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.