Joseph’s Journey

Dear Family and Friends,

Hallelujah, we’re home again! So much has happened since we last wrote…

When it became clear that the ETV did not work for Joseph (at least to remove the need for a shunt), we spoke with our neurosurgeon about the type of shunt that would best help Joseph. We showed him the calendar filled with highlighted days when Joseph suffered from very painful headaches which resolved after he rested for about 2 hours each time. Dr. Iskandar said, with confidence, that the headaches were due to overdrainage and recommended a “Programmable Shunt.” This is a shunt that is set at a certain pressure (Joseph’s is currently set at medium pressure) and can be changed by using a large magnet held up to Joseph’s head. Dr. Iskandar said ALL shunts overdrain–even Programmable Shunts at times overdrain—because they are not the body itself. He also told us that Programmable Shunts are more difficult to put in and more difficult to take out (frustrating news for us, as you can imagine) but he said something needs to change to hopefully lessen the amount of headaches Joseph lives with.

Joseph had shunt surgery Wednesday afternoon at 1:45 PM. The surgery was without complication, praise God! We were amazed how well Joseph did in recovery. He did not have breathing problems and did not become dehydrated as in previous surgeries–both wonderful answers to prayers! Dr. Iskandar was able to use the hole from Joseph’s previous shunt for this new shunt which we were so thankful for. His neck and chest (where the shunt tubing is tunneled underneath the soft tissue) and his abdomen (where there was an incision to pull the tubing down into his abdominal cavity) were the most painful at first, although he quickly told us that they were “just sore, not hurting a lot.” It was so great to see Joseph up watching “Pinocchio” and eating Chicken Fingers and French Fries at 7:00PM that night!!!

After spending Thursday morning in the hospital, and making sure Joseph had some time to play in the Play Room :), we packed up and headed for home! Although his stamina isn’t 100% yet, he is doing really great! He has had 5 headaches in the past 3 days since surgery, and the headaches may not go away, but we are so thankful that we have our little boy back again, and we are so glad we stepped out in faith to try the ETV.

The morning of July 2, when we all prayed together at 4 PM for Joseph, the Lord led me to Psalm 121. The cool part is that at our prayer gathering, a friend told me that God had given her a Scripture for me…Psalm 121. Then the following Sunday at church we sang a song with the words from…Psalm 121. Then tonight before I wrote this e-mail, I read a message from a friend about a sermon their pastor had given on…Psalm 121! It is a very encouraging Psalm which reads, “I lift up my eyes to the hills–where does my help come from? My help comes from the Lord, the Maker of heaven and earth. He will not let your foot slip–He who watches over you will not slumber nor sleep. The Lord watches over you–the Lord is your shade at your right hand; the sun will not harm you by day, nor the moon by night. The Lord will keep you from all harm–He will watch over your life; the Lord will watch over your coming and going both now and forevermore!” Isn’t that great?!?

I have to be honest, it is hard for me that God said no to all of our prayers for complete healing for Joseph. I KNOW He could have so easily let the ETV work completely. But that doesn’t change our faith and trust that God’s will is best! While we don’t know why the Lord has allowed this journey for Joseph and for our family, we do know that His plans are to prosper us and not to harm us. God has awesome plans for Joseph…he has already touched so many people’s lives. Thank you all again and again for your prayers, support, cards, gifts, meals and overall love! We appreciate your continued prayers as we face whatever comes next in this journey…next Thursday you can pray that Joseph is once again very brave as the staples are taken out of his head (that can be pretty traumatic for him).

We love you all, Angela, Chris, Joseph and Baby Grace