Alex and Maddy

Alex and Maddy

Sunday, February 22, 2015

Boy Scouts and updates

Yesterday was such an emotional day for this Mommy! Almost 6 years ago we decided to enroll Alex in Cub Scouts so he would have an activity he could do with friends since we knew sports weren't going to be a good option for our boy. We had no idea what it would come to mean to Alex and to Bruce and I.
Over the last five years, we have watched Alex and his den work hard to meet requirements and achieve goals, but more importantly, we have watched them forge friendships that have changed Alex's life.
This sweet group of boys have grown up together.
Cub Scouts is all about teaching character. About being good citizens, helping others. These boys have exemplified that in everything they do. I have seen each one of them help Alex in countless ways. They have hung back with him when he physically couldn't keep up, they have stuck up for him when being made fun of, they have helped him set up tents, they have grabbed me or Bruce when he needed us medically, they have helped him complete projects. Simply put they have loved him.  So it was with pride, but also sadness that we watched these boys leave cub scouts and move on to boy scouts last night. It was the last time that Den 2, our flaming Arrows will be together as a group. And so in typical spirit they blessed my boy one last time. Two years ago when they became Webelos and chose a patrol name of Flaming Arrows, they made a flag. Last night they voted for Alex to keep that flag as the scout who showed the most Scout Spirit. A simple gift with so much meaning. For Alex he felt pride. For me, I felt love, love that has enveloped my sweet boy, by these incredible kids and their remarkable parents.

And so with tears in my eyes, I watched as my baby grew up, as he crossed a 15 foot rope bridge to become a Boy Scout.

I am so excited to see what this new chapter holds and so happy five of these boys have chosen to cross together to the same Troop.

Let's see, what else...
Alex continues to be more stable than he has ever been. He looks good, he feels good. We had one little hiccup where he got a mild case of pancreatitis and rhinovirus which landed him in the hospital for 4 days, but he recovered well.

Maddy is a mess! But boy is she a cute mess! She is such a doll who continues to make us smile. When Maddy is happy she is infectious, but look out when she is mad. She will let you know it! That spunk and determination is serving her well as she continues to struggle to meet gross motor milestones. It is her sheer will that allows her to do anything because nothing comes easy for the poor girl. She is in physical therapy 3 times a week. We are making progress, but it is SLOW. Her brain doesn't seem able to get her legs to do what they are supposed to. The question is why? We are trying to figure that out. She will have a Spine MRI on March 30th to rule out a tethered spinal cord. If that is the case we will do surgery to untether the cord and she should make progress pretty quickly once she has recovered. If it is not a tethered cord we will need to do some more testing looking at nerve problems. In the meantime, we are working on getting her some orthotics (SMO's) to help her feet and ankles. Her little ankles are so weak and loose. She cannot keep her feet flat on the floor when standing. Her feet roll. We are hoping that orthotics will at least help that issue as we work on the rest of our "standing issues". I have had a lot of people ask, so I will address this here... We have been told by multiple medical professionals that there is nothing we could have done any differently to change or prevent this. This is not a case of Maddy being spoiled or held too much. It is in inborn reflex to put your feet down and bear weight when you are held under your arm pits. Maddy WILL NOT let her feet touch the ground in this position. We are working as hard as we can to "teach" her something that should be natural. Every physical milestone has been like this. Trying to teach what she should just "get".  The other big issue we are working on is her GI/weight issues. She has had multiple tests and we know at this point that she does not absorb carbohydrates correctly. She will have an endoscopy and biopsies done on March 4th to determine which enzymes she is missing. Once we figure that out we will have to make significant diet changes and eliminate whatever is causing the problem. Despite all the medical challenges, our little princess continues to charm everyone she meets. She is so very smart and we love watching her learn more every day.

As if life wasn't crazy enough, I am dancing two nights a week. I have loved refinding my passion for dance. it is so good for me to get out and have some time for me each week. As much as I love the dancing, the fellowship is so great. I feel renewed when I leave each week. I am so grateful for the break! I have also taken a part time job! One of my dance partners and good friends is opening a business called Taste Buds Kitchen. I am her "sales manager".  For any of our local friends you need to check it out!

To say we are busy is an understatement! Between Taekwondo, scouts, school, homeschool co-op, doctors appts, therapy, Kindermusik and my work it is pretty crazy! However, we love that everyone is well enough for us to enjoy time with friends doing activities we love.

Thank you for those that continue to support, love and pray for us.

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