Its been awhile since mom updated, after reading this ginormus post you will understand why. I have no idea how they can manage to keep doing the things they do, Well actually I do know how< but WOW! WOW - I have a lot to update! First, let me start with the following scriptures:
Phil. 4:13 ~ I can do all things through Christ who strengthens me.
Matthew 19:26 ~ With GOD, ALL THINGS ARE POSSIBLE.
I will start with last Thursday. We had a 'Family Meeting' with all of the Therapists, Social Worker, Education Rep and Raymore School District to find out how Matt is doing and what other programs, equipment, etc...he needs. It was like being at a Parent/Teacher Conference. It was a very positive meeting! Matt is doing well with each Therapist and each Therapist told Bob and I how impressed they are with Matt's progress. Matt started with his regular Physical Therapist last Monday (she had been on vacation) anyway, she only worked with Matt for 4 days and told us she could already see improvement in those 4 days! Each Therapist is also doing everything they can to get Matt any equipment he needs. One is a new bed, one that will be more comfortable for Matt. The bed he has now, we have to re-position Matt every 2 hours (including thru the night) doing this prevents Matt from getting bed sores. Another device is a communication device helping Matt communicate easier - which will help all of us understand him and keep everyone from getting frustrated. Matt still has to be fed thru his g-tube, although he can eat (be fed) a little bit of solids: pudding, baby food (fruit) and yogurt. His issue is still swallowing - meaning he is not ready for solids! The Therapists have also increased Matt's therapy hours from 3 to 5 hours a day! That is one reason why he needs to get more sleep! Some other great things that help make caring for Matt easier. PaPa & Nonnie brought over a shower chair! Their neighbor, Darney brought it home for us to borrow until Matt gets approved for his own. He was so happy to take a shower because for the last month Bob and I have been giving Matt 'bed baths'. Thank you Darney!
On Wednesday Nonnie & PaPa came over to stay and help me with Matt while Emileigh & Bob went to a taping of the show 'Chiefs Locker Room' show on Metro Sports. Our friend Carol set this up for Emileigh. Emileigh is wanting to go into Sport Reporting and possibly be an Intern for the show. So, thank you Carol. While they were gone, we watched the new Transformer movie.
On Friday - PaPa & Nonnie brought over another item that will help make Matt's progress...a hospital table, one he can use while he is in bed. Matt loves it - he can use his lap top on his own (he still needs help) but, it does give him some freedom. We will be able to help him read and play games, etc...Eventually he will be able to 'groom' and 'feed' himself, once he gets more feeling and movement in his hands. Nonnie's friend Connie loaned the table to Matt - thank you Connie!
Saturday - Nonnie & PaPa loaned me their car to take Emileigh to Des Moines to meet her best friend Heather for a day together. Heather, Jeannie & Courtney met us and shopped and had lunch. We didn't want the day to end. Bob stayed home with Matt by himself. They had a good day and watched College Football ALL DAY!
Then, on Sunday, Unk Jim took Emileigh to the Chiefs game to watch them play her favorite team, the San Diego Chargers. On Monday Emileigh and I went to K-State with Carol, Trey, Jo & Ginger for a Senior Day visit to the campus. We had a great time. Thank You Carol for organizing this and driving us to Manhattan, KS. Again, Bob stayed with Matt by himself.
On Monday (this is going to get to you) because it got to me and Bob. Matt told Bob he thought the tumor was growing! Hearing that was like someone punched me in the stomach! I know we don't know for sure - and we won't know until Matt's MRI on December 2nd. Here is the thing - unfortunately, Matt has said this before and each time he has said this, he has been right. We are going to request more prayers for Matt to be wrong! I told him I thought it was just his brain getting used to the all of the tumor not being there.
Another issue we are having with Matthew...he is afraid of going to sleep and falling out of his bed. He doesn't get enough sleep, wakes up around 5 or 6 every morning and won't go to sleep until 11 or 12 each night. We have a call into the Dr for a possible sleep medicine to help him. Because he is not sleeping, we are not sleeping. Matt won't even rest/nap during the day. We are EXHAUSTED and Matt can't give his full potential during therapy. To be honest ( and I hope you don't mind ) I've been not wanting to say this - but, it's like we have a newborn again. So, another request, please pray for Bob and I - for patience and understanding to make all of this work.
On Monday - Matt got a surprise gift from a fellow Chiefs Fan and one of my wonderful friends, Coach Justin Argraves. He sent Matt a Personalized Chiefs Jersey with Matt's favorite number "18" and his name on the back - M. Hernan! Thank you Justin. Matt wore it to therapy on Tuesday and made sure I took a picture of him wearing it! You made his day! Thank you to Nonnie & PaPa for all they did for us last week, to Carol for organizing the events for Emileigh, for Connie & Darney for tools to make Matt's life easier. To Unk Jim for taking Emileigh to a game. Also, to all of the Chemo Angels, Friends and Family for thinking of and praying for Matt and Emileigh. To Bob for staying with Matt by himself. It is a big job and responsibility.
One more thing - Traci Forester is working on a Fund Raiser for Matt's Medical Fund. She is looking for consultants/representatives selling items like; tupperware, candles, jewelry, etc... Traci's email address is: bluespringskid@comcast.net. Contact Traci if you would like to participate or know of someone that would be interested in participating.
Thank you for your prayers and positive thoughts - they are very much appreciated.
