A Different Perspective

I like to think that I have always been a fairly compassionate person, but I believe that having Emmett has made me much more aware of others and slow to judge. When we were first told that Emmett had low muscle tone, I didn't know much about it. I quickly learned that it could affect many things in his life, not only his gross and fine motor skills, but also his eating, drinking, breathing, and speech.

It used to drive me crazy to see a child using a bottle, when they were clearly "old enough" not to. Now I know that low muscle tone can make it difficult to eat and drink and that a bottle may be their only option. I never imagined that I would have to help my 2 1/2 year old hold his cup and thicken his liquids, so he doesn't aspirate, but that is exactly what I do. I also never imagined that I would have to spoon feed him a large percentage of his food because he has difficulty chewing certain foods and doesn't have the fine motor skills to spoon feed himself.
These challenges, and many more, have made me look at things in a whole new perspective. Maybe the 4-year-old with a pacifier isn't coddled, but has sensory issues and it helps keep her calm. Maybe the 7-year-old in a stroller isn't lazy, but has low muscle tone and tires easily. Maybe the 9-year-old who is crying and screaming isn't unruly, but is autistic and is unable to verbalize what is bothering him. Maybe the student who is fidgeting and slouching in her chair isn't hyperactive, but has a weak core and just needs someone to put a stool under her feet. Maybe the toddler that doesn't respond isn't ignoring you, but has a slow processing time and needs time to absorb what is being said. Maybe the baby that wakes up several times a night isn't spoiled, but has sleep apnea and is just trying to breathe. Things are not always what they seem. There are many disabilities that aren't visible and many situations that can be misunderstood.
I'm not saying that there aren't spoiled children or that every child that misbehaves has a disability or a medical condition. I just want everyone, including myself, to be more compassionate and slow to judge.
I found a quote, several years ago, that I absolutely love:
"While we try to teach our children all about life, our children teach us what life is all about."
                                                                                                        -Angela Schwindt

Even without being able to talk, Emmett has taught me so much and I can't wait to see what else he will teach me, in the years to come.

Making Progress

It was nice getting back into our regular routine, after the holidays. We are so used to seeing therapists every week, so it was a little strange to just be home with no appointments. Emmett still had some therapies, but only a few. Corbin is so used it, he almost always asks, "who are we going to see today?" I am so glad that they both embrace our busy schedule and don't mind new situations.
Emmett had a follow-up appointment with his Physical Medicine and Rehabilitation doctor this week. We had only met with her once before in September. She is an awesome doctor. Last month, she called us on a Friday night at 6:30 pm with his MRI results, just so we wouldn't be worrying about it over the weekend. (The results were normal, in case you were wondering) She was very pleased with Emmett's progress over such a short period of time. He wasn't pulling to stand on his own, cruising, or crawling when she saw him last. She was very optimistic and is anxious to see what he is doing when we go back in April. I told her about some of the holistic therapies we use and she agreed that they are definitely beneficial.
We have been so blessed to have such a great team of doctors and therapists for Emmett. I hear horror stories of doctors telling parents that their child will never walk or never talk and I am thankful that we haven't had to deal with that kind of negativity. It is okay to be realistic, but only God knows what a child will or will not do. It is our job to help them and to love them, no matter what.

Some of you may have seen this already, but I wanted to share the testimonial I wrote about Emmett:


Emmett - 2 1/2 year old diagnosed with hypotonia and global developmental delay

(caused by Xia-Gibbs Syndrome)
     "Our son, Emmett, was diagnosed with hypotonia at 8 months of age and started traditional therapy shortly thereafter.  One year later, he had made some progress, but was still delayed in all areas.  At that time, Emmett could sit up with assistance and roll.  He could bear weight in his legs, but wouldn't stay on his tummy or attempt to crawl.  He had very inconsistent eye contact and limited fine motor skills.  He also tended to hyperextend his legs and used his right side more than his left.  We had heard about the Anat Baniel Method from an online support group and decided to do a block of lessons when Emmett was 22 months old.
     We could see progress almost immediately and others noticed the changes in Emmett, even those who had no idea we had tried ABM.  He had better eye contact, a longer attention span, and was more observant.  His body movements were also more organized and more deliberate.
     We continued to see similar results after each block of lessons.  We have had 5 blocks of lessons in the past 8 months.  In this time, Emmett has learned to transition to all positions on his own, crawl, pull up to stand, and cruise.  He is bending his arms and legs much more and he is using both sides of his body more effectively.  His eye contact and interactions with others is better.  His feeding and fine motor skills have improved.  He has better balance and has faster reflexes. 
     Since we started ABM with Jon, Emmett is more in tune with himself and with the world around him.  We believe that Jon has helped Emmett "put the pieces together" and reach his full potential.  We are so thankful that we found ABM and look forward to seeing what the future holds.  ~ Arika

http://yourmovementmatters.com/testimonials.html?m

We Have an Answer, but a Million More Questions

Life with two little boys can be very interesting and exciting, to say the least. When Emmett entered our lives, we had no idea how interesting and exciting our lives would become. Most of you reading this probably know that he has had several procedures and tests in his short 2 1/2 years of life. I will spare you some of the details at this point, but I decided that starting a blog would be a good way to share with others what is going on in our little man's life.
I knew early on that something was "off" with Emmett. I wasn't sure what it was, but this mommy knew that he was different. At around 8 months old, Emmett was diagnosed with hypotonia (low muscle tone), especially in his core. He is also developmentally delayed and nonverbal. He recently learned how to crawl, pull to stand, and cruise around furniture. He cannot walk unassisted, but doctors expect him to, in his own time. He currently receives physical therapy, occupational therapy, developmental therapy, speech therapy, and Hippotherapy (therapeutic horseback riding) weekly. We also take him to a few holistic therapies periodically. This may seem like a lot for one little boy, but he actually loves it and has improved greatly since he started. Corbin also enjoys it because he gets to play with different toys and he knows all of the therapists by name.
Late in 2013, Emmett had made good progress, but was still delayed in all areas. I asked Emmett's doctor to refer us to a specialist, to see if we were missing something. One year later, after vision and hearing tests, an MRI, and 3 very detailed genetic tests, we finally got an answer. The first two genetic tests came back normal, but the third one showed a VERY rare gene mutation. It is currently called Xia-Gibbs Syndrome and very little is known about it. In fact, there are only 4 other known cases in the world.  However, it is possible that there are other undiagnosed cases. We do know that the other children affected have similar traits and medical history, as well as developmental delays, hypotonia, and speech delays, but there are still many unknowns. We were told that this particular test could take up to 6 months to get the results, but we had the results in just 8 weeks. The news was surprising and a bit upsetting, at first, but it is good to have an answer and to know that we didn't do anything to cause it.
So what's the next step? Keep doing what we are doing. Emmett's diagnosis doesn't change anything about our course of action. It just gives us one more diagnosis code for his paperwork and another network of parents to compare notes with.  Emmett may not be able to do everything that a typical 2 1/2 year does, but he is our son and we love him. He may not be able to say "I love you" back, but I feel it every time he gives me a hug. We don't know if Emmett will "catch up" or if he will always be a little behind, but we do know that God gave him and his brother to us for a reason and we are going to do our best to give them the best life possible.
As we start a new year, we are thankful that we have an answer and we will continue to embrace Emmett for who he is, no matter what the future holds. May God bless you in 2015.