Team Losh

Sep 29, 2013

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!

Losh Update

Losh is now 8 years old and with a new age came a lot of new changes. Aloshua has been doing really well and we are so proud of his progress. His last illness was in January of 2013 (RSV), and though he required the vent and oxygen, he managed to overcome the illness on his own without needing to be hospitalized. Since, then he has been in good health.

Weight: 17.5kg He is the average size of somebody half his age.

ENT: These guys loved how great Losh has been doing. They did a short cap trial in the clinic and decided that he was doing well enough to be “capped”. This means that he now breathes through his nose/mouth instead of his trach. The cap comes off at nighttime, but he is having a sleep study in August with the cap on. Depending on how well he does with the sleep study will determine whether or not the trach can come out! This is HUGE news. In the meantime, Losh is enjoying the new found LOUD voice that the cap gives him. He enjoys hearing him talk, and other people are able to understand him much better.

Neurology: There is no change here. As long as his shunt is working properly and we don’t have any concerns about Tethered Cord or anything like that then we don’t see these guys often. We typically do yearly scans, but with Losh being on radiation risk (meaning they don’t want to scan him more than necessary) they opted to wait another year unless something comes up.

Rehab: Rehab deals with equipment needs (wheelchair, walkers, etc). However, our PT also deals with our equipment needs as we see them more often. We are in the process of growing his chair (making it slightly larger to accommodate some growth). We are also working on getting him an anterior walker. He has been using a posterior walker for many years and has done well with it, but as he advances we are working towards getting him to using arm crutches. The anterior walker mimics this more than the other. It also allows him to walk faster and more smoothly, and he thinks he is a hot-shot Winking smile

Urology: The only recent testing he had was a renal ultrasound, but we are currently waiting on the results from that. He is getting more aware of his bladder urges and is able to tell me when he needs cath’d, though this isnt always. Due to some prescription hassles he has not been on his medication and there is no difference with or without it. We go soon for a checkup with Urology.

Pulmonary: We saw Pulmonary after we saw ENT and they were also quite impressed with how well he has been doing. Because he hasn’t needed the vent and is now capped, it was decided by insurance amongst other things that he will not be needing the ventilator in the home. Now, Aloshua hasn’t been ill since January, but at the same time, he hasn’t had an illness where the vent/oxygen was not required. This is a scary situation, but I have faith that with the cap things will be better (less trach related illness for one). We haven’t actually departed with the vent yet, but the supply company is already asking to schedule a pick-up date. If he does get sick and need use of a ventilator then we will get one back in the house.

Ophthalmology: We go soon for another visit with these guys. Losh’s vision has been improving with each visit and I expect it to with our next visit. The best thing as of late is that he has been able to recognize many colors (he is color blind in one eye).

Nutrition: We are working on securing a feeding pump to start continuous nighttime feedings. This will aid in him gaining weight, but because he eats by mouth it is a bit of a struggle to get insurance to approve this request. Thankfully, we work with a great nutrition team and they are writing fabulous letters stating why it is medically necessary that this happens.
Overall, there has been a lot of progress for Losh. He is still facing many challenges ahead, but he remains strong and will overcome each obstacle with a smile on his face because that is all he knows.

---

I recently did a short interview with a Ghanaian website about being a single mother with children who have special needs. You can read it here

Thank you all for the continued support for Losh. He appreciates all the kind words and prayers from his many fans and supporters.

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

Announcing Your Prize Winners

Hello, Team Losh!

We are proud to announce that raffle prize winners have been chosen (via random.org). If your name is on the list below, please email us at teamlosh@gmail.com with your contact information so your prize can be sent to you! And thank you to everyone who has helped us raise over $5,000.00 for Aloshua!

Kumiko Yada - $10 Starbucks Card
Barry Vuletich - $10 Starbucks Card
Brenda Henry - Autographed copy of the Fade manuscript by A.K. Morgen
Kelly "Crusher" - Arkansas Traveler's Autographed Baseball
Sue Johnson - Scrapbook Kit
Jennifer Griner - Beauty Bear Bows
Loni Rowe - Team Losh Tee
Laurie Pentis - Team Losh Hoodie
Elizabeth Connolly - $10 Starbucks Card
Melissa Benson - Neck-savers
Elisabeth - $10 Little Caesars Card
Anna Scranton - Hour of Power Fitness 1 Month Membership
Renae Cote - Fade ebook by A.K. Morgen
Raye Roeske - $10 Gamestop
Laurel - $5 Starbucks Card
Daneisha Inman - $5 Starbucks Card
Brenda Henry - $20 Barbara Louise Salon

Congratulations, winners!
Your Team Losh Captains

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)!