The sweetest words I've ever heard ...
Hunter still struggles with speech apraxia. This makes it very difficult to understand what he's saying. But, tonight a miracle came.
I was tucking him into bed and getting him nice and cuddly. As I started to walk out of the room, he said: "I love momma". It was as plain as day. I looked back at him in complete disbelief. I said, Hunter say it again. He said it again: "I love momma".
For the first time since he was born and after 10 years, I understood when he told me he loved me.
Thank you, God, for the miracles you perform! This is the best gift I've ever received.
Tuesday, October 30, 2018
"I Love Momma"
Posted by Renee at 9:18 PM 0 comments
Thursday, May 31, 2018
Clingmans Dome
Posted by Renee at 6:30 PM 0 comments
Monday, March 24, 2014
March of Dimes
It has been an eventful year. Hunter has been working hard to walk after surgery. After being told that he would never walk with canes, Hunter decided to prove them wrong. Hunter had two therapist; One therapist at the hospital, the other at his school. I wasn't fond of his hospital therapist because she always projected a lot of negativity towards Hunter. Needless to say, she is not his therapist anymore. However, his school therapist always believes in Hunter and never gives up on him. She is Heaven sent. Two days after his hospital therapist told me he would not walk with canes, his school therapist sent me this video of Hunter.
After I approached the hospital therapist with this video, she told me that Hunter "may" walk with canes, but would never be able to walk around a store. The next video, Hunter walked the entire grocery store with me for the first time.
He is doing fabulous and every day is showing improvement. He is walking around the house unassisted. He can take a good 10 steps without canes. We are getting there!
With that said...
For the first time ever, Hunter will be walking in the March for Babies. I hope you can join or donate to Team Hunter:
http://www.marchforbabies.org/personal_page.asp?pp=5301760&ct=4&w=6709356&u=reneebrindamour
Posted by Renee at 8:43 PM 1 comments
Thursday, June 20, 2013
Week Five Post Operation
I have both good news and bad news to share.
I'm going to start with the bad news first. The swelling in Hunter's back is not getting better. We met with the neurosurgeon yesterday. He has decided that Hunter has to have another surgery. If surgery is not done, the fluid in Hunter's back will cause his skin to deteriorate and his bones will become brittle. They are setting Hunter up for an MRI. The MRI results will determine the type of surgery needed to fix Hunter's back. I was told that it will probably be another inpatient stay that will last about a week.
The good news is that the swelling is not slowing Hunter down. This video demonstrates Hunter's biggest accomplishment this week.
Posted by Renee at 3:30 PM 1 comments
Friday, June 14, 2013
Week Four Post Operation
~Orison Swett Marden
Posted by Renee at 2:54 PM 0 comments
Thursday, June 6, 2013
Week Three Post Op: Learning to Walk
Posted by Renee at 6:44 PM 0 comments
Labels: Cerebral Palsy, Midline Dorsal Rhizotomy, Post Operation, SDR, Selective Dorsal Rhizotomy, Spasticity, Surgery
Friday, May 31, 2013
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.
Posted by Renee at 3:51 PM 0 comments
Wednesday, May 22, 2013
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.
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.
Posted by Renee at 8:10 AM 0 comments
Monday, May 20, 2013
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! |
CrissCross Applesauce. Look at how relaxed those legs are! |
Posted by Renee at 2:29 PM 0 comments
Labels: Midline Dorsal Rhizotomy, Selective Dorsal Rhizotomy
Sunday, May 19, 2013
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.
Posted by Renee at 8:31 PM 0 comments
Labels: Dorsal, Incision, iPad, Oxycodone, Rhizotomy, Selective Dorsal Rhizotomy
Saturday, May 18, 2013
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 |
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.
Posted by Renee at 10:22 PM 0 comments
Labels: Jeff Backus, Marty Turco, Midline Dorsal Rhizotomy, Post Operation, Rhizotomy, Selective Dorsal Rhizotomy