Off Topic

Liam’s Story

This is not a normal post for me, you will notice.  My daughter asked if I would post this on my blog to help generate support for the benefit they are hosting online to help some friends raise money to help cover medical bills.   Here is their story: 

Dave & I have never publicly discussed Liam’s entire journey.  It is something we have always kind of kept to ourselves with small updates here and there.  As we share Liam’s journey please be respectful in your questions and comments.

Liam was born at 39 weeks 5 days on November 22, 2014.  He was 5lb 5oz at birth.  When Liam was born he had low blood sugar, low platelet count, and low oxygen which results in a 10 day NICU stay at St. Joseph’s hospital in West Bend.

The first 2 months of Liam’s life seemed about as “normal” as any other little baby.  He ate, pooped, and cried.  However – we noticed that Liam had really bad reflux and cried with almost every feeding.  At this time Liam was placed on dairy and soy free formula due to allergies.  He was also placed on medication for reflux.  This helped tremendously and he was the happiest little guy!

Around 3 months old I had noticed that Liam was not tracking visually.  He didn’t follow toys, he didn’t follow our faces, and he didn’t follow light.  In fact, he didn’t respond at all to anything that would wave in front of his face.  At this time we took him to our pediatrician who referred us to a pediatric ophthalmologist.  When we saw the ophthalmologist he thought that Liam just had delayed vision and with time it would improve.  As many of you know, this is the time when we started patching Liam’s eye 2 hours a day due to his lazy eye.

About a month later we went in for a follow up to see no progress in Liam visually.  The ophthalmologist ordered a brain MRI to see if we would be able to see if Liam’s visual delay was coming from the brain.  The MRI was also ordered because Liam’s optic nerve and anatomy of his eyes looked completely normal.

It took about 2 weeks for the results to come back – the longest 2 weeks of our lives.  Once the results came back we learned a whole lot more about our little guy.

To make a long story very short – we were referred to a pediatric Neurologist.

The neurologist informed us that there were abnormal changes of the white matter in Liam’s brain.  She also told us that Liam is not able to process vision, a lot of his brain is not interpreting information, his brain had large ventricles, and there were some non-specific changes of the eyeballs. As you could imagine this was very overwhelming – and we had no clue what it meant for Liam.

At that time the neurologist ordered an EEG due to the severity of the brain MRI.  The EEG showed that Liam’s brain was having seizures about every 3-5 seconds.  At that time Liam was admitted to Children’s Hospital for long-term EEG monitoring and to start seizure medications.

Unfortunately when the oral medications were not helping the seizures Liam was put on injections 2 times a day to help with the seizures.  We did see the seizures decrease and his behavior started to change.  Liam was on the injections for 8 weeks when we repeated his EEG only to find out the seizures got worse.

Throughout all of this Liam has been admitted to Children’s Hospital here in Milwaukee several times for long term monitoring for his seizure.  We have also encountered several trips to the ER for severe dehydration, high fevers, and seizures.

Beyond all of that Liam has quite a few other issues going on.  Liam is extremely delayed developmentally due to the small amount of healthy brain.  He is currently 8 months old and functioning at the level of a 1 month old.

Liam has had some other struggles along the way – bleeding disorder, heart murmur, infantile spasms, torticollis, and  plagiocephaly.   Along with those Liam has cerebral palsy, he was underweight for the majority of his life prior to the injections, as well as a dairy and soy allergy.  Liam also has severe reflux, blood in his stool, glucose in his urine, and high blood pressure.  Some of these complications come from the injections he is currently on and will hopefully improve with time.

Liam will continue to be delayed for the rest of his life due to the brain injury.  We are not sure what Liam will be able to do on his own.  Some of the major things that other children are able to do are currently up for questioning – walking, talking, feeding normally.

Liam will also be getting a couple of different suits and splints placed on his body due to high tone in his limbs, which is causing his muscles to break down.  Liam will be getting a Spio suit – which is a pressure suit to help his body relax and take some of the stress off of his body.  Liam will also be getting McKie splints placed on both of his hands to release the tension in his hands.  With time Liam may have to get botox injections to help with his muscles as well as splints on his legs and feet.  Our rehab specialist is taking it very slowly and trying to see what Liam’s body is able to do on it’s own prior to splinting all of his limbs.

Liam is currently followed closely by our pediatrician, neurologist, renal specialist, rehab specialist, ophthalmologist, chiropractor, crainofacial specialist, as well as physical therapy, occupational therapy, and speech therapy to progress address his medical needs.

We are hopeful that Liam will be able to overcome some of the daily challenges that he faces.  Although I didn’t go to in depth into Liam’s story – hopefully this allows you to get a better understanding of what the little man is dealing with.

We appreciate all of the support and prayers! We wouldn’t be able to get this far without all the love and support from all of you!

 

They are having an online benefit for the family to raise money to help with the huge amount of medical expenses they are facing.  The companies featured are Origami Owl, Norwex, Perfectly Posh and Tupperware.  Please check out their Facebook page to find out more. 

All about the companies:

Norwex:
Norwex is a company that was created around cleaning with water and microfiber. The clothe they use contains antibac micro silver. The silver activates once the cloth is wet with hot water. When the silver is active it works as a self-purification against mold, germs and other harmful stuff within 24 hrs. Now their products are all over the world and are helping make the world a cleaner and healthier place. As this cloth and their other products are slowly replacing the chemicals we use on a daily basis.
Www.rebeccareinke.norwex.biz
Consultant: Rebecca Ayala
Percentage of sales donated: 25%

Perectly Posh:
Perfectly Posh’s spa-grade naturally-based skin care products are also free of sulfates, parabens, lanolin, paraffin, petroleum, and phthalates. We don’t use any gluten in our products, nor do we use soy fillers. Our fragrances are all food-grade, and many of them come from essential oils. The company is also making an effort to use sustainable ingredients. Many of our products are vegan. And everything, in addition to being cruelty-free, is made in the USA. Everything is under $25, and if you buy 5 items you get the 6th for free!
Www.perfectlyposh.com/sarahkleinman
and select Liam’s fundraiser under events
Consultant: Sarah Aig Kleinman
Percentage of sales donated: 15%

Origami Owl: 
Origami Owl is fully customizable and interchangeable jewelry that helps you tell your story. The living locket has expanded to include bracelets, earring and now watches! (Coming 8/3/15). The possibilities are endless, and our jewelry makes a great, personalized gift. Please be sure to contact me before placing your order if you have any questions or concerns on how to design your custom jewelry.
https://sarahkleinman.origamiowl.com/shop/party/134380
Consultant: Sarah Aig Kleinman
Percentage of sales donated: 25%

Tupperware:
Hi, this is Kris. I am inviting all of you to Liam’s Tupperware Fundraiser, in which 40% of the retail products purchased will be donated directly to Liam and his family for his care. The fundraiser sales site will show you how much the donation portion is of each piece of Tupperware you purchase. You do not pay for shipping, just add sales tax. Please give 4-6 weeks for delivery. If you have any questions please call or text me direct at 262 352-4683. We appreciate your support! Thank you!
celebrate.my.tupperware.com “Find a fundraiser” Enter WI, look for Liam’s Fund.
Consultant: Kris Brendel Anderson
Percentage of sales donated: 40%

Thirty One:
Thirty-One was founded on the simple premise of empowering women by giving them the opportunity to own their own business. That mission remains at the heart of everything we do today. With emphasis on home parties, relationship building and business support, Thirty-One provides frequent opportunities for women to enjoy the friendship of other women while taking charge of their financial future. So far we’ve been blessed to help more than 100,000 women change their lives through Thirty-One!
www.mythirtyone.com/lindseybedward Click on My Parties and then you should see Benefit For Liam Adkins and then Shop Now
Consultant: Lindsey Ludvik Bedward
Percentage of sales donated: 25%

 

Please consider supporting this family with your purchase from these sellers.  Proceeds will go to pay medical expenses.

Thanks so much for taking the time to read this post and supporting this family with your prayers and kind comments.  Please consider a purchase.

Blessings,

Vicki

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