Sunday, December 27, 2009

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.


Wednesday, December 23, 2009

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!



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!!!

Friday, December 11, 2009

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.

Tuesday, December 1, 2009

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.