Over the course of the past year I have had several people state that they still follow Jacob's blog but noticed I have not posted anything. This is something that has been on my mind for awhile, but to be honest, the days fly by with not much down time in between. It has been almost two years since my last post on Jacob and needless to say a lot has happened in all of our lives. To be honest, I don't even know where to begin so maybe I will just do the highlights of this past year. To start with, almost one year ago to the day we moved in to our new house. The building process was actually a lot of fun but also very demanding. You never realize how much time, energy, organization and decisions need to be made almost daily throughout the whole process. In the end though I think it is safe to say we are happy to have a home that is accessible for Jacob. To know that there are no obstacles in Jacob's way to access his bedroom, bathroom, living area and outside is a great feeling as his parents.
Now on to the happenings with Jacob. In the beginning of the year the decision was made for Jacob to receive a g-tube. For the several months prior to this, he began to loose the ability to feed from a bottle on his own. He was loosing weight and aspirating more fluids. There was a lot of discussions surrounding this decision with Jacob's medical team, but in the end, he had his tube surgically placed in February. Jacob definitely has benefited from this decision. He has thrived in size and he has almost doubled his weight in the past 8 months. He does seem to be happier and healthier since this switch and does not seem to aspirate as much as he did in the past. This also has been a lot more convenient for Shawn and I to feed Jake and administer his medication throughout the day. Since the time he was born we would literally spend anywhere from 2-3 hours holding Jacob while attempting to bottle feed him. It started to become an unpleasant experience for all parties involved and we knew it was time for the change. Although it adds another element of planning and consideration when leaving the house with Jacob, it definitely proved to be the right choice for his quality of life.
In May, Jacob turned three and entered in to his preschool years. He has been placed on an IEP due to his disabilities and started to receive in-home therapy services multiple times a week through our school district. Over the summer on a weekly basis Jacob would receive visits from the physical therapist, occupational therapist and speech therapist. They have been using "switch toys" to work with him on communicating his wants and needs since he is non-verbal. A "switch toy" is a typical toy attached to a big button that can be pressed. When the button is pressed then the toy activates. The therapists have also been using an ipad to assist in Jacob's communication needs. At this point he is not responding completely to these devices since he does not have much control over his hand/arm movements. The therapists mentioned at some point down the line over the next couple of years they would like to try eye gaze technology with Jacob. This would allow him to communicate his needs by the gaze of his eyes. We feel this would be more appropriate for him because he definitely has better ability to "talk through his eyes".
In September Jacob started his first day at his preschool. He is at a school that is specially designed for children ages Pre-K through grade 12 with developmental disabilities. He has been attending 2 days a week and has seemed to enjoy this experience. As with anything, Jacob did have an adjustment period where he was not relatively comfortable or thrilled with the transportation to and from the school. Over the past couple of months he has managed to overcome this and is now an old pro at it. We had our first conference last month for him and the teacher noted that Jake is a delight in the class and enjoys vocalizing with his peers at story time. The other students are really beginning to warm up to him and the staff loves him there. It is still unreal to think that Jake is old enough to already be in school, but he is doing amazing!
One last major development is actually happening today as I sit here and type this entry. Over the past year the doctors have been keeping their eye on Jacob's hips. It is common for individuals with cerebral palsy to have hip displacement. At Jacob's orthopedic appointment last month it was noted that he has reached the point where he is at a high risk of this happening. It was decided to do surgery to correct his hip placement and lengthen his abductor muscles. This is a major surgery but one that is needed to keep Jacob out of pain and again, maintain a higher quality of life for him. He will be in a full body cast for the next month which will be another hurdle for us to overcome with him. We are just glad the surgery was able to happen before the winter months hit and while Jacob's health has been in good standing. He has been through so much in his short life but continually proves to be our little warrior.
Overall, Jacob is getting older and bigger, and the reality of having a special needs child is really setting in. I feel like sometimes I just go through my days without attaching too many emotions to the situation as a way to cope and carry on. When I do stop and think about our reality, there are so many things that cross my mind. I often think back to how and why did this all happen? Why does Jacob have to endure this? What would it be like if he was a typical toddler? This is so incredibly different than how I envisioned my future as a family. But then I take myself back to center because sometimes these thoughts are too painful. The typical world I was once used to is no longer the reality with a special needs child. Simple tasks such as going to our child's games, running in to the store to run an errand, meeting up with our friends, going on family vacations, or going on what would seem like a simple family outing now requires a lot of thought behind the obstacles we could face, planning of what necessities we need to bring for Jacob, or having the appropriate child care available if he cannot go. Our parents have been amazing in all of this by giving so much of their time to help our family out. And Shawn has been my rock and sanity through this journey. I try not to complain and sulk too much because in the end it will not change anything. It is just that as Jacob gets bigger and the reality of what he will never be able to do as a child, along with what we cannot do as a family, has begun to play on my emotions more. What gets me through each day though is to see, among all the obstacles, our three sons being able to play in their own way together and enjoy the life that they know as normal.
