Holden And His Williams Syndrome Explained And A Pic

[color=#FFFFFF][size=18]I'll give ya'll a quick update on Holden. Some of you know that my Grandson has William's Syndrome. Certainly something I had never heard of in my entire life and we was so sad when we got the news about it. Williams Syndrome is a genetic disease that there is no cure for. There are 26 genes missing from his 7th chromosome. With this syndrome those that are affected with it can have many health problems such as heart problems, liver and kidney problems, hernia's , he has had to have 2 removed already and he is only 4 months old.

They have excessive crying and have a excess in calcium in their body's that causes the crying to be even worse. They do not develop as quickly as other children that do not have this syndrome and they say that they will have mild to severe retardation. I spoke with a lady who's son has the same syndrome that I found on the support page on Facebook and was telling her about how he cry's so much, she told me that her son was the same way as Holden and that it could be his formula that is causing the crying because formula will add to the extra calcium that is built up in his system therefore causing pain. She said that the crying can be stopped simply by having his formula changed.

We take him to his Geneticist on the 19th of this month, hopefully we can get things figured out so he can start to enjoy his life without pain. Regular Pediatricians know nothing about this syndrome so we will have to wait for the Geneticist to make the call on the formula.

One thing that I do know is that my faith in God tells me that this little precious little boy is going to pull through and be just fine.
We treasure him with or without this terrible syndrome.
I only pray for him to be healthy.

Boy, I wrote a novel like Rita does lol
Anyway here is me and Holden gettin ready to play bingo here today.
I love him so much, he has been such a blessing to us.

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ahh sharon hes precious no matter what.my prayers and thoughts are with all of you.i rmember when my daughterwas 2and the doctors told me she may not make it through the nite. she had Meningitious. well she made it but she catches things easily. like when she got a splinter in her thumb, she had to be in a hperberic unit to save her life, she got blood poising that when up her arm. her thumb got to look black and was like paper. she lost it. and i constanly worry about her amune system. she is 49 now but them days are foreven in my mine like it was yesterday. i have 4 grandkids . and the mother in me worrys a lot , no matter what age. my rog doesn't under stand that, but thats mea worry ward.that little boy has a lot of love and is in all our prayersmay god be with you all, ((hugs)) josie46

Awww Sharon he is so precious!!! Please know he is in my thoughts and prayers. Please keep us informed how Holden is doing please.

So sorry to hear about your daughter as well Josie!!! You hit the nail on the head when you said you always worry about them no matter how old they are ... they are stilll your babies.

Ohhhhh Sharon about your novel writing ... your novel is NOTHING like the novels I write ...

#1 your post is a "mini" novel
#2 your post is very informative and people will read it
#3 and you stay on topic

none of the above you'll ever find in my novels!!!

roflmaoooo

Sharon: So sorry to hear about Holden. He is so precious and you will find that each day your family has him is a blessing. My granddaughter was born with several birth defects. She had a heart transplant when she was six months old, then at 10 months we found out she was deaf and later slightly autistic. She wasn't able to eat when she was born and so they inserted a feeding tube. She is sixteen and still eats through a feeding tube. She loves her computer and the internet. Baseball is her hobby and she can rattle off things about baseball teams that are unbelievable. Give Holden lots of love and he will thrive. He will give you back ten fold the love that you give him. God bless and keep you all well and in his spirit.

Thank you Josie, Shirley and Rita. Bless all ya'lls hearts! You are right Rita, it wasn't as long and I did stay on topic lol your a riot!
I will keep you all updated. Thank you for the prayer's they mean so much.

Hi,


Sharon thanks for the explanation on William's Syndrome..Holden looks so content in your arms..He does look like he can have a stubborn streak in him..hmmm wonder where he got that from

Holden is blessed to have so much love around him not only from his family but also from his crusher family..He's a fighter..

You guys are always in my thoughts & prayers..

Hugs,

Sarah

Sharon, thank you for the informatiion on the problems your sweet, poor lil guy has. I had no idea what it was. I pray they will get him all figured out. I am sure this requires some patience and love, which he seems blessed with!!

thanks sharon for explaining what williams Syndrome is. thank goodness for the internet so you can talk with others who share this syndrome and learn things that might help. Holden looks very content in your arms am sure you 2 will be very close when he gets older. He has been through so much from the start . I'll keep him and your family in my thoughts and prayers

Thanks Sarah and yes he can be very stubborn but he gets that from my son haha, thank you Patti I am sure that the Geneticist will be able to tell us more I hope. Thank you Shirl, we already hold a special bond. I have been close to him ever since he was born. Besides his Mom and Dad I am the one that he knows, he knows my voice and when I walk into their house and start talking he starts looking around for me. I am so happy that they live just across the street from us. I get him every day for 2 to 3 hours to give Mommy a break because I know she gets stressed out but she is really doing a great job with him, she is so patient and loving with him, I am very proud of her as it can be very challenging when he cry's. It is so hard to explain but it can take hours to just calm him down. It really isn't a fit but rather it's like he goes into a " rage " he pulls at his face and scratches it up, I hurt with him when he does this. One day I just started crying with him because I felt so bad for him. The picture above of him is a good day, he was playing bingo with maw maw, looking at the screen and making sounds. I know that this is normal with 4 month old baby's but not him, he is totally different as I said he is behind on everything but is coming along good. This is very therapeutic for me to try to explain what his syndrome is because we don't know of anyone in our area that has a child that has the same issues because it is very rare. Anyway, thank you all for reading, thank you for the prayers and making me feel better.
Love you all!
If you would like to read up on Williams Syndrome here is the link to their webpage: https://www.williams-syndrome.org/

Holden is coming along as well as expected for a lil fella that has William's Syndrome. The crying could be because of his formula ( calcium ) and the acid reflux that he has. He isn't gaining any weight and is still only 21 inches long. She said that he isn't gonna be a big kid, this is the norm for WS people. The crying if it isn't from the formula or the reflux will stop she said he is going to be a sweet loving gentle child all characteristics of WS kids they are too trusting and have to be watched so they don't just take off with strangers. They took blood today to check his calcium levels and some other things. He has a heart murmur we already knew this but she said that he is lucky because most kids with WS do have worse heart problems. They are going to set him up with a GI and heart Dr. to keep a check on things. I feel comfortable with the meeting, the Dr. was very nice and explained to us any questions that we had. God is still in control

Sharon,I always look at kids or anyone with any kind of disability as a blessing to everyone who knows them.I know this now because of the 2 Down syndrome guys we took care of for a number of years.They are truly God's Gift to us.They enrich everyone's lives who accept them as they are and who they are.God Bless all God's Children.

I agree Bower as I was raised with children with all different kinds of disabilities.In my lifetime of living at home my mother had her 7 natural children and over 100 foster children most with disabilities and of all kinds.Being raised with them made me decide to go into respite care with them.(caring for them while their parents got a break as the state legally will allow parents of a disabled child so many days a month)I had the respite care license for outside our home and my mother had the license for inside the home and her foster license until she was 60 some years old and felt it was time for her to have a few years child free.Although not many years ago ,one that she had with alcohol syndrome moved back in at 16 until my mom passed almost 3 years ago and he moved on to a sisters.Bower is so right as children with disabilities have so much love to give and they give back 10 times the fold.They were sent as a gift and usually to special people.I am thankful that my sons saw the love that we could show to the ones with problems and 1 carried on to a group home to work with them and loved his work while he was there until it was closed down.You can never give to much love to them and I could tell family to family of caring for their children ,you can tell the families that gave 100 percent to their children as i would watch those children thrive twice as fast then those who had to work long hours or just didn't have enough time for them.I have a nephew on my hubbys side that has mobious syndrome and autism and has no movement in the face muscles at all and I believe could have went further if born by a different parent but him to was missing the chromisomes in his genes and this to is a vary rare condition but being raised the first few years of his life by a addict that was 14 didn't help :)LOVE and NUTURING Sharon is the 2 most important things and I hope my book isn't to boring.I wish the best for little Holden and your family and by this picture i can see the love

Amen Archie and Char. We love him unconditionally. He really is a blessing to us. I can't explain the love that I ( we ) have for him, he is so precious.

Holden is indeed precious, and with all the love that surrounds him and the prayers from family and friends, I am confident that he will thrive. Sharon, you and your family are blessed to have him in your lives and Holden is blessed to have all of you as his family. May God watch over your entire family always.

Thank you Nono