A Journey of Hope and Faith

OK, it has been one month since my wonderful daughter and Melaney's loving sister, Tiffany, created this beautiful blog for us. I have started numerous times to write my first post but I am having a difficult time figuring out just what I want to say. I guess one of the most important things I want everyone to know is that this is a journey of hope and faith. A celebration of life as a gift from God. I want to give insights into our daily walk with the Lord as we do His will to obtain our miracle for Mel. This will be our place to rejoice in the little successes and perhaps a place to vent our frustrations at the obstacles placed in our path. I wish to give hope to others who may be on a similar journey. I do not want to dwell too much on the past for that is a place of grief, guilt, mourning and so much pain. However, for those of you who do not know us, or who know little of our story, I will recall a little about how we got to where we are today.

On June 23, 2007 our family's life was forever changed and I began a journey that no mom would ever want to find herself on. My precious Melaney ended up in the intensive care unit of Methodist Hospital following some serious unexpected medical issues that lead to seizures and a cardiac arrest on the way to the emergency room. What was to follow was a nightmare roller coaster ride of hope and despair. During her 6 week stay she was in a deep coma and had no response even to deep pain. Although she was on a respirator, she had always initiated breathing on her own. Our family was at her bedside 24 hours a day. At one point she had such severe brain swelling that we were told she had only 48 to 72 hours to live. We began to prepare to say our goodbyes. Well, needless to say, God had other plans for Mel. He was not ready to take her from us, for he had greater plans for her. Plans which continue to unfold ever so slowly. Seventy two hours passed, then a week, then two, and so on. Our Mel was still with us. She then began to open her eyes for brief periods and I knew our Mel was still in there. Although she could not move or communicate with us, this was our first flicker of hope. The spark of life, of spirit, that God had given her when she was conceived, was still there. Perhaps this spirit was now meant to take a different course, to relate and to touch her family and the world in a totally different way, to lead all of us to understand what a true commitment to valuing life in all its stages is really about. The doctors had long before given up on her and told us that we needed to consider "long term care". It seems so many wanted nothing to do with the situation unless it could have a perfect outcome. We have all come to realize that there is indeed a difference in God's and mankind's definitions of "perfect" And I told them without any hesitation that the only place Mel was going was home with the family that loves her. They assured me that I had no idea what I was in for............well, they didn't know me very well!! I told them in no uncertain terms that I had been a nurse for 36 years and there was no one who would love and care for my precious Melaney like her mother. To prepare her to go home she was taken to surgery and had a feeding tube and a tracheostomy tube put in place. Thus began the task of finding all of the equipment needed to care for her. This all had to be in place before we could get her out of the hospital. And a task it was, I have learned how vital it is for someone to be an advocate for getting all the things someone who is so dependent needs. Those providing these things try to cut corners wherever possible and we had to be there at every turn to see we got the best possible bed, mattress, feeding pump, pulse and oxygen monitor and so on.

August 2, 2007. We are home at last! Praise God, this in itself is a miracle! Now begins a 24 hour a day labor of love. We moved Mel into the office downstairs and I moved into the recliner in the corner of the office. She required around the clock care so there was minimal sleep but it is truly amazing the strength that you can find somewhere deep inside at times like this. Her dad and sisters are lending a hand whenever they can and she is surrounded by love 24-7. Mel continues to sleep most of the time but does begin to have longer awake periods. She also begins to respond to pain. Definitely does not like to have her trach suctioned. We have services coming into our home for physical, occupational and speech therapy.

Home at last. Our Journey begins!

Miss Chloe Choate takes a turn standing guard!


October 16, 2007. Mel takes her first venture outdoors since coming home. We had a mini celebration for her sister Mary's 15th birthday.


December 3, 2007. A huge day for Mel. She was confirmed in the Catholic faith today. By an unbelievable set of circumstances Cardinal DiNardo actually came to our home to perform this beautiful ceremony. God certainly is working in our lives in so many unexpected ways.

What a special blessing this day was for Melaney and her whole family! A special thanks goes out to Father Drew Wood, our Pastor at St. Laurence Parish, for making this day possible. Thank God for unexpected blessings in our darkest times.

December 2007 (cont.) It very quickly became obvious to me that the therapies Mel was receiving at home were simply not adequate. So began the quest to find outside services. Then I realized....How am I going to get her there???? Well......it is called a mini van customized with a wheelchair ramp! We purchased it the middle of December. The search for care was again frustrating because Mel was in that grey area, at 17 she was too old for most pediatric centers but not yet fully adult and there are limited services for brain injured adults out there. So I made appointments and visited some centers. The first one we tried was a disaster because most of the patients were elderly. Then we found the pediatric therapy center.....and I admit, I am not too proud to beg when it comes to getting what Mel needs. Nancy, one of the owners, agreed to take her for speech and give it a try. After a few weeks, we got to meet Irma the occupational therapist. Melaney touched her heart and she agreed to take her as a patient. Unfortunately, they did not have the equipment needed at their center to provide physical therapy for her so we had to continue our search. Thus we ended up at the neurodevelopmental therapy center for physical therapy. Again, kind people were touched by Melaney's story and, I must admit, by my ability to not take "no" for an answer. That is a very important message I can give anyone in any situation similar to ours. If your heart tells you that you know something is right for your loved one and it is something they need............never take no for an answer! It may take a lot more effort and your may have to work your way around people to get to the place you want to be but there is always a way, always one more person to get involved to help, to listen. God has put some wonderful people in Mel's life. It took a lot of prayer and perseverance, however. Now we had our therapists all in place, had our van, Mel had her wheelchair, and we were off, three days a week for three therapies each day.

January, 2008. It has become obvious that Melaney not longer needs her trach. It is causing her more discomfort and is a source for infection to enter her lungs. It was done initially because she had swelling of her airway due to being intubated and on a respirator for 6 weeks. Tiffany's wonderful boss, an ENT doc, came to our house and looked at Mel's airway with a lighted scope and reassured us that the swelling was gone and we should consider taking her trach tube out. Welllllllllll.....I know I am a nurse and I trust Amy but after what we had been through I was not quite ready to take such a giant step. As with all things we have done, baby steps are sometimes better. So we decided to "plug" her trach tube with a little cap that she could breath in thru but would have to exhale out the normal way thru her nose. We continue to go to therapy 3 times a week. The spasticity that had developed due to Mel's brain injury is slowly improving with medication and therapy. She is not as stiff as she was and is beginning to sit more comfortably in her wheelchair.

February 2008. Another prayer answered!! It is a stormy night February 7th. The power goes off which is a disaster for Melaney. A lot of her equipment, including her mattress which is power inflated, does not work when the power goes off. I run into her room with my flashlight to find her sinking into her rapidly deflating mattress...........but wait........what is that expression I see on her face? I almost couldn't believe my eyes. There she was, eyes wide open, with a beautiful, left sided, Elvis smile! She actually was smiling!!!! She found this whole situation amusing. The right side of her body was even more affected than her left so she had this lopsided smile, but it was the most beautiful smile I had ever seen. Praise God! I had been praying for some sign, some response that she was aware of her surroundings! Melaney's 18th birthday was on the 12th. This was her birthday gift to us!

March-May 2008. Our lives are a whirlwind of 24hour care and therapy three days a week. We are fortunate that Melaney has had only one bout of respiratory infection this year that was easily treated with antibiotics. Her therapies are focusing on keeping her flexible, getting properly fitting splints for her hands and feet to prevent contractures, and to begin to get her to swallow efficiently so that someday we can take out her feeding tube. Mel's dad, Geoff, got tired of seeing me try to sleep in the recliner so he insisted that we buy a bed and put it in the living room next to the office so I could be near Mel but at least try to catch a little sleep. This we did in April and at least I can get horizontal...........he really is concerned about both of us. I am blessed to have such a concerned, supportive husband of 34 years.

June 23, 2008. I am astounded at how fast time passes. Yes, it had been a year now. This was a day of reflection and of course sadness. However, we decided that it was more importrantly one of celebration because of the fact that Melaney was with us and had made much progress during the last year. The entire family and Father Drew gathered at our home to enjoy a meal, prayer and reflection on how we had all grown stronger over the last 12 months.

Melaney is spending more time awake now.

She enjoys being up in the lounge chair and spending time with the family and her friend Miss Charlee Choate.

July, 2008. Melaney continues to become more awake and aware. Her smile is more frequent now and she is trying to laugh. She responds to me with this beautiful smile when I enter her room in the morning to start her care. We removed her tracheostomy tube on July 1st. This is a huge step. She still has the hole where the tube was but we are hoping that it will close on it's own in a few weeks. This will greatly decrease the chances of infection and will improve her ability to swallow. We are now progressing to standing in the "stander" at physical therapy. This is a chair like device that we sit her on, buckle her in and the chair raises her into a standing position, supporting her knees chest and back. It is very important for her to start weight bearing to keep her knees, hips and all her organs in good condition.

This is Melaney and her first Physical Therapist, Rachael. One of Mel's first times in the stander. Unfortunately, Rachael left us to go be a director of Physical Therapy at Texas Children's Hospital. She was replaced by Pat who is still a member of Mel's FANTASTIC FOUR! August, 2008. What a great family vacation. Our first time back to the beach. We rented a house right on the beach in Destin, Fl. Mel loved being outside on the porch watching the surf and seagulls. As you can tell, we have covered her trach opening with a dresssing. It is not closing as quickly as we would like.


September, 2008. Well, sometimes mother nature needs a little assistance. When Mel's ENT doc examined her, it was obvious that the tiny opening that was left simply would not close on its own. So we decided to have it sutured shut. What a big difference this has made in her life. Not nearly as much coughing and No More Suctioning..........!!!

October-December, 2008. Melaney is growing stronger and is now able to support her weight on her own two feet with the help of her physical therapist, Pat. We call this "dancing with Pat" because Pat helps support Mel and sways her from side to side and front to back to get her used to feeling the weight shift on her hips, knees and feet. (see photo with Pat is side bar) Melaney is swallowing better since her trach is now closed and has been able to start taking tiny tastes of things like pudding, yogurt, ice cream, sorbet etc. These are only very small amounts but it is huge in light of the fact that prior to this she would cough and choke on anything we put in her mouth. This must feel amazing to someone who has gone over a year without being able to eat or drink anything.

January, 2009. This month represented a big step for me. I got away for a week for the first time since Mel's event. My wonderful daughters Tiffany, Kimberly (her husband Robert) and Carly worked out a schedule to stay here with Melaney and Mary so that I could go to Maui with Geoff. He had a meeting and we were able to add on a couple of days. It was very therapeutic although I admit I did call home quite often. I knew that Mel could not be in better hands. I spent most of my time off the beaten path with my trusty Nikon. This is an interest Mel and I shared so it was a great time to reflect on the many road trips she and I used to take together, just to shoot pictures of the wild flowers or the local color of a very small historic town somewhere down a country road.

A sampling of my hundreds of Maui Memories! Hope you enjoy!

Photography that I hope would make Melaney proud!!!! :-)

March, 2009. Melaney awakens and responsed a little more each day. She laughs outloud at our stupid jokes and funny movies. She follows with her eyes as we move about the room. She will start laughing when she hears one of her sisters come in the house. This is her way of saying "come talk to me". The valleys of that roller coaster are not quite as deep these days. The peaks are more glorious. We give thanks and rejoice with every glimmer of hope that Mel surprises us with.

I hope I have made our situation a little more familiar for you and I really look forward to sharing our progress in the months to come.


Remember to "EXPECT A MIRACLE'