Alex and Maddy

Alex and Maddy

Wednesday, January 7, 2015

Maddy Update

This is an update I prayed I would never have to write. We met with Dr. Koenig yesterday morning to go over the results of the brain MRI. The MRI was normal, however at this point Maddy meets criteria for a "definite Mitochondrial Disease".  I have considered the possibility as Maddy has had some health concerns, but I thought there would be more testing. I did not realize she already met the diagnostic criteria. I am sad, but ok. Our children have totally different presentations and we will treat them as individuals. I know we will (and are) intervening much quicker with Maddy so hopefully she will not have to face all the struggles Alex has.

We spent the rest of the appt discussing the neurologic concerns with Maddy's development. Her brain is fine. There is a discrepancy between the development of her upper and lower extremities. Dr. Koenig said there are some definite problems from a neurologists perspective. The way Mad holds hers legs, their movement, the reflexes, etc are not normal. The next step is to do a spine MRI. If that does not give any answers we will have to look at nerve function. In the meantime, we are to continue PT.

I have not received any results on the bone marrow biopsy yet, but Dr. Koenig feels like the hematology issues are definitely related to the bigger picture.

On the bright side, Maddy did really well with the procedure and is happy to be home. She is a little sore, but playing and smiling. Alex was so good during the trip which was so helpful for me.

Please pray for my precious children and their health. Please pray for peace and for my mama's hurt that is hurting at what my babies have to endure.

Ali

4 comments:

  1. Oh Ali, I'm SO sorry! This is something I can totally relate to with us having Ryan. It's such a scary thing, but thankfully she seems less involved. I've been meaning to tell you, my sister had neutropenia as a child and took neupogen injections for years! She's an adult now and her blood issues have completely resolved. Praying for your family!!

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  2. Hugs and prayers. I know you will armor-up and fight hard for both of your amazingly precious kiddos, but I also know that under that armor is a tender soul that's already fought is much!!! You will remain in my mind and in my prayers along with Your babies!!

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  3. hugs and prayers for both your kids.

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  4. May God comfort Alex, Maddy and family. Continued prayers!

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