Wednesday, March 27, 2013

Precious Kiddies

There is a PKS kids parents only group on Facebook that a PKS parent mom started a few months ago.  She named the group Precious Kiddies Site. We know these kids are precious but I don't think I realized to the extent until this past week. Precious as in cherished and treasured, absolutely,  but precious as in delicate and fragile, not as much as I do now.

Two precious kids with PKS passed away just in the last week and one in late February. 

Gabby Bledsoe 
 July 15, 2006- March 21, 2013 
Advance, North Carolina

Her mom wrote the following about Gabby on the PKS Kids website shortly after Gabby was diagnosed.  
Gabby's angel sent from God--we had no idea that anything was different with her during pregnancy., all tests were normal. Then came July 15, arrived at 4:58am, 6lbs 1 oz, she looked great.  All that was wrong was that she had really bad  club feet, we thought that was her only problem.  When Gabby was 6 hours old, they brought her to me to so I could feed her, then she turned blue and stopped breathing.   So they rushed her to NICU for 6 days-ran all sorts of test-everything was normal, so we took our little angel home.  A few weeks later, I noticed Gabby wasn't growing or eating very well so I took her to the doctor. He said she was fine, so back home we went--a few weeks passed and I could tell something just wasn't right. I have 3 other children, so Gabby was my 4th.   A Mother knows. I took her to yet another doctor. As soon as this doctor saw her he said she had a genetic syndrome, so he sent us to Baptist Hospital in North Carolina. The doctors there knew she had something but didn't know what she had. At this time Gabby was 3 months old and weighed 6 lbs. The doctors started running tests and all tests came back normal. At that point in time we didn't know what to think but kept testing for all kinds of syndromes. We went to 3 different hospitals in North Carolina but nobody could tell us anything.  At the age of 4 months old, she had to have put in a nasogastric tube, at the age of 7 months she had a gastrostomy and she still to this day has this.  Gabby has pigmentation all over her body, club feet, ear tags, and an extra nipple.  Gabby has been getting occupational and physical therapy ever since she was 3 months old. When Gabby was 2 years old they told us she would never walk.  That was hard to accept, but we did. When Gabby was 3 years old she started having seizures, at times real bad ones--in and out of the hospital all the time--took all kinds of meds and still to this day 2 years later they are still very bad. Gabby was finally diagnosed December 8th, 2009 with PKS.  That was the hardest day ever for us.  We went home, got on the website and started looking and searching for some kind of answer.  We looked at all the beautiful kids and felt good we weren't the only one out there going through this. In June 2010 we went to New Jersey  to meet all the PKS families--that was the best trip we've ever taken. The kids were all little angels and the families of the little ones were so helpful--can't wait to go again in 2012!   Today Gabby is 5 years old and doing good. She had to have a trach put in November 5, 2010. We have nursing care now for her, which has helped out bunches. Gabby is still very much delayed--she does not walk or neither can she talk but that's OK--I wouldn't change anything about her.  I look at children Gabby's age and it's hard to look at them at times, but I tell myself  God picked out to have a child like Gabby and take care of her---God made her like this for a reason. As long as I can hug her, kiss her, give all the love I can, she is a very happy little girl.  

Billy Byrne 
April 2007-March 23, 2013 
Carrick on Shannon, Ireland 

Here is what his mom, Cora, shared when she joined the PKS Kids website. 

 Before I had Billy I would see other special need kids and feel so sorry for their parents. I felt sorry for them wondering how they coped. I was so ignorant to that world until I had my own special Angel. I then realised the only difference was the hopes and dreams you have for your child instead of hoping my child would be academic in school and have a successful career. I now hope that my child will sit up unaided or maybe one day walk or talk. All parents take pride in their child's achievements, like when your six month old claps her hands or waves bye bye its the same for us its just we jump around the place when our 3yr old does it. Everyone loves a baby and 'Ive just been blessed with a baby for a bit longer than most. I wouldn't change Billy for the world, he is the happiest child in the world and we love him and he loves us. We are so blessed to have him in our lives .x

Akeela Rogers
February 21, 2013-February 23, 2013
Jacksonville, Florida

Here was part of an email from Akeela's dad.  He got in touch after receiving the last PKS kids newsletter. 
Yes this is the hardest thing a parent has to go through, losing a child and then it was my only daughter of four boys. Here is a picture of Mommy and Akeela. Yes... Akeela was our little angel, our miracle baby. She has four big brothers and they loved their little sister so much.  I find myself still glancing at this website. It just fills my heart to know that our babies are loved so much. I just love this website....Thanks again
Precious Gabby, Billy and Akeela, may you now be free to fly with all of God's children.  Our hearts ache for their families.  Precious, precious kids.

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