Wow! We have had quite a week. It's amazing how God's timing is not our timing, but he knows exactly what we need and is so faithful to provide what we need in his perfect timing. Thank you to all of our prayer warriors out there who have been asking God to provide our needs. Specifically, this week, our elevator grant was approvedand was ordered today. Along with that, Eric's Dynavox machine which is an environmental control unit as well as communication device was approved which will give Eric more independence in the home and allow him to continue to communicate with all of you. We also had a grant for a fire exit door in the bedroom approved and they already cut it and installed it today (WOW!) We got fitted for a manual chair for Eric on Friday and were told that it could take a while to get it and received a call that it will be delivered tomorrow!
Here is some really exciting news about IPLEX. For those of you who don't remember, Eric and Zach went to Washington DC in November to convince Insmed to release IPLEX for ALS patients for compassionate use as it has proven to aid in improving symptoms of the disease such as swallowing, speaking, chewing, muscle tone, etc. After a long drawn out battle with this, they have finally agreed to release it to 7 PALS (hoping soon to be all PALS for a trial) We just received word today that it will be to our pharmacy TOMORROW! Lori gets to inject this drug daily to Eric and we are praying that it will have positive results for Eric. Praise God for all that He has done for us! We are so blessed!!!!! Words cannot express how blessed we are.
On a lighter note, Maddie lost her first tooth this past weekend and stayed up til midnight waithing for the tooth fairy to bring her "lots of money". The kids are both in Baseball/Teeball and have great teams and coaches. Life is again busy in many ways but life is so good! Have a wonderful week. We really enjoyed the sunshine last weekend and are looking forward to warmer days this week.
Be blessed!
Eric and Lori
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Bring God glory while living with a terminal disease - ALS...
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Thank you for checking out our website/blog. By journaling and updating this website we will attempt to keep friends and family up to date on what is going on inside our lives. Living with a terminal illness (ALS) and demonstrating how God is working in our lives to bring Him glory during this trial. We appreciate your gracious prayers and support during this season of our lives! We Love You All So Much!
DADDY'S LITTLE GIRL
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A MOTHER and SON MOMENT
5 comments:
Eric I admire your courage. A quick note. My father passed away January 16th 2009 from ALS. I pray that IPLEX gives you some relief from this awful disease. Keep up the fight!
Darren Lebel
Wow! all great news...well, except for Maddie losing her tooth.
Go Wings!!!
B&K
What an abundance of great news! Praise God! How exciting! We love you guys! :)
Praise God for great answers to prayer. HE is so awesome! Eric, I pray that IPLEX does give you the relief. You are an awesome testimony!
Robin
I have been following your story online. I got hooked on Kristi's story after hearing it on JQ and then trotted on over to your sight when it was mentioned on she and Brian's blog. I am so inspired by both of you and your families - your faith through everything. I saw you at the concert last night, surrounded by friends so I didn't stop (didn't want to be the crazy blog stalker!), and just wanted to drop a line so you would know that there is one more life you have touched through this. I pray that IPLEX gives you more than we could pray for and that you are cured (Kristi too)! Our God is awesome and we can expect miracles!
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