Summer in Cincinnati has been beautiful. Actually, it has been a pretty cool July, which I (being from Minnesota) have taken as a huge blessing. Today we spent the morning at the water and the evening watching Richard play softball. I must brag, he is pitching now, and I think he does alright...
It has been a busy July, since all of my guys birthdays fall in that month (or thereabouts). Josiah turned 3 June 30th, Levi turned 2 on July 16th, and Richard turned 29 on July 24th. Happy birthday to all of them!! The boys enjoyed our family tradition of homemade cake for breakfast on your birthday (or in Richard's case, Cherry Cream Cheese Pie).
The process for Abigail's schooling though the district is also well underway, and we will be meeting with the school district in August to begin the process of getting her Individualized Education Plan (IEP) in place. I am hoping to be able to make an educated decision regarding which program is best for Abby for the upcoming year; the school district or the conductive learning center. We may decide to use both at the same time.
Abigail is nearly weaned off of the Labetalol, we drop our final dose hopefully in the next week or so. We are going to talk to her doctor about beginning to wean the Valium tomorrow. Her seizures are again improving. She has returned to 0 to 2 full body seizures a day. We will have to wean the Valium cautiously, so that she does not again begin to seize more frequently. We have scheduled the sleep study for July 24th to determine if we can indeed eliminate the Bi-Pap machine.
At her last round of appointments, the doctors agreed that Abigail is tracking items visually. She has been doing alot more blinking in response to questions. When Tim and Melissa visited last weekend, Tim noted that she was really a lot more alert than the last time he saw her several months ago.
We are getting very excited about our trip to Disney September 7th. I hear that Make a Wish really spoils the kiddos. It should be a lot of fun! To see a bit of the adventure that awaits us, visit www.gktw.org.
Monday, July 27, 2009
Thursday, July 9, 2009
Fun in the Sun
As far as Ohio summers go, this has been a beautiful one! Our family found a wonderful deal on membership to the Beach water park, and we have been visiting weekly. It has a children's area with a zero entry pool, small water slides, and a lazy river with tubes. Josiah and Levi are really enjoying this. It also has a zero entry heated pool. This is where Abigail spends the majority of her time, and I have never seen her more relaxed. I continue to make it my goal to include her in everything we can.
Regarding Abigail, in some ways she is making progress, but the seizures continue to be a road block. For instance, at her previous round of appointments we were able to make decisions to wean a few more medications (The labetalol, colace, and possibly valium in the not too distant future). Abigail is also doing well weight wise and has lost a couple of pounds. We will monitor this closely to be sure that she doesn't lose too much, but the G-tube really made her add a lot of weight very quickly after her accident. Furthermore, we are working on planning a sleep study to determine if we can discontinue the use of Bi-PAP at night. I am hoping to have this process complete before our Make a Wish trip, as it would be wonderful not to carry that machine and the supplies that go along with it.
As I noted above, the seizures continue to be a source of difficulty. We had for about a month gotten them under control somewhat (meaning no full body seizures most days, but still several startle seizures). After changing some medications (increasing her Lamictal in hopes of eventually discontinuing the valium entirely), we realized that Abigail's full body seizures were again increasing to between 2 and 4 a day. After speaking to her neurologist, we learned that sometimes too much seizure medication results in more seizure activity. So we decreased the Lamictal, and it seems that the full body seizures are again becoming less frequent. This is such a frustrating process for us, and I imagine Abigail as well. We had just gotten her back to doing most of the things she was doing before the seizures began. But this time I don't believe she lost much function. I think we caught it before it got very out of control.
We are so thankful for a group at our church who felt led to help us out in getting a generator for Abigail. It seems that we lose power most times a storm comes through Cincinnati. We called originally just to ask them to help us choose one that would be suitable for our needs. This group had something else in mind. They not only purchased the generator, but installed outlets. God loves to give good gifts to his children. Thank you so much.
As I close today and begin to get the children dressed and bathed, I am meditating on the book of Esther. I am doing a Beth Moore study, and she is awesome! I am thinking that Esther did not really want to be Queen, but God had it in his plans for her. Sometimes we don't ask for what life offers us, but God has a plan to use it for good, for his glory. Lord, help me to get on board with your plan!
Regarding Abigail, in some ways she is making progress, but the seizures continue to be a road block. For instance, at her previous round of appointments we were able to make decisions to wean a few more medications (The labetalol, colace, and possibly valium in the not too distant future). Abigail is also doing well weight wise and has lost a couple of pounds. We will monitor this closely to be sure that she doesn't lose too much, but the G-tube really made her add a lot of weight very quickly after her accident. Furthermore, we are working on planning a sleep study to determine if we can discontinue the use of Bi-PAP at night. I am hoping to have this process complete before our Make a Wish trip, as it would be wonderful not to carry that machine and the supplies that go along with it.
As I noted above, the seizures continue to be a source of difficulty. We had for about a month gotten them under control somewhat (meaning no full body seizures most days, but still several startle seizures). After changing some medications (increasing her Lamictal in hopes of eventually discontinuing the valium entirely), we realized that Abigail's full body seizures were again increasing to between 2 and 4 a day. After speaking to her neurologist, we learned that sometimes too much seizure medication results in more seizure activity. So we decreased the Lamictal, and it seems that the full body seizures are again becoming less frequent. This is such a frustrating process for us, and I imagine Abigail as well. We had just gotten her back to doing most of the things she was doing before the seizures began. But this time I don't believe she lost much function. I think we caught it before it got very out of control.
We are so thankful for a group at our church who felt led to help us out in getting a generator for Abigail. It seems that we lose power most times a storm comes through Cincinnati. We called originally just to ask them to help us choose one that would be suitable for our needs. This group had something else in mind. They not only purchased the generator, but installed outlets. God loves to give good gifts to his children. Thank you so much.
As I close today and begin to get the children dressed and bathed, I am meditating on the book of Esther. I am doing a Beth Moore study, and she is awesome! I am thinking that Esther did not really want to be Queen, but God had it in his plans for her. Sometimes we don't ask for what life offers us, but God has a plan to use it for good, for his glory. Lord, help me to get on board with your plan!
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