Back in the Hospital with Ellie

It seems I have some down time to sit back and get some of the things completed I have been trying to accomplish while doing several other things at the same time.

Over the past few weeks we have been struggling with kinks in Ellie's J-Tube and fighting to keep it going long enough the DME would deliver the correct feeding tube brand that she needed. After fighting with them, calling our case manager, and the national representative that has been assigned as a liaison in her behalf, we finally have the right feeding tube.

This feeding tube has only been in our house maybe a week and now her current one is kinked up to the point of non-use. So here we sit at John Hopkins Children's Center once again waiting for an IR placement on the schedule. 

Knowing her tube was giving serious issues I had been trying to keep her extensions and button taped and secured in place preventing any movement. Ellie knew she was not supposed to remove the tape without letting mom or dad know first. However, in her excitement to play with her friends she had removed the tagaderm and duoderm without letting us know and ran out the door attached to her backpack and extensions.

The movement of playing, being a kitty, and other normal 7 yr old play, her j-tube became twisted and kinked. Yesterday her alarm began giving alarms at odd times and more frequent that normal. By 5pm her j-tube was twisted and kinked enough that even the syringe would not break the kink loose. About 5:30 her GI Dr. was emailed and we were on the road shortly after that. 

This time to Ellie's excitement she was told she was going to be spending time until she got her new button. That excitement quickly disappeared once she found out staying also meant getting an IV. 

Ellie did very well with her IV placement and while not happy, the nurses were able to get the IV in on the first try. She is doing much better with this aspect. Not long ago she was not able to be in the room when her brother got an IV, because she would have panic attacks just seeing the kits and seeing him get blood taken or IV's placed. 

For now she is still sleeping...

End of School

School has officially come to an end for the kids and they are so excited for summer break.

This year has been fun, very difficult, heart breaking, and full of total excitement for each child. They have each learned and grown in ways the Lord only knew they would.

Celidah had successful 10^th grade year and once again was an inspiration to many of her friends and others around her. She attended prom with a prom here in Maryland at another high school. She grew individually as she made her own prom dress that would match the standards set by the church for the young women. She wore this dress again during graduation as she helped hold one of the arches the graduating seniors would walk through.

Celidah participated in the fall musical Footloose and the spring play Up the Down Staircase. As the cast prepared to perform their hearts ached as they had discovered their favorite drama teacher would no longer be teaching drama. Classes had been swapped and she would be teaching something else.

However, at the end of the school Celidah was once again thrilled to discover one of her all time favorite teachers would be teaching her Creative Writing class.

Jade throughout the year has struggled in school as many kids in middle school do trying to discover exactly where her place really is. Personally she too has grown and received awards from school for the most improved student in the AVID program and an award from band as well. Her flute playing too has improved. Jade has gained self-confidence and poise throughout the year.

Her ability to communicate with others her needs and the needs of others is also continuing to improve each year. To think when she was a young toddler, and diagnosed with severe autism, that we were told she would never function in society. Yet, here she is in middle school with very good grades, and learning to help others, goes to show that children determine how high soar. Jade is my eagle and one day will truly do great and amazing things.

Corbyn started out strong then somewhere around the middle of the school year he started with funny thinking. He thought he could get lazy with his school work (like in elementary school) and still pass. Well, we fought with him, let the school give him referrals for missing homework, and then at one point I let his teachers know there was nothing more I could do at home. I had spent weeks fighting already, and had 5 other kids to help with homework. At this point his grades dropped off the scale and the next quarter he did not know how to handle the thought of failing school and being a 6^th grader again with his younger brother.

He had no idea that in middle school that one quarter of failing grades was enough to cause a child the threatening of being held back. The next shock for him was failing two playing tests in band and being told if he failed two more at any time during the rest of the year he likely would not be able to be in band the following year and if he ended the year with a failing grade he would not be in band at all.

Suddenly he realized (almost to late) that class and homework are very important and must be done. Not only were they important but so was instrument practice. Without daily reminders he was practicing a couple times a week instead of only on Saturdays. His homework was still somewhat a battle but at least he was doing much better.

Jairon LOVED school especially playing the clarinet. Without ever being asked he always came home and practiced every day after school and often we would have to tell him it was time to stop and get chores dome. The band teacher loved how fast and far he was progressing and helping to push the other child playing the clarinet as well. With these two they pushed the other band kids and got to play harder music at the end of the year concert.

He did well in school as well and has lots of new friends here in Maryland now. Jairon is quite the reader (like the other kids) and getting books out of his hands is sometimes hard to do. One of Jairon’s favorite field trips during school was a three day camp called Harford Glenn. There all the 5^th graders learned about Maryland, conservation, and nature specific to this area. Jairon also participated in the National Cherry Blossom Parade in Washington DC as part of the elementary school choir.

Zachariah has been learning to play the recorder this and for band next year wants to be part of the percussion team. During the 4^th grade year in elementary band level, the kids learn to play the xylophone/bells first. When Celidah was in band in Colorado we found a used xylophone. Zachariah is excited because he will be able to practice on the xylophone this summer and next year once band starts.

This year in school Zachariah did very well. Zachariah began the school year with his reading level below 3^rd grade and he struggled to keep up with the rest of his class. He continued to work hard on his reading and practiced with mom and dad. As we read with him, asked questions, helped him increase his comprehension of what he read, he continued to improve. Suddenly, his effort and hard work paid off as his reading levels began increasing. By the end of the year Zach’s final reading scores reveal he is now reading at a 5^th grade level. Not only has his reading level increased but so has his love for reading.

Chantelle continues to struggle with her health issues. During this school year she has continued to miss excessive amounts of school due to illness, ER trips, and hospitalizations.

Despite all this, Ellie is a child found with a smile on her face especially around others. She does her best to make those around happy. She also strives to help others around her see the best in everyone. Currently, one of Ellie’s best friend’s is a little boy who moved here recently then joined her class. This little guy uses a wheelchair, and like Ellie, is a very happy little guy. She has discovered that reading is awesome and is trying her hardest to read the same books her biggest sisters are reading. Ellie looks up to both Celidah and Jade in nearly they do.

This year we have watched Ellie become much more independent as well. She has learned how to start, stop, prime, and fix flow errors with her pump. She has also learned how to flush her own G and J tube extensions and takes great pride with her newest skills. Ellie continues to work hard at being brave each time she is in the ER or readmitted and needing another procedure.

This year only four of the kids took dance classes and participated in the dance recital. Jade, Jairon, Zach, and Ellie dance while Celidah participated in drama and worked on her art and Corbyn participated in the Robotics Club.