We are still at Baylor in what will be Princess' last day for her infusion before returning home. Beginning next week we should be having Home Health coming in weekly for the next 12 weeks to do her injections. Thereafter, we'll return to Mayo to check on our progress and then return for more treatment.
While we have not seen immediate effects/results in the way of Princess' seizures ceasing, we are hopeful that we can see results soon. The Neuro seems to imply that we may not know or see any changes until about the 6th week, but we sure hope and pray that it would be sooner.
Our time here has been somewhat good. While not our mission, we have been able to spread the word about the Ketogenic Diet and it would appear that the entire Epilepsy Monitoring Unit is on board with learning more and even beginning to implement the diet as treatment. Already we have heard of a nurse that is wanting to learn more and provide a lecture/training session for the staff on the diet. While we may not have had extensive experience with the Baylor Medical System, we have been overly impressed with our experience in the OBGYN and Neuro departments. From Critter's womb-time through delivery and now Princess' neuro experience we have been met with a very knowledgeable and caring staff that shows a desire to listen and learn from the patient. As you can imagine, it can be very frustrating for the patient to meet with a physician that seems to not want to listen or even learn from their patient. So, our time with Baylor over the last year has been refreshing.
Prayers:
- Pray that we will begin to see favorable results from Princess' treatment and these seizures will be gone.
- Pray that Princess will be able to get some great "mom-time" with Critter
Lord willing, may our next post be the one where we can praise God together that Princess' seizures are NO MORE!!!
B
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Praying for you. Please check your emails I sent one to you this morning. Keep looking up....God is with us through this horrible trial. Look at what we have learned..
ReplyDeletePraying that I will be able to help one family learn the things that it has taken us 9 years. You might want to focus some with the POTS...and some known food triggers. Taking dairy and fats out of his diet and adding enzymes and his 2 blood pressure pills have eliminated most of his episodes. Still struggling with other issues but looking at the positives. One day at a time...
Take care and keep us informed :)
Debbi
Dear Meredith, Ben, and Precious Baby Girl,
ReplyDeleteYou are all in our thoughts and prayers. I am asking God to give you success with this therapy!
Lindsey just had her 1st ever, 21 hour- seizure free EEG. It's a good measure of God's grace and a combo of MAD, Zarontin, and a touch of Zonegran (because we could not seem to wean of without seizures.
You have been such a faithful witness during all of this and I pray for God's richest blessings to be yours.
We are getting ready to complete our third cd, and would love to send you guys a copy. Is your address still the same?
Only by His grace,
Dorene