Step by Step

I apologize that updates are few and far between. We have been in such a time of transition and new things- therapies, spring cleaning, busy schedules and at the end of the day, it’s all Brad and I can to just fill each other in, if that. We so appreciate the fact that so many of you still come to the site on a regular basis to check on our sweet little boy- who is growing up so very quickly before our eyes.

We made our first trip as a family- back to Baytown (where we lived before Grapevine) to visit with one of the teens in our youth group who was just diagnosed with lymphoma. It was the most stressful trip I have ever taken in my life- filled with fears that didn’t happen, and fears that did. We survived though, and with some of those fears conquered, I am eager to do it again. We traveled through horrible weather, almost had to sleep in our car because all hotels were booked, ran out of one of his medications, had an allergic reaction to the suspension the new pharmacy used, but we survived. We were able to find a compounding pharmacy and get his meds in three hours, and were put in touch with an incredibly sweet couple who opened their home for us in Corsicana when no hotel had a room. For anyone who has ever been in a situation like ours, it is easy to let fear control where you go and what you do. We don’t want to live our life that way, but I can’t just jump off yet either. Baby steps have become a crucial part of our life.

Brock was an awesome travel buddy, but a big part of that most likely has to do with the fact that the seizure medications he is on make him very sleepy. We really feel that Brock is on way more medication than his body needs, so we have been in contact with his neurologist. While this is very “non-textbook”, they have agreed to consider weaning Brock off medication- one at a time. The first step in the process is getting an EEG. Brock had that done on Tuesday. These particular test-days are terrible for our family as they are very high stress and rule-oriented. The rules of this particular test included needing to be sleep deprived, alone, and hungry for the appointment- which caused tears for everyone. Brock was able to give them exactly what they needed though- sleep time, awake time, and he even looked right at the lamp for the strobe light portion of the test. We will hopefully hear back from neurology by the end of this week- but if not, early next week. It is our prayer that it reveals he did not have any clinical or subclinical seizures and we can begin weaning him off of one of the three seizure medications he is on.  

He really is doing so well- he smiles, coos, and can now roll over from back to tummy and tummy to back! He loves music, and is fascinated by his hands. He hates the swing and tummy time. We are eager for the sun to stay so we can get out and about and enjoy the outdoors as a family. I have no doubt that this summer will be incredibly difficult as the kids and I stay home and daddy goes to camp alone…but I pray and beg that this is only a season for us. Please continue to lift up Brock’s health to the Father in prayer- we would be ever so grateful.

I am so worn out physically, mentally, emotionally, and spiritually. I run on empty. So, this weekend, Brad and I are leaving everyone for a night to ourselves- Thank God for Grandparents. There is still so much anxiety involved with leaving Brock, even when he is doing so well. There are instructions to write, meds to prepare, and forget even attempting to clean the house. Please pray that this time away can be refreshing for us as a couple and individually.

Baby steps forward equal bigger steps over time.

Until next time,

Taryn