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

Crystal Ball

I can't begin to explain how many questions I have had throughout this process that needed a crystal ball to answer. I thought that would only be an issue while in the NICU. But, it continues as Hunter gets older and on a much different scale. While in the NICU, the crystal ball would've been nice to tell us that Hunter would've survived through his severe illnesses, extreme prematurity, and all that applies. After the NICU, the crystal ball would be nice to tell us how his Cerebral Palsy would affect his ability to function. Would he be able to walk independently? Would he need an assisted device to walk? If so, how long would he need it? Would he need it forever? Will his life be normal? How will his vision affect him? When will we be able to lose his feeding tube? And, the oxygen...will he ever be able to get off it at night? Is his Pulmonary Hypertension really secondary to his Chronic Lung Disease, or is it an ongoing problem? Will it shorten his life? Oh, where oh where is our Crystal Ball.

I'm starting to get the hang of it now. When this started, I couldn’t distinguish between a crystal ball question and a question the doctor’s could answer. So, I asked them many questions and was shot down many times with an honest answer of “only time will tell”. Now, I know the difference - but I still ask them anyways. Why do I do that? Maybe, I ask with the hopes that I will get closer to figuring out Hunter's future. But, most of my questions end up with the same response I have received for almost two years now..."Only God Knows". I have the utmost respect for Hunter’s team of doctors and specialist for being honest with me.

At some point, and you think I would be a pro at it now, I have to accept that nothing is under our control and everything is under God's control. I feel that we, as humans, try to control our lives. We are given the gift of free will and somehow that makes us feel that we are in control. I didn't learn this until I had Hunter, until I went through the NICU experience, and until I saw all that he has gone through after the NICU. God is the man that holds the answers to all these questions. He is the only one that decides how Hunter's life will be. How Hunter’s life will be is the path that God has chosen for him. It is exactly how God intends for it to be. Who am I to argue with him and what he decides for Hunter? So, when am I going to accept this and stop worrying? See, another crystal ball question…

I remember a time that "so called" friends said they were supporting us. Yet, behind my back would say that I was overreacting to Hunter's health problems. Was I really overreacting when they told me my son was very sick and stood only a 15% (sometimes lower) chance of survival? They would pass judgements on how we handled our situation. It really made me question if what I was doing was the right thing? I can say that I don't regret any decisions I made during our experience. I did what was best for our family, whether they thought so or not. It wasn't there judgement or decision to make. I remember a time that people would tell me not to worry. There child was in the hospital for two weeks with a flu, but they pulled through. Are you kidding me? I laugh about that statement every now and then. I laugh that someone is so ignorant that they could relate extreme prematurity to the flu. But, I also remember how badly that hurt me at that time. Then, I had to accept their ignorance and move forward. We have done a good job at sifting through the people that claimed to be friends, but were hurting us beyond what was imaginable. Not only is the NICU experience completely tragic in its own content. It’s also tragic that people are out there to kick you as your trying to pull yourself up just to live and face each day. Before Hunter was born, I could never imagine how many people we had in our lives that would’ve jumped on the chance to hurt us. But, again for every friend we lost, we gained two or three more. The people we encircle ourselves around now, are our true friends. We are so grateful to each one of them. Am I still angry at these people that hurt me? You better believe it. But, it is something within me that I have to work on forgiving, forgetting, and moving forward. Am I happy that I know who they are and I can avoid them like the plague? Grateful and Happy.

I feel that it’s so important to explain the emotions and life experiences that happen when you deal with something as tragic as we did. The more parents I talk to, I begin to understand how common the crystal ball comes into play, the people that kick you when you’re down, losing friends, making friends, finding yourself, finding religion, and being able to look at things from a different perspective is something that is just much associated to this experience as updating everyone on Hunter’s health and his battles. Parents deal with their own battles through this experience. I’m so thankful for the people who have gave me their shoulder and ear…to cry on, laugh with, and listen too.

So, to update on Hunter's health - The Botox seems to be making a huge difference. Like I said in previous blogs, they started him with a small dose. They may need to increase the dose next time. At first, my hopes were that he would be able to walk independently. We have been working on his walking skills. But, after visiting his Physical Therapist, and after we saw how well he got around in his walker, it is evident that he will need a walker. His walker is on order. We are waiting for it to come in. He will need his walker for awhile, at least. The Botox has helped the spasticity. The scissoring his legs do when he walks is not as bad. But, he still stands on his tip toes. He still does not have the strength required to walk independently in his hips, legs, and trunk. The first year of a baby's life is so important to build the strength they need. Hunter had so much working against during his first year with multiple hospital stays, poor lungs that hindered his ability to breathe, and the list goes on. Therefore, the strength he has is very limited. I can honestly say that he is getting stronger every day. We will continue with Physical Therapy three times a week.

Eating has been hit or miss. Although, I have to announce that Hunter ate an entire grilled cheese sandwich. We were very excited, but this was only one time. We have tried since then and had no such luck. He does seem like he is getting more interested in food, but we can say that he still needs his tube feeds. It is very hit or miss.

I had a reality check with Hunter's vision last week. I have been holding out with the hopes that his vision wasn't as bad as they say it was. I have realized now, that I was in denial. It was so easy for me to be in denial. He saw his toys, played with them, crawled around the house, looks around at his surroundings, and doesn’t bump into anything. So, what's the problem? His vision is the problem. We saw a different ophthalmologist. He agrees with Hunter's last ophthalmologist that Hunter's vision is exactly what she said it was. He let me look through the lenses as he adjusted my vision to what Hunter would see. This was very hard for me. I could've never fathomed it was as bad as it was. I could not see the room around me. It was almost completely white with a few undistinguished shapes. I'm not sure how Hunter moves around or how he plays with his toys having vision like this. But, we are really pushing the glasses on him now. He doesn't like them and continues to pull them off. We are constantly putting them back on. Hunter's glasses would correct it to a degree. But, we aren't sure to what degree. His retina looks good with no signs of detachment. That is a good. Hunter will be seeing an eye surgeon who will test each layer of the eye to see if it is functioning normally. If his eyes are functioning normally, then we have to chalk it up to being severely near sighted. He is near sighted to a degree that no one could possibly understand unless you could see it through Hunter's eyes.

The status of his lungs and heart has not changed since the last time I wrote. He is still requiring the oxygen at night. We aren't sure if that is due to the Chronic Lung Disease or the Pulmonary Hypertension. All we do know is that his Pulse Oximeter lets us know (loud and clear) that he still needs it. Hunter will be having an appointment with his cardiologist soon. We will see then how the pressures in his heart are doing.

So, that’s status update on Hunter. Overall, he is doing really well. He is making gains in his Physical Therapy and he amazes me how much he has accomplished over the last six months.

Botox Treatments

Hunter's botox treatments went off without a hitch. They could not completely put him under because of his cold. They didn't want to intubate him because shoving a breathing tube down into his chest could spread the cold or stir up the infection in his lungs. This would be risky with Chronic Lung Disease. They were still able to use a little gas, so that he could be comfortable. Now...we wait! It takes up to a week for it to start working. It takes up to 3-4 weeks for it to reach its full potential.

Before he went back for his procedure, I was able to catch a couple photos of him. Hunter was getting ansy, so the nurses brought out a big bubble lamp to keep him entertained. Hunter likes the lights. You can see that he is wearing his hospital gown.

The Eve Before Botox

I just wanted to make a small announcement to those that are keeping track of Hunter's progress and blog.

He will be going in for his botox treatment tomorrow at 2:30 pm. This will be the first time he is receiving the injections. As I previously wrote in past blogs, this was a hard decision for me to make. The internet painted this out to be dangerous in young children. After careful consideration and advice from the doctors, we decided to move forward with the Botox treatments. We remain a little scared and very hopeful that this will help improve the spasticity in his leg muscles, with a focus on the right leg, caused by the cerebral palsy.

From my understanding, Hunter will need to be sedated and taken back to the OR. They will administer the injections there. Since this is the first time Hunter has had Botox treatments done, I'm not entirely clear of everything it will entail.

Please pray for him that this is successful. Hopefully, we will have a two year old soon that will be able to walk. I will post updates here tomorrow.

Hunter is battling a cold. Normally, this would be no big deal for most parents. But, for us - it is much different. It means monitoring and breathing treatments. It means listening to lung sounds, calculating respiratory rates, and many prayers that it doesn't turn into anything else, like pneumonia. It also requires late nights awake, and sometimes on the phone with his Pediatrician’s office after hours clinic questioning if we should take him in to the hospital.

So far, Hunter has been tackling his cold head on and doing well. He has developed a cough with this cold. A cough always leaves us concerned. We are not letting down are guard and are watching him closely, but I'm hopeful that we might be able to make it through this cold without a run to the emergency room.

This is Hunter's second cold this year. I remember last year and things have changed so much for him in one year. Last year, we were admitted into the hospital each time he came down with something. This year, he is getting through it without the need for medical intervention. Although, I know that Hunter will be susceptible to viral infections, like the cold or flu, it leaves me hopeful that we have seen the worst of his Chronic Lung Disease and Prematurity.

Christmas 2009

We were fortunate this year to have another nice Christmas.

On Christmas Eve, our tradition is to let the boys pick out a Christmas movie to watch. We sit down as a family, watch a Christmas movie, and open one present..This year, the boys all got new Pajama's on Christmas Eve...here are some photo highlights.




Here are a couple pictures of Christmas morning, after Santa came.

Holiday Break

Hi All,

It is the holidays. That means, two whole weeks without running to Ann Arbor for appointments. Hunter is getting a rest from all his appointments, including Physical and Occupational therapy. He is still moving forward with eating more and our new challenge is to get him used to different texture foods. He also doesn't like hot or cold foods. It must remain at room temperature. At some point, we will have to work around that obstacle. I don't have much to write, but thought I would post a video and a couple cute pictures.

The Video below is Hunter with his brothers. He loves his brothers and finds them so fascinating. Attached to this video, is another video clip. We caught Hunter standing for the first time. I wanted to share it with everyone!

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A couple cute pictures

The first picture is our crawling races down the hallway. Hunter wins!!


Hunter loves the Christmas Tree!


The McKeen Family wishes you a very happy, healthy, and safe Holiday!!!

The Angels that God sends....

Before I had Hunter, my special needs child, I saw disabled children and could never understand how parents of these special children could be at peace about the situation given to them. I always had sadness for these disabled or special needs children. Then, I had one of my own and I see how these parents are at peace about their situation.

I, truly, believe that God sends Angels to this world to help people get through a rough time. I believe that He has put me in the right place at the right time to allow me to be able to put things into perspective, or allow me to be able to accept things for what they are and to appreciate that they aren't any worse. This happened to me today.

I took Hunter to his Physical and Occupational therapy appointment at U of M. I walked into the waiting room, checked Hunter in, and sat down in the seat that Hunter and I always sit. We waited to be called back. The place where I normally sit is usually not congested, but today was different. There were two other women sitting there. One woman was alone. The other woman was sitting there with her son. The boy was older than Hunter and I later found out that he was 9 years old. Her son was finishing his Physical Therapy appointment and needed water. As he waited for his water, it didn't take me long to start a conversation with his Mother.

I noticed that the boy was wearing braces. It was the same type of braces that Hunter has. His walker was also beside his chair. I asked the mother, "I'm sorry, I'm just curious - does your son have Cerebral Palsy." I know that it was a pretty bold question, but I was very interested. She replied, "Yes, he does. He was born extremely premature nine years ago. His prematurity has caused him many complications, including cerebral palsy."

As I held Hunter, I forgot that Hunter looks like a normal child at this point. He doesn't wear his braces 24/7. He didn’t’ have them on. He also does not need his oxygen, so for her to offer that much information was very nice.

I responded back to let her know "My son was also born premature. He just got his braces last week and they ordered his walker for him." We talked more. I found out that both Hunter and her son were born at 24 weeks gestation. Then, out of the blue, her nine year old son cut in to our conversation. Please remember from my past blogs that I had a hard time accepting the braces because it made the Cerebral Palsy real. This boy wouldn't have known this. There would’ve been no way he could’ve known how I felt about Hunter's braces. The mom and I spoke about prematurity and our experience in the NICU only. I told her how awesome St. Joseph Mercy Hospital was. Her son was in a different NICU.

So, her angel, my angel, God's angel spoke and this is what he said..."I love my braces. I've had them since I was born. They help my feet and legs. This is my walker (as he pointed to his walker). I love my walker too. I can walk as fast as my friends at school. My friends at school are nice to me and they help me when I need help"

I wanted to walk up to her beautiful little boy and give him a hug because the words that he just said are magical. I've been so worried about Hunter's happiness in the future and how he will see the situation dealt to him. For a brief moment, I saw Hunter - 9 years from now - saying those same exact words. I held back my tears and the boy asked his mom if he could go to the bathroom.

“Of course”, she agreed. She helped him in his walker and I watched as he cruised himself into the bathroom. WOW!

Let's not forget about the other woman who was sitting there. I wanted her included in our conversation too. I asked her if she had a child with cerebral palsy. Her child was not sitting with her, but that's not uncommon for the parents to wait in the waiting room as their child is getting Physical Therapy. Sometimes, the therapist prefers the parents to wait in the waiting room.

She told me a story about her child as she held back her tears. Her child did not have cerebral palsy. Her child was 8 years old. He was born full term and was healthy up to two years ago. He was driving with a relative. The relative was not paying attention and pulled out in front of another car. The boy suffered a spinal cord injury in the accident. Her son will be permanently in a wheelchair. I told the woman to never lose hope and always have faith. I told her that I will pray for her child...and Hunter was called back for his therapy appointment.

I believe that God wanted me to meet that little boy. God wanted me to hear what that little boy had to say. He wanted me to feel at peace with Hunter's condition. Thank you God!

It was a day that reminded me to always appreciate the moment for what it is, to take nothing for granted because things can change within the blink of an eye, and to thank God for all that he has blessed our family with and all the lessons he has taught me.

A Week In Review

On Tuesday, December 1st - Hunter got his new AFO's (Leg Braces). We are slowly supposed to get him used to them by allowing him to wear them one hour a day and increasing the time he has in them. During the first couple weeks, we have to watch for redness around his ankles and feet. We don't want sores to form. I know I am wrong for feeling the way I do about these leg braces, but I can't help to feel that these leg braces are going to hinder his development. They keep his ankles at a 90 degree angle at all times. I try to image my limitations if I had to keep my ankle at a 90 degree angle for a couple hours of the day. It seems heinous to me. In addition, I need to find shoes to fit the AFO's. This also seems like it is going to be complicated. I guess I need to change my attitude towards them before Hunter picks up on this negativity.



Hunter also met with his Occupational Therapist. She feels that over the last week Hunter has went backwards in his development. I had the stomach flu followed by a head cold. I admit that I slacked off on working with him as I recovered. It's amazing how much he can fall backwards in one week. This again elaborates on my last blog about being paranoid to get sick. It affects everything.

On Thursday, Hunter met with his Pulmonologist. He is confident that Hunter can come off of oxygen day and night. Whew Hew. We are on a trial run. I'm confident that Hunter will not need it during wake hours, but his oxygen saturation does dip at night time. As long as he stays above 92%, he will be okay. I can't explain how weird it is to not put a nasal cannula on Hunter before I tuck him in.

Hunter had his first experience at a restaurant tonight. Some guy squeaked his chair on the floor, and Hunter almost jumped out of his high chair. Other than that, this was a big change for me. It is almost indescribable. I have never taken Hunter into a public place and today was the first time. There was a little bit of fear, over protectiveness, joy, and freedom. I asked the hostess for the table furthest away from people and took clorox wipes to wipe the table down. The sound of people coughing and sneezing still echoes and stands out and I look to see how far away we are from the cough, the sneeze, and whatever else resembles sickness and germs. Hunter is not the first micro preemie and I wonder how other parents cope with taking their kids into public places for the first dozen times. Does this sound too familiar to them?





On Friday, Hunter had his Physical Therapy appointment. She really does not believe that Hunter will be able to walk unassisted at first and into early-mid childhood. More than likely, Hunter will need the help of a walker. As he grows and becomes stronger, independent walking may be a possibility. The future is so unclear. She also cleared up the negative attitude I have towards the leg braces. Because of the Cerebral Palsy, Hunter's feet turn inwards. This means that the side of the foot, by the ankle - ligaments, tendons, and muscles would not be growing as they should. The inner part of the foot would be stretched out too much. The braces make the tendons, ligaments, and muscles all grow properly. Hunter will only need to wear them when he is trying to walk or stand. He will not be wearing them as he plays on the floor.

Rattling Cages

Hunter is rattling cages...

After about 20 or so seconds, Hunter gets up on his knees and really rattles things around. The background beeping sound you hear is his Pulse Oximeter. When he is moving around a lot, it will not pick up a correct reading and sound off. We were trying to put him to bed.

Photo and video editing at www.OneTrueMedia.com

There have been many positive things that I have been writing about with Hunter. I have to admit, not every day is positive. And, getting to these positive days is an uphill and sometimes treacherous course.

We have tried for over a year to get Hunter to take one bite of food. During this time frame, we have heard people make uninformed comments to us, like "just feed him" or "give him to us for the weekend, we will have him eating". Are they really thinking that they can make a difference in one weekend? What are they trying to say to us? Are they trying to say that despite taking him to therapy four times a week, and trying to feed him ourselves that we aren’t doing enough? Do they really understand the importance of not force feeding him and the fine line that I have to draw between a positive and negative feeding experience? Those are the people that I have realized are not my support. They have never had a child that has eating difficulties. Please let me clarify that just because a child won’t eat spinach does not mean that have an eating problem. It is a successful day when Hunter takes five bites of pudding or he tries a different texture food. For instance, he tries oatmeal instead of pudding or accepts cold or warm food items instead of pudding being at room temperature.

There are so many things that people take for granted in this world. One of them is the fact that there child is born full term and healthy. When prematurity strikes, it affects an entire lifestyle. When we get sick in our house it flip flops everything. Suddenly, one parent is stuck doing everything while the other parent goes into isolation in a bedroom to recover.

I have also heard people say that I'm being paranoid about our family getting sick. But, I have to just shake my head and know that those people have never walked a day in our shoes, or never watched their child fighting for their life because of an infection or virus.

If Hunter gets sick, not only does it affect his health and puts him in extreme danger, including hospitalizations and intensive care services, but he suffers hardships in his development. It takes away from his strength. If he can't breathe, he can't function - including eating. A simple cold could do this to Hunter. So, I ask myself - how paranoid am I really being about Hunter's health? Hunter already has developmental delays as a result of his lungs, prematurity, and underdeveloped organs, can he afford any other setbacks?

I have learned that people have a hard time accepting what is not normal. But, its the abnormal that makes this world turn. We are all abnormal with our own handicaps. Some handicaps are more noticable than others, but that doesn't change who we are as people. We learn from what is not normal. Hunter has taught me so much about the value of this life and I will forever be grateful to him for that.

As I have said before, prematurity is not something that I planned for. It was something that was given to me to deal with. Regardless of his health or handicap, I love my son more than anything and do the best I can to keep him healthy.

Chocolate Pudding...Yummy!

Hunter is eating....chocolate pudding, that is!

This comes after much effort and fighting to overcome his oral aversion. I think I'm learning the trick to feeding him and getting him to eat. So, my tricks are this...

First, Messy play with his hungry monkey. He responds well to putting food on his toy and allowing "him" to introduce the food to "his" mouth. If "I" try to spoon feed him right away, it scares him and almost too agressive at this point.



Second, Repetition . I feed him one thing over and over again. I make it something good, like chocolate pudding. His occupational therapist told me that it takes 30 times of tasting a flavor for the brain to register it and decide if its good.

Third, Perseverance and Patience. Despite our obstacles, discouraging and difficult days, I'm not giving up. I won't stop. He makes a hundred yucky faces and gags. I still put food on his toy monkey and allow him the messy play. He is now getting familiar and comfortable with chocolate pudding.



Fourth, I make feeding time fun for him. I love chocolate pudding all over the walls and floor. It shows how much effort goes into feeding him and how I will stop at nothing. I have such a mess to clean up when he is done…including him!



Finally, It really helps to have encouragement from others that understand the true meaning of both failure and success.

We still have a long road before the g-tube comes out. In the last couple days, Hunter has been eating chocolate pudding by the spoonful. This is progress and I'm so excited. My next plan of attack is to try different flavors. I plan on slowly introducing different foods, a couple times a day. He will soon try apple sauce, different pudding flavors, oatmeal, and speggatos. I'm not concerned about him eating healthy at this point. He is getting all the vitamins and nutrients from his tube feeds. My goal is to create a positive oral experience. I have run this through the doctors and therapists. They believe this to be a great plan.

They will be doing another swallow study next month on Hunter. The last swallow study showed that he aspirated thin and nectar thick liquids. The aspiration was caused by premature and underdeveloped swallow muscles. As with everything, these muscles develop with time. So, we are going to try again to see if it has improved.

Lessons Learned - Fashion Show Speech

After trying unsuccessfully for two years; my husband and I had given up trying to add to our family. Thankfully God brought my two wonderful step boys into my life when I married my husband. Then I heard those two wonderful words “You’re pregnant” and it was the happiest day of my life. You can’t begin to imagine how lucky I felt. I was on top of the world.

My pregnancy was going perfect with no health issues. Then, in my 21st week of pregnancy, my life changed forever. I started to go into pre-term labor without cause and was ordered to be on strict bed rest. I was told that my baby would not be viable until borderline 23/24 weeks. I had weeks to go before my baby carried a good chance. My dream of having a healthy child was crashing down around me.

My labor started to progress and I was admitted into the hospital at the end of my 22nd week of pregnancy. Dr. Ivacko, a neonatologist, came down to speak to us about having a micro preemie. She referred to it as a long and bumpy road. She went over everything with us. She told us the statistics about babies born at 23/24 weeks compared to later in a pregnancy. She told us what the chances of complications, disabilities, and the facts were terrifying. Looking back, as scary as it sounded, it still held no candle to actually going through it. That day, I could have never imagined how much respect I would have for her today.

My labor progressed to a point that it could not be stopped. On April 1, 2008, Hunter Myles McKeen was born by emergency c-section, at 24 weeks 5 days gestation. Hunter was 1 pound 12 ounces and 12 inches long. Dr. Weiner was the neonatologist on duty that day. He had his hands full, but he got Hunter through his first hours. I will always hold a special place in my heart for Dr. Weiner.

I was in a fog for the first couple weeks. Hunter was in the NICU for 119 days. The odds were against him. His stay was complicated and involved multiple surgeries, and very serious medical complications. He spent the first 2 ½ months of his life on a ventilator and oscillator. Hunter was sent home with an apnea monitor, oxygen, and a feeding tube.

I won’t ever forget where Hunter came from. I won’t forget holding him for the first time. I will not forget how his tiny body fit in the palm of my hand. I won’t forget how much went in to holding Hunter - how the nurses and respiratory therapist worked around many wires and tubes. And, how they had to make sure the baby stayed warm because he was too tiny to maintain body temperature. Initially, I could only hold him for 10 minutes. But, those 10 minutes, 10 days after giving birth to him, was something I’ll never forget. It was at this point I realized how much St. Joseph Mercy Hospital did for my family. They gave us our dream of having a child together.

Hunter is 19 months old now. I wish he was old enough to really understand how proud of him I am. He has such a strong drive. Every day, it is a struggle, a fight, and our journey has truly just begun. It is a struggle to get him to eat, to crawl, and to keep from getting sick. Hunter has an arsenal of medical supplies in his room. He has home oxygen, pulse oxygen monitor, a nebuilzer, nasal cannulas, and feeding supplies. We must stay on top of his medical needs.

Most importantly, we love him. He is so loveable. He is so happy. He amazes me with the way he is unaffected by all that he has gone through. Hunter can light up a room. He is truly an inspiration.

I will not forget the NICU, the sound of the monitors beeping, the smell, and the music that they play while you’re on hold waiting to talk to the nurse. The hardest thing I did was leave Hunter at the end of a day. I cried every night I walked out. I was so scared that Hunter would need me and I wouldn’t be there. I never knew if kissing him was going to be his last kiss.

Most importantly, I will never forget the lessons I learned in the NICU. Hunter had a brilliant respiratory therapist named Sharon. She taught me that in every negative situation, I can always find positives. At that time, my son was very sick and I could never understand what she was talking about. All day, her words echoed in my head. And, I tried to make sense of what was positive in this situation. Later that night – I thought about it and she was right. I knew that I had to start looking for my positives. I started with the easiest one: My son was still alive. I found many positives that night, including knowing her. I don’t know if she knows it, but that simple statement made a huge impact on me and the hardest time of my life. I still have my hard days and her advice still helps me to get through. I learned how to put my faith and trust in God. Miracle after Miracle, God got us through it.

Through this journey I have been fortunate and blessed to have met some of the finest people I will ever meet in my life, the NICU staff. They taught to embrace the little things in life, never take one minute or one breathe for granted. I learned that I have used a million different reasons to have a bad day, but never found one million reasons for a good day. At the end of the day when my kids are tucked into bed, and me and my husband can hear them peacefully sleeping, – it doesn’t matter that I was late for work, I got a flat tire, had bad hair day; I have my family safely under one roof, and that is what I have to be thankful for. In the end, I have my son, my family, my friends, my marriage and relationship with God is stronger; I’m truly the luckiest woman alive.

Thank you for coming tonight and supporting the St. Joseph Mercy Hospital Neonatal Intensive Care Unit and the Family Advisory Board.

Hard at work with PT/OT

First, I want to say how proud I am of Hunter and all his accomplishments. He is amazing. He is working so hard in therapy and at home with Mommy. Wow, he has come such a long ways since June...



My week started with a call from Hunter's Pediatrician. I highly respect Hunter's Pediatrician. I have to say that we are truly lucky to have such a wonderful doctor. I call on his Pediatrician for advice and I really take what he says to heart. His Pediatrician is recommending that I move forward with the Botox treatments. He thinks that Hunter could benefit greatly from them. It’s very rare to see adverse affects. After having a long conversation with him, I have decided to move forward and schedule Hunter to have the Botox treatments.

Hunter and his Great Grandmother were working together. Hunter started to pick up the reciprocal motion of walking (one foot in front of the other) He was taking baby steps with his Great Grandma and I was able to catch it on camera. This will be a picture I treasure forever...



His Physical Therapist was very happy to see this. She is recommending a walker for Hunter. It would be a nice, fancy, medical walker. She will be submitting the letter of medical necessity to the insurance company. The walker would help him build strength in his hips, trunk, and legs that the Cerebral Palsy is affecting. It would also help him learn the reciprocal motion of walking.

He also had an appointment to get fitted for his feet braces. This appointment was hard for me. I drove to this appointment with knots in my stomach. I have known for awhile now that Hunter has Cerebral Palsy, but this appointment felt like a big reality check for me. It is the first time that he needs a special device as a result of the CP. This makes me sad. I feel sad that the CP has affected him enough that he needs braces. I feel helpless that I can't do anything about it. I can't make it better for him. I would love too, but I can't. And, that sucks! On the other side of the spectrum, I'm thankful. I'm thankful that he is alive. I'm thankful knowing that the situation could be worse and it’s not. I'm thankful that he's getting stronger. Once again, positive thinking got me through this appointment. He got fitted for his braces. He didn't like it one bit. They made a cast mold to fit around his feet and ankles. They had to hold his foot at a 90 degree angle until the cast mold dried. He screamed and cried. I just wanted to pick him up and hold him. After it was done, I did pick him up. He wrapped his arms around my neck and was holding on for his life. It wasn't anything that would hurt him. I just think he didn't understand what they were doing to him and it scared him.



In three weeks (give or take), we should have the braces back.

To Botox or Not to Botox

Hunter’s physical therapists and rehabilitation doctor’s are highly recommending botox treatments for the cerebral palsy in Hunter’s legs. Hunter has mild to moderate spastic diplegia. This means that he has increased muscle tone in the lower part of his body. The upper body is not affected. In Hunter’s case, his right leg is more affected than the left. Although, the left still has some increased muscle tone.

The botox would be injected in the muscle. This would cause the muscle to relax. Botox has been done on other patients with cerebral palsy. In many cases, it has helped.

Hunter’s increased muscle tone has a developmental impact on his ability to sit independently, walk, stand, and crawl. If the botox treatments are done, there is a high probability that the muscles will loosen up and make the developmental milestones easier for him to reach. It sounds great, doesn’t it? I was so excited. I was ready to dial the number and schedule Hunter to have his first botox treatment. Then, a thought ran through my mind. I realized that I heard about the benefits, but nobody has explained the risk factors or side effects to me. I decided to Google it.

I need to explain what Google means to me. After Hunter was born, all these frightening diagnoses were being thrown at us. Hunter had Patent ductus arteriosus, intraventricular hemorrhage, Necrotizing Enterocolitis, Rentinopathy of Prematurity, Bronchopulmonary Disease and Pulmonary Hypertension…and it would’ve been so easy to read up on each one of these things. I discovered quickly not to do that. I found that the internet can give the worst case scenario. I made it a rule: never Google Hunter’s diagnosis unless I’ve been given a reputable website.

What do I do now? I Google: Botox treatments.

Apparently, I have not learned my lesson and this is what I found out:

1.) Botox is not approved by the FDA for the use in Cerebral Palsy patients and for the use in children and babies.

2.) Botox is made of the same organism that causes food poisoning

3.) If the Botox seeps out of the muscle and into the body, it can cause life threatening consequences. Also, if the botox is not injected correctly, gets into the body, it can cause a fatal reaction.

4.) I read somewhere that botox can cause respiratory issues. (the last thing he needs)

I know that they have to document every case of adverse effects. I can't gamble with my son's life even if the chances are slim. I’m very torn on what to do. I’m going to talk to Hunter’s Pediatrician. I have a lot of unanswered questions before I make a final decision.

On a lighter side, my house has been taken over by toys and there is no adults that live here anymore.

Never wake a sleeping baby

...after all, he is finally sleeping without oxygen. I got so excited. I took a picture of him sleeping without the nasal cannula.



I had to take a picture of his pulse oximeter too. His oxygen saturation was 98%. His heart rate was 75.

Fall Pictures

Saturday, October 17, 2009

I’ve been meaning to write for the last couple days. There has been so much that has happened since I last wrote that I don’t know where to begin. All I can think about is how proud I am of Hunter. He has come such a long way in the last couple months. I wish there was a way that I could express to him how proud I am and make him understand.

Hunter has been going at physical and occupational therapy pretty hard in the last couple weeks. It is making a huge difference in development. Hunter is crawling, playing, putting balls into baskets and taking them out. He has been so interactive and fun. His attitude is changing and he seems to like his new found independence. He has developed a screaming habit. He gets excited and screams. It is cute for the first hour! In addition to his physical therapy, I take him to an additional physical therapy short appointment. At this appointment, he does a baby treadmill. His physical therapist hooks him to a harness and makes him walk. It helps him to learn the one foot in front of the other concept. It also exercises all those muscles in his legs that are affected by the Cerebral Palsy. His hamstrings seem to be his biggest problem. But, he still has range of motion. Hunter is at PT and OT four times a week.

Hunter is doing very positive things with his legs. The future is still unknown. The more he builds the muscles in his legs, the brighter the future is getting for him. Again, Cerebral Palsy has such a wide spectrum of severity. Some children walk on their tip toes and this is due to muscle tone. This causes walking difficulty for these children. Hunter is able to place his feet flat on the ground. His Physical Therapist saw him this week. When she came over and started to work with him, tears filled her eyes. I looked over and she was crying. She couldn’t believe his turn around. In his home therapy session, Hunter was STANDING against the couch, playing with a toy that was on a couch cushion.

Hunter has a pulmonary appointment coming up. I’m really excited for this appointment. Hunter has been falling asleep and not needing the oxygen. His oxygen saturation stays in the upper 90’s while sleeping. Lately, it has not fallen below 95%. He has been off oxygen during the day (for the most part) for awhile now. He needed it while he slept and that was a hurdle that was hard to cross for him. He is doing it now! I almost don’t want to get my hopes up yet, so I’m not going to jinx him and say any more about this.

We have had a bout with illness and Hunter is taking Tamiflu (anti-viral medication). It has not affected him too severely or it was caught early and the Tamiflu stopped it before it became serious.

I am in the process of converting his Caring Bridge journal over to Blogger. In Blogger, I’m removing the password, and his journal will be public. I have thought about this and whether I wanted such a personal thing to be made public. Then, I remember back to when I was pregnant, on bed rest, knowing that I was in preterm labor, and seeking information on what it would be like to have a micro preemie. If Hunter’s journal, could give someone hope, support, and encouragement then it is completely worth it. If having Hunter’s journal public starts causing problems and I start getting weird people posting weird stuff, I can put a password on it. Blogger has many benefits that Caring Bridge doesn’t have. First, I can post current pictures with my journal entries. I can also post videos. I have some really cute videos of him that I haven’t let anyone see yet. I will send out an email when I’m finished. It will include the web address to Hunter’s page. After his page is done, I will not be sending Hunter updates by email anymore. His journal will be easily accessible.

I also wanted to remind everyone that the Fashion Show for St. Joseph Mercy Hospital is on November 12th. Tickets are $25.00, this includes a pasta bar. All profits go to St. Joseph Mercy Hospital. I am a speaker and have been busy writing, preparing, and practicing my speech. I’m SOOOO nervous! I already have stage fright! I can’t believe that I fit Hunter’s story into a 10 minute speech. That was a challenge. Hunter will be a model at the Fashion show. If you are interested, please let me know.