Tuesday, March 22, 2016
Years ago I would lie awake for hours with a million things on my mind.. I don't do that anymore. I think partly because Mary is there, so I relax, and fall into a deep sleep rather quickly.. The other reason, my mind is like scrambled eggs - all day, every day. I find myself in interesting conversations with some of the most amazing people I've ever known, enjoying the conversing then suddenly I can't remember what we are talking about.. It would be something if it was isolated, but it has become multiple times daily. Maybe it's older age, maybe I'm losing it - for now I will attribute my brain to being well done scrambled eggs.
When I last left you all, we had traveled to Jackson for testing to happen on Rhett. We have received the results and thankfully the tests did not show any indications of Leukodystrophy(s). We are so thankful to know things have been "weeded" out. As of today our plans are to continue his weekly physical therapy and follow up with the neurologist in May. We are still waiting on the genetic test they first ran to come back. There has been some reluctance from the insurance company to pay for the test, so our 3 week window has now become almost 7 weeks of waiting to hear. We are optimistic and have faith all will come out in Rhett's favor. In the meantime, Rhett did receive tubes two weeks ago and has been in a much better mood!
This past weekend we celebrated Noah's 5th Birthday and Levi's 2nd Birthday.
The boys both had a very great time and they especially enjoyed the bouncy house - as did we all!
We have been on the run so much lately that I was able to take a week away from work to spend time with Mary and the boys, we didn't do much of anything all week - it was rather nice. I was sure hoping to catch up on sleep and I bet my wife hoped that as well. We did enjoy multiple evenings of working out at the gym together - she is way more dedicated than I ever could be. It has been nice to turn my work brain off for a moment. Today was my first day back to work and I'm pretty sure it was harder on Mary than it was on me, raising these boys doesn't come easy - I give her big kudos.
We also celebrated our niece Ryleigh's 2nd Birthday this past weekend as well (she is 3 weeks older than Levi). While there, Rhett stood up against a child's table and side stepped with much help from his Mawmaw - kind of a cool day for all of us. He also decided to get up on all fours and take one crawling step! All the while his Mommy was in bed sick at home. :( I'm sorry she had to missed out but thankful for his progress.
Many things are happening in our world. We're hoping to continue the positivity that we have been blessed with, and we will continue to search for answers for Rhett. Noah & Levi are continuing to be Noah & Levi - hopefully they are learning the routines we are modifying for them.
Thank you all for your continued prayers for our family, we are very grateful.
Sunday, March 6, 2016
Moving right along, last week when I wrote we were waiting for Monday to roll around to hear from the Neurologist regarding Rhett. Between physical therapy and his afternoon ENT appointment the Neurologist called to say Rhett would need testing in the big city of Jackson, MS on Tuesday. He said many things, regarding what the testing would eliminate or what it could tell us and he also made sure we knew that traveling to Jackson, although far, would be the best place to go. He specifically said they would be checking Rhett's genetics for enzymes that assist with the nervous system - as Rhett can not independently control either of his legs well. After his call we saw his other doctor who has scheduled surgery to place tubes in Rhett's ears to alleviate his ongoing ear infection - poor guy can't catch a break!
Tuesday morning we headed out to Jackson, the about 3 hour drive took us about 4 to 4 1/2 hours to make, then the same amount of time on the way home; have I mentioned Rhett Solomon does not enjoy riding in the car? He will scream for hours if you let him. Once arrived in Jackson everything went very fast, I will say we were at the University for less than one hour. And he did what we all would do if we were held down while people poked us with needles, he was screaming. These tests have to be handled a special way and we should have the results Tuesday!
Rhett is very happy, every day something excites him and in turn makes us believe more and more that he will be okay. We have faith. And we believe that what is meant to be will be and we will adapt if necessary to the changes that may come.
We all went to the Zoo on Wednesday, am I boring you yet? Noah turned 5 years old. It's hard for us to imagine Noah not being here but he definitely has been around for over 5 years now.. Kicking, screaming, kissing, loving and all the things Mama's boys do. He insisted upon beginning his Birthday with a trip to the Aquarium followed by the Zoo.. How convenient that his gift from us this year were season passes to both mentioned and the Insectarium.
He told me at the end of the day, "this is the best birthday ever". And I believe him!
The amazing thing about this week is all the positive things that have been happening. The children are doing and acting better than normal, except bedtime - still working on that, and our stress levels have dropped. Levi even stayed the night with his grandmother this week - allowing Daddy+Mommy to have an evening out while Rhett+Noah enjoyed an evening at home with their other grandmother. We even attended church for the third consecutive week in a row, that hasn't happened since before Levi was born!
I want to close by thanking each of you that have sent in positive messages to either of us. To each person who has prayed for my family and for Rhett. A special thank you to the people who have shared our story, called, came by work or home. We are so thankful for each and every one of you. Our blog last week was read by over 1000 people! Monday we take Rhett for ear surgery, Tuesday we should hear from the Neurologist regarding the most recent testing and Friday Rhett has his physical therapy - keep us in your prayers.
And because I'm still learning, I'm able to say this photos in the blog may not be in the correct place on the phone version, be patient with me as I continue to learn. (: