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.

To Botox or Not to Botox....

So, here I am again. Once again saying that I will not give botox to Hunter ever again. I'm wide awake at 1 AM worrying about the effects it will have on him, both short and long term. I reach for the one thing that I shouldn't. It is the one thing that, since the day of his birth, the doctor's and nurses warned me about. Yes, I'm talking about Google and all the horror stories that exist of medical treatments that go wrong. Google is abundant with stories of botox that has gone wrong in children with spastic diplegia (cerebral palsy). So, I sit here and pray. I pray that the next couple weeks will only provide Hunter with relief from his spasticity. I pray that it does not get in his blood stream. I pray that the treatment was successful. Do I do this again? Every thing is telling me not too. Yet, I feel somewhat pressured by his therapists and doctors to keep doing it. But, it is a toxin that I'm putting in my poor baby's body. It makes no sense. The treatment has been done. I can't take it back now. He will be due for his next injection in six months. I will be seriously contemplating this procedure for the future. I will be weighing the risks and benefits and approach this issue again in a couple months.

How 2011 came and went

I knew that it has been awhile since I wrote a blog entry, but I was surprised to see that it has been well over a year since my last blog entry. Wow!

So, Hunter's progress is slow and steady since my last journal entry. He continues to make small strides in his development. He is still walking with his rifton pacer walker. However, he will soon graduate out of this walker. He uses it as a crutch and is not working at his full potential in it. His medical team does not want him to push a walker anymore. They want him to pull one. They will be switching him into walker that is more behind him, than in front of him. He has mastered walking with a walker; whether he is pushing or pulling it. I mentioned to the physical therapist today that I wanted to see him walking with crutches. We tried it today. He did it. It was a short distance and he has not mastered it yet. But, we hope that it will be a work in progress and the new Hunter. Hunter will get his next round of botox treatments in January 2012.

Hunter's speech is still a problem for him. He says "momma". But, his other words are not words and consist of "gaggle", "yogi", and other misc. sounds. He is drinking much better than my last blog entry. In fact, I have finally taught him how to drink from a straw. This was difficult for him because of his feeding issues in infancy. He never learned how to suck, as most babies do. I'm hoping that with the work of a speech therapist, we can get his oral motor skills up and running.

His vision still remains a problem. We have had to increase his prescription strength. I'm not getting many clear answers on how bad his vision is, or what to expect. It makes me nervous for Hunter's sake.

In April 2011, we had a scare. Hunter went in for a hearing test and failed. After a couple tests and a visit to an ENT specialist, the results came back. He had water on his eardrums and needed tubes placed. He had the tubes placed and passed his next hearing test. Whew...what a relief!

These are all ongoing problems for Hunter. His speech and vision problems as well as his physical problems brought on by the cerebral palsy make it difficult for him to make huge strides, but the little strides I see make me hopeful that he is heading in the right direction.

Hunter is attending pre-school. He is receiving services there. I'm very pleased with his team of teachers, speech and physical therapist, and vision specialists. I feel that he is with a good team working with him and wanting him to succeed.

Okay, let's put all his medical conditions to the side. I think I've stated this a hundred times, but I'll say it again - his medical conditions do not define who he is. So, to get in touch with who this little boy is, I must say that he is highly moitivated, smart, and spirited. Despite his limitations, he is very active, plays with toys, plays with his peers, and smiles more than any child I have ever known. He still lights up a room when he steps into it.

Where do I begin...

It's been a long time since I have updated this.I have been so busy getting Hunter connected with the right therapists, doctors, and learning my way through the Arizona Early Intervention system. The system is so much different than Michigan and what I'm used too. It's fair to say that I've had my hands full. But, I think that I'm starting to get the hang of it and Hunter has started to see the right therapists and doctors here.

Hunter is doing great without oxygen. He hasn't needed oxygen since we moved to Arizona. He sleeps well without it. He is getting through his second cold of the year and seems to be handling it like a champ. **knock on wood** The oxygen days seems to be over. However, I'm still having a hard time breaking away from the pulse oximeter. It has been a security blanket for so long. I've been telling myself that I have to break away. I don't hook it up to him at nap times and slowly weaning it from him at night as well. The doctor's seem to understand my concern and are supportive with whatever decision I make - to monitor or not to monitor him.

Hunter's eating habits are much better. We have been working really hard with him. He will eat two meals a day now. He has the same thing that we eat for lunch and dinner. He still is getting his night g-tube feeds. Because of this, he doesn't seem hungry in the morning. We are working at resolving this. The tricky part is getting Hunter to drink. He still does not have the concept down. Our new assignment is putting water in apple sauce. We make it a little runny and have him drink that. He has been trying it. Some days are better than others. But, he is trying it and that's a start. If we can get him to drink, the g-tube can come out.

Hunter still has other obstacles. His cerebral palsy is a big one. We take him for miniature walks with his rifton pacer walker. Hunter has difficulty with distance, controlling his walker, and he gets tired easily. We know that practice will make perfect. So, we insist that Hunter takes a short walk every day. The muscle spasticity does show and Hunter has trouble with scissoring and walking on his tippy toes. Our search for a good botox doctor is underway. He has his first appointment with one on October 1st. We also found that Hunter likes to swim. He gets exercise in the pool and that helps him. It relaxes his muscles and he is having fun.

Another one of Hunter's major obstacles is his vision. I try to imagine what it would feel like to have a blind fold over my eyes and figure out my way through space. Although Hunter is not completely blind, his vision is not good. We have struggled to get Hunter to wear his glasses. After I lost one pair in the mall, I think I finally have him getting used to wearing them. We aren't sure how much his glasses has helped him yet. We pray and cross our fingers that it is helping him. He just can't tell us yet. This leads me to his other obstacle.

His other obstacles are his speech and developmental delays. His vision and cerebral palsy has a huge impact on his developmental problems. We continue to work with him. We are learning sign language. It is not because Hunter will never communicate. It is because children with speech delays usually start speaking after you teach them sign language. For now, Hunter will not speak any words. I believe in the power of prayer. I will not give up on him.

Hunter is making slow progress in the things that he does. He loves to climb on furniture. He is also throwing things and loves to play catch. He remains at 30 pounds. He has been this size for awhile. He is at a good size.

Finally, I just received news that Hunter will be starting pre-school. This might happen as soon as April. I don't have many details yet, but will post more about this later.

Welcome to Holland

Welcome To Holland
by
Emily Perl Kingsley


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

* * *

©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.

Visual Impairment

Hunter met with his new opthalmalogist today in Scottsdale. We were very impressed with him and happy that we found him.

Our next big challenge with Hunter is to get him to wear his glasses. Hunter is more near sighted than we thought and his prescription has been increased to a higher strength. Hunter is considered legally blind and without glasses he can only see 6 inches in front of his face. The problem we are having now is that he won't wear them. If he continues to fight us, he could form a "lazy eye". This means that his brain will no longer register what he sees at all and he will be completely blind. Fortunately, we still have time before he forms a lazy eye. Although, the process may be set in motion right now. If the process of lazy eye has started, it can still be reversed at his age. But, as he grows and becomes older, this problem will be harder to be reversed, if not impossible. They believe his problem stems from the Retinopathy of Prematurity he had during his NICU course.

Hunter has already broke the 3 pair of glasses that he has had. So, we are taking another direction with his glasses. Instead of going with the fashionable frames, we are getting him these rubber type frames that is pretty hard, if not - impossible, to break. He will have these until he gets used to wearing them. Then, we can change him back to the fashion frames. Right now, his vision is more important than any fashion frames and this is our focus.

We have been connected with a really nice lady here in Phoenix. She is with the Foundation for the Blind. These special type of frames are very expensive. Many insurance, including ours, will not cover them. However, she is helping us to obtain a grant that will cover the hundreds of dollars these unbreakable frames cost.

For now, Hunter and me are going to war with one another. He will wear his glasses whether he likes it or not. I'm prepared for him to fight me with everything he has. He has already showed me that. But, I will not allow him to form a lazy eye. I will be there every second that he pulls the glasses off to put them back on.

Oxygen Be Gone...Finally!!!

After two long years, and a couple false starts, the oxygen has been pulled from the house. Hunter is successful sleeping without it. His oxygen days are finally over!!! Yay!!!

New Start

It's been a long time since I wrote. It is mainly because we moved from Michigan to Arizona. It has been a crazy time trying to get acclimated to the new environment, getting Hunter set up with the same medical care and help that he had in Michigan, and I'm a little guilty of doing some sightseeing.

Hunter has went all over Arizona and Las Vegas. Okay, honestly – we’ve had a blast since we have been done here.



The move went well. Our budget truck slowed us down, but we made it here in 4 days, instead of the planned 3 day trip we were hoping for. Hunter had a cold when we left Michigan. This set him behind, even after recovering from cold, he has needed oxygen on and off again throughout the night.

Hunter is eating more than I have ever seen him eat. I have him eating two meals a day. Hunter eats in small portions. But, this is a big improvement. I'm keeping him on a routine for lunch and dinner. I'm hoping to add breakfast soon. He still has his overnight feeds through his g-tube. I'm assuming that he is not hungry or interested in breakfast because of his overnight feedings. However, he is getting hungrier earlier and every day is making a difference in him. He still has problems drinking, and will not drink anything. So, the g-tube helps him stay hydrated and gives him the extra calories that he is not getting with his small meals.

We met with Hunter's Pediatrician here in Arizona. It is hard to compare him to his Pediatrician back home. I don't think I'll ever find a Pediatrician like he had in Michigan. I have expressed my love for Hunter’s Pediatrician back home, and I have to drop my high expectations in finding a doctor like him. His new one seems very good, nice, and patient. He asked us a lot of questions and seemed interested in Hunter. We were impressed and plan to stay with him. But, I have to admit that I cried driving away from his new Pediatrician’s office. It just wasn’t the same appointment experience I had in Michigan. It’s hard to trust the new one, like I trust his Pediatrician back home.

We also met with Hunter's new pulmonary doctor. They are calling Hunter's lung problems asthma now. Yet, we still have some Chronic Lung Disease of infancy that is rattling cages. His pulmonary doctor also seemed nice and the nurses in the office were very helpful. They referred us to all the places in Phoenix that could help Hunter get the help we needed. I have followed up with the Department of Developmental Disabilities, Foundation for the Blind, and have Hunter's case open with Early On. He had Early On in Michigan, and I'm so grateful for the nurse in that office for the information on where to turn and who to call. If there is help out there, I will see that Hunter gets it.

His pulmonary doctor has ordered another sleep study for Hunter. This is being done tonight as he sleeps. He has also ordered another swollen study. We need to get to the root of Hunter's drinking difficulties. His Pediatrician is in the process of sending a referral over to have Hunter evaluated for Physical Therapy, Occupational Therapy, and Speech. Our upcoming appointments will include an appointment with Hunter's new eye doctor, and cardiologist.

I have also been dealing with the University of Michigan Wheelchair Seating Services. They ordered the wrong walker for Hunter. It was too small. This is a very long story and I don’t have anything nice to say. So, I’m just going to end it with saying that after much yelling, screaming, crying, Hunter is getting the right size walker. We hope to have it delivered by July 1st. But, I am going to say that I was deeply disappointed at the effort it took to get my son the walker he needs to walk. I can’t believe that it took almost a year to get the right walker. I just hope that someone else who has handicap children do have not have the same experience as we did.

Our main concerns are Hunter's developmental delays, especially his speech and his low vision. We truly believe that he is outgrowing his lung problems and pulmonary hypertension. I also believe that he is eating much better. His diet is expanding. We just have to get him to drink fluid.

Accomplishments!

We knew it was coming. We just weren't sure when it would arrive. But, Hunter has mastered the hard skill of walking in a walker. He is doing really good, and is enjoying his independance.

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I am so proud of all his hard work in therapy. But, I'm also proud of the many other accomplishments that I see with Hunter every day. Hunter is eating more and more food. He is showing an interest and we are feeding him what we have for dinner. His diet has expanded further than I could imagine, and he is even eating vegetables. He is not ready to come off the G-tube. Some days are better than others. But, he is coming by leaps and bounds. I will be requesting another swallow study to see how those muscles that were weak from his prematurity are coming along.

Hunter just had two nights and days without oxygen and did great. His pulmonary doctor ordered a sleep study. This consists of hooking him to a pulse oximeter for two nights. The pulse oximeter records every second of his oxygen level and heart rate. After this information is downloaded from the pulse oximter, it is returned to Hunter's Pulmonary doctor. He makes the final decision on whether Hunter is able to come off oxygen. We are crossing our fingers.

Hunter's World...we're just living in it!

It's been a long time since I've wrote in Hunter's blog. I had pneumonia for the good portion of March and have been really sick. Fortunately, I got it and Hunter didn't. He has been moving forward with everything he does and makes me smile and proud every day.

Hunter keeps making strides in his development. He is cruising along furniture and getting braver and more independent. He also gets in to everything and my house is no longer pretty. My rock gardens and glass decorations that were once home on my living room coffee and end tables have been put away. He was trying to eat the rocks, trying to break my glass globes, and both things could hurt him. He wants to eat rocks, but not food. I don’t understand it. But, they are packed up now. I will wait until he gets a little older and have accepted that my house won’t be pretty for a couple years. My living room is baby proof, along with my kitchen cabinets, and the bedroom doors are constantly shut. We can’t forget about the bathroom too. We have to keep that door shut. He discovered that the toilet has water he can play in. The only thing I can't baby proof is the TV. He likes to take his hands and bang on it. So, we constantly have to stop him. He is two and everyone in the house knows it.

He has also learned how to walk forward in his baby walker. This is a huge thing for him. His therapist was thrilled to see this. She has high hopes that he may not need a walker. He is doing so much better than they expected. But, they have a special medical gait trainer on order for him. He has accomplished so much in the last year. He never stops amazing me. They are going to start him in speech therapy. I will update his blog once he starts.

From a lung perspective, Hunter saw his pulmonary doctor recently. His Pulmonary Doctor believes that Hunter is outgrowing the Chronic Lung Disease. His lungs will still be a problem for him for years, if not a life time. But, it won't be the say as when he was a baby. Each day, brings healthier lung tissue. They have decided to move forward and schedule a sleep study. If Hunter passes the sleep study, he will be able to come off oxygen permanently. Please pray that he can do it! His requirement for oxygen requires his lungs to be strong enough, plus his Pulmonary Hypertension has an effect on his oxygen requirement.

With that said, Hunter also had an appointment with his cardiologist. The pressure in Hunter's heart was still slightly high on the right side. The cardiologist believes that Hunter's lungs are getting healthier, which has a direct effect on his Pulmonary Hypertension. As new lung tissue grows, his heart condition will get better. The cardiologist is not concerned. In fact, they are going to try to wean Hunter off his Pulmonary Hypertension medication over the course of a couple months.

Hunter has maintained his weight at 30 pounds. He is normal size and weight for his age. But, we haven't been able to get him off the feeding tube yet. This has been difficult. We are trying everything. We feed him every day. Sometimes we have success. Sometimes we can't get him to take a bite. It's not consistent. Therefore, he still needs the g-tube.

We continue to work with Hunter as we always have. Please pray for him and the upcoming sleep study!

Happy 2nd Birthday Hunter!!!

Dear Hunter,

I wish you the best 2nd birthday ever! I love you more than words could ever say. You are my world, my life, a miracle, and a gift. I'm truly blessed for every day I have with you. You're a strong little boy and I admire your strength. I thank God for you every day.

May your birthday be fun filled.
May all your wishes come true today and for the rest of your life.

You are a very loved little boy!!

Hunter got his first haircut

The "before" shot - notice the curls around his ears:


Aunt Jen and Hunter(the Haircut) - I thought we were going to need an army to hold him down.



The "after" picture:


A very special thank you to Hunter's Aunt Jen for taking the time and patience to cut our little man's hair. You're the sister I never had. We love you very much!

Miserable Monday

I have to first say how I amazed I am by each one of my friends and family. I'm truly amazed that such a wonderful group of people can be there to listen, support, and pray. I'm so grateful that throughout my ordeal, I have each one of you to pull me back to my feet.

We had a scare today in Hunter's Developmental clinic. After they performed a test, a doctor approached me. She told me that something is not normal with Hunter. When I asked her what she met, she believes that something is wrong with his head circumference, and his head was not growing right. I dug little deeper and asked more questions. What did she mean by that? She replied and told me that she believes Hunter's brain could've quit growing, or that he had a condition where his skull molds shut prematurely. I asked more questions, and thought we may be looking at the possibility of either a severely handicapped child or brain surgery.

I left that appointment so upset and concerned for Hunter's future. I couldn't wait. I couldn't drive home and sit on it. At one point, I was so upset that I had to pull off the road for the safety of Hunter and me. I called Hunter's Pediatrician immediately. They wanted me to come in, and fit me into the afternoon schedule. After being half way home, I turned my car around and headed back to Ann Arbor. I needed answers.

Hunter's Pediatrician got me through another scary and hard day. He measured Hunter’s head circumference and laid out the graph in front of me. The graph let me see his growth (weight, height, and head circumference) since his discharge from the NICU. His head circumference is not falling behind and is growing in accordance to his height and weight. He also explained that Hunter has made such great gains in his development in the last 6 months. These gains would be not possible if Hunter’s brain was not growing. We don't know what the future holds for Hunter. But, we have moved past many obstacles and miracles. Hunter may need a couple more miracles and that is where my faith in God comes in. He has gotten us this far.

Our plan of care is not much different than our normal plan. We will still keep a close eye on Hunter. But, Hunter's life has always been under a microscope. We will watch for a time that Hunter's development stops. If that time occurs, we would dig deeper into the problem. For now, I will rest and this day will be gladly forgotten.

The Small Things

I found this picture yesterday. It was taken last February. It felt like yesterday when I took it. Hunter had just gotten out of the bath. We were redoing his NG feeding tube (the one that went on his face). In this picture, you can see the nasal cannula up above his head. He could only handle being without oxygen for less than a minute. But, we wanted to snap a picture of him without anything on his face - no feeding tube or oxygen cannula.



Immediately after this picture was taken, the cannula went back on, and we also had to insert the feeding tube. I remember how hopeless I was feeling on this particular night. I felt that the oxygen would always be a part of him. I felt like I would never see it off his face. At that particular moment, I loved to see my son's handsome face - clear of all that he has been burdened by in his life. I'm with Hunter every day, all day. It sometimes seems like things are moving at a snail’s pace, if not changing at all. Then, I have these pictures to remind me how far he has come.

Hunter's oxygen days are almost over. They probably would be over altogether, but I’m being overly cautious. Maybe, Paranoid! If Hunter is sleeping without oxygen, his oxygen saturation stays in a normal range, but his heart rate is higher. If the oxygen is on, he sleeps with a lower heart rate. He’s maintaining his oxygen saturation though with or without oxygen. Now, we need to work on that heart rate. I need answers why it increases when he doesn’t have oxygen before I feel comfortable to remove him from the oxygen altogether. I guess my paranoia stems from his pulmonary hypertension. The higher heart rate is telling me that Hunter’s body is working harder to maintain his oxygen saturation. I don’t want his heart working harder than it has to be. This issue will be discussed with Hunter’s Cardiologist and Pulmonary doctor at his next appointments.

We were told awhile ago that Hunter has Cerebral Palsy. We've had time to digest it. We had two choices: 1. crumble and fall apart (which I did for a brief day or two), or 2. Pull it together for him, be strong, and research all types of therapy and determine what was best for Hunter. Option #2 was the only sensible one. Long ago, I wrote out a list for his doctors, and I’ve been following their advice since.

When Hunter was first diagnosed, it was explained that his condition is mild to possibly moderate. We were told that on a scale of 1 to 10 - he was at a 2 to 3. At the severity Hunter was at, it was manageable. We didn't know much and really needed a crystal ball at that time. We did know that Hunter would be delayed in development; he would also have to think his actions through. For example, we see stairs – we climb up and down them with very little thought. Except for me, I’m a klutz. In the future, Hunter might have to think about that flight of stairs and tackle it a different way than a person without cerebral palsy.

Hunter hit another milestone. Although it wasn't the ideal side stepping/cruising that most children do; Hunter handled it with as much grace as a child without cerebral palsy. This gives me hope. Hunter walked along the couch. It was not side stepping. He had to turn his hips to walk forward, while his arms remained on the couch for support. His therapist reminded me that this was Hunter thinking it through. I was told that side stepping for Hunter will either need more botox in the inner muscles of his legs (adductor muscle) or it might be close to impossible at this stage. It was the cutest thing I ever saw. I ran to get my video camera. By the time, I had the video camera out, Hunter wasn't doing much anymore. Hopefully, in the days to come, I'll be able to catch him with the video.

Hunter took it a step further. He transferred himself from the couch to a toy nearby. His therapist reminded me that these are all pre-cursors to walking independently. I’m very excited.

I’m including a video of Hunter in his private therapy session. Please remember that this was not Hunter at his best. Again, by the time I grabbed my camera – he wasn’t performing like he did when the camera wasn’t out. After all, it’s the little things (or steps) that count. They lead to bigger and better things.

Photo and video editing at www.OneTrueMedia.com