Friday, April 3, 2015

It's a Good Friday For Many Reasons

Today is Good Friday. It's an amazing day of remembrance of our deliverance from sin through Jesus' death on the cross. We now await to celebrate His victory over death on Resurrection Sunday. I am always in awe of these verses:

"But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, and by His stripes we are healed" (Isaiah 53:5)

Because of Him we have redemption and are at peace with God because our sins are forgiven. Praise God!

Good Friday also holds significance to us in regards to Toby. There are certain dates that are etched in my mind. They are memorials to the scars, pain, and victories we have celebrated these past 8 years. There's...

*D-Day or Diagnosis Day (August 31, 2006),
*The day our lives were turned upside down and Toby went into respiratory failure (January 15, 2007)
*The day Toby got his trach (February7, 2007)
*The day we brought a medically fragile baby home with a trach, ventilator, gj-tube, and private duty nursing (March 19, 2007)
*The day of Toby's ETV surgery (March 17, 2012)
*The day of his awful seizure (March 24, 2012)

And then, there's April 5th, 2012 - It was Good Friday. Three years ago on Good Friday (and yes I know today is April 3rd, but it's close enough!) Toby was released from the rehab unit, after being in-patient for almost two weeks and his awful convulsive seizure that lasted four to six hours. I've never been able to get a clear answer on just how long it was. The neurologist reassures me that after 30 minutes they get concerned about major damage to the hippocampus in the brain, and so four to six hours is quite long enough.

We know. We lived it.

We watched it, and grieved through it wondering if it would ever stop, and if Toby would ever wake up to talk to us again, squeeze us, and tell us he loved us.

He did, and I'm so thankful.

Since then, he's had some major ups and downs. He's had 17 surgeries in the 3 years since. Wow! I truly had no idea until I went back to look at my spreadsheet on that one. 17 - Double Wow!

One thing I have learned through this journey is never to assume your current circumstances will be this way always. Things change, sometimes for worse, but often times for better. We've had some really tough medical stuff to deal with, but we've also seen Toby grow and get stronger.

Here are a few updates since February 2015:

1. Toby's had some issues with circulation in his feet. They turn a very dark purple color, especially his right one. His capillary refill (or blood return) is slow, and so we saw Physical Medicine for that in Myelo Clinic a few weeks ago. They are recommending custom made compression socks to help the blood to flow back up out of his legs instead of down to stay there and pool in his feet.

2. We had a pulmonary appointment March 2nd. Toby is doing well, and for the first time ever we don't have to see him for a year unless there's an issue. He will most likely always need his ventilator and trach, and so he is as stable as he can be with both. During this appointment Toby told Dr. K that he wants to be a doctor when he grows up. Dr. K was a fellow when we first met him, and has followed Toby for the last 8 years. Out of all of our doctors, he's probably the one we've seen the longest that hasn't retired or left NCH. He told Toby he wanted to be the first to write his letter of recommendation when he applies to medical school. I teared up!

3. Toby can sit up on the floor by himself with his arms up for 60 seconds. Now, I know that sounds ridiculous to celebrate, but Toby is essentially paralyzed from the waist down. He has some feeling in places, but you just try to sit on a bottom that's numb. We saw his Physical Therapist for the first time in 6 months, and her last goal was for him to be able to hold his arms in the air for 20 seconds. He blew her away with 60 seconds, and did it twice, which leads me to number four...

4. Toby's upper body strength is really amazing. He is often trying to get up on his hands and knees. He scoots around the floor while sitting up by just using his arms, even though his lower body is dead weight. Sometimes, his pants fall down from scooting around so much and we all laugh! Poor kid!

His newest trick is that he can get from his chair to the floor mostly by himself. In fact today he did it without an adult around and fell into Caris' bunk-bed ladder and bumped his nose. It's fine, and he's fine, but we told him to make sure he has a "spotter" around. 

5. We went back for yet another Myelo Clinic appointment to discuss the Botox injections and whether or not they were effective. They have helped loosen his muscles some, so the doctor wants to repeat them about every 3 months. We also have stretches we are doing twice a day. PT also recommended dynamic knee splints to wear on one leg per night and then alternate. These are adjustable by an angle at the knee, so we can continue to stretch his legs out, so they aren't so drawn up underneath him.

6. Bowel program/Bladder Stuff - most of this is going really well. Toby is in underwear consistently during the day. We are still dealing with a few nighttime accidents, and so the colorectal team recommended adding a water soluble fiber like pectin to his diet. We are going to try an apple pectin because I wasn't keen on the chemicals in citrucel and Sure-Jell (yes, they wanted us to use Sure-Jell). The hope is that it will allow for less leakage if his stool has some slight bulk to it. Sorry about the "poop" talk, but that's the story of my life. I await the day my life doesn't revolve around pee/poop talk, but alas, it is my fate.

7. Medications are decreased/g-tube might come out. Toby is really only on one medication consistently for his appetite. He takes a pro-biotic, Vitamin D, and now we'll add the pectin, but we aren't using his feeding tube hardly at all. Just this week, we asked the night nurses to stop using it at night for fluids. He's drinking around 25-40 oz. consistently during the day, and since he's off any major medications through the tube, alas, we are going for the six month goal of no usage, so hopefully we can get it out this fall.

8. Toby's back is doing better. He does have some very prominent rods, and if he's ever sitting on the floor, you can see them through his shirt. It's crazy! He has had some skin issues, but I consistently use frankincense (an essential oil) on those spots, and they have healed. The NP in Orthopedic surgery made fun of me in clinic about them, but they work, so I don't mind.

9. Wheelchair update. We are currently waiting on approval or denial from secondary insurance on Toby's motorized wheelchair. There were some issues with it and it had to be resubmitted. I'm hoping that he will have it soon before summer especially so he can be active and play outside with the other kids, keep up with them, and be in the grass. Pray with me on this!

10. Neurology discharged us! Since, Toby hasn't had a seizure in almost 3 years we no longer have to see neurology. She told me to call her if we ever needed anything, that we wouldn't have to jump through any hoops, etc. to get answers, but we don't have to follow up with her unless we need to. One less doctor. Can I get a woo hoo? :)

Last, but certainly not least, and this is the main reason for my post tonight is a video of Toby's strength. He's been out of commission from sled hockey this winter from his many surgeries, and then our schedule just didn't allow for him to go. I wasn't even sure they were still holding practice. Well, tonight, he went to the last practice and did amazing. I can't get over how strong he is.

Here is a video of hockey last fall:

Here is a video of hockey practice tonight:

Mind you, he hasn't been to practice since last November, but that doesn't seem to stop him. Although the season is over, he will be anxious to play again in the fall. For now, we move on to Miracle League Baseball.

Thank you for the walk down memory lane, and for allowing me to catch you up on all of the medical updates. It's been awhile. We are so thankful for how far Toby has come from three years ago when he could barely hold his head up after that awful seizure. I'm so thankful that God continues to walk with us through this journey. He is ever faithful.

In no way do I try to compare Jesus' death on the cross and resurrection with what we have gone through, but yet as a result of that - He is with me. As a result of that, I can know Him and have a relationship with Him. As a result of that, He hears my cries and is near to me when my heart is broken. As a result of that, we have the hope of heaven - I know Toby will walk and run. He will play and breathe on his own without equipment, and we will spend eternity praising Him for His grace, goodness, and mercy. It is indeed a Good Friday!


  1. I teared up several times reading this update. Remembering all those big dates with you. Thankful for the perspective on trials God has given you—looking for the positive, thankful, honest and with a sense of humor. Proud of how far Toby has come. Rejoicing with you on these big deals like underware, not using the g-tube and rocking sled hockey with barely any practice! Praising HIM for you and your family today. Thanks for this post. Hallelujah! What a Savior!

  2. Thank you for sharing sis! Celebrating with you. This is awesome to see how God has worked and how far Toby has come!