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

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.