Today is a Gift

For the first time in three months, Jude and I spent a week at home together. He is finishing up his antibiotic from getting sick two weeks ago, but no doctor or hospital visits. Just Jude and I. We spent most of our time kissing each other's cheeks, laughing and smiling, slow dancing to our favorite songs, snuggling up while napping together, and talking about the birds while taking walks outside.  It was so refreshing. I was able to really see how much he has improved with his motor skills and most importantly enjoy every minute with him. Next week is filled with doctors appointments and testing, but I am so glad I had this week to just be with my sweet Jude.

Smile :)

        

      Jude started the week with a cold.  In the middle of the night, he woke his dad and I up with crying and gasping for air because he was so congested and coughing.  After many attempts to help him and no improvement, we decided to take him to the emergency room.  At the emergency room, we were reassured it had not developed into anything more.  The rest of Jude's week was filled with coughing, congestion, and being uncomfortable.  No matter how many different cold fighting methods I used, he could not seem to get rid of the symptoms.  Later in the week, we had two visits to the pediatricians office because the doctor wanted to check-up on Jude and make sure the cold did not develop into something more. At the last visit, he was weighed and he lost 4 ounces. Due to his failure to thrive, the doctor decided it was time for Jude to go to a feeding clinic. Later that week, we received a call from the specialist office letting us know that Jude would have an overnight visit to the hospital for a bronchoscopy and MRI on June 28th.   Even though this news was overwhelming, I am hoping the feeding clinic and testing will give us more insight into his upper respiratory(breathing) and feeding issues. 

      Weeks like this are not the easiest but at any moment I reminded of how blessed I am when he smiles.  When we were heading to the emergency room, I sat in the back with tears in my eyes and praying he had not caught pneumonia again. We came to a red-light and the light from above was shining into the car. I could see Jude's face clearly.  His eyes locked with mine and he smiled so big. The anxiety fell from my shoulders and I smiled back. Somehow he always knows just what to do.

        

The Spiral Effect

    Last week, the doctors decided Jude would definitely have a bronchoscopy and MRI. He will have to be put under anesthesia for the procedures and spend the night in the hospital for observation. We were suppose to hear from the doctor's office by Friday, but of course we did not.  I called and they told me to call back Monday.  Sometimes I wonder if they know the amount of anxiety they put on patients/parents when they tell them to wait an entire weekend to know the outcome or results???? The waiting game has been hard to deal with.  It seems some days are wonderful and other days are filled with the anxiety and wonder of Jude's future.

    Last night, my husband and I made plans to meet with our good friends.  They have an autistic son and I knew they would have some great insight...especially after I was feeling frustrated Friday.  After explaining Jude's story, she gave me a great piece of advice. Most things that are hard come to end.  This will not. You will have great days and even great months, but then you will come back down and have really bad days and months. It's like a spiral.  She was right! The testing, hospital stays, doctor visits, and all the other difficult situations that may arise throughout his life will try to pull me down...BUT the progress he makes will be amazing and that SMILE will keep me on the upside of the spiral!