I am pleased to report, the wheelchair has finally arrived! Abigail just received it today, she loves it, it is blue (her favorite color), and it even has her name embroidered on back of the chair. It also came equipped with a tray, so that she can easily play with the boys all day long.
The spaghetti dinner benefit was a huge success and also a lot of fun. The pie auction raised about $2,000 for Abigail's fund. Hopefully we will be ready for some sort of communication device in the near future and can use it towards that. It was wonderful to meet so many new people, including another mother of a child with special needs similar to Abigail. She had been the recipient of the benefit a few years prior. Richard was surprised to see a few people from previous places of employment who had heard about the dinner in the paper. I think this is a huge testimony to how he conducts himself at work and reaches people by the way he lives day to day, so kudos to him.
Regarding the seizures, the medication has not been helpful thus far. We meet with Dr. Levin on Monday and will most likely change medications or doses, but we covet your prayers in this matter. I just really wish she didn't have to go through this.
Good night for now. I look forward to hearing from you ~ if you are still reading this, please say so! I miss your comments.
Thursday, February 26, 2009
Thursday, February 19, 2009
I will praise you in this storm...
Before I go ahead and give the news that I must give, I want to say that I still have a peace about Abigail and her recovery. I may not like our current situation, I may not understand, but there is a reason God is bringing us through this. I am reminded of one of my favorite songs, Praise you in the storm. I will praise you in the storm, and I will lift my hands, you are who you are, no matter where I am, and every tear I cry, you hold in your hands, you never left my side, and though my heart is torn, I will praise you in the storm...I lift my eyes up to the hills, where does my help come from, my help comes from the Lord, the maker of heaven and earth...
You know, it felt kind of good just writing the song out. We decided to go in for an EEG sooner, mostly because Abigail's "seizures" have become longer lasting, and increased in intensity. The EEG was yesterday. Today we received the results that she is having seizures. So this means the beginning of determining which medications will stop them, and much learning about seizures, and much prayer. It also means working with a good neurologist and so on and so forth.
We received Abigail's stander Wednesday, and not only is she tolerating it well, I think she likes it. And the boys love it too, because it has a tray so she can play more easily with her toys, particularly her bubble blowing machine.
In the positive, the spaghetti dinner is this Sunday, and we are very much looking forward to meeting some new people and sharing Abigail's story. Also, we have changed our plans for Make A Wish, and will probably be heading to Disney and a special resort set up for special needs children in September of this year. We are going without nurses to make it a special time for just our family. They have things like horse carriage rides, a train station, a giant house of ice cream, a movie theatre that emits fog, horse rides, a life size candy land game with real characters, to name a few things. You can visit GKTW.org if you are interested.
You know, it felt kind of good just writing the song out. We decided to go in for an EEG sooner, mostly because Abigail's "seizures" have become longer lasting, and increased in intensity. The EEG was yesterday. Today we received the results that she is having seizures. So this means the beginning of determining which medications will stop them, and much learning about seizures, and much prayer. It also means working with a good neurologist and so on and so forth.
We received Abigail's stander Wednesday, and not only is she tolerating it well, I think she likes it. And the boys love it too, because it has a tray so she can play more easily with her toys, particularly her bubble blowing machine.
In the positive, the spaghetti dinner is this Sunday, and we are very much looking forward to meeting some new people and sharing Abigail's story. Also, we have changed our plans for Make A Wish, and will probably be heading to Disney and a special resort set up for special needs children in September of this year. We are going without nurses to make it a special time for just our family. They have things like horse carriage rides, a train station, a giant house of ice cream, a movie theatre that emits fog, horse rides, a life size candy land game with real characters, to name a few things. You can visit GKTW.org if you are interested.
Tuesday, February 17, 2009
Possible Siezures - Please Pray
In the past week or so we have become very concerned that Abigail may be having seizures. With her brain injury, she is at very high risk for seizure activity. What we are seeing is that when she startles she sometimes flicks her eyes, twitches her lip, and shrugs her arms. This has happened occasionally before, maybe weekly, but now it is happening about 10 times per day, that we observe, which leads me to believe that it may be happening even more frequently than that when we are not watching. The funny thing is that her heart rate does not increase, nor do her respirations change during these episodes, and those things typically go along with a seizure. So perhaps they are not seizures. We have scheduled and EEG for 2 weeks on March 3rd.
I have been very discouraged at this possibility. I feel like we have already been through brain injury due to lack of oxygen and worked so hard to come to the point we are at today, the possibility of further damage for the same reason is unacceptable. But God is still good. One thing that came to my mind is that hyperbaric oxygen therapy, an alternative treatment we had learned about shortly after the accident, is very successful in healing the part of the brain that causes seizures. Maybe God is trying to turn my head to see that it is time to consider some other treatments for Abigail. Also, many people have suggested that maybe what we are seeing is God forming reconnections in Abigail's brain. Kind of like a baby with an immature nervous system, Abigail has to start from the ground up. Please pray.
I have been very discouraged at this possibility. I feel like we have already been through brain injury due to lack of oxygen and worked so hard to come to the point we are at today, the possibility of further damage for the same reason is unacceptable. But God is still good. One thing that came to my mind is that hyperbaric oxygen therapy, an alternative treatment we had learned about shortly after the accident, is very successful in healing the part of the brain that causes seizures. Maybe God is trying to turn my head to see that it is time to consider some other treatments for Abigail. Also, many people have suggested that maybe what we are seeing is God forming reconnections in Abigail's brain. Kind of like a baby with an immature nervous system, Abigail has to start from the ground up. Please pray.
Monday, February 9, 2009
Spaghetti Dinner!
On the 22nd of this month Deerfield United Methodist Church will be holding a spaghetti dinner and dessert auction. Abigail will be the recipient of the funds raised. We are very thankful for good friends, Shelly and Eric Battenfield, who nominated us as the recipients. We are very humble, as we do not deserve all of the blessings God bestows on us, and grateful. The dinner will start at 5:30 that evening. We would love to have you join us if you are able. For more information, please contact the church at 513-683-7729.
Last Friday we were interviewed by the Cincinnati Enquirer with regard to the spaghetti dinner. That article should print possibly next weekend?
What else is going on with us...Abigail should be receiving her wheelchair any time now. She is very excited, as she is always uncomfortable and lifting her head out of her current chair. Abigail will also be receiving her stander on the 16th as long as everything fits well during our visit. We have had a lot of success with her braces, and her feet are flat for standing when the braces are on. Please pray that when we begin to use this new tool, we not have any problems with pain or function of Abigail's hips. I still think insurance is a funny thing, a wheelchair takes a year to get, but a stander only takes a month...
Abigail is doing very well with using her G-tube only, so I will be meeting with Dr. Levin next month to schedule the removal of the J-tube. We have also increased her bolus amount to 140 per bolus, with no problems. I think that our volume increases were just a little too quick, so we will just add 10ml per month. Lastly, we have begun to wean her Labetolol. This process should take about 10more weeks. We have already done 2 weans without event.
Yesterday we went and spent the afternoon at the zoo. It was lovely weather. A couple of weekends ago after a snow it was so warm we went out and built a snow man without jackets on. Life is good.
I am continuing my bible study on the names of God. This week I studied the name Yahweh Nissi, The Lord my banner. I am reminded that his banner over Abigail, you, and I is love. I pray that he will remind us daily to confess our tendency to fight our battles in our own strength, and to increase our faith in his power on our behalf. God's acts in the life of Abigail are certainly a testimony to that!
Last Friday we were interviewed by the Cincinnati Enquirer with regard to the spaghetti dinner. That article should print possibly next weekend?
What else is going on with us...Abigail should be receiving her wheelchair any time now. She is very excited, as she is always uncomfortable and lifting her head out of her current chair. Abigail will also be receiving her stander on the 16th as long as everything fits well during our visit. We have had a lot of success with her braces, and her feet are flat for standing when the braces are on. Please pray that when we begin to use this new tool, we not have any problems with pain or function of Abigail's hips. I still think insurance is a funny thing, a wheelchair takes a year to get, but a stander only takes a month...
Abigail is doing very well with using her G-tube only, so I will be meeting with Dr. Levin next month to schedule the removal of the J-tube. We have also increased her bolus amount to 140 per bolus, with no problems. I think that our volume increases were just a little too quick, so we will just add 10ml per month. Lastly, we have begun to wean her Labetolol. This process should take about 10more weeks. We have already done 2 weans without event.
Yesterday we went and spent the afternoon at the zoo. It was lovely weather. A couple of weekends ago after a snow it was so warm we went out and built a snow man without jackets on. Life is good.
I am continuing my bible study on the names of God. This week I studied the name Yahweh Nissi, The Lord my banner. I am reminded that his banner over Abigail, you, and I is love. I pray that he will remind us daily to confess our tendency to fight our battles in our own strength, and to increase our faith in his power on our behalf. God's acts in the life of Abigail are certainly a testimony to that!
Subscribe to:
Posts (Atom)