Wish Big

I'm glad to finally share some of the joy that our family has been gifted. A year ago this month Hayden was granted a Make-A-Wish. It was just prior to his third spine surgery.   Little did we know that the rest of the year, he would have such a rough go medically and yet we feel fortunate to have sustained and endure many more hospital stays (that were not all positive) and surgeries.

The good news of the wish gave him much to talk about and much to look forward to. He would tell all of his nurses and doctors about his treehouse during each stay at the hospital.

Here we are a year later and construction has begun.

Make-A-Wish grants wishes for children with life-threatening medical conditions.  http://cstx.wish.org/

 

When he was interviewed during the wish process, he expressed a great desire to have a treehouse that he could throw airplanes out of the window.  A treehouse for someone in a wheelchair is additionally complicated. Fortunately, we have a great tree and a great space. The kids can't wait to wheel up into the new tree house in the 200 year old oak tree. It has the best views and you can see downtown and the highschool football stadium from up there.

The ramp will be straight out.  If you look closely at this picture you can see the red strings that outline the length.

Before we said anything, we got approval to post on social media. We are thrilled to show you the progress. Every day Hayden is overjoyed as he sees it coming along.  He has talked about it at his school to all of his friends into his teachers. The principal had suggested if they finish within the school year, his class can do a special field trip.

They have worked steadily through the weather and impressed me. Austin Tree Houses https://www.facebook.com/Austin-Tree-Houses-345741055502353/?fref=ts is donating time and expertise and Tri Supply (whom I used for our home construction) has donated the windows and doors. I don't have any more of the information for most of the donations that go into this. But for all those that have helped make this possible, thank you!

However, they are needing volunteers from the community to help construct the most important part which is the ramp. We will be digging holes on Friday afternoon for the post to support the long ramp.

It is the greatest wish and long-term gift as the treehouse will get to continue on and bless our entire family. The timing couldn't be better as he will have to undergo extensive 12 hour surgery this summer where he will have a 6 week recovery.  Instead of dreading the summer, he will have the treehouse to focus his energy and good thoughts to get back to playing independently.

Baltimore Feeding Therapy Weeks 6&7

This is our last week in feeding therapy in Baltimore!

By the time we finished up this program will be approaching eight weeks of therapeutic time due to participating on the weekends.  

I recently had a friend ask if it seem like it had gone fast. I'm not quite sure on how to answer this. The weeks have gone fast but the days have been long and hard.  We have had the majority of Sundays off and Thanksgiving and Christmas day only.

Instead I would choose to focus on gratitude and how through my insignificant struggles I more fully appreciate the everyday comforts of home.  

I appreciate that we got to spend Christmas with my mom who drove up from South Carolina.   She gave us the boost we needed for us to continue on for one more week.  She got to participate in our half-day program on Saturday after Christmas to see what it is that we have been doing.

Getting a post-Christmas hair cut 

I appreciate the people that work at the subway station and keep the elevators clean (which is not often the case) and working so that we don't have to carry the wheelchair down the escalators.

I appreciate my apartment shuttle driver that is able to offer us a ride to the grocery store and many trips to the hospital.

I'm grateful to live in a safe and secure apartment with great views.

I appreciate the free bus that helps me carry the groceries back to the apartment with Hayden that is also wheelchair accessible despite the less than savory individuals accompanying us along the way.

I am grateful that Scott has been able to safely walk back-and-forth from work every day.  

I'm grateful that we got to spend time in the city where Scott step father Barry grew up.

I'm grateful that he has the opportunity for employment and that he has a good education with an able body and mind.

I am grateful for a city that has good public transportation and that I don't have to rely on it at home. I will appreciate having my own vehicle to go anywhere I want to anytime more than ever after two months of not driving.

The solar power harbor cleaner I got to see while walking home one night.

I'm grateful for the highly educated caring staff at Kennedy Krieger arranging for us to see many specialists outside of clinic and get other opinions on a moments notice.  Due to the skilled specialists at Kennedy Krieger, we were able to get training on a separate program for neurologic bowel which eliminated our need to go to Cincinnati for a 10 day training program.

I'm grateful for a patient dependable nanny that has been creative and keeps our children occupied when there is very little space for them to run around during the day.

I'm grateful for the volunteers and charitable organizations that remember families in the hospital. I'm grateful that we got to do sibling Christmas gifts from the hospital for Hanna and for Garrett and not only Hayden. They truly understand how parents are unable to plan any Christmas for the family when you have a child in the hospital.This time here we will remember always. We may not remember the gifts but we will always remember how we felt and the kindness that was shown to us.

I am grateful to have been adopted by church family members. I'm grateful for the people that don't ask how to help but actually show up and help in ways you don't know you needed.  I am inspired by these people and will have my eyes opened to be more of the pay it forward type.  I'm grateful that Hanna was picked up for an activity days program at the Inner Harbor Ward. 

I'm grateful our kids each have their own bed in our apartment in one room. I'm even more grateful that they will each have their own room to not bother each other when they go to sleep every night at home.

I am grateful that our apartment has a stackable washer and dryer so we don't have to go to a laundromat. I will be extremely grateful to return and have our full-size washer and dryer.

I am most grateful for the investment of time that we've seen in the success we've measured for our family and that we get to return home successfully completing this program. 

Hayden will complete the program accomplishing his goals of being able to eat socially age-appropriate food with the setting of his family and peers without vomiting.  He is also able to tolerate cleaning his teeth.  We will have some ups and downs as we transition the program from the rehab to our home environment. He has now been introduced to a dozen foods that he now eats orally that he didn't before we started.  It is a joy and shock to see him initiate new food that he enjoys to eat with confidence thus reducing our fear of vomiting and choking.

We fly home on New Year's Day and we can't think of a better way to start 2016! Happy New Year!

Baltimore Feeding Therapy Week 5

"Christmas is not a time nor a season, but a state of mind. To cherish peace and goodwill, to be plenteous in mercy, is to have the real spirit of Christmas."

"No person was ever honored for what he received. Honor has been the reward for what he gave." -Calvin Coolidge

*Formatting is off when uploaded on tablet or phone. Please click on the pictures.

We have been given so much from the people here in Baltimore especially at KKI.  Because we have been so busy with focusing on our family we've had very few distractions from the true meaning of Christmas.  However, we sure do miss a lot of those distractions that are the comforts of home.  It is only a few short weeks before we get on our flight home and celebrate 2016.

Merry Christmas from our beautifully decorated Baltimore apartment lobby.

Presents galore.

Our week started off great as KKI gives so many surprises of Santa and presents during this holiday season.

The best part about not being able to bring everything back on the airplane is that we will get to donate most of the presents back to the hospital when we leave.

Hayden was out of his mind to get a football and Ravens jersey. It was quite awkward when he went up to the football coach and said his favorite player is Tom Brady....thanks to Scott

The little Ravens football players are so sweet to Hayden.

This was Hayden's first time getting to play football with a group of his peers. He loved seeing all the boys come to the hospital.

This week was a roller coaster of highs and lows for success and medical setbacks. But it seems triumph can't be without struggle. Last week the physical demands of continually lifting Hayden and his wheelchair put my back out. I have been recovering daily trying to keep myself healthy for both of our mobility.  As a caregiver to someone that is paralyzed this is a normal, frequent problem.

Monday was a wonderful opportunity that was coordinated to meet with spina bifida clinic (outside of our feeding clinic) to get Hayden started on the Peristeen program.   I have been working on getting him on this program since July 2014 with our gastroenterologist. The supplier finally shipped it to Austin in November and the GI shipped it here. Oh the things that make a special needs mother get excited!

By Tuesday, he started feeling very ill. This is Hayden taking a break and getting a sweet nap in one of the clinic rooms due to his exhaustion. Not only do we have to work with feeding therapy rehabilitation, but Hayden's complex medical needs get in the way of some of our progress. His reoccurring infection that he has had going on for the past several years flared up and kept us all awake for several nights in a row due to extreme pain.

The wonderful doctor overseeing the program collaborated with our urology doctor in Austin to get him treatment outside of the ER.  This infection is what landed us in the hospital for the month of October. An anabiotic is currently keeping it at bay but he will have another appointment at Johns Hopkins with the urologist hopefully within the next two weeks. A few years ago he had to have surgery to try to control the infection. Now the infection is back and it is a very rare condition. We are hoping and praying to get a second opinion.  The only successful option may be to undergo surgery again for his epididymitis. 

These specialists are hard to come by especially during the holiday season.  The continued anabiotic seems to have control the infection so we were able to continue our course with the feeding clinic throughout the week.

Wednesday:  Hayden lost his first tooth!!!  He was a champ. No fussing or crying and hopefully this is a sign of how easy the rest will be.

By mid week the clinic integrated me into administering and working together with Hayden in a more typical setting for feeding. After watching for weeks on a two-way mirror, I am now being trained and incorporated into the process. We hope to continue and make his progress successfully implemented at home.

His behavior was not what I expected when I first sat in and observed. By letting me observe and be in the room he refused all food. He gagged and vomited and spit.  He acted up. I felt extremely disappointed and that all of our weeks of work were at a loss.

After each session he noticeably got better at accepting new foods and not refusing or acting up. By implementing the new applied behavioral analytic techniques (ABA) they have taught both of us how to modify our interaction.

Our biggest successes have been with texture and neurologic sensory issues. Hayden has never been able to successfully chew food with his back teeth. He has never been able to brush his teeth without gagging or vomiting or without some sort of restraint. He has never had a dental procedure without anastethsia. 

He is now brushing his teeth independently. That alone was one of my biggest goals coming to the program. My second goal was for him to be able to eat socially without vomiting. He is now eating some regular textured foods. Those include include waffles, bread-and-butter, muffins, pancakes, and grilled cheese.  I cannot tell you the joy that is overwhelming by seeing the successes paid from all of our sacrifices and hard work.  His muscle strength in his oral motor and fine motor techniques has been strengthened through this intense repetitive therapy and his texture sensitivity issues have been desensitized.

Hayden is proud of himself. Hanna is proud of him and his eating has eased her anxiety being around him at the dinner table without having to worry about him vomiting. We are able to enjoy the possibility of going out to a restaurant together as a family.

I feel peace with our choice to come here knowing that we are here for a reason with the great goal of independence in  eating and further improving quality of life. We work hard and reward by playing hard.

"...the essential thing in life is not conquering but fighting well.”

-Pierre de Coubertin founder of modern Olympic GamesOur fantastic nanny lightens my burden and eases my mind knowing that my other two children are not left out of the holiday fun. She brought her own supplies to help them make gingerbread houses during the week. Hanna had been wanting to do this all week. The children don't have a lot of opportunities to run around independently living in an urban environment. I'm so grateful that our nanny looks for opportunities to encourage them to play and sends me these adorable pictures. 

On Friday the children were rewarded for their hard work and good behavior for the week at the children's museum. 

Baltimore has a fantastic three-story children's museum next to our current apartment. The kids absolutely loved it and have been wanting to go since we moved here.

My future H-E-B shoppers.

Hayden and Garrett taking turns at the Volkswagen station. Driving and filling up the car with gas. It's a great exhibit.

On Saturday, Scott participated in the feeding session with Hayden. Santa seems to make his way to the hospital frequently this season.  KKI is a long-term rehabilitation hospital working with kids with chronic long-term and possible life-threatening medical conditions.

At the wonderful famous Phillips restaurant in Baltimore harbor.

It has blown my mind to see Hayden actually eat more food than Garrett or Hanna. This is the first time he has ever eaten a grilled cheese sandwich or ordered and actually eaten from a kids menu.

We all loved our food and we will have to go back to enjoy their wonderful crabcakes and oysters with my mom who will be coming to surprise the kids for Christmas!!! We haven't seen her in over a year.  We had planned to visit her at her new home in South Carolina for Thanksgiving but due to the hospitalization, we could not make the trip. She will be making a special trip to be with us through Christmas and we can't think of a better way to conclude our time here in Baltimore.

4 Weeks in the Hospital 3 more to go!

Hayden is becoming an eating machine!  I would have never thought to dare say that.  Nor did I ever think that it I would feel that the time was going by fast.  The prayers being offered on our behalf are felt as they strengthen and lift us to continue on this journey.  

Hayden has mastered several puréed foods, yogurt, sweet potatoes, apple sauce and peaches.  He is still working on green beans and many more veggies, meat and fruit.  He has also discovered that he loves bread and butter.  He has also eaten cheese cake, a chicken nugget, deli meat and cheese sandwich, chocolate cake, waffles, pancakes and grilled cheese.  We came in only eating chocolate and chips.  Not well with either and vomiting regularity in social eating situations with lots of distractions. 

He is developing more oral strength and the gag is desensitizing.  He still gags occasionally and we are slowly building his skills and confidence.

We started the week with a welcome visit from extended Batimore family.  We so rarely get pictures of Garrett not because we don't cherish this little guy but because he is now a wild little almost 3 year old.  Center of our attention.

Hayden made his first menorah to wish our Jewish friends a happy Hanukkah.

Monday set the tone for a fantastic week with this visit.  

Enjoying the beautiful decorations at the hospital. 

Hanna was invited by the behavioral child psychology group to help participate in Hayden sessions.  The goal is to make us successful at home and in our normal environment.

Reading the Little Engine that Could.

We found the children's library where we took a break between therapy sessions for a quiet moment.

Every day this cute girl takes time to do her homeschool work to keep her on track so she can return to her class at the start of the year. She has sacrificed being away from her friends during this holiday season. She sure does miss them.

Although she didn't get to perform any school productions, she got to perform centerstage at the 15th annual Kennedy Krieger Institute Christmas party.

All of the children had a wonderful time and got presents from Santa and a visit from the Orioles baseball team mascot.

She loves the fun and attention she has had at KKI.

Today the kids made me a special pancake breakfast. I could hardly believe what I was witnessing and tasting.

It was a special treat to have Hanna participate in the therapy sessions the last two days. We were surprised to see Hayden have so much progress with his big sister. It ended the week on an extremely positive note.

Taking a few moments in the meditation room to pray, ponder and reflect on our experience here.

Hanna is keeping up on her most important reading.

That's a full mouth of self made grilled cheese sandwich!

This week has been fantastic!  

We were saving the trip to Hershey, Pennsylvania for a celebratory graduation trip. Since he has had such success, we're heading off tomorrow to celebrate early as everyone here advised us to go see the decorations at Christmas time.