Saturday, September 26, 2015

Happy Birthday David- He would have been 32 this year!

This has been a long time coming!  A story that needs to be told, a life that was given and taken sooner than later. 

On September 29, 1983 at 1:35 a.m. David entered the world.  He shared the same birthday as his father and his great gramma. 

David's life story is difficult and a blessing.  He was a joy and a learning curve.  You see, David was multi-handicapped.  He was a drug baby.  Not from me, but his father.  Did you know Marijuana changes your chromosomes?  It does. It also can be from the dad, after all the dad carries the see.  David went to Dr. Opitz a renown genetics doctor.  David's were not the same as ours, he had an extra 1/2. 

So, here is the story that begs to be told because so many do not know. 

I was 20 years old, the mom of a 4 month old and pregnant again.  They would be 13 mo. apart and are.  During my pregnancy I had morning sickness all the time.  Sun Tea was the worst, then brushing my teeth created major yuks, but I had to brush.  As the pregnancy progressed, I started having labor pains at 5 mo. along and spent the night in the hospital to stop them and was told to be on bed rest.  Yeah right, having a 9 mo. old at home who was walking already, yeah that's going to happen. 
We walked miles every day, we lived at the end of a street and boredom set in, so we walked, brother in the stroller and big old mom pushing.  Have I ever listened?  Not really. Mother in law kept saying you should have an abortion, you should lose this baby, you should.... , I ignored her.

So, Sept. 29th comes and my labor started at 6 p.m., his dad went bowling and I stayed home.  The contractions began, and then they began to increase.  His dad got home at 10 and by 11 we were heading out to my mom's to take his brother to gramma's.  We made it to the hospital at 12 midnight.

To say they were thrilled was us would be lying.  They did not like that I was dilated at 5 and they gave me a check over and within 1 1/2 hours I was delivering.  The doctor must have been mad because he broke David's collar bone coming out.  We had no insurance, so that may have been part of it too. 

This was the beginning of our crazy journey.  David not only had a broken collar bone, he had projectile vomiting.  I mean, it came out and hit the wall across the room!  We started him on cereal that day.  He was 2 days old.  They did x-rays and found nothing.  They sent us home 5 days later, but the whole time he was in the hospital he was placed in a room by himself, left basically to die.  I wanted him in my room.  I wanted to take him home.  I was tired of the run around already.

We were on WIC (Women, Infants, Children) and went in for our check up at 6 weeks.  They did all the measurements and David's head began to close early.  He also wasn't growing like he should.  So, this began the trips to doctors that lasted forever it seemed.  David had surgery at 8 weeks old called Craniostenentosis.  They lifted his face off his skull, cut a 1" wide strip from front to pack, and 1/2" from ear to ear.  Then put his face back on and stitched him up. 

"Craniostenosis may be known by its more common name craniosynostosis. It is a condition that affects fetuses or very young babies. As most people know, babies’ heads are soft and malleable so that they can pass through the birth canal and accommodate the growing brain. This is accomplished with a fibrous material called sutures in between each of the five bony plates on the head. These sutures aren’t supposed to fully close for a couple of years. When they close early, creating misshapen head and other symptoms, this is called craniostenosis.
Sometimes craniostenosis happens in utero, and at other times it may happen in the early stages of an infant’s life. The condition may be genetic, but that isn’t always the case. Other things like use of thyroid medication, the medication methotrexate, or maternal smoking could play a role too.
Again, the sutures between the bony plates are necessary because of the way the brain grows at a rapid rate during the first few years of life. Craniostenosis thus may not only affect head shape, but it can affect brain function if the brain presses against an unforgiving surface. In addition to head misshapenness and depending on how may sutures have started to close, some children have impaired function, developmental delays, seizures, sleep apnea, impact on sight ability, constant vomiting, and irritability (usually due to strong headaches).
It’s not always possible to diagnose craniostenosis at birth. Most babies who are born vaginally can have peculiarities in head shape at first, particularly if they spent some time in the birth canal. People shouldn’t panic if a baby is born with a cone head or any other bumps or unusual shapes. However, if after a few weeks, the baby hasn’t regained a round infant head, this fact can be mentioned to a doctor. Moreover, craniostenosis doesn’t always happen before or at birth, and might occur several months down the line.
Should an infant have craniostenosis, common methods for addressing the problem are to perform surgery. Doctors prefer to do this early, and many babies might have surgery within a month or two of diagnosis. Usually doctors that perform these surgeries are pediatric neurosurgeons or craniofacial surgeons, and some families may need to travel elsewhere to a larger (tertiary) hospital to access these specialists.
Children will need monitoring after surgery, and sometimes surgeons suggest they use a helmet to protect their more fragile heads. More than one surgery might be needed if another suture starts to close prematurely. However, many children need only one, and may do very well after recovery."

David lost all his hearing during this surgery.  He also wasn't growing.  He was placed on "Failure to Thrive" and the team of doctors called DFS and they began to visit, because they believed I was doing something wrong, yeah right!  Also we began a bunch of therapy appts.  Finally at 7 mo. old they put in a feeding tube for 7 mo.  This was awesome, because he began to gain some weight and move around.  We had Deanna coming in from a HOME therapy that worked with him every week.  We began to turn around or so we thought. 

Then teething came!  Every tooth coming in caused pneumonia and ear infections and put him into the hospital along with major grand mal seizures.  For the first 2 1/2 years of his life, he spent 3 weeks out of every month in the hospital.  His brother at age 2 knew huge medical words and knew the hospital by heart. 

Then, it happened. 

We attended a church on Wed. night for Awana with a friend, and we were walking though the basement talking and a group of young adults were praying and invited us in.  They asked about David and I told them a bit. They prayed over David.  They fought a spiritual battle for this child's life.  A sea of arms and hands were touching him, praying in God's heavenly language and wow!  Healing began.  Jesus healed this boy.  His hearing began to come back.

I was pregnant with the 3rd baby and David was healed.  No kidding!  For 4 years, David no longer had seizures, high fevers, cold, ear infection, nothing!  David was healed and Jesus healed him.

And then it happened one day at a visit to my mom's which we went to all the time.  David was eating gummy worms, began to choke, turning blue and a long grand mal seizure began.  We called the ambulance, I knew the crew and I sat on top of David telling him it was not his time to leave me, I begged him not to leave, I knew time was short, after all he wasn't suppose to live past two and he was 6 1/2. 

We got to the hospital and they did the x-rays and it showed his brain stem fluid was all on one side and he would be wheel chair bound soon and for the rest of his life.  This was a huge blow, David didn't walk until he was almost 3.  He would start and get sick and forget how. 

He spent the night in the hospital that night, came home and went to school the next day.  David was always ready to go somewhere, anywhere.  David passed all his goals at school.  His IEP was for the whole year and within one day David passed every goal!  That night was to be his last. 

He had a grand mal seizure, a fever of 105 + and vomited and choked while he was in bed.  I checked on him at 9 p.m. and he was gone.  I tried to do CPR until the ambulance came and we got him to the hospital, they pronounced him and the doctor, Dr. Hines, came in and was teary eyed.  This doctor had followed us to different places and to find out how the appts went. 

David's life ended on earth January 17, 1990, but his life in heaven started.  I know because I saw him and Jesus together in heaven. 

Not a day goes by that he is not in our thoughts and wonder how he would look, how tall he would be, if we could have prayed through this and be well.   David changed so many lives while he was here with us.  He changed our hearts and minds, he was such a blessing.  At his funeral the church was packed.  I remember reading a note later and years later after the funeral was over and grief had set in it's ugliness, a woman whom I never met saw us in the store and wrote of a story of seeing us in store at Christmas picking out gifts.  I would let David play with them and the one he really liked was his present.  That story will always be with me because people do watch your interactions. 

So, Happy Earthly Birthday David.  We love you and miss you a ton. 

Trust and VIPKID travels!

Update:::::4/30/2019 -530 pm!! Now four shocks have to be replaced!!!!!! Uhhhhhggggghhhhh--ouch!  The workers came over at about 2:20 and sa...