Next step...

Friday we had the opportunity to bring our littlest guy to an initial assessment with three pediatric therapists. I can't express how impressed we were with the time we spent with them. They were so good with our little guy and communicated to us their observations, concerns, and reasons for different activities. I think I was also more prepared for this meeting in that my expectations were more realistic than they were on Monday--I'm learning, even if it is slowly, but in my defense--this is my child that we are talking about here!! Following the assessment, one of the physical therapists returned and explained how they scored our little guy and shared their accompanying recommendations. It was so good to hear their excitment about the things that he was doing and the progress that we have recently seen. They have assigned us to a physical therapist twice a month in their office and then we will have our own homework too. I LOVE homework like this!! The things that they are asking us to do make sense and we can already see how they will be assisting our sweetie in making progress! YEA!! On the other side of things, we were told that there were a few signs of Tethered Spinal Cord Syndrome (TSCS). Interestingly enough, the way to confirm or reject this diagnosis is through an MRI. We were given a short information sheet on TSCS along with the recomendation that we contact our neurologist. After getting home and leaving two messages at our neurologist's office I hit the Internet to learn as much as I could on this potential cause of these challenges. I'm not going to go into detail on it all, but I do know we will be able to handle whatever any of this ends up being.

So, we actually are going to have the MRI done, not just of the brain as had initially been ordered by our neurologist, but of the brain and spinal column. I had to make some calls to the MRI center at Emmanuel as well as to our neurologist (who called me back in person!--I was impressed) to get things in place. If in fact TSCS is our challenge, it is very beneficial to take action as soon as possible to stop further damage to the spinal cord, nerves and associated muscles.

Whew!

I'm actually feeling pretty calm about all of this right now. There are so many other things that could be on our plate that I am thankful for our own set of challenges. It's hard to think that things could be too bad when we see our little guy making as much progress as he is. Just yesterday afternoon he was walking unassisted with a 'walk-along' toy he received for his birthday from Grammy and Grandpa HB. Even though the picture is blurry you can see his big smile!

We were THRILLED and so were each of our boys!

We're going to be okay with all of this. Of course I have my desires for how all of this will turn out, but even if those need to be put aside, we're okay. We are greatly blessed to have each of our "Little Guy Lowes" and I am excited for our family to continue growing together!

One step at a time

I'm not sure what I want to write today. I have many different feelings and the thought of trying to get them down on paper is a bit daunting right now. I guess I was hoping somehow to have the doctor tell us that all our concerns would be okay, that our littlest guy was progressing with his gross motor development at a rate that would catch him up to where he should be. I just wanted the pediatric neurologist to say that there were no concerns that she could see. On the other end of the spectrum was the thought that she might find something, even give a diagnosis that we would be able to work with--move forward with--know how we could best help our little sweetie with. Instead, we left with all the same questions we entered her office with. She acknowledged that something was wrong--was it central nervous system or peripheral nervous system--no answers. She acknowledged that from our accounts there had been great progress in the past month--crawling on hands and knees, pulling up to standing, pushing up to sitting...but said that one month wasn't enough and we needed to see this kind of progress for at least two or three months. She suggested having a MRI as well as blood tests to check how the muscles are working, but gave the suggestions with such a lack of confidence that we don't know if she was just suggesting something to say something or if she thinks that they could actually be beneficial. We want to do all that we can for our little guy, but the thought of sedating him for a test that she acknowledged might not be useful isn't very encouraging. I will choose to be grateful that she didn't have a clear diagnosis--I guess I just have to remind myself of that periodically.

Our next step is meeting with a group of pediatric physical therapists this friday for a three hour evaluation/assessment. I'm hoping we'll have more direction after that. At times I just feel like crying. I don't like being in a position of not knowing what we can do. I need to focus on the HUGE progress that has been made this past month. I am grateful for the beautiful smiles and good fine-motor skills that our little guy has. I am grateful for his excitement at playing with his older brothers and other examples of social skills. I love his first morning smile as we go into his bedroom--he is so excited to see us. I love his happy conversations throughout the day (it will be nice to understand them someday! :). I've been saying for awhile that I felt a calm optimism about all of this, even though I recognized that might not mean all would be perfect. No one wants to hear that there is anything wrong with their child--there are enough challenges they will face in this life without these additional things, but I do believe that our Heavenly Father is truly aware of each of us and He knows those challenges as well as those blessings that will help us become the son or daughter that He sees we can be. I know He loves our children even more than what my mother's heart feels, and that amazes me, so I can be calm as we continue to try and figure things out. I'm not good at waiting, so this will give me the opportunity to get better at applying patience and I'm sure there will be many other blessings that will come from this current challenge. The thing I like about challenges is that they can be overcome--regardless of the outcome. This is a challenge that will provide growth for us all. Oh the gratitude of facing challenges together as a family with the knowledge that we have a loving Heavenly Father and a Savior that knows how to soothe, comfort and direct. I guess it is literally one step at a time.