Overcoming Fear

 No one can really prepare you for motherhood. It is impossible for anyone to describe what it feels like to have your heart outside of your body. That's what makes it impossible not to worry about your child and fearful of things that could or would happen in their life. When I was pregnant I remember driving to work one day and seeing teenage boys speed down the street and I thought to myself am I ready to deal with this... or even thinking about how his first day of school would go...or just hoping he would have a good life.  It never occurred to me that my fears would be so different. That I would be in fear that he would get really sick, have breathing issues, allergic reactions to basic foods, and so on. I've spent the better half of August trying to stop Jude from getting really sick. Breathing treatments, liquid steroid, humidifiers, Vicks, and you name it... I've tried everything but he still coughs. He is better but those nights he wakes up coughing uncontrollably and cries... I feel helpless. During this "cold", he finally got to try solids. I spent hours buying and making organic food that was the most non allergenic and easily digestible. Even with all my precautions, he still broke out in a rash all over his body. It's times like those that fear starts to overtake me. I start to question what I could do different so he won't be sick or if I should feed him any new food and risk a more severe reaction. But I have to take a deep breath and remember the gift God has given me... Jude.  The happiest, most content, easy going baby boy in the world who always pushes fear aside to overcome every challenge.

Keep your head up!

August has been Amazingggggggg! About a week ago, Jude started holding his head up! We have worked so hard for eight months and he did it! I have to say it is the best feeling to see him achieve his goal. The past few months have been difficult but this proves Jude doesn't let anything get in his way. I am one proud momma!

Unexpected news

       

        This past week was like any other week with Jude. A few doctor visits and smiles. The appointments were follow ups and we created plans to keep Jude healthy. Wednesday night, I grabbed the mail and headed inside. The first piece of mail I opened up was from the Cleveland Clinic. Inside the envelope was a summary from Jude's genetics appointment. As I started reviewing the summary, I found some shocking news. When Jude had his chromosome array done in April they found he had three chromosome gains/losses. We were told that one was 15q24 microdeletion and the other two did not have any known disease causing gene. As I am reading the summary from our visit,
 it states that Jude has 15q24 microdeletion syndrome, a gain of 15q26.3 which does not have any
known disease causing genes, and a gain of 3p26.3. The gain from 3p26.3 comes the CNTN4 gene. A gain or loss of the CNTN4 gene is found in people with autism spectrum disorder. I was upset. It seems like unpleasant and shocking news about my sweet Jude keeps popping up.  All I could think was one more thing for Jude to face...but like everyone who has read my blog knows...Jude will do a fabulous job of keeping a smile on his face and being the best he can be!

Jude's July

      July has been a busy month. The week after Jude's testing he got his helmet, had his 6 month vaccinations which caused him to have a fever of 102.1, and we found out his left airways were swollen because he had a bacteria infection. He started on an antibiotic to clear up the infection and  breathing treatments to help his airways. Needless to say, between the breathing treatment, medications, helmet cleaning, and the mandatory daily bath because of his helmet...bedtime has become quite the process! Jude has more follow up appointments to further discuss what we do since he is obviously prone to getting sick. Let's just say, this fall and winter ... during flu season ... Jude will be living in a bubble! :)
      On a lighter note, tomorrow Jude will be seven months. That is absolutely amazing to me. At one point in my life, that would of been an eternity and now it seems like a quick snapshot in time. The other day, I sat and looked at pictures of Jude from the moment he was born until now. He has changed and grown so much. His therapist and I have seen a lot of improvement, especially once he started feeling better. He is using his forearms to hold himself up during tummy time, reaching for toys, and even sitting in the stroller seat instead of the car seat! He has become so animated and funny. He laughs hysterically when I jump or make faces...sometimes I catch him laughing so hard and I don't know why and I end up shaking with laughter on the floor. Every time I look at him he flashes an adorable smile that makes every part of me melt. He is so full of love and life and I am so proud of him!

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!