Welcome Home Hunter!!!

Dear Hunter,

I can't tell you how happy I am to have you home with me. It feels like it has already been such a long journey. But, our journey has only began. Your drive and determination never ceases to amaze me. Since the day you were born, you approach everything with a "watch and see what I can do" attitude. So, my sweet child here are my promises to you:

1. I'm going to promise you that this will be a long road. We have therapy 4-5 times per week for one year. Therapy sessions last a couple hours per day. But, I promise that we won't miss one session.

2. I promise you that I will wipe your tears when times get tough. But, I am going to push you and will never enable you. I do this because I know you can do it.

3. I promise to always stand beside you, support you, and fight the battles with you.

4. I promise to always cheer you on.

5. I promise to always have faith in you.

6. Most importantly, I promise to always love you!

Okay, so the big question that everyone wants to know...How is Hunter doing? He is doing great!  However, he has a lot of swelling on his back. They were contemplating another surgery to fix the swelling. But, at the last minute, they decided to discharge him and not go through with the surgery. They decided that it is more dangerous to do the surgery to repair the swelling. Now, the next question...what's causing the swelling? It could be a spinal fluid leak. It could be fluid leaking from the tissues in his back.  But, the swelling is not slowing him down, hurting him, nor is it getting worse. The neurosurgery team believes that the swelling will re-absorb into the body with time. They will follow Hunter closely for awhile.  If the swelling gets worse or slows down his rehabilitation, surgery is still an option.

Hunter has been working hard in therapy. I have talked to the therapist. I asked her to rate the severity of Hunter's cerebral palsy before and after surgery. They use a scale of 0-5. A score of 0 would be someone with normal muscle tone. A 0 score would be someone who did not have cerebral palsy. A score of 5 would be the most severe case of spastic diplegia (cerebral palsy). She said that before the surgery, Hunter was rated at a 3. After the surgery, Hunter has been rated as a 0-1. I can't tell you how excited this makes me.

As I've mentioned before, they have to train Hunter how to do everything again. In this video, Hunter stands for the first time following surgery.

Hunter's New Wheels

They warned us that this surgery would set Hunter back, but it will be the only way he can progress in the future. Hunter is attending inpatient physical and occupational therapy a couple times a day now. I am posting a video of Hunter working with his therapists. They explain the plan for now.

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I picked Hunter up for the first time since the surgery. I can't explain how good it felt to have him in my arms again. I cried happy tears. I don't want to move him around a lot. I can only imagine how sore his back must feel. He is being such a trooper and I'm seeing improvements with him every day.

As I said before, our ultimate goal, is to see Hunter walk without assistance. This won't be for awhile. He is not allowed to use his walker. They don't want him to develop the habits he had before. Instead, they want to re-train his mind to move without tone. After surgery, these movements don't come easy. Hunter has a long road ahead of him and they have to build his strength from the head down.

These setbacks can be frustrating. He doesn't understand why he can't just get out of bed and stand up. He can't understand why we won't let him position himself in old positions. I can't imagine moving a certain way my entire life. Then, all of a sudden, someone stopping my every movement and telling me that I'm doing it wrong and teaching me a new way of moving. This surgery has thrust my child back to the start, back to the days of infancy, when he couldn't sit up, stand up, or walk. Hunter wants to crawl on the floor. But, he doesn't know yet that he can't. It's hard to keep him contained. My child has always wanted to just go. But, I do my best to keep him occupied.

A present arrived for Hunter today. He was so excited. It's his new wheels. He won't need this forever. It is only temporary while they build up his core strength first and get him walking in the future. But, he was so excited. He sat in it and learned quickly how to maneuver around. He was tearing up the 12th floor of Mott's, just like I warned the nurses about.

I decorated Hunter's room with his artwork from school. One of the workers came to us and offered us an opportunity we couldn't refuse. Mott's wanted one of his artwork to hang up in the hallway. Later, it will go to a senior center to cheer up an elderly person in a nursing home. Hunter donated one of his pictures. Below is a picture with Hunter in his new wheels. He is sitting underneath his artwork framed in the hallway of the hospital.

I have been getting many messages wandering how I'm holding up. I'm holding up okay. I'm extremely tired and haven't sleep well. It's so hard to leave the hospital at night. My home is with Hunter and leaving him behind breaks my heart. It's an empty feeling that only a mother could understand. I fell asleep behind the wheel one night and hit a curb. It made me realize that I should go home earlier and get my rest. So, I've been doing that. But, I'm back up at the hospital usually before 7am and stay until after Hunter falls asleep at night. Dad stays with him all night and that makes it easier for me to leave, but it is still very hard.
                           

Up and Moving - Day Three - Post Dorsal Rhizotomy

The day started early. The neurosurgeon came in to check on Hunter and the fluid is still in his back. It concerns the doctor. But, it's not enough of a concern to do surgery yet. The plan was to get Hunter sitting up and moving more. Hunter has been on his back since Friday. The neurosurgeon still hopes that the fluid will re-absorb and is watching it closely. He wants Hunter to start physical and occupational therapy today. He also granted us access to hold him. It didn't take long for Hunter to be in our arms. When breakfast came, the smell of food motivated Hunter.. He sat up on his own and fed himself.

Hunter with Dad. There's nothing that motivated this kid like food!

It wasn’t long after breakfast that Hunter got his first visitor. She was Hunter's occupational therapist. This was an exciting time. She sat Hunter crisscross applesauce style. Hunter could never sit in this position because of the spasticity in his legs. He would cry out and fight it before. However, this time was different. The tone was gone. Hunter successfully sat crisscross applesauce comfortably. The occupational therapist was also impressed that Hunter could sit up without much support. This is rare for the first day of therapy after this surgery. It really shows how resilient Hunter is.

Physical therapy came in the afternoon. They took measurements on Hunter's range of motion. They will compare this to measurements later in therapy.  Hunter is very guarded of his incision. He is scared of the pain. Therefore, he didn't cooperate with the physical therapist. She says the pain gets better quickly and this is typical of first day therapy.

It is truly the small things you learn to appreciate when you have a special needs child. Seeing Hunter sit crisscross applesauce is the highlight of our day. It’s our first indication that the surgery was successful. This gives us hope, an overwhelming feeling of anticipation that our child might be able to do things that children without disabilities can do. It leaves us excited for Hunter’s future.

Hunter is still very sore. He still cries out when we try to move him or change his diaper. But, his incision is healing nicely.

CrissCross Applesauce. Look at how relaxed those legs are!

Day Two - Dorsal Rhizotomy Post Operation

Hunter's neurosurgeon met with us this morning to discuss Hunter's next steps. Hunter's back is still swollen and full of fluid. They aren't sure if it's spinal fluid or bleeding of some kind. The only way to know is to put Hunter back in surgery and explore. His neurosurgeon isn't in any hurry to do this. So, the plans are to keep Hunter as calm and mellow today as possible. He hopes that with rest, the fluid will re-absorb into the body, and surgery will not be needed. 

The Incision

The fluid in his back is a setback. In a normal Dorsal Rhizotomy, Hunter would be sitting up today. They would try to get him moving as soon as possible. However, since he is having this complication, the doctor ordered him to lie flat for another day. Hunter was supposed to start physical therapy tomorrow. But, this has been delayed for now.  They removed the epidural from his back and switched to oral Oxycodone and Tylenol. For the most part, Hunter seems comfortable. The only time he is not comfortable is when they try to move him. The slightest movement makes my poor little guy scream. It breaks my heart.

The neurosurgeon will evaluate the fluid tomorrow. Surgery is not ruled out yet. But, he will try everything first before putting him through that again. Hunter is usually so active. I never thought I would see my child lie on his back for an entire weekend. I thought this was impossible. In fact, when the neurosurgeon told me that Hunter couldn't move for two days, I said to him "In no way, would this happen". I was wrong.

For now, this is how Hunter spends his time.

Day One - Post Operation Dorsal Rhizotomy

Hunter started out his day with smiles. He was wide eyed, lifting his arms up for anyone to help him get out of bed. The neurosurgeon came in early. After he looked over Hunter, he said that Hunter was doing better than he could expect. His orders for the day was to keep Hunter on his back. He switched him from clear fluids back to a general diet. He said tomorrow afternoon will be the day we get him out of bed. This will be a slow process. It will start with them gradually sitting him up.

This afternoon was eventful. Hunter had special visitors into his room. The first visitor was Marty Turco. Turco began his hockey career at U of M. He spent one season with the Chicago Blackhawks, another season with the Boston Bruins, but spent most of his time with the Dallas Stars. He was a goalie. The second visitor was Jeff Backus. He started his football career at the University of Michigan. Afterwards, he was drafted into the Detroit Lions and played his entire career with them.

Marty Turco, Dallas Stars (Left), Hunter, Jeff Backus, Detroit Lions

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His Grandma, Grandpa, and other visitors came to visit. We started to notice that Hunter was getting tired. When the afternoon nurse came to check his incision, she noticed that it was swollen and the bandage was leaking fluid. She called the doctor. The resident came in. He was concerned and called Hunter’s neurosurgeon. Hunter’s neurosurgeon advised him to take off the bandages of the incision to see if something his incision was leaking. This was entirely heartbreaking and painful for Hunter. He pushed, squeezed, and pinched the area that is swollen. Hunter had a very rough time with this. They changed the bandages and are waiting the night out to see if more fluid leaks out. Hunter ate a grilled cheese sandwich. Starting at midnight, he will not be allowed any more food until the Neurosurgeon sees him tomorrow. This is precautionary, in case in has to go into surgery tomorrow. The doctor doubts he will need the surgery. But, it will depend on what the bandages look like in the morning. If surgery is done, they will be checking for internal bleeding. Hunter is resting peacefully right now.

The Day Is Here

I will update this blog as the day progresses.

We arrived at 6:30 AM today for Hunter's surgery. Hunter was spunky. We met with the neurosurgeon once again. I expressed concerns over the complications that I researched. Meningitis is one complication that really scared me.  He reassured me that they do everything possible to avoid complications. Before Hunter went back to surgery, they gave him a medication that made him drunk. Of course, I turned on the video camera and started to record it. It was comical and added humor to this stressful day. I will post the very cute video later.

Our Drunk Son - Before Surgery

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He went back to the operating room around 7:30 AM. This is the last update I have for him right now. I will be updating this blog as the day progresses.

At 10:05 AM, we got a call from the operating room. Hunter is doing good. Surgery is still in progress.

We are at the 5-hour mark that Hunter is in surgery. At 12:30pm, we received another call from the operating room. The surgeons are working away. Hunter is doing good. We have no news on how much longer the surgery will take.

HUNTER IS OUT OF SURGERY AND EVERYTHING WENT GOOD!!!

I am in a hurry and will write this as quickly as I can. Please excuse any grammer errors. I don't have time to proofread this. We can be called back to recovery any moment and I'm going to be running back to see my precious Hunter when called. Yes, after almost 8 hours, Hunter is out of surgery. I have not been able to see him yet. But, I met with his neurosurgeon who explained to me what happened in the surgery.

The surgery went well. The only complication is that Hunter is wired up differently. He has different amounts of nerves in his spine than most. Also, he has a 13th rib. This made the surgery a little more complicated. If they would've clipped the wrong nerve root, he could lose function of his bladder. They had to be very careful. After the surgeon and many other doctor's talked about it, they are confident that they clipped the right nerve roots and his tone is as close to normal as it can be.
Day One - Post Operation

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Hunter has to remain on his back all weekend with little movement.

I'm posting the last update of the day and signing off. Hunter is resting peacefully in his room. He is still sedated and the pain seems controlled with medication. He remains on a clear liquid diet until tomorrow. He is stable and watching cartoons.

We appreciate all the support, love, thoughts, and prayers that we have received from friends and family. I'm so tired that I can't think straight to continue to write this blog. I will write more tomorrow. 

Tis the Eve Before Surgery...

I'm a nervous wreck.

I'm sure this is normal at some extent for most parents whose children are going through an intensive surgery. Throughout his entire days in the NICU and past, I have seen Hunter go through so much. I didn't know that one person could survive the battles he has gone through. And, here we are again, facing a whole new issue.

Throughout Hunter's entire journey, I have had my attitude ups and downs. Some days I feel more positive than others. A nurse in the NICU once told me that ignorance was bliss. She said to me: "Don't you wish you didn't know". This was after his long journey in the NICU. She said this after I have saw the human body pushed to the most extreme forms of medical complications and get through it. Now, that I have seen the worse form of complications, I can't help but to re-live them again. It leaves me scared about such a difficult surgery and it's outcome. The nurse is right. It was easier when I didn't know how bad it could get. But, I know complications can happen. I'm a realist. And, I know they can be severe. This leaves me laying awake at night...worried and wandering where our road is heading.

I wander if I'm strong enough. These last five years of ventilators, oscillators, nasal cannulas, oxygen, feeding tubes, past surgeries, medical equipment, emergency room visits, inpatient stays, AFO's, walkers, medication, doctor's appointments, and his other disabilities have wore me down a bit. I'm not going in this with a fresh and open mind, like Hunter's earlier days. I'm jaded; emotionally and physically exhausted.

I feel that the hardest thing in life is watching your child suffer and not be able to take the pain away from them. And, I know that after tomorrow, I will be experiencing this feeling of helplessness. However, am I selfish for writing about my feelings? After all, Hunter is the one that has to experience all this trauma and pain.

Happily, he's going to walk into the hospital and get knocked down pretty hard without understanding what happened to him or why. I wish I could make him understand what was coming up for him. I have tried talking to him. I wish I could warn him that he will have pain and discomfort, but this surgery could really pay off for him in the long term. I wish I had a magical way of making him understand how loved he is. And, if it's the last ounce of strength that I have in me, I wish I could give it to him.  Everyone that meets Hunter says that his determination, strength, positive attitude, and happiness needs to be bottled because it's rare. This is so true. I hope he still has it in him to fight through something so big. I just want my child happy. It's so hard to see that he has no clue on what's coming next.

I thought it was important for Hunter to spend the day prior to his surgery next to his immediate family. So, we are having dinner and desert at his Grandma's house for the eve before surgery. Here are some videos of Hunter before the surgery. I thought it was important to document him in his walker. Hopefully, his walker will be a thing of the past soon.

Here is a video of Hunter before his surgery:

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The Little Charmer:

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Hunter's Next Obstacle - The Midline Dorsal Rhizotomy

Life has got in the way and it has been awhile since I have wrote in Hunter’s blog. I have been enrolled in school full time and adjusting to life as a single mom. As you can imagine, this has me busy with little time to sit down and blog.

Hunter has been doing really well. He has been healthy. We still struggle with his vision, speech delays, and cerebral palsy. The Retinopathy of Prematurity still has a stronghold on Hunter's eyes. It worries me that his vision continues to get worse and I dread his vision appointments.  He has been going to pre-school. His school works with an IEP.  He receives his speech, occupational, and physical therapy. In addition, they bring an outside consultant in to work on vision and mobility with him. The school he attends is wonderful and I can't speak more highly of the entire staff that works with Hunter. Despite his disabilities and developmental delays, Hunter is normal as he can be. His disabilities does not define him whatsoever.

Recently, Tim and I had to make an important decision on Hunter’s medical treatment. We met with Hunter’s Physical Medicine and Rehabilitation Doctor. Hunter is outgrowing Botox injections. In previous blogs, I wrote that the Botox injections were used to reduce the spasticity in his legs as a result of the cerebral palsy. Under her advisement, she suggested that we start looking at more long lasting, permanent forms of treatment.

Our first option was a Baclofen Pump. The pump would have a catheter that was inserted into his spinal fluid. The pump would provide constant medication and would reduce spasticity. However, Hunter is diplegic. This means that the cerebral palsy only affects him from the waist down. Baclofen would affect his entire body. In addition, Hunter is too rambunctious to have a pump attached to him. This spelled nightmare and many late night emergency room visits to re-insert the catheter when Hunter would yank it out.

Our second option was to do nothing. Let Hunter be how he is. This means that eventually the spasticity in his legs would start wearing his joints out and cause him pain. He would always walk with his walker. Hunter is capable of so much more. So, this was not an option either.

Our last option was called the Midline Selective Dorsal Rhizotomy. It is an intensive surgery. The Rhizotomy requires the surgeons to go into the nerve roots in the spine and start clipping them to permanently reduce the spasticity in his legs. We chose this treatment option and Hunter goes into surgery on Friday, May 17, 2013.

We had our last visit with the neurosurgeon's office today. We found out that the surgery will last for approximately five hours. They will break apart his spine and get to the nerve roots, they will attach a machine and figure out which nerve roots are causing the spasticity in his legs. After they know which nerve roots are affected, they will clip them. It is our hope that this will reduce the spasticity. Our goal is to have him walk independently after months and months of physical and occupational therapy. 

However, recovery is not easy. Once the surgery is over, Hunter will be in the hospital for 14-21 days. They will give him the weekend to rest. They will start extensive inpatient physical and occupational therapy on Monday, May 20th. They warned us that this day will be hard on Hunter. He will still be very sore from surgery and they will have him moving around. Hunter will have to learn everything again. They will start from the beginning and move forward. He will have to learn how to roll over, crawl, and walk. Hopefully, when he learns to walk again, he will walk without a walker and/or his range of motion will improve significantly.

Initially, they warned me that when Hunter comes out of the surgery, the tone that he has relied on will be gone. It will appear that the surgery has set him back. He will be in a wheelchair for approximately 3 months. As he progresses through physical and occupational therapy, his condition should improve and our ultimate goal is to see him walking independently. After his release from the hospital, Hunter will be in therapy 3-4 days a week for a year. Therapy will last a couple hours on each of those days.

With all this said, I am going to activate his blog again. I will be blogging through Hunter’s entire transformation. I can’t wait to share his struggles, progress, courage, strength, and determination with the world. It is my dream to see my child walk, run, and play with other children. I know that a miracle is around the corner. I know Hunter can do this. Now, I want to share this with you. Please stay tuned for his progress.