Angel Blake's Story

September 21, 1998-March 2, 2000

My name is Denise Bockus. My husband Brian and I became legal guardians of a precious baby boy named Blake.  I met Blake on his second day of life in the neonatal intensive care where I work.  His mother was a teenager who had made the decision to give him up. She was a very sweet girl and after spending time with him she decided she wanted to remain part of his life.  She knew she couldn't handle the responsibility that would go along with a baby who had so many problems so she looked to place him in a medical foster home.

I fell in love with him right away and made the decision to take him home.   Blake was given the diagnosis of Alobar Holoprosencephaly during a 28 week sonogram. and it was confirmed by a CT scan when he was 2 days old.  The doctors told us he would only live a few days to maybe a couple of months and that he would develop apnea and seizures.  Well as you all know, the doctors once again were wrong.  Blake is 13 months old now.  He was evaluated in June at the Carter Center at the Texas Scottish Rite Hospital.  They were wonderful and free!  Well they told us that his diagnosis was questionable and recommended a MRI be done.  We had that done in August and found out they were right.  Only we were hoping for a diagnosis of Semi-Lobar HPE (Holoprosencephaly) and instead were told he had Hydranencephaly.  His neurologist showed me what it looked like and I was amazed at the fact that he had "no" cerebrum.  The neurologist said he was amazed had had never seen a baby without any cerebral tissue who was able to function as well as Blake can.  It was then I realized what a true little miracle I had.  We were saddened though that he would never progress beyond infancy.

I remember saying once a couple years ago to a friend, I would love to have another baby, and would like a boy.  I just wish it would stay a baby forever.   Well, be careful what you wish for.  He has many endocrine problems, Diabetes Insipidus, hypothyroid, hypopituitary and is cortically blind.  He takes Synthroid, DDAVP, Cortef, Tranxene, Clonididne and Propulsid and Prevacid for GI reflux.

In the beginning he cried all the time, but once all of his problems were diagnosed and he was started on his meds. he was very content and happy.  He has always been able to bottle feed well.  He gets frequent gas and constipation and we use glycerin suppositories every evening and give him liquid stool softeners.  Gas X liquid works well for him.  He is on Progestimil formula.  He had temperature problems also until we started his medications.  I think the hypothyroid was the cause.  He only gets cold now if he isn't feeling well because of a cold.  He can have a temp as high as 106 when his brain  tem is stressed by a virus which is what we're dealing with right now.  He has only been hospitalized one time when we was 7 weeks.  This past Sunday on Halloween was only the second tome he has had a fever. Today I have had to NG tube feed him all day and suction his nose allot.  His sodium was 168 which is the highest so far.  He is a hospice patient and always has been.  They have been so wonderful to us.  They make sure his meds are delivered and that I have any supplies I might need.  A nurse visits once every other week to weight him and check on us.  He now weighs 25 lbs.  They hooked us up with an order of Catholic sisters who are all nurses and provide respite care to terminally ill patients 6 days a week, 10 hours day or night.  We used them 4 nights a week for the first  4 months and then when it appeared he wasn't going anywhere they had to move on to those who needed them.  It's a comfort knowing that when the time comes, unless it's unexpected that they will be there.  We are thinking of getting discharged from hospice, but I'm not sure yet.  We plan to adopt him if the Lord lets him stay till he's 3.  That's when he will go into a different program here in Kansas.  Right now the state is paying me as an employee of a home health agency to provide 32 hours a week of nursing care for him.  It's weird doing paper work on him, but well worth it for me to only work as needed at the hospital and stay home full time with him.  If we adopted him I could not do this, and the only reason this is possible is because he is a Medicaid baby and I am not related to him, so to speak. 

I have started a local support group for families with children who have brain disorders and we have met once.  It went really well and I look forward to our next meeting.  I also am hoping to create a seminar with info from Dr Shewmons' research and using a video of several children with hydranencephaly to start educating physicians about our children who defy the odds and hopefully bring about a change in the attitudes of so many.  Any help in this area would be greatly appreciated.  I'm hoping to have this ready sometime in the Spring of 2000.  If you are interested in being part of the video, please let me know.  The children's names do not have to be revealed.

Well in closing let me say, I am so glad I found the Rays of Sunshine web site.  It has provided me with a wealth of information and support.  All the families I hear about are so special and the stories really touch my heart.  Our children really are gifts from God and I cherish every day I have with Blake.  His smile and laugh brighten every day.  He touches  everyone he meets in some way.   He has brought me and my family back to god and Church.  My daughters; Megan 12 and Kari 10 have grown to love him and have a greater appreciation for life because of him.  There are many struggles with these children, but they only make the good days that much better.  Having a child like Blake was never even a thought of mine and now I can't imagine life without him.  Thanks for all the words of inspiration and hope.

August 2000:

Blake began having problems tolerating his feedings around Christmas 1999. He would have terrible gas pains, and his constipation problems got worse. Until this time he really hadn't been sick with anything except his occasional hormone deficiency problems. In January we took him in for a G.I. workup. They found his gastrointestinal system was shutting down as food would not mover through the way it was supposed to. We fed him small amounts of pedialyte slowly using an NG tube the last 6 weeks.

During this time he was so content, and gave more smiles and giggles than ever. I think it's because eating made him miserable. He didn't look or act sick until the last four days. We stayed with him constantly and used a monitor while we were sleeping the last few days. On March second, I had planned a meeting for 10 am with my Pastor and Blake's birthmom. At 8:30 that morning I knew his time was running out. I called my husband home and had my hospice nurse come out. Everyone was there by 10 am. My hospice nurse offered to hold him while we had our meeting. I said "no i want to keep him." At 11 am while sitting in my living room, surrounded by everyone who loved him, he took his last breath. It was very peaceful.  The Pastor said a prayer as he was making his journey Home. That day was probably the hardest day of my life so far, but if I had to plan how his last day would have been, I couldn't have planned it better. So now he is our little guardian angel. He taught us more about life and love in 17 months than most people will learn in a lifetime. We were truly blessed. We miss him terribly and think about his big blue eyes everyday, but we take comfort in knowing that he is happy and whole at Home with his Heavenly Father.

Denise Bockus and family




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