite a few of his patients. I’m REALLY looking forward to seeing him next week — if anything, maybe he can say she was wrong and type 1 still is a real possibility (she says it is very unlikely that it is a severe type 1, but we just don’t know yet).
I thought type 2 was out of the picture. I was hoping type 2 was out of the picture. If it is type 2, we only have a year or so with Hannah. That just can’t be possible. She thinks it is possibly a slow type 2 or a fast type 3. Both suck, but at least type 3 would give us more years to fight for a treatment.
I spent the whole car ride home from the hospital visit in quiet tears, as Little Girl A was sitting in the backseat with Hannah on the ride home (she was watching a movie in the infusion center while we met with the doctor). Thank goodness she had her Nintendo DS to keep her busy in the car.
So now we wait for Dr. S’s evaluation, and we wait for the DNA sequencing to see if that will give us any answers. In the meantime, she wants us to increase our developmental therapy to weekly instead of every two weeks as well as her occupational therapy, which we will be starting soon.
If you are one that prays, please pray they are wrong, and it isn’t type 2 or type 3 — or if at least it has to be one, make it type 3 so we can work to find a treatment! If you aren’t the praying sort, just keep positive thoughts coming this way for the same thing…
Oh dear heart–you and your beautiful family are in my prayers–I will keep praying for little Hannah… I cannot imagine how difficult this must be–hope and pray…
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I am actually not one for prayers but you guys will have ALL my good energy and thoughts – everything I can put out into the universe to make this be the best case scenario. And my tears…like now. The thought of…well…impossible.
xoxo
Just keep fighting for her and enjoying each day with her. You’re giving her all you can. Remember that you believe there is a reason for her existence, a reason she was brought to you and try to find that reason through the tough battle you have ahead of you.
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Okay, I’ll double up on the prayers for you all. I hope you are okay tonight.
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My thoughts and prayers are with you and your family. I know first hand all the thoughts that are in your head right now. Take one day at a time do not jump to far ahead. Take it slow give that perfect princess hugs and kisses things will be ok. Let me know if I can help.
Oh honey! Take your time to cry… I can only imagine how hard it is. I am sending good, positive thoughts to you and your family as well as continuing to pray for Hannah.
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I am very much of the praying sort. I am praying for you, your family, and Little Hannah!
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My prayers are definitely with you. I hope and pray you find a miracle.
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Carrie, my heart ached for you as I read your message. I sincerely hope they are wrong. I will keep you all in my thoughts.
You know that I’m definitely praying. My heart is just breaking for you. I hate that you have to live in fear. Please remember that I’m here whenever you need to talk.
Wow-Josslyn and I were playing yesterday and she was showing me her belly and I was smooching it and telling her how her belly is special, just like Hannah’s-the giggly baby. For some reason, I had to talk about her to Josslyn; like I had this odd feeling in my gut when I didn’t. It was very very strange how that feeling just came about…but obviously was for a reason. I am sending you all our awesome positive thoughts in hopes that there’s a chance of Hannah having type 1. You are an awesome mommy!
We’ll be keeping you in our prayers and hope that the next news you recieve will be good news.
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We’ll be keeping you in our prayers and hope that the next news you recieve will be good news.
Connor’s Mom’s last blog post..Party Time!
We are praying so hard for Hannah, and for all of you Carrie.
I am so so sorry Carrie. I just cannot even imagine what you are going through. Please know we are praying for you, I’ve had my church praying, and I will do anything I can. Please let me know on any graphics things, I never heard back from you before, and I’m still here if you need me!