Joseph’s Journey

Dear Family & Friends,

Praise be to God for His incredible faithfulness! We are all doing GREAT! As you know Joseph was admitted to U.W. Hospital Thursday afternoon and Friday afternoon he had an MRV scan, ear tube surgery and brain shunt surgery. The scan was normal and the surgeries were without complication! Thank You Lord! Joseph was taken off of the morphine Saturday morning and by the afternoon was becoming more and more like himself. The hospital has a child life program with various activities in which children can participate. On Saturday “Pet Pals” brought two dogs up to the pediatrics floor. Joseph loved petting the golden retriever, Kodee; it was one of the first times Joseph smiled after surgery on Friday. Also, he audibly said, “Doggie!” (Joseph has not said any new syllables or words since he was 9 months old…)

This morning at 4 AM the nurse cam in to check Joseph’s vital signs, and he greeted her by saying, “Hi-ya!” So cool!

Joseph’s balance has improved a lot, although he is still adjusting to the different pressure in his brain so he gets dizzy and teeter-totters once in a while (very normal after shunt surgery).

After a great day yesterday and morning today in the hospital, we came home this afternoon. If feels so good to be home! This Thursday we will revisit Dr. Iskandar, and he will examine Joseph and take the dressing off his head. The greatest risk of infection comes in the first 6 months after receiving a shunt, so we will continue to trust God’s protection over Joseph. The life expectancy of a hunt is 5 years, thus, surgery will be a part of Joseph’s life…but God has all of that planned too.

We can’t thank you enough for your love, support and prayers!!! We have seen the awesome power and experienced the presence of God each step of this faith journey. Originally we weren’t eve scheduled to see Dr. Iskandar until November 3^rd. By November 3^rd, it will be two weeks after his surgery! Only God could have worked all that out in His perfect timing. His ways are higher than our ways, and His thoughts are higher than our thoughts. We may never understand why the Lord chose this path for our son, but we choose to trust Him still. We love you all!

Love,

Chris, Angela and Joseph

Things have progressed in such a way that there is concern with waiting two weeks until Joseph’s originally scheduled surgery. We spoke with Dr. Iskandar today and he wants Joseph admitted this afternoon with brain surgery planned early tomorrow morning. Joseph will get an MRV this afternoon for which he needs to be sedated. Please continue to pray for us, and especially for Joseph, as the next few days will be very tough.

God is in control, and none of this surprises Him! “We know Whom we have believed, and are convinced that He is able to guard what we have entrusted to Him for that day!” (Tim. 1:12)

We love you all,

Chris, Angela and Joseph

Dear Family & Friends,

 Today we drove to Madison to get a second opinion for Joseph at the University of Wisconsin Hospital.  There, Dr. Iskandar, a neurosurgeon who specializes in hydrocephalus, confirmed to us that Joseph indeed has hydrocephalus and needs surgery [a shunt] SOON.  Unlike the first neurosurgeon, Dr. Iskandar did not recommend a spinal tap to determine if surgery is necessary.  He said the outcome of a spinal tap is not reliable data to determine the need for surgery.

Dr. Iskandar’s demeanor and credentials instilled confidence in us, so we have scheduled surgery with him for October 29^th at UW hospital.  The root cause of Joseph’s hydrocephalus is still unknown; however, Dr. Iskandar plans one more test just prior to surgery (as in minutes before…)   If this test is positive, surgery would not be done.  Dr. Iskandar said it is very unlikely that Joseph has “venous thrombosis,” but we need to find out anyway.

As you can imagine, this is all becoming very real to us, and emotions are getting intense!  We know that God has entrusted this faith journey to us…to our family…to you.  Thank you for continuing to support us through your prayers, phone calls, notes and love.  Life is so precious…so is our wonderful little boy!

We love you all and will keep you updated as we progress,

Chris, Angela and Joseph

Dear Family & Friends,

We covet your continued prayers for Joseph!

Last Friday Joseph had an MRI and MRA. Today the results were conveyed to us by the neurosurgeon at Children’s Hospital. Although the arteries and general blood flow in Joseph’s head are terrific, the scans did reveal ‘mild’ hydrocephalus (a condition that left untreated could potentially result in blindness, developmental problems and learning disabilities). According to this neurosurgeon, in cases like Joseph’s, shunt surgery is the recommended treatment. (A shunt is a tube that drains excess spinal fluid from the brain’s ventricles to the abdomen.) Since having a shunt is a life-long commitment and has a high failure rate, we want to be sure this is absolutely necessary. The neurosurgeon recommended Joseph get a spinal tap to measure the pressure on his spinal fluid. The pressure of the fluid in his spine is reflective of the pressure of that same fluid in his brain. If this pressure is higher than normal, the Joseph will need shunt surgery.

We’ve decided to postpone the spinal tap until after we see a second neurosurgeon in Madison. Miraculously, the Madison neurosurgeon (who came highly recommended to us) just ‘opened a new clinic’ which will allow him to see Joseph as soon as next week Monday, Oct. 13^th. Thank You Lord! We’ll have more to report in a week. Meanwhile, Joseph is running around the house unhindered and is a good natured as ever; it’s hard to believe this is all actually happening!

Please pray for us to have wisdom in deciding which surgeon is best for Joseph. We also ask you to pray that Joseph’s sweep spirit and tender heart are not hurt through all that he is facing.

Love, Chris, Angela and Joseph

Thank you for your continued prayers.

Today we met with the neurosurgeon at Children’s Hospital who read the CT scan Joseph had last week and confirmed that he indeed has hydrocephalus (water on the brain). To have more information prior to making any recommendation for next steps, the neurosurgeon ordered an MRI for Joseph. Although booked out for several weeks, the radiology department created a time slot for Joseph; this Friday, October 3^rd, at 7:30 AM. As you can imagine, Angela and I have a hundred questions. Although the typical remedy to relieve hydrocephalus is surgery, the surgeon thought it best to hold off any discussion of surgery before seeing the MRI results.

We’re still praying for a miracle. We pray that Friday’s MRI reveals nothing abnormal. The God of the Bible is a God of miracles. He parted the Red Sea. He can clear up Joseph’s hydrocephalus, if He wills it. Your prayers are key. Thank you for your prayers.

Love,

Chris, Angela and Joseph

“He’s not just anyone, he’s my son…”

These words from a Christian contemporary song make my eyes well up with tears as I write this! Thank you all so much already for all of your prayers and the love you have extended to our family as we are going through this faith journey. The Lord has surrounded us with His grace and peace since we received the news of Wednesday morning about Joseph’s hydrocephalus. It is all becoming very real to me today…in less than 24 hours we’ll know what only God knows right now…

I will write and let you know what the news is. God is not done with this story yet!!! There are so many questions, so may feelings…such an awesome God…

We love you,

Angela (Chris and Joseph too)

Hello to our dear friends,

 We need your prayers.  At Joseph’s 9 and 12 month checkups, his head circumference was measuring above 100%, although our pediatrician said it was probably nothing and we would just remeasure his head at his 15 month check-up.  Well, we took Joseph into the doctor’s office for a sinus infection two weeks ago (he is 13 months old now), and Dr. Mielke remeasured his head just to see. It had grown… She ordered a CT scan at Children’s Hospital informing me that she didn’t really think anything was wrong, but this would make us all feel better.  We had the CT scan 6 days ago.

Wednesday morning I was leaving to go teach aerobics, and the phone rang.  It was Dr. Mielke.  The CT scan was abnormal!  Joseph has water on his brain, a condition called hydrocephalus.  The next step was to see a neurosurgeon!  After she told me this, I felt nauseas.  Chris had left that morning for Chicago and wasn’t going to be home until Friday night.  I called his cell phone as I drove to the YMCA…it all felt so surreal!

Now it’s becoming more and more real.  Tomorrow we will see the Neurosurgeon at Children’s Hospital at 10:30 AM.  Chris and I have a lot of questions…how did he get this?  Is surgery absolutely necessary?  What are the risks?

I’m sorry I haven’t called each of you personally to tell you this news, but last week was a complete blur!  I took Joseph to see an eye doctor (the water on his brain is not causing any retina or optic nerve damage—thank you Jesus!), and we had his blood taken (he does not have leukemia—a possibility with this condition).  So we are really thankful that God has protected Joseph from these problems!

Chris and I have felt the Lord’s peace and grace immensely since we began this faith journey Wednesday morning.  Thank you for your prayers for Joseph and for our family.  We love you all, and I will write tomorrow to let you know what we find out.

Resting in God’s Almighty arms,

Angela (Chris and Joseph too!)

A lot has happened since I last wrote you. As you know, I was very sick with Rota Virus for about 4 days. Last Tuesday (Feb. 21) Joseph began complaining that his tummy was hurting him. Unfortunately he became very sick on Wednesday. We tried to keep him hydated (he had vomited about 5 times) but he didn’t want to drink because his stomach was hurting him. Because he was getting so dehydrated, he also started suffering an extremely painful headache. (A shunt overdrains when someone is dehydrated which causes a terrible “shunt headache.”) By Thursday morning, Joseph was not doing well at all, and after speaking with his pediatrician, we decided to hospitalize him for IV fluids.

One of the most difficult parts of this hospitalization was holding Joseph down while the nurses attempted to start an IV on this very dehydrated little boy. As you can imagine, Joseph is VERY reactive now after all that he has been through. The first IV infiltrated, so the nurse had to do it again…

We ended up staying for two nights at Children’s Hospital, because it took that long for Joseph to start eating and drinking on his own. Needless to say, we all rejoiced BIG TIME when Joseph was released from the hospital and we could all be under one roof again! Thank you Lord!

One of the most infamous questions Chris and I get asked all of the time is, “So is everything okay now?” or “So is Joseph all better now?” Our answer is, “Well, for the time being.” It’s a lot like I imagine the hurricane victims must feel as they return to the land where their home once was. Yes, it’s good to be back, but there’s a lot of “clean up” work that needs to be done, and there is no way to tell when another hurricane will hit.

Joseph has a lot of processing to do, as do Chris and I and our families. This is very different than how we envisioned our life as a family and our dreams for Joseph, but GOD IS FAITHFUL! And we choose to trust Him even when He allows difficult circumstances to come our way. We don’t know why He has allowed this, and it does anger us at times, but both Chris and I want so desperately to point Joseph to Jesus and for all of us to keep our eyes on Him.

We are so thankful to all of you for your prayers, cards, gifts and yummy meals! (J) This journey is very intense to say the least, but God’s grace and your support carry us. Please continue to pray for our family. Pray for Joseph as he processes his feelings of fear, anger, hurt and sadness. He has definitely been acting out a lot since leaving the hospital. Pray for Chris and I as we parent Joseph to have wisdom, discernment, grace and firmness when appropriate. Pray that Grace continues to live up to her name and that she is protected emotionally too as our family lives with a “heightened state of alert.” Lastly, please continue to pray for our wisdom as we make the decisions about Joseph’s upcoming medical procedures. We will keep you posted. We love you all! Angela (Chris, Joseph and Grace too)