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, 2006.by 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 Altar

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.

"Thank You Lucia!"

My sister in law, Ashley, called me earlier this week and had a glowing sound in her voice.  She said something like this "I just wanted to call and say thank you Lucia for introducing me to a beautiful world!" She went on to tell me about two people she had met that day.  That afternoon, Ashley was walking in her neighborhood park and saw a man pushing his son in a wheelchair.  With her daughter and Tank the pug by her side, she approached and introduced herself to them.  Tank was very loving, sweet, and of course, extremely entertaining, as pugs tend to be, and it brought a smile to the handicapped boy.  Ashley visited with them for a little while and was so happy that she did.  The boy was non-verbal but seeing him smile and seeing his dad appear touched that she made the effort to come over made Ashley's day.
Then later, Ashley was out for dinner with her family and saw a disabled woman,also in a wheelchair, at the table close to theirs.  At some point she picked up Taylor, their 11 month old daughter, and stopped by to say hi to the woman and her family.  They smiled and the woman's family talked to the girls and thanked them for coming over to say hi.
Ashley told me, before Lucia she would have never done that.  "Lucia has opened up a whole new world" to her and she loves it.  She loves that she isn't scared or hesitant anymore.  She loves that the people she met were excited she came over and no doubt, it really made her day as she sounded extremely lit up and happy on the phone when she called me.  Brought tears to my eyes.
I know growing up, there was no one like Lucia in our lives either, and I too was scared and hesitant to approach someone different, especially if there were other 'typical' people around-what the heck?! Who knows, but I know now that what Ashley did by 'getting closer' just with a simple friendly interaction is a beautiful thing, and yes, I agree with Ashley too, a more beautiful world.
Thank you Ashley for sharing and Lucia, our Lubird, thank you for being you and being ours!

Tank the pug and Kayla as a baby (now almost 3)

Ash and Little Lu

Sweet Taylor that day at the park

Last weekend we also had the pleasure of cousin Imogen visiting with her parents, Courtney and my brother Jon.  So cute to see all the munchkins together.

Love you Kim and Court!

not sure why these pics are so small..?

And we would like to welcome Lincoln Zapata into the world-almost a week old! Lincoln was born to my sweet friend Katie Shean and Dave Zapata, and he is having a rough start.  You are in our prayers sweet Lincoln and we hope they get you feeling better VERY soon.

10 Seconds!

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Nine

Ten

and some...


A little over Ten seconds!  That is how long our Little Lu 'stuck' a sitting position last week and we have been close or as good to that, every other day or more since! In about 6 weeks she will turn 2 and how amazing if she could sit by 2!  It's just a number and just a milestone, so no big deal if not, but watching her progress...rocks our world.  

More smiles, more giggles, more babbling, and now closer to sitting than ever before.  More in love every day.   Our little girl also had a sleep study last Monday and got hooked up to all sorts of fun things...we don't have the results yet, but I'm not worried..just a routine check-up.  Have to share her pic though..you look great LU!

TWEET TWEET! as her daddy likes to say 'She is so stinkin' SWEET'!

Thank you to all the girls that purchased Stella & Dot jewelry for PKS Kids and Lu.  Thank you Jeanine Levinson (our favorite mommy and me yoga teacher) for the fun wrist and ankle jingle bell bracelets.  Thank you Anna for sharing your experience with my Mom!  Thank you cousin Jim, Lara and family for your stop in Denver-always great to see you and we're loving the oils!

second cousins!

Isabella Desantis and family, you are in our prayers every day.

And starting tomorrow, for the weekend,  all the Hicks cousins will be together for the FIRST time!
Hudson, Marco, Charley, Lucia and from San Francisco..Imogen-yippee! So excited to spend time together!

And not to forget the wee baby girl in my big belly!  You are kicking up a storm and we can't wait to meet you, love you and welcome you to our world in less than 12 weeks!

Until next time, Lu is just going to be kicking back....

Thank you God for our sweet bird.  We love her so much.