Appointments and MRI in 3 days!

Gavin did great at all of his appointments Thursday.  We were super busy!  In a nutshell, his neuropsychologist thinks he is amazing, he has new foot orthotics that were built into his new shoes, and his history/physical looks good.  We were at Minneapolis Childrens from about 11:30 - 3, and I think about 20 people in the halls knew Gavin and said hi!  He is a little celebrity there.  We had some time before his orthotics appt to watch the "Dude" in the star studio and Gavin waited until he could talk to him.  That guy is so awesome.  Gavin could chat with him for hours, their personalities match so well.  They both just want to have fun and make people smile!

Gavin got to see Katie again, who is a fabulous!  Katie works in PR for Childrens and organized the CA trip and The Doctors show so we got to know her well (still do not have an air date for the show, will post when I do).  She introduced us to many other people from the Childrens Foundation.  Such nice people!  I have to say, the entire day was pretty great, seeing how many people Gavin has reached and the impact he has had on the hospital and also in pioneering care for all children.  I loved hearing how great he looks and how smart he is, because even though I know it, I tend to focus on what obstacles still lie in front of him.  Put Gavin next to classmates, and he is behind - but put Gavin next to all that Gavin has endured - he's AMAZING!

Gav had baseball again this morning, he loved it!  He played at the park afterwards, came home and played outside with Grace and Gage.  I sometimes just sit and watch them or even close my eyes and listen to all of them.  I remember the days when the reality was, Gavin would not be here to grow up with his siblings.  I longed for him to just be a child and play.  I am getting that.  I am  thankful to God, and Gavin's doctors, nurses, medical staff, family, friends, school for always standing behind him.  Tuesday is the MRI/MRV.  We hope to get good news and that we are refueled to march on with a plan for summer and beyond.  Gavin is getting sedated for the scan because we want really good pictures and it's a long one.  I hate watching him get sedated, even for something minor because it brings back so many horrible scary times :(

Warning - brain talk approaching... I have learned quite a bit about the brain and have some exciting news about Gav's brain. Last time Dr. A (neuropsychologist) saw Gavin was August.  At that time, she diagnosed him with Alexia - or pure word blindness.  Even though he knew letters and sounds, he would often make mistakes identifying letters and could not sound a word out.  He only could "see" words that his right visual brain remembered (sight words).  Now, she observed Gavin identify every letter, sound, and pronounce words, a skill she did not know would recover (left brain stuff that was weakened by tumor).  I am so thankful to Mrs. Barrientes, Mrs. Olson and Mrs. Aldrich at Ramsey for this.  They have essentially started over to reteach him these skills.  Dr. A said she is very confident Gavin will continue improving with reading, because the fiber tracts have strengthened (similar to when they strengthened allowing him to "hear" words in 2012).

This was really good news to hear!  Dr. A was very pleased with his progress.  She also conducted some tests to look at his visual/spatial skills and he did well on those.  The kid has a right field cut - 45 degrees, and also cannot physically move his eyes down, but he was able to complete these tests as if he did not have these deficits.  He just adjusts, and finds a way, it is incredible.  Ok, so if his fiber tracts have strengthened, allowing his left brain to see words, and his visual spatial skills are there, why does he struggle with taking in information, processing his thoughts and expressing those thoughts (this shows up in just about everything, especially math word problems, multi step processes, writing to name a few)?  Dr. A explained after doing some observing and tests, that his working memory is the reason.

Working memory is actually in the frontal lobe, far far away from Joe Bully.  But, it gets input from many sensory areas (visual, auditory) near the back of the brain, pretty close to Joe Bully.  So, the area mainly responsible for working memory is intact and perfect, but the fiber tracts that send information to that area are weakened.  Working memory helps us take new information, hold it- manipulate it - and use it in the short term.  Dr. A explained that Gavin has proven to us over and over again that he is capable of strengthening white matter/fiber tracts.  She gave us great information and resources about improving his working memory, which would improve many things for Gavin. She is very optimistic about Gavin being able to improve this.  We are going to be doing a working memory brain training program for 8 weeks, called Jungle Memory as well as many home exercises to work on this.  Exciting stuff :)

Thank you for your continued support and checking in on Gavin.  I hope to have awesome results next week for all of you :)


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Comments

2 Replies

Jim Maydelle Fennick
By Jim Maydelle Fennick
This is all amazing information! What great news for Gavin and all of you that he can retrain the parts of the brain that have been weakened! Thanks for being willing to write all that info down for us so that we can understand how Gavin is doing.

Summer is not far off and you will soon be able to sit and watch and/or listen to your amazing children play with each other! Yea for summers. Jim and I remember what great family times we could have since we were both teachers.

Love and prayers to all,
Maydelle and Jim
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1 person hearted this
Deborah Scully
By Deborah Scully
Great news. Way to go Gavin. Praying for the MRI.
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