Shhh, I'm talking to the Doctor

Thank you for all your prayers! Thank you for all the food and play dates!! And thank you for encouraging us with cards, tokens of affection, thoughtful gifts and emails! Thank you, family, for taking days off work to come watch our children while we hit the HWY for appointments. The collaborative effort of all of us has given me such strength and peace. "Strength in numbers" was chalked onto my driveway when I drove home for the first time after the trauma. It has held true!

Yesterday was a long day in Fort Worth. We saw Dr. Cheng (neurologist) at 10:00 am. She came in and said, "Wow, Ross you look so good! You are all better!"

It was hard to see Ross' face when he had to say no. He wants to believe he is all better. I want to believe he is all better!! But, he isn't. Those of us who know Ross can tell he doesn't look all better, but all Dr Cheng has to compare to is what she saw in the hospital. (He looked pretty bad there with excruciating headaches!)
The night before our appointments, he was unable to follow conversation and was very confused by simple questions. It scared me a little bit, so of course I made him sit up in bed and try harder to have a conversation with me. It was strange. He did not comprehend half of our conversation. He would answer off subject. It was like talking to a drunk man. :) He is not like this all of the time. Mainly when he is tired. He has had a low grade fever twice in one week. We don't like that either.

Dr. Cheng lowered his anti-seizure drug hoping to help with the sleepiness/drunkenness. She also added a drug to help with the headaches he is still having everyday. The drug is designed to lower swelling or inner-cranial pressure in the brain. It is given to head trauma patients and to those with migraines. It's a diverse drug and she hopes it will help with the eyes as well.

The second prescription from Dr. Cheng is to exercise! To get his body and brain moving! Funny, huh? She said even if his brain is swollen, exercise will not hurt that. The dizziness makes this challenging, but Ross is up for the task! So, if you see him running down the street, watch out if he's in the middle of the road! ha! He's got to work up to running... he walked about 8 laps around the house today, bathed the kids, and served himself often. He's conflicted inside because he doesn't feel well, yet he wants to do his best to follow Dr. Cheng's request. I'm considering getting him a gym membership so he can get on an elliptical machine and lift some weights. Ross doesn't want to go because of all the germs and his risk of picking them up. WE will see. We hope that in a month at his re-evaluation, he will be doing much better and Dr. Cheng will run an EEG to find a normal brain wave pattern!

Now, let me introduce Dr. Jones the neuro ophthalmologist. He is from UT Southwestern and has an office in Fort Worth he visits Tuesdays and Thursdays. He is very thorough! (4 hour appointment, mostly waiting) He found Ross' eyes to be swollen. :( The optic nerve is swollen which made him conclude Ross' brain is probably swollen. He wanted to do another spinal tap to find out the exact pressure, but at 5:30 could not get clearance from Dr. Cheng who had just left for vacation. He felt the new medicine Dr. Cheng prescribed would be a perfect fit for the swelling in the eyes as well. So, he sent us home with more questions and more "self-research" about swollen optic nerves. I don't like what I've read so far... he has typical symptoms from the infection. I pray we have caught it in time to preserve Ross' eye sight. I'm wondering why we didn't see a neuro ophthalmologist sooner?
We go back next Thursday to measure the swelling.

Please pray for Ross' eyes and brain. Pray for us to feel like we are improving or for us to have clear signs that we aren't. Pray for us to have PEACE as we push Ross' body to exercise and as we wait and watch for his body to respond. In all of this, there are so many questions and unanswered theories as to what virus Ross had. If a spinal tap would give more info to the doctors about this as well, we are all for doing another as long as it is safe for his brain.

Here's a scripture my sister in law prayed over us Thursday and it's just perfect! Please join her in praying this scripture for us...

Romans 15:13 in the Message says: "Oh! May the God of green hope fill you up with JOY, fill you up with PEACE, so that your believing lives, filled with the life-giving energy of the Holy Spirit, will brim over with HOPE!"

So, you're probably wondering how we are feeling emotionally. We are both a little frustrated. This is to be expected with any prolonged recovery. Letting go and healing and becoming who we really are is not easy (Rachel Naomi Remen). We are not frustrated with our doctors. We have been cared for extremely well. We are both so tired that we forget to ask certain questions even when I have them written down. ha! (or grrr) I think of new questions to ask after we get home. (grr, grr)
Honestly, Ross has a hard time answering questions about how he feels. He has a difficult time assessing. He has never been sick and when you are sick for a long time, pain or discomfort starts to feel "normal". We journal at the end of the day short notes about how he felt that day. I know Ross is not back to himself because it takes a long time to get his mind to process and understand simple questions. His classic response these days, "I don't know." And you all know me, I won't settle for an I don't know. So, I put on my nurse hat and start probing. :)

We make a great team! The kids are doing well! They are great therapy for us!! Liam is such a ham, and Myra's sweetness melts us! Liam is wanting to play with and be held by Daddy more and more each day. Ross is a great Father!! He is a wonderful husband and friend! We are BELIEVING in HEALING and focusing on positive thoughts!! God's truths and God's peace really do reign most hours. We look forward to the day when we post, "All better!!" Until then, keep us close to your heart.

* Myra calls the doctor through out the day on her "cell phone" and is sooo serious about her conversation regarding her baby doll. She's even asked me to be quiet because she was talking to the doctor. She leaves and takes her baby to the hospital and comes back. Myra always tells me, "See, I told you I was coming back." I love how kids cope. :)

Good Grief

I cried tonight! Hard!
Is it okay to be scared? Ross said, "Yes."
As the shock and awe of what we've gone through starts wearing off and reality starts creeping in, the emotions are coming with it. I've needed to cry. You know how women are- a good cry gives such release and clarity. I've only been crying a tear here or there over random songs or certain parts of Tangled. :) Tonight, as I tried to muster up my sleep, I just sat here next to my ALIVE and always handsome husband and cried.

Today Liam turned 2!! The emotion I have at my children's birthdays is up and down under usual circumstances, and today I just felt numb. I am very tired from a long night of checking Ross' temp and dealing with the fear of "it" happening again. But, I felt like I wasn't ALL there with my sweet boy's monumental day. I felt like WE weren't all there.
(I'll post pics of the celebration when I get them from my photographer friend, Jordan. It was a great party!)

I don't want to sound depressing to anyone, and hope that you will read with the framework of 'this is my place to post my thoughts as we grow' and embrace my transparency. That said, today's party was a realization of how we aren't functioning in normal Thomas Family Four ways. It hit me square today for some reason. I LOVE birthday parties, baby showers, and weddings! Celebrating life and love are one of the things I can get OCD about. I get all squishy inside and it explodes into a party!! But today something was "off".

Right about now your saying to your self, "Duh, Jamie!" When "it" is happening to you, you feel, or at least I feel one step behind in reality. It's part of trauma, I think. So my trauma-fied, sister tells me. ;0)

Today's celebration felt incomplete. Please don't hear me be ungrateful... Soooo grateful for the friends and family who came to celebrate and helped me pull off a party in the midst of our "current situation". I'm beyond words THANKFUL that our family is still the FOUR of us and Liam is well!! It's just the gut wrenching reality that the head of our family is somewhat absent. (resting his head-ha! I couldn't resist) I feel lonesome for the old us.
It was comfortable.
It was easy.
It is gone and we are forever changed.
Praise God for the GOODNESS being worked out in our troubles!!

I know healing takes time... you who know my personal health journey know I KNOW about healing. There is something inside me not comfortable with how Ross is doing. (I'm calling all the professionals Monday, don't you worry.) I don't know if it is fear based or intuitive based... I've been to strung out to take the time to meditate. It's just tricky and so technical when dealing with the brain! Not many answers and only some understanding. It's weird when doctors look at your husband with fascination and intrigue! (Most scratch their head- they don't even realize they do it.)

Ross is sleeping soundly next to me as I type tonight. My now TWO year old sleeps in his big boy bed and my four year old princess snoozes away. The FOUR of us under one roof, blessed beyond measure and my emotions go haywire. Good Grief!

Today's feelings were just unexpected for me.

Peace and Good night!

Jamie

P.S. Happy Birthday, my precious, red-headed son! I love you infinitely!