Tessa Update #4

Posted on June 1, 2015


Wow, things have been happening fast for us and we have not had much time to keep you all in the loop. So, here is a quick re-cap of events:

The docs feel that Tessa is improving but they want to give her a better first foot forward. So, we begin treatment with IVIG. IV is just what you would think it is and IG is Immuno Globulin. Basically they produce this blood plasma product using the blood from at least 1000 people. They strain out the antibodies and clean it up and then put it into folks with an IV. This constitutes a drastic altering of their immune system but in our case change could be and likely is good.

The doctors tell us if Tessa handles the second infusion of IVIG well we could do the remaining three days outpatient! We go home that night in what seems like a whirlwind that does not seem to be letting up.

First out patient infusion. They did not feel good about leaving Tessa’s IV in when we left the hospital so it was removed and a new one needed to be put in. Over the course of our time in the hospital we discovered Tessa has small and wiggly veins most IV’s took at least 4 attempts before they found one that worked. In all in two weeks she had over 20 needles stuck into her poor little body and she has the bruises to prove it. After 5 tries and 30 minutes of screaming, they finally resorted to a head IV. Looks crazy but it is often an easy place to put them on young kids as the veins are easy to get to.

Friday and Saturday:
We finish the IVIG infusions, sign up for supplemental insurance through the state and Tessa no longer looks like the borg from Star Trek. We have a picnic near a lake with Clarissa’s family to celebrate being out of the hospital.

How we are:
Tessa is doing well returning to her happy self but not all the way there. We are on a monthlong tapering of steroids (apparently you can’t just stop those things cold). This continues to make her a bit grumpy. Also she looks to be about ready to pop out her first tooth, which makes her very happy…and may be going through a growth spurt so she’s waking a ton in the night to eat more.
As far as progress in regaining use of her muscles, she has significantly more strength in her trunk than before, she is able to sit up a bit with support and is getting good at “tripoding” with her arms. We are also beginning to see small spontaneous movements in her toes and feet (not as a response to pain)! These are small, not large movements, but they make us really excited. We may have seen some movement in her legs as well that is spontaneous but it is very infrequent and not very re-producable.

Valencia has been loving all the time with her extended family. She is a bright, energetic and really quite flexible kid, but even she is really needing some stability and some time with Mom and Dad and Tessa. Her world was already turned upside down with the instability of leaving Kenya and traveling so much, and this whole thing with Tessa has kinda just been too much for her. She also, of course, can’t really understand everything. When Tessa came home from the hospital, she said, “Tessa’s legs are all better now? She will be able to run with me?” We respond with sadness, “No, Tessa’s legs are not all better yet; we still need to pray for her.” In her attempt to understand all this Cia also recently asked, “Is Jesus a doctor?” She has also not been sleeping well, so our whole family is feeling pretty sleep deprived.

Clarissa is feeling tired, overwhelmed, and unmoored. We expected this time in the US to be very transitional, but we now have a deep need for some stability and predictability. She would like a sleeping vacation; someone must sell that sort of thing right? Dark quiet room, no kids…

John is the optimist of our family. He is excited about Tessa’s progress and hopeful for a full recovery. He is also in Pain. He may have pulled a muscle in his shoulder last week rotating the tires on the car, it is taking a while to heal and causing making packing harder.

What is next?
We plan to return to spokane this week and basically try not to really leave for a month. We need stability and we need to unpack and be able to have our own space. We hope for good time together to be able to connect with friends and supporters over this month but at a much slower pace than originally planned. If you are in Spokane we want to see you but we are probably going to be pacing ourselves a bit. Thank you for the continued prayers. We are really thankful for them.