I have an update from Tammy with some pics from a family vacation. But first... For those of you in the Iowa area. Mark August 8th on the calendar. We will be having a benefit for Taylor at the golf course in Center Point. Details to come. Also, we still have Pray For Taylor t-shirt available. See the order form in the previous post. All proceeds go towards Taylor's care.
And above all else... Please continue to Pray for Taylor and her family. With God, all things are possible. God Bless.
- t
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Hello everyone,
It's been a while!!! Taylor is continuing to take baby steps. Since my last entry, Taylor has completed 11 sessions in the hyperbaric oxygen chamber. Jeff and I have noticed Taylor has started making more cooing noises and has cried 3 times now. Personally, I feel the oxygen therapy is working. However, I am trying to stay low key until she has completed all 40 sessions. Currently, Taylor is not going to Wilmington anymore for the sessions. We found out that the longer you go, the more results you see. Looks like, after 40 sessions she would need to take a 3 week break and then do 40 more. Because I will be going back to work in August and the aggravation of trying to travel to Wilmington 3 to 4 times a week, Jeff and I have decided to purchase the HBOT. I know we're taking a huge leap of faith, but I really think this is helping her. We are not expecting an overnight change. But, in my opinion anything that can help Taylor is well worth all the money in the world!!!
Friday, we will travel to Duke for neurology. We are hoping to get another EEG, because Taylor is starting to show signs of having more seizures. She has had 5 seizures that have lasted about 4-5 seconds and 1 that lasted about 20 seconds. We are also hoping to schedule another MRI. We were very disappointed with the neurologist in Greenville, as our last conversation was over the phone in January, in which the doctor told me she thought Taylor's biggest problem would be her vision. Obviously, Taylor has a lot more issues than her vision.
Taylor also has an appointment on the 23rd of this month at the feeding clinic in Greenville. I am hoping they will do another swallow study to see how she can tolerate thin vs. thick liquids. Taylor has had nothing by mouth since we left the hospital in April.
Our nursing hours have been down graded to 4 hours a day, 5 days a week. We also went from a LPN to a CNA. We were very disappointed to lose our awesome nurses we had developed a relationship with. They were great with Taylor and also getting used to our naked boys always running through the house! We have sent 3 letters from our doctors to our case worker explaining why Taylor needs a LPN vs. a CNA, and are awaiting their decision. Although, the CNA's that have been in our home are very nice and good with Taylor, they are not allowed to give any medication via G-Tube and are not allowed to make judgment calls like, giving oxygen or suctioning when needed. Taylor has a strict medication schedule and if we don't get our nursing requirements changed we are in trouble!!!
This experience that has just begun for us and has been so life changing. We all have our weak and strong moments and learn more and more about the system everyday! Please continue to pray for Taylor and for Jeff and me to continue to have strength to rely on each other. Thanks for everything!
Much love,
Tammy
And above all else... Please continue to Pray for Taylor and her family. With God, all things are possible. God Bless.
- t
----------------------------------------------
Hello everyone,
It's been a while!!! Taylor is continuing to take baby steps. Since my last entry, Taylor has completed 11 sessions in the hyperbaric oxygen chamber. Jeff and I have noticed Taylor has started making more cooing noises and has cried 3 times now. Personally, I feel the oxygen therapy is working. However, I am trying to stay low key until she has completed all 40 sessions. Currently, Taylor is not going to Wilmington anymore for the sessions. We found out that the longer you go, the more results you see. Looks like, after 40 sessions she would need to take a 3 week break and then do 40 more. Because I will be going back to work in August and the aggravation of trying to travel to Wilmington 3 to 4 times a week, Jeff and I have decided to purchase the HBOT. I know we're taking a huge leap of faith, but I really think this is helping her. We are not expecting an overnight change. But, in my opinion anything that can help Taylor is well worth all the money in the world!!!
Friday, we will travel to Duke for neurology. We are hoping to get another EEG, because Taylor is starting to show signs of having more seizures. She has had 5 seizures that have lasted about 4-5 seconds and 1 that lasted about 20 seconds. We are also hoping to schedule another MRI. We were very disappointed with the neurologist in Greenville, as our last conversation was over the phone in January, in which the doctor told me she thought Taylor's biggest problem would be her vision. Obviously, Taylor has a lot more issues than her vision.
Taylor also has an appointment on the 23rd of this month at the feeding clinic in Greenville. I am hoping they will do another swallow study to see how she can tolerate thin vs. thick liquids. Taylor has had nothing by mouth since we left the hospital in April.
Our nursing hours have been down graded to 4 hours a day, 5 days a week. We also went from a LPN to a CNA. We were very disappointed to lose our awesome nurses we had developed a relationship with. They were great with Taylor and also getting used to our naked boys always running through the house! We have sent 3 letters from our doctors to our case worker explaining why Taylor needs a LPN vs. a CNA, and are awaiting their decision. Although, the CNA's that have been in our home are very nice and good with Taylor, they are not allowed to give any medication via G-Tube and are not allowed to make judgment calls like, giving oxygen or suctioning when needed. Taylor has a strict medication schedule and if we don't get our nursing requirements changed we are in trouble!!!
This experience that has just begun for us and has been so life changing. We all have our weak and strong moments and learn more and more about the system everyday! Please continue to pray for Taylor and for Jeff and me to continue to have strength to rely on each other. Thanks for everything!
Much love,
Tammy
God Bless
~
1 comment:
What a beautiful family!!!
sorry we won't be here for the benefit but you all are in our prayers, glad to hear Taylor is doing some progress, is that faith and support that will continue to recover her soon.
Take care and God bless you all.
The Zieser's
Jim, Gloria and family
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