I feel inspired this afternoon to write a blog about the many blessings we've received lately as we prepare for Jameson's upcoming 2nd birthday party. Yes, Jameson turned 2 years old back in May but since he was in a bad place medically we decided to postpone the party until he was feeling better. 4 months later and what an amazing change he's had! His new seizure med, Onfi, has been a beacon of hope for us. I say that with a disclaimer as we known Jameson's type of epilepsy is complicated and always trying to find its way around his medications. However, I'm pleased that for the time being we have a happy little boy that is sleeping better and playing with toys independently and on a consistent basis.
Its funny the things that you will become grateful and excited for when you're in a situation like ours. I made the decision this month that I'm ready to start the process of getting Jameson's first wheelchair. May not sound like something you'd be excited for your child to get but for me it will be like Christmas morning when its ready. Jameson is going to be 2 1/2 years old and he doesn't deserve to sit in an infant stroller anymore. He's a big boy that has been through so much in his life and he deserves to sit up and see the world like any other 2 year old would. I can't wait to see him explore the world in his chair...supported and comfortable and at the same eye level as any other child his age.
Speaking of blessings, I cannot express enough my excitement for Jameson's upcoming birthday party. We'll have about 50-60 people coming to celebrate the little man and his awesomeness! The weather is supposed to be beautiful and of course, there will be lots of pictures! Can't wait to post them!! :-)
Thursday, September 17, 2015
Wednesday, August 26, 2015
Making Memories
What a great month for the little man! We have gone full steam ahead with Jameson's bucket list and are making efforts to get out there and make memories and experiences for him. Of course it wouldn't been in true Jameson fashion without a few hiccups along the way….aka a late night ambulance ride last week to the ER….but the bumps in the road sure are a lot easier when you see the amazing things he's doing.
As most of you probably saw on Facebook, little man has gotten his sun goggles and they're working like a charm. I cannot express the feeling of being able to finally take him out into the world after two years of being inside. Even something as simple as sitting out on the back porch or sitting in the grass with little man being able to look up at the clouds is surreal. I was so happy to be able to share his first experience being in a swimming pool at our family reunion with everyone cheering him on. Seeing these memories made for him through other people's eyes is also an amazing gift and makes you incredibly thankful to God.
We continue to work hard towards giving Jameson the best life possible, full of adventure and love. We also continue to work hard at giving him access to the best doctors and treatments available. Today we are heading back to the University of Iowa for a visit with Pulmonology. She will be taking a good look at his lungs and breathing. September we have more big appointments with his Nephrologist and Urologist who watch his kidney and bladder function. Then in October we are back to MN for another inpatient stay while they watch him on vEEG to look at seizures and he'll be having another MRI. We are also still waiting on results back from his Whole Exome Sequencing which will be very exciting when we get those! So another busy few months but that is the life of our tough little man!
As always, we appreciate everyones love and support. We cannot thank you enough for all the kind words and messages. It's because of all of you that we have as much strength as we do to help Jameson fight his battles and have a wonderful life. Thanks again!
As most of you probably saw on Facebook, little man has gotten his sun goggles and they're working like a charm. I cannot express the feeling of being able to finally take him out into the world after two years of being inside. Even something as simple as sitting out on the back porch or sitting in the grass with little man being able to look up at the clouds is surreal. I was so happy to be able to share his first experience being in a swimming pool at our family reunion with everyone cheering him on. Seeing these memories made for him through other people's eyes is also an amazing gift and makes you incredibly thankful to God.
We continue to work hard towards giving Jameson the best life possible, full of adventure and love. We also continue to work hard at giving him access to the best doctors and treatments available. Today we are heading back to the University of Iowa for a visit with Pulmonology. She will be taking a good look at his lungs and breathing. September we have more big appointments with his Nephrologist and Urologist who watch his kidney and bladder function. Then in October we are back to MN for another inpatient stay while they watch him on vEEG to look at seizures and he'll be having another MRI. We are also still waiting on results back from his Whole Exome Sequencing which will be very exciting when we get those! So another busy few months but that is the life of our tough little man!
As always, we appreciate everyones love and support. We cannot thank you enough for all the kind words and messages. It's because of all of you that we have as much strength as we do to help Jameson fight his battles and have a wonderful life. Thanks again!
Friday, July 24, 2015
The Adventure List
I came to a big realization this week. It actually hit me like a ton of bricks. It all started when little man and I had an appointment with one of his therapists and she mentioned cutting back on some of his therapy appointments. My first reaction was one that many mom's would have, absolutely not!! We're trying to fit in as much physical, speech and occupational therapy as we can so that Jameson continues to develop. But her reasoning behind it wasn't what I expected.
After two years of being in survival mode, trying to keep little man in a bubble and safe from the big bad world around us, I'm starting to realize that he isn't fully experiencing life. His therapist has helped open my eyes to what quality of life can look like. These appointments every week, while helpful, will not give him the same therapy of having life experiences out in the world. Laying in the grass and feeling the breeze is a life experience. Visiting an art museum is a life experience. Heck, even sitting with mom in a Starbucks and people watching is a life experience! :)
So after much thought, mom has come to the realization that therapy can come in many forms. I may not have control over when God decides to take my little man, whether it be 5 years or 10 years or 30 years, but I can give him the fullest life packed with adventure and experiences. And that might be the best sort of therapy he could have.
My next goal is to work on a list of adventures for little man, sort of like a bucket list of things we need to accomplish but with no end date. It will be an evolving list of ideas, no matter how big or small, that can be checked off one by one. Please fill me in on any and all ideas you might have an I'll add them to our Adventure List! So far we have......
• Look at art in a museum
• Sit in the planetarium at the science center
• Visit Build a Bear workshop and make a friend
• Sit on Santa's lap
• Go to an ocean and put my feet in the sand
• Swing on a playset
• Take a ride on a boat
• Meet Elmo
• Go sledding
• Lay in the grass
• Watch a live band
• Visit an aquarium and pet a dolphin
• Make art with my hands
• Go to Disney World!
After two years of being in survival mode, trying to keep little man in a bubble and safe from the big bad world around us, I'm starting to realize that he isn't fully experiencing life. His therapist has helped open my eyes to what quality of life can look like. These appointments every week, while helpful, will not give him the same therapy of having life experiences out in the world. Laying in the grass and feeling the breeze is a life experience. Visiting an art museum is a life experience. Heck, even sitting with mom in a Starbucks and people watching is a life experience! :)
So after much thought, mom has come to the realization that therapy can come in many forms. I may not have control over when God decides to take my little man, whether it be 5 years or 10 years or 30 years, but I can give him the fullest life packed with adventure and experiences. And that might be the best sort of therapy he could have.
My next goal is to work on a list of adventures for little man, sort of like a bucket list of things we need to accomplish but with no end date. It will be an evolving list of ideas, no matter how big or small, that can be checked off one by one. Please fill me in on any and all ideas you might have an I'll add them to our Adventure List! So far we have......
• Look at art in a museum
• Sit in the planetarium at the science center
• Visit Build a Bear workshop and make a friend
• Sit on Santa's lap
• Go to an ocean and put my feet in the sand
• Swing on a playset
• Take a ride on a boat
• Meet Elmo
• Go sledding
• Lay in the grass
• Watch a live band
• Visit an aquarium and pet a dolphin
• Make art with my hands
• Go to Disney World!
Subscribe to:
Posts (Atom)