"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.
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 Games
Our 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.
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