Sunday, June 12, 2011

"Bee"-ography Monday

This weeks "Bee"-ography is about Bee ^Joshua^. It was written by his mom, ^Diane^. There is a special addition about ^Diane^ written by Bee Chrissy's mom, Angela.

 January 22, 1999-March 2, 2005

Joshua came to live with us at 18 days old. I received a phone call from Social Services asking if I would take a baby that was with emergency foster parents. They told me he had severe neurological problems and that his life expectancy was only 3 months. I was told we could go and see him at his foster parents' home. When we saw him it was just love at first sight. I wanted to take him home with me straight way. Joshua finally came to us on the 9th February 1999. 

Joshua has had several problems since he came to us. The first being in March 99. He started continually crying and didn't sleep for three days and nights. I rang the hospital to see his consultant who in turn referred us to another hospital. Once there it was determined that his head size had increased rapidly. The surgeon came to see us and said they would take him to theatre to fit a shunt to help drain his CSF. This to me was like someone speaking a foreign language. All I knew was he was going to have an operation. So it was frantic trying to find out all about shunts, and CSF. Then the surgeon came back and said he was not going to operate but aspirate the fluid from  his head. Which they did with good result. Since then Joshua's head has grown in proportion to his body and me monitor the growth very closely. 

At this time Joshua stopped sucking so would not take his feeds, so he had his first NG tube which he tolerated pretty well. Alfie was also diagnosed with Diabetes Insipidus at this time and given DDAVP. On the 14th of August 99 Joshua woke up quite happy for Joshua. We noticed at lunch time that he had cut his top front tooth. Then around 4 o'clock that afternoon he started having seizures, one after the other. We took him to the hospital where they tried four different medications before the seizures stopped. By this time it was after midnight. The nurse on duty told us to go home and have a rest and collect our things as Joshua would probably sleep right through the night. We had only been home a couple of hours when we received a call saying the seizures had restarted and the drug they had given him (Phenytoin) could cause cardiac arrest so not to be alarmed when we got back to the ward as he was on a heart monitor. We set off straight back to the hospital and were told on arrival Joshua did not respond to the Phenytoin and was in PICU. When we arrived at PICU he had wires and drips coming out from all over and had been given Phenobarbitone. (Thankfully the seizures were now under control.) We were then transferred back on to the ward but Joshua restarted having seizures again. Back to PICU. After 3 days we were back on the ward and allowed to come home after 3 weeks. We had another stay in hospital in September with seizures. They changed his medication and since then we have not had any real problem with seizures.  Joshua had his Gastrostomy in November 99. The surgeon came to see us and told us to expect Joshua to go to PICU after his operation. Owing to his condition he may take longer to come round and would start having seizures. We would be in hospital at least a week to 10 days. Joshua went to theartre at 9:30 am on Friday 12 November. He was back on the ward by 10:15 am with no problems. We came home on Monday 15th November as he had done so well. We have only had one slight infection around his gastrostomy site.

Joshua sleeps very little and whines quite a lot. He has completely changed our lives but we absolutely adore him. He is the light of our lives and everyone else that comes into contact with him just loves him. Joshua loves music and lets you know if he doesn't like a song. He responds well to different voices and knows when it's a strange voice. He certainly knows our voices and reacts differently to us. Different people say Joshua is so lucky to have us to love and care for him, but we are the lucky ones to have been given Joshua to love and care for. We are very lucky in the fact Joshua has a great medical team that truly care about him. Also he has great therapist's that work well with him. Joshua now goes to respite care which he really enjoys. Some times it is just for a 5 hour stay, other times it is overnight. The respite care house Joshua goes to only ever has 4 kids in at any one time. The kids all have different disabilities but are well cared for by qualified nursing staff.

[This story was originally written in 2000]

Joshua died on March 2, 2005 after a long illness. He was surrounded by the love of his family. 

After reading Josh’s story in Diane’s own words, it is easy to see how much she loved her little boy! She and Mike were great parents and advocates for him. It is with a sad heart that I let those of you who are not aware, know that dear Diane passed away last year. She had a minor surgery, with the goal of improving her health, and due to complications, she unfortunately lost her life instead.
I met Diane in 2003, at the very first Hydran Family Get-Together in Orlando, Florida. She and Mandy came all the way from England to see us all! It was such a pleasure to meet her and Josh! Diane was a warm, funny, and caring individual. Her heart was always in the right place, and she was a joy to be around. She was funny and outgoing and fiercely protective of her family and her friends. I remember laughing with her and crying with her, and I miss her friendship so much! She was truly a great lady!
Though we will all miss Diane, we can rejoice in the knowledge that she has been reunited with her ^Josh^, and we know they are playing and running and laughing together in Heaven. Our prayers are with Mike, as he mourns the loss of both ^Josh^ and ^Diane^. May he take solace in the fact that Diane’s Hydran Family will never, ever forget her!! Fly high ^Diane^ and ^Josh^…..until we meet again.

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