Daniels story Part 2 the later years

Daniels Story Part Two
In Daniel's later years, we finally got Medicaid benefits around 2007 and received nursing care help for the first time. Since Daniel was 7 the following things (among many others) come to mind. Daniel could no longer eat by mouth and had to be 100% g tube fed because he no longer protected his swallow; Daniel had stomach surgery for a Nissen Fundoplication due to severe reflux; Daniel had a second hip osteotomy surgery left side; Daniel had a femur fracture right leg; Daniel had an onset of progressive scoloiosis' Daniel needed to begin bone strengthening therapies because his bones were demineralized: He had a complete spinal fusion in 2012. He also had another surgery not mentioned here, for the Baclofen pump in June 2015. There were many pnumonias (before the fusion) and several illness related hospitilizations. It's been quite a journey. It was especially difficult because Daniel had a terrible case of pancreatits after his spinal fusion, and stayed in the hospital for 37 days (all during the days following the shooting in Sandy Hook)
I'm so glad that you have come to watch. Thank you.
SARAH'S BIRTHDAY 11/20/1995 SHE IS TURNING 20!!!!
DANIELS BIRTHDAY 11/22/1997 HE IS TURNING 18!!!!!
THOMAS'S BIRTHDAY 02/25/2001 HE IS TURNING 15!!!
JOHNS BIRTHDAY 11/1/1966
JULIE'S BIRTHDAY 07/27/1966
We LOVE mail: Julie Hasselberger
PO BOX 3611
Newtown, CT 06470
About my channel.......
My middle son, Daniel John Hasselberger was born on November 22, 1997, with a rare brain deformity called Polymicrogyria. The deformity happened due to a virus called CMV, or cytomegalovirus. He has seizures, respiratory problems, can only eat by g tube, is in a wheelchair, can not speak, and has had countless surgeries and hospitalizations over his 17 years. We are a family of 5 from Sandy Hook, CT and this is our journey.
Every day is full of new things that we don’t expect. I am Julie, Daniel’s Mom. I left my full time career as an HR Director 11 years ago because Daniel needed me. The struggle, the sacrifices, the sibling love, and miracle after miracle.
Why did I create this channel? For support, to help other families dealing with the same diagnosis, to help me cope with depression and isolation, etc.
Julie Hasselberger
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www.raisingdanielhasselberger.blogspot.com
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Julie Hasselberger
PO Box 3611
Newtown, CT 06470
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Please watch: "HANGING BEACHBALL"
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[@annavrana3259]

You are such a great Mother. Keep up the advocacy for Daniel .

[@corinsaleh2129]

WOW YOUR BABY BOY DANIEL is such a STRONG GUY!! He must get it from his AWESOME FAMILY!!! Your family seems like a strong bunch.. sending much blessings! Wish you Julie and your family nothing but the best!!

[@abbyrundle5574]

This it’s a great 😊 project with strong community team of talented people who is working

[@SuperMissblueeyes]

Well done with the support group. That's awesome.

[@lisashereee]

all the best hugs for you xx

[@georgepersyn5479]

WoW... Julie What a great video... Thank you for sharing a great video of Daniel and your family. You are a blessing to us all and I always look forward to your videos and we love you all...

[@kariharrington3875]

I have cerebral palsy, but I did had scoliosis when I was eleven years old. My back was shaped like the letter S. I didn't get the Herrington rod, but I have the screws and they used one my rib bone to fuse my spine. I laid on a striker frame being flipped over every two hours for a month. When I finally got to go home I was in a whole body cast in a hospital bed the kitchen for six months and then in a back brace for a year. This was one of my three surgeries that I had.

[@sharinewman524]

I love Daniels smile at the end.

[@craftyoldlady]

Wow! This really puts the perspective on just how much pain and suffering Daniel has actually been through and yet somehow he still manages to have that sweet, happy attitude. Hugs to you both!

[@Lilstinker63]

Ty Julie this was very helpful and understanding Daniel better

[@meehan302]

You are a very brave and strong woman Julie. These are tough days days for you but by telling us your situation will release some of the awful stress that you are experiencing . Keep going and fight on - one day at a time. You have a great family.

[@kendal36]

so beautiful, thanks 4 sharing

[@valleygirlgg]

My son was born with a spinal condition called scheuermann's kyphosis and its similar to scoliosis except the curve goes forward so hes basically slowly being squished down and tipping over and his heart and lungs will become compressed. They will cut him from the base of his neck to his tail bone and then have rods put in the straightened up out. They said he will gain about 3 inches in height. I dont know anyone else who has gone through this but its necessary. Its so hard when its our kids. You are a great inspiration to me. thankyou for sharing your life with us and explaining everything that Daniel has going on. I hope this day finds him doing great. I love it when he laughs!

[@valleygirlgg]

Oh wow! That's some impressive height! I think my son David will gain more height than what they have said. He is working right now saving up for when he is down. He has a really good job and they have affleck there so he can get paid while hes down. HIs surgery needs to be done within a couple of years. The problem is scheuermann's is so rare its hard to find doctors that do this surgery. He has to go to the UW. I'm so glad Daniel's surgery helped him so much. Im hoping it helps David too.

[@bjay1956]

Thanks again for this Julie, knowing what you went through with Daniel inspires me to try and be a better parent, you are all showing so much love , thanks , John

[@momsdoitbetter_0226]

Thanks Julie for doing these videos. it really has given me the information I wanted but never wanted to ask because I didn't want to sound mean or rude. Your family is wonderful and you are a supermom! Love all your videos. I cry when you cry and laugh when you laugh.

[@thegingermommy]

i can't imagine his poor little body going through all those surgeries, he's a strong kid for sure!

[@RedLipshtick]

It's amazing to hear yours and Daniels's story. I've enjoyed learning so much more and appreciate you spreading awareness. I look so forward to watching your vlogs each time too!

[@deborahtawadros567]

My youngest went through his health issues when he was very young. We were told when he was 12 months old we were told he only had a 50% chance to live past 5 years of age barring any serious incident. Unfortunately he suffered a near drowning at age 2 1/2 due to his physical problems. Happy to say he will be celebrating his 19th birthday this October. Before he was 4 he had 14 bouts of pneumonia, RSV, 5th disease, 5 major stomach surgeries, adenoids and tonsil removal, blood infection and a few other things. In fifth grade he had 4 feet surgeries and now he suffers from scoliosis. His diagnosis's are Duplication 15q syndrome, microcephaly, Autism and mild cerebral palsy. He is our 4th child. Our oldest(25) has Duplication 15q as well. I have Primary Progressive Multiple Sclerosis and a few other things as well. We should contact each other and share notes.

[@carriebowlen3785]

I love you Julie and Daniel!!

[@paulaylward5565]

I hope he gets well and will stay well

[@keepingitreal71]

He is a tough guy... Don't ever underestimate him... I think he will live a long time... With you and the family behind him... I believe he can do it....

[@bigdude1234]

gave a big like

[@paulaylward5565]

Love him very much

[@cpchick81]

Glad you got nursing help. I am 34 and have scoliosis lordosis and kyphosos. I lean to the left in my wheelchair and am going to trial new seating but I am not sure it will be OK. Does Daniel have specialist custom seating in his wheelchair?

[@cpchick81]

+Julie Hasselberger That is not great- I have heard US insurance can cause problems for many people. I have been recommended a Roho- how'd the Roho go for him? I am not convinced by much of the seating on the market and did find a brand called Varilite which I may try (www.varilite.com) which is a combination of foams & air. I have a Jay cushion (Sunrise Medical) but I find it uncomfortable and am considering custom seating but many technicians are on vacation at the moment and keep giving me different advice. I have just bought a new chair- a TDX 2

[@cpchick81]

+Julie Hasselberger Not great, especially considering how much chairs cost- we were saving for 4 years for mine. Which chair are you having issues with? I had a hard time choosing a chair as many were discontinued or did not have the features I needed or were expensive. I look for as compact a chair as possible too so I can get into small spaces. I really wanted a Permobil but that will be one for the future I think. Spinal surgery was never explored for me, mostly I have just tried to cope with different seating and positioning devices. Will be getting a chest/shoulder harness and belt soon so will see if they do the trick......a pelvic belt alone does not, despite the velcro straps on my feet to keep them on the footrest, plus contoured seating. We will see what I end up with!

[@paulaylward5565]

Love Daniel

[@margaretmikell9952]

How long after Daniel was born was it before you found out about his brain problem. Sorry don't know what it's called. Beautiful family. Love Daniels smile.

[@AZChapman]

Have you tried AAC for Daniel ?

[@kariharrington3875]

+AZ Chapman I wondered about that also.

[@craftcornerwithestherc2506]

I cry just thinking about Sandy Hook. Thank you for sharing about Daniel

[@cpchick81]

My cousin was also on lockdown

[@cpchick81]

+Julie Hasselberger My cousin and her parents and sister live in Weston, CT. I remember my aunt saying she knew at least some of the teachers at the school, and my cousin knew some of the kids, My cousin is now at university. December 14 is her birthday so very unlucky. My family were so shocked, and it was at times like that that the distance between the US and UK is too much (my family are from the UK). How is Daniel doing?

[@cpchick81]

+Julie Hasselberger What a horrible experience for everyone

[@matthewmichael9076]

U guys on Facebook

[@kirstinbenson4049]

I love you family and friends hello friends Julie Hasselberger John hasselberger Sarah hasselberger helps hello friends Daniel hasselberger Thomas hasselberger Happy Smile

[@kirstinbenson4049]

I love you family and friends hello friends Julie Hasselberger John hasselberger Sarah hasselberger helps hello friends Daniel hasselberger Thomas hasselberger Happy Smile

[@margiecarter2096]

yep Medicaid sucks i am only allowed 12 doctors vistits a year