Tessa update #2

Posted on May 19, 2015

0


Update on Tessa #2

We had another MRI today this time getting higher res images of the already known affected areas. A couple pieces of news came from this. The Chiari Malformation that appeared in the first MRI has turned out to not be there. It seems that the position of Tessa’s head during the first MRI gave a false indication of this.

Transverse Myelitis seems to be confirmed now, and the inflammation along the spinal cord and white blood cell activity has also diminished since Friday night’s MRI, which is good news. The not as great bit about this is that there has been little to no actual change in what Tessa seems able to do, as far as muscle function. Through a consultation with a wonderful Physical Therapist today, we believe her legs, lower core muscles and even very slightly her upper body including her arms may be affected. She has no trouble breathing and her dexterity in her hands is still quite good, just maybe not as strong.

What happens next?
Well that depends on what kind of reaction Tessa has to the current steroid treatment. If she does not show noticeable improvement in the next few days we are likely going to be moving on to a different form of treatment, possibly in conjunction with the immunpsuppressing steroids. We won’t go into those now as it is still a hypothetical option. In an ideal situation where Tessa responds to steroid treatment we might leave as soon as the end of the week, though we are not holding our breath for that option as she has not yet shown any muscle improvement since steroids were started. Regardless of treatments, this will be a long road to recovery measured in months and possibly years. There is lots of physical therapy in our future.

How are we doing?
John and Clarissa: We are holding up relatively well, taking turns sleeping in the hospital and the other one staying with Clarissa’s sister and brother-in-law’s place, so that one of us has a whole good night of sleep. We are feeling encouraged by the news today and our conversations with the doctors. We continue to hope and pray that our little girl will make a full recovery and that one day she will be able to walk.

Valencia: She seems to be adapting well. Most days she spends with some one in the family (Aunties, uncle and grandparents are taking her to parks, beaches and tomorrow she’s going to the zoo with one of the free passes given to families here). This allows us to be with Tessa and be more fully present as we engage with doctors and medical decisions. Valencia is, however, as you can imagine, showing signs of heightened emotions. The other day John got back to the house just in time to put her to bed. Which turned into a two hour event of which she screamed “I don’t want to go to bed, I don’t want to go to bed!” over and over for an hour.

We are overwhelmed with love from everyone who has sent us notes of encouragement or just told us they are praying. We literally have thousands of people praying for us all across the world and we are feeling at peace. We know that our God loves us. We know that he is working this out for our good even though it feels terrible.

Thank you for your prayers and please continue! We would love to see a miracle be it a fast or slow full recovery. Lots of love and keep the notes coming; we really treasure all your support.

Advertisements