Losh's (23rd) Surgery Report

Hi Team Losh!

I just wanted to share the latest update on our little superhero from his mom. As some of you already know, he had surgery last week, and it was a pretty big one for him. Here is the update from Mama Losh.

"As referenced in this post about the ENT visit, Losh had surgery this week.

It was coincidental that the morning of surgery he was watching a cartoon where the main character went to the doctor. This character was scared and the show was about making them comfortable with visiting the doctor. Losh just shook his head and waved his hand in a “that’s ridiculous” kind of motion and told me he wasn’t scared. And he was right! This brave little boy was not scared of going to the doctor.. He was somewhat shocked that he needed surgery, but not scared.

So, here he is on the way to the doctor.. smiles as usual.



Inside the triage room, visiting with some of his friends.. Out of all of the nurses that recognize him and know him as a frequent flyer, I wish surgery wasn’t one.



All dressed and waiting on the doctors to take him back.. He still wasn’t scared.



I was a big ball of nerves. This was his twenty something surgery (Ive lost count) and he has done well with most of them. He has only had major issues with 2 of them.. Both of those times I was alone and both of those times he coded.. I was alone with him again this day and terrified out of my mind! I thank God that he did well though…

And hes done!



Poor guy ended up having a lot done. The doctor told me inside the consult room that out of all of the surgeries he has ever had that this one was going to be the worst. While back there, they did:

Tonsilectomy (removed his tonsils)
Uvulectomy (removed his uvula; the dangling bit in the back of the throat)
MLB (Scoped his airway and removed scar tissue from previous surgery)
Turbinate Trimming (inside his nose to make the airway bigger)
Ear exam (Making sure his tubes were ok)

The good news is that the doctor thinks nearly all of his airway issues are fixed.. The bad news is that there are some slight airway issues remaining that cannot ever be fixed. As he gets bigger and stronger it may become better, so all hope is not lost. The doctor believes he will be getting decannulated in the Spring after another sleep study. He is unsure if he will require CPAP, but thinks that he will not.



He was having trouble keeping his sats up and was intermittently on oxygen, but as the night wore on his sats increased.



He wanted to eat so bad, but it was just too painful to swallow. Thankfully the doctors took some steps to try to make his pain less (pillar closure being one), and had him on some pain relief medication.



He fell asleep holding onto the french fry.



The next morning rolled around and he was ready to go home, though the doctors disagreed. I had a little debate with the resident doctors regarding that though.. They didn’t want to send him home until he was eating and drinking some by mouth (even though he has a button). I told them if they were waiting for that, then they don’t realize how stubborn he is. We would have been there for days. Thankfully we were able to go home and having a button and trach is making his recovery easier than what most kids who have these operations go through.



Upon getting home he got all of his tube feeding supplies ready and had me feed him, and then he raided the fridge, found a Burger King kids meal, and heated it in the microwave (didn’t eat it tho), but he really wanted to. This kid loves food, so not being able to eat is tough for him.

He is glad to be home and he is doing well with recovery so far. Hes been resting a lot, and asking for pain medication like clock work. I just pray that this is the step needed to get him trach and machine free!

- Courtney"

 

He's recovering well, but is still in pain. Poor little buddy. :( Thanks to everyone who has been keeping him in your thoughts and prayers over the last week, and for those who have been praying for his Unk 'Ney who is facing his own fight against serious illness right now. The family is so grateful to Team Losh!

 



A Christmas Birthday Celebration.

Losh has decided that for his 8th birthday party he wants a Christmas theme, complete with a tree to put his presents under and even a Santa appearance. What fun would a Christmas Party be without Christmas cards? If you would like to send Losh a Birthday/Christmas card then here is your chance. His birthday is on the 18th of this month so you still have (slightly) plenty of time to get one sent out and to him in time for his Christmas Party.

The address is:

Team Losh
PO Box 986
Bald Knob, AR 72010

Thanks to all of those who have already asked for the address to send a card.

Aloshua's Progress this Year: BIG News!

Posing at the Old Mill this Summer

Today is World Prematurity Day and it is beyond time for an update on Team Losh and our favorite little superhero. Let me start off by saying that Aloshua has been a very busy little boy since our last update. This year has been full of progress and a few very big milestones for him.

In September, we were able to celebrate a HUGE milestone with him. For the first time ever, Aloshua went an entire YEAR without being hospitalized. We had a few close calls, but he fought through his illnesses like a champion and was able to remain at home. We cannot even begin to tell you how amazing it was to celebrate this milestone with him. It was a very long time in coming... seven years, as a matter of fact. Our family is still celebrating, and probably will be for a very long time to come. :) 

Because of his progress, Aloshua's doctors decided it was time to see how he would do without the ventilator. After checking everything out, they decided he needed one more surgery before we got to that point. So in October, Aloshua underwent his 22nd surgery. He had his adnoids removed, tubes placed in his ears, and part of his airway fixed. He came through with flying colors and was able to return home the same day.

Aloshua and Mommy before surgery

His recovery was probably one of the easiest he's ever had. He was up playing later that afternoon. But there were a few setbacks. Post-surgery, Aloshua began to aspirate liquids at an alarming rate. Every drink he took seemed to cause him some problems. He had a swallow study early this week, and is now on very thick liquids. If he continues to aspirate (liquid goes down the airway into the lungs instead of down the esophagus into the stomach), his doctors will halt all liquids by mouth until spring. The last thing anyone wants is for him to get aspiration pneumonia this winter and undo all of the progress he's made this year.

But don't fret because we have more BIG news!

Aloshua has now been off of the ventilator for the last FIVE WEEKS and is doing great! For the first time in his life, he's gained weight while off of the vent. He's been incredibly active and is doing such an amazing job handling breathing on his own, being a little boy, and gaining weight. This is such a huge milestone for him, and it's one we've all been so thrilled to celebrate with him. If he continues to do well, his doctors will assess whether he's ready for life without the trach in the spring. We're cautiously optimistic, and we've got our fingers crossed that he breezes through this winter with no complications.

Goodbye Ventilator!

Otherwise, Aloshua has had a great year. He's spent a lot of time out and about with his family, and has kept up really well. We're able to take him out without his face mask more often, and he just loves it. He's talking constantly now, and he's a rather bossy little thing! He loves telling his sister what to do. "No" has become a favorite word. And, sadly, he's learned the not so nice "Hut up" phrase (his way of saying shut up_ for all those times when he's annoyed at someone. We're trying to break him of that one, but he's reluctant to let it go. He eats two bowls of oatmeal for breakfast each morning, and keeps eating all day long.

Halloween Fun with his siblings

 

Surprisingly, he's beginning to overcome is aversion to pets. He's touched a goat, a chicken, and a cat... and he finally agreed to getting a puppy. Mallori has been with the family for a few weeks now, and Aloshua willingly pets her. He still freaks out when Aunt Fallon's two crazy dogs lick him, but he's gotten the hang of telling them to "get down NOW!" with as much conviction as he can muster.
He's learning new things every day. This is as nerve-wracking as it is inspiring. He's required to wear braces on his legs at night, but much to his therapist and mom's ire, he insists on taking them off in the middle of the night every night. For a little guy, he is as stubborn as they come. :)

Hanging with his own kind: Superheroes!

Reading Aunt Ayden's new book, FADE.

 

A few weeks ago, he snuck out of bed early, got all of his supplies for the morning together, got his mom a Pop-tart, and laid it all out on the couch before he woke her up. It was truly the sweetest thing, and just reminded all of us of how incredibly special Aloshua is. His heart is as big as his spirit, and he continues to teach us lessons each and every day about life, living, and the empowering spirit of generosity. 

Posing for his traditional sleep study picture

Walking at therapy

The Great Pumpkin

Watching his progress this year has been such an amazing thing for his family, his friends, and everyone rooting for him. We cannot begin to thank all of you enough for your support, your prayers, and your commitment to our little superhero. We would not be here without all of you. So thank you for everything you do for him and for the thousands of special children just like him.

We're still fighting for our little superhero, and for children just like him. After a year of roadblocks, his insurance provider FINALLY agreed to begin covering the high-calorie nutrition supplements he needs to keep him growing. They still refuse to cover many of the items he needs, but with the help of his amazing medical team, we've been able to find viable alternatives as often as possible.

His mom has continued advocating for him and for children like him, and has spent much of the year working as a volunteer for the Arkansas Center for Respiratory Technology Dependent Children, attending conferences, networking with other parents, and helping parents new to life with a trach kid get settled into the rollercoaster they will experience.

This summer, Aloshua was able to attend his first conference for ACRTDC, and was in awe of all the children there who were just like him. His mom is looking forward to attending with him again next year. In the meantime, alongside his siblings, Aloshua continues to support the Arkansas Chapter of the March of Dimes as a Mission Kid, helping to raise awareness of the high costs of pre-term birth.

The March of Dimes has done amazing things for children like Aloshua. Because of their commitment to preemies and those with birth defects, Aloshua is alive today. This is a blessing our family will never be able to repay, but we work alongside Aloshua each day to say thanks the best way we know how: by helping others beginning the journey Aloshua has been on for the last seven and a half years. And we hope you will continue to join us as we fight for Aloshua, and for the millions of preemies like him.

We won't give up.

All the best, 

The Schulist Family

Fandom for Preemies

Team Losh is proud to announce that we've partnered with Fandom for Preemies to raise funds for the March of Dimes via the March for Babies program!

From now until April 15th, authors can sign up to write a short story for the Fandom for Preemies Compilation. Anyone who donates $5 to the March of Dimes through our March for Babies team, or via the Fandom for Preemies Virtual Band from March 1st to April 15th will receive the compilation on May 1st, 2012.

For those of you not familiar with Fandom for Preemies, in November of 2010, the group raised over $5,000.00 for the March of Dimes via a compilation drive just like this. Over 100 authors participated, and hundreds from around the world donated to the March of Dimes as participants. The Compilation was over 1000 pages in length, and featured stories from authors in the United States, the United Kingdom, Canada, and Australia.

This year, they decided to sponsor Team Losh, who have been members of Fandom for Preemies or huge supporters of the effort from the beginning, as they march for babies, in an effort to support not only the March for Dimes, but the individual families and walkers who are advocating for children like Aloshua. Ayden, who is a captain for both Team Losh and the Fandom for Preemies effort, wanted to combine the two campaigns and allow Team Losh to help give back in a major way.

As Aloshua's family can tell you first hand, the March of Dimes can make a HUGE difference. Thanks in part to their work, Aloshua has overcome incredible odds for six years and is able to remain at home with his family. Thousands of children like him are not so lucky. Many premature infants never make it home from the hospital. Annually, one million infants die because of prematurity related complications like Aloshua experienced. It's Team Losh's goal to help ensure that as many of these precious children are given a chance at life as possible, and we are thrilled to join Fandom for Preemies as they help the March of Dimes realize this goal.

We hope that each and every one of you will join us in helping make a difference for the 543,00 babies like Losh that will be born early in the United States this year by making your $5 donation to the organization via Fandom for Preemies or Team Losh's March for Babies team!

For more information on Fandom for Preemies please visit http://fandomforpreemies.blogspot.com/. You can check out the March for Babies program and donate at: http://marchforbabies.org/team/TeamLosh. Questions can be emailed to fandomforpreemies@gmail.com or tweeted to @Fandom4Preemies.

All our best,

Your Team Losh Captains

Benefit Dinner and Concert Roundup

Hello again, Team Losh!

This Saturday (the 18th) was the benefit dinner and concert, and Team Losh had a great time! Not only were we able to raise $1,211.00 for Aloshua, but because of you, we were able to feed everyone at Jacob's Place (the homeless shelter in Searcy), and make a large (and much needed!) donation of household goods (such as disposable plates, and silverware) and canned food to the Ronald McDonald House of Little Rock. That brings our total to over $5,000.00, or enough to cover one month of medication for Aloshua! Way to go team!!!

We have also been able to locate a mechanic who has volunteered to provide parts and his time to make repairs to Aloshua's van. The total cost for his family will now be less than $1,000.That's over $2,500.00 that his family no longer has to worry about. We're still working diligently with various organizations to find a replacement IPV machine, and have had some potential good news in that direction, as well. As soon as we have a solid plan, we will let all of you know. :)

Now, onto the big night!

Aloshua had a fantastic time listening to Broken Chains and Hunter West perform. Everyone kept commenting on how incredibly happy he looked, and he really did. The kid loves music, and he was completely awed that they were there for him. Broken Chains gave him the set of drumsticks Darren Grordon used after their set, and Hunter gave him the harmonica he'd used during his set. Let's just say that Losh was one awed little superhero. He's still carrying them around, and probably will be for a very long time. So we'd like to say a HUGE thank you to Broken Chains and Hunter for giving him such a great memory.

And we'd like to thank each and every one of you, too. Despite a few kinks in the day (our sound equipment donation guy was MIA, the flower shop where we'd ordered balloons closed earlier than they told us they would, and some of our volunteers were unable to make it), the night was a great success, and that's because of you! There were between 100 and 150 of you in attendance throughout the night, and you raised over $1,000.00. That's phenomenal!

We'd also like to thank: Sexton Foods of Bald Knob, Mayflower Foods of Searcy, Renee Reed and Hour of Power of Velvet Ridge, Barbara Louise Salon of Searcy, Which Wich of Searcy, Froyo of Searcy, Quattlebaum Music of Searcy, Mobile Monkey of Searcy, Clark's Drug Store of Bald Knob, Christy Yates, Beautiful Noise of Searcy, Renae Cote, everyone who volunteered their time to work the event or donated, and the Mark Pate Law Firm of Searcy for their generous support.

Below are some of the videos and pictures from the night (in no particular order)!

 

Welcome to Team Losh!

Losh and Abby eating

Donation drop off table, featuring pictures of Aloshua

Losh and Abby playing with Aunt Jessica's phone

Aunt Jessica rocking her Team Losh tee

Courtney and Kaia handing out raffle prizes

A very hyper little princess

Make a Wish table

Ronald McDonald House table

March of Dimes table

Broken Chains performing

Broken Chains table

Broken Chains

Broken Chains drummer, Darren Gordon

Aloshua's grandma, great grandma, and Carmella manning the admissions table

Uncle CJ preparing the drink table

Losh taking a break by the MoD table

Losh's table

Losh and Great Aunt Janice

Hunter West performing

Playing with his drumsticks

Very happy with his gifts from BC and HW

Watching Hunter perform

Some of the crowd watching BC perform

Thank you gifts for the performers

Food set-up

Mom posing at the beginning of the night

The donation to the Ronald McDonald House

Photo board of Aloshua's first year

Thank YOU for helping make such a difference for one very special little boy.

All our love, 

Your Team Losh Captains

The big day is this weekend!

Hi everyone,

The online portion of the Team Losh fundraiser has officially ended, but Team Losh is still going strong. This Saturday, we will be at Bald Knob High School for the benefit dinner and concert, and we are so excited! Hunter West and Broken Chains will be performing for the community, there will be a ton of food, and we will have a lot of information for all of you on the Ronald McDonald House of Little Rock, the March of Dimes, and the Make-a-Wish Foundation.

If you would like to make a donation to any of the three organizations or would like to sign up to volunteer, we will have all of the required information to help you do so. You will also be able to donate pocket change to the March of Dimes in our "Pennies to Pounds" jars, as well as drop off pop tabs for the Ronald McDonald House, and refer the special children in your life to the Make-a-Wish program. We will also be collecting donations of household goods (such as napkins, paper plates, Lysol wipes, disinfectant spray, toiletries, etc) and canned goods and snack foods to drop off at the Ronald McDonald House of Little Rock after the event.

If you would like to sign up to walk with Team Losh at the March for Babies in Little Rock in April, or if you would like to sponsor Team Losh, you will have the opportunity to do so. You'll also have the opportunity to learn more about Aloshua's amazing experience at Give Kids the World through the Make-a-Wish Foundation, and about Baskets of Hope, an organization that provides gift baskets to children at Arkansas Children's Hospital through the Ronald McDonald House of Little Rock.

We are so excited to be able to bring together some of our favorite organizations and help make a difference not only for Aloshua, but for the other children in Arkansas that are just like him. Admission for the evening is only $5 (children 5 and under are free), and that includes food, drinks, desserts, and the concert immediately following dinner.

If you have questions, or need anything at all, please feel free to email us at teamlosh@gmail.com or to call us at 501-348-0904 or 501-247-6711. 

We hope to see as many of you there as possible!

 All our best, 

Your Team Losh Captains

New Event and Test Results

If you follow TeamLosh on Twitter, you've probably already seen the latest, but for those of you that haven't we have a few updates for you!

Larry's Pizza Event:
On February 2nd, the Homeschool 4H club in Searcy, Arkansas will be hosting a fundraiser for Aloshua at Larry's Pizza in Searcy. From 4:30pm to close, Larry's will donate $1 of every buffet sold, as well as all tips, to Aloshua. A big thank you to Amelia and the 4H Club for putting this together for Aloshua. We hope to see some of you there!

Team Losh Compilation:
The Compilation has been sent to authors for review before being sent out to everyone, and it looks great. We are so excited to get it out to all of you! You can expect it to start hitting your inbox on January 31st. Please remember that we need you to forward your receipt or your email address and name to us so we can make sure that you get it! This is particularly important if you donated at an event, by mail or through GiveForward as we may not have your email address.

Test Results:
Aloshua had a lot of tests at his Pulmonology appointment last week and a swallow study with ENT today. We were hoping for good results from all of it, but they just were not in the cards this time around. While the pseudo infection hasn't gotten any worse, Aloshua has a staph infection in his trach and will start another antibiotic for that today. This isn't unusual for Aloshua. He gets staph very easily and is on contact precautions anytime he's hospitalized for his safety simply because he does get the infections very easily and they can get pretty bad for him. So, while discouraging, that news wasn't entirely unexpected.

The swallow study is a different matter altogether, however. During the swallow study, he did great with the solid foods, but aspirated (the liquid went into his lungs instead of into his stomach) both regular and nectar thick liquids, so he has to be put back on honey thickened liquids. He hasn't had to have thickened liquids since 2008, so we were not expecting that at all today. It's a little discouraging because it is a step back by about 3 years, but it's in his best interest, so naturally that's all we need to know to make it happen.

Hopefully the next round of tests will look better and he'll get some good news. It's definitely long overdue for him. But despite all of the recent setbacks and not feeling well, he's been in very high spirits and has been keeping his mom and grandma on their toes as per usual. We can't ask for more than that. :)

All our love, 

Your Team Losh Captains

Skate For Losh: So Much Fun!

The Information Table.

Sunday was the big night: our first community fundraising event for Aloshua, and we weren't at all sure how it would turn out. We got notice about an hour before the event that the weather was supposed to get really bad. Tornadoes, hail, strong winds, torrential rains, flood advisory... in other words, a typical January storm in Arkansas. Despite the incoming storm, we loaded up and headed to Thrills on Wheels for Skate for Losh.

Aloshua and his brother, Kaia, were excited all day about getting to skate. Kaia, protective brother that he is, informed us as we were preparing to leave that he was going to push Aloshua around first, and he was going to tell everyone that they couldn't play with him unless they used hand sanitizer first. While the adults got things ready to go, he and Aloshua practiced telling people to, "Please use hand sanitizer or don't touch my brother." Perhaps not the most diplomatic way of asking, but you have to give him credit for trying, right? :)

Kaia, excited to get to the rink!

Excited to get to Skate for Losh.

The event started at 4:30 and ended at 6:30. Despite the weather, about 55 people were in attendance. We raised $514.47, which was completely awesome. At the end of the night, the amazingly generous Barry Vuletich approached Aunt Fallon and informed her that he wanted to match whatever was donated, bringing the night's total to an amazing $1,014.47. Way to go, Team Losh!!!

Poster and photos of Aloshua announcing the event

Thrills on Wheels was completely amazing through the entire event. We honestly cannot say enough about how great they were to everyone in attendance, and how helpful they were to those of us working the event. If you haven't been to Thrills on Wheels yet and live in the area, you definitely need to check it out.We would love to go back and do another event sometime later this year, and are thrilled to work with the organization in planning this.

The kids played games for door prizes such as a prize pack, and free ice cream, and the lucky winners were Tony, Carly, Jaedyn and Trinity. At the end of the night, all of the adults in attendance lined up so Aloshua could randomly select a winner for an estimated $40.00 worth of prizes, including a gift certificate donated by KJ's Family Restaurant in Judsonia, Arkansas. He did not support this plan and tried to choose himself. Everyone got a good laugh about that, and then we decided we'd probably have more luck if Aybra handed out the goods. She selected Sean as the lucky winner. Congratulation, guys!

Azariyah and Rob getting ready to skate

Azariyah and Aybra playing arcade games.

Fallon and Courtney, posing for a picture at the event.

Some of the kids having a blast

Aloshua posing with Barry Vuletich, who matched the night's total.

Aloshua posing with Tony, one of the prize winners, and his family.

Aloshua skating with Uncle CJ.

Aloshua posing with Carmen and his great grandma, Lois.

Aloshua posing with winners Carly and Trinity, and their families.

Aloshua and Janice cheating at Skee-Ball.

Michael and Aloshua posing together.

Aloshua and his grandpa Jerry, posing with some of Aloshua's ticket loot.

Aloshua posing with winner Sean and his boys, Azariyah and Aaron.

Courtney, Jerry, Aybra and Aloshua taking a break for a photo.

Courtney trying to convince Losh to pick a winner.

Michael and Tabitha.

Cody, CJ, and Jayden posing for a picture.

A very happy, and sleepy little boy.

As we loaded up, the storm really hit, and it was ferocious. Hail, strong winds, heavy rain. The roads flooded quickly, but we all made it home safely with two very tired little boys asleep in the backseat. We cannot wait until Team Losh's next event, a benefit dinner and concert in Bald Knob next month, and we hope to see all of you there!

A huge thank you to everyone who was in attendance, to Thrills on Wheels for sponsoring the event, and to Barry Vuletich for his generous matching donation. With your help, we've raised over $3,000.00 for Aloshua's medical fund, and have gathered over $1,000.00 worth of prizes. Team Losh is blessed to have each and every one of you on the team!

Until next time, 

Your Team Losh Captains