The Update Finish

Beginning at Home,

Welcome back for a bit more of this amazing journey called our life. I have so many issues that being a parent to a special needs child brings with it, that are large parts of this story. However I feel like if I just start on these topics, a large part of our story will be missing. So here we go with the rest of the story that bring us to where we are now.

Coming home was the best thing in the world for our family. We were filled with relief and scared to be so far away from out team of doctors. Coming home brought new feelings of fear to Roy and me. I truly think the hardest part about having a child with Hydro is that fact that at anytime they could need a Shunt revision. Some kids go there whole life and never need another, others have many surgeries and will continue to need them. Home life was filled with twice a week follow-ups with our PCP, just to make sure Jaden was on track. One day about a week after we had been home, I came home from work and noticed Jaden’s Shunt looked swollen on the outside of his head. I knew this was Spinal Fluid making it swell on the outside and feared the Shunt was not working to let the fluid drain. Of course my first call was to your PCP to seek advice on how to hand it. We took Jaden in and Roy and I decided to take Jaden to The Children’s Hospital again for a checkup with our Neurosurgeon. We drove straight through the night, mind you over snow covered passes at 12,000 foot above sea level.  I had to know the answers to what was happening with Jaden. While I trust our PCP, I feel like I can never let my guard down with Hydro, people who do, sometimes have tragic prices to pay. So I was relieved to hear from the surgeon that, while yes it was not the picture of perfectness he had hoped, he felt ok with starting Jaden on an antibiotic and letting us come home.

Ah home again, what a trip. Exhausting, yet oddly calming. Once home and some peace of mind that healing takes time; we started physical therapy for Jaden. We are so blessed to have a service that provides us with weekly visits with both PT and OT for Jaden. Now that Jaden had undergone surgery, it was time to get him moving again. I feel so sheepishly, not even seeing the longevity of things with Jaden. Even just the slightest movement from his arm gives me hope his brain can make the connections it needs to build a new path.

We went back to Denver in mid-November for a checkup with Neurosurgery and an MRI.  At this time is when we began to learn more about the stroke Jaden suffered at birth. We learned babies who have strokes do so in the 72 hours before or after delivery. There are no warning signs and we were under every impression we had left the hospital in April with a healthy child. We stared seeing a pediatric neurologist, who is an infant stroke researcher. She informed us that by the condition of Jaden’s brain and MRI, he had suffered a mild stroke at birth. This was a comfort to us because it really drove home that there was nothing we could have done differently to prevent his stroke. Like any parent I felt responsible for what had happened to Jaden. Hearing her say there was nothing I could have done was truly a weight lifted off my shoulders, took some of the “what if’s” out of the satiation as parents for us both. So with a good checkup under his belt, we headed home with a future care plan in hand; we overjoyed to be taking our family back home. I think at this point we had forgotten what it was like not to be caught-up in this medical reality.  

It was nice to see Jaden do better during the month of December 2010. For the first time in months I felt like we were able to relax and enjoy our family, while still filled with doctors and visits and the complications of coordinating care- peaceful as a family again.  Working hard on researching therapy for him, working on such little things as the way we hold and feed him because it helps work on therapy. I find it hard not to think about how his movements are related to his therapy. Therapy is hard work, which is made even harder as Jaden gets bigger and can protest to different techniques. We have found we have to become really inventive to keep him involved and make it fun while helping him regain use of his right side. As of January, we have found out Jaden has some loss of vision in his right eye. We are seeing an eye therapist to aid him in learning how to make his vision better. Finding out Jaden has some vision impairment been very hard and upsetting to me. However, being positive and knowing he will get better will pay off.

So now that you are up to date on the Jaden adventure, I have a whole list of branch off topics to share with you. Everything from people who have touched our lives during this time to the reality people like us face every day, finical challenges.

Feel free to comment and I look forward to writing again soon.

Love and Health,

Jaden’s Mommy

Jaden @ 8 months!

Jaden's Story #1

Greeting’s all,

As promised, I return feeling venerable about sharing a story that is very much real and filled with emotion. I believe in being real and really positive, that’s all this situation can hold, positive.

In April 2010, we welcomed Jaden to our family. He was much awaited by many people; his entrance was grand and will not soon be forgotten. At birth, 6 lbs. 6 oz. and healthy as could be, I look back at such a perfect time for our family and wonder why I was unable to see the signs sooner. We took Jaden home to a very proud big brother Micah; then came the time for learning about our new family. Jaden progressed well, like any other newborn child. In my mind I had a sneaking suspicion when we said to our pediatrician, “Jaden only wants to turn his head this way”.  Her solution being to use a roll under one side of his neck and it should be corrected.  During his well child checks, it became apparent that Jaden’s head was growing at alarming rates.

 I believe there is a history I should touch on right now. When Micah was born in 2006, he had to be seen in Denver at The Children’s Hospital for a skull condition known as, Craniosynostosis. Micah was seen by Neurosurgeons there and was able to leave Denver with a clean bill of health.  Another interesting twist to this is at the time of Micah’s check up in Denver my half-sister (who at the time I had never known) was in the clinic the same day, for a checkup with her son who had to have surgery for his Craniosynostosis, at 3 months old.  We didn’t meet until about two months afterwards.  So now that you have just read a story, within a story we will get back to Jaden’s story.

We had been keeping an eye on Jaden’s head size given our family history. At Jaden’s 4 month well child check, we decided Jaden should have an ultrasound of his brain to get a better idea of why his head was getting bigger. This is when I first heard the word, Hydrocephalus. I will never forget telling our pediatrician, I am going to go home and look up what this is- she said to me, you’re not going to like what you see.  How right she was. So like I said I would, I got online and typed it in and started reading. I was shocked and to think I didn’t even know he had a stroke at this point. I knew in the pit of my stomach, right then- I knew we were facing something big. Well one test leads to another when trying to find a medical answer.  Too look back now and to think our whole family kept on telling us, oh it will be just fine, just like what happened with Micah. We had a miss-guided preconception that Jaden’s condition would be cleared and life would be on to the next task at hand.

The MRI we saw on the 15^th of September, was truly a life changing moment. I was indescribably numbed by what I was seeing; really seeing how much damage there is in his brain. Having to stay strong, having to call Roy and tell him how bad things looked, was one of the hardest phone call’s I have made.  So from here we were sent shell shocked, off on an 8 hour trip home. With a plan in hand that Jaden would be checked for blood clotting disorders 9which the results were negative for), before being cleared to have a shunt placed in his brain to drain off spinal fluid. Jaden is a unique case of Hydrocephalus because normal Hydro is on the inside of the brain on the ventricles. Jaden’s fluid is on the outside of his brain, pushing in on his brain and out on his skull. The side of his brain that is the most damaged from the stroke is the left, which is why the right side of his body is affected.

Jaden’s shunt placement happened on October 13^th, 2010. I will never forget the feelings we had that day. Thank god for Roy and his strength- our strength in our relationship, as a family. There is no way to prepare a mother and father to let go of their child and watch nursing staff carry your child off to the operating room for brain surgery.  I feel very grateful that we have such a wonderful and knowledgeable Neurosurgeon performing the surgery. Jaden was in the operating room for about 2 ½ hours. When we finally saw Dr. Hankinson’s face, with a broad smile coming out the doors- this sheer relief came over us. At the same time, so did another set of feelings.  How was he? How did it go? Can we see him now? The questions are endless. The Dr. informed us that everything had gone as planned.  Jaden was in recovery for about 30 min. before we were able to go see him. Walking up to his crib and seeing his little blue eye’s looking up and me and a faint smile break across his face, made us feel better.  The PACU nursing staff told us that Jaden was one of the best shunt patients they had ever seen. He only had 2 shots of morphine, during his recovery.  He recovered so well, he was moved about 2 hours later to the 6^th floor for recovery and a 3 day stay.

The first night, I was just thankful he was alive and looking so good after what he had just undergone. He did drink some clear juice that night, and took his first bottle at about 3 am on the 14^th. I held him the next morning. I found this to be terrifying.  My child, my baby with a large incision on his head, so fragile and seemingly so breakable, still my child. So I scoped him up and rocked him. The following days consisted of me being with Jaden 24/7- Roy took some breaks to spend time with Micah, he was without doubt feeling the stress of his mommy and daddy.  Jaden took many a ride propped up in the red wagon up and down the halls, good therapy for both of us.

Then came the day we could go home. I was really terrified of this because with people who have a shunt, they can be fine at one time and the next they can be really sick and in need of a shunt revision (2-in 5 kids who have a shunt, will need another surgery within 1 year of the first shunt placement).  So I feel everyday like, he could go from being a happy little baby boy, to being in the operating room again.  So we packed into our car and made the 8 hours journey home again.  

Ok so now that we have made it to this point I do believe I will take a break for right now. My mind is tired and emotions are overwhelming right now. I will be posting a part 2 of this to bring you to speed with Jaden’s story.

Love and Health,

Jaden’s Mommy

Welcome to Jaden's Story

Greeting’s all,

I have been thinking of a way we can help people and also get some mommy therapy writing this story.

I want to get the word out about Infant Stroke and Hydrocephalus, these are words I never thought I would use nearly every day, now I am sure I say them while I sleep.  I have an amazing gift of a child who has changed our lives and has touched so many people. Having a child with special needs and disabilities is challenging, rewarding and one of the most emotion filled experiences I have had.

I would just like to start by providing some links to some sites that have information about Infant Stroke and Hydrocephalus.

I will follow up with the story of Jaden slowly.  I hope we can find a cure for Infant Stroke and Hydrocephalus. I also believe by communicating about these issues we will inspire other people to never give up.

Love and Health,

Jaden’s Mommy

Infant Stroke

http://pediatricstrokenetwork.com

http://chasa.org

Hydrocephalus

http://www.hydroassoc.org

http://www.hydrocephalus.org/facts.htm