With Christmas around the corner I suddenly remembered that I had a blog for our little princess, and thought I should probably say hello. We have been doing great! Everyone is in good health. We have finished Christmas shopping, holiday cards, and even stocked up on sweets and a gingerbread house. I have started a new hobby of couponing, so I have been getting some really sweet deals. I bought 2 sparkling grape juice bottles for $1.oo total! The grandparents are coming in to town early next week. Everyone is excited. Grandma has been purchasing way too many gifts to spoil the kids, and she talks to them about it every time she calls. Now the boys think that everything in the house is from Grandma.
Abigail is doing well. We visited the doctor last week and discovered that our new diet for her has been successful. She lost 5 pounds and looks great! For awhile she had a bit of puffiness in her face, but she has really evened out. It is so funny, she is growing up so fast! She is getting longer, and just looks more like a little girl than a toddler. Grandma Sherry sent a beautiful Christmas dress for her birthday. I am going to do my best to take some pictures and post them on this blog. Since starting school she has been going to bed on her own at about 7:30 each night, so we were able to remove the Melatonin from her medication list. She has also been going to the bathroom on her own, so we were able to eliminate another bowel medication from her list (the Biscodyl suppository). So she is now down to only one bowel medication, Miralax. God's willingness to heal us physically and emotionally amazes me. When I think back to the time of her accident, I don't know if I ever beleived life would return to normal. He is faithful. The Hassinger family is not just "making it". We are blessed and have much to be thankful for this holiday season.
Abigal has been receiving cranial sacral therapy on a weekly basis, thanks to a generous donor from our church. We are coming up on three months of therapy. I cannot say for sure whether or not there have been changes related to the therapy or not. Please pray for us as we decide whether or not to continue this therapy, or to pursue something else.
Abigail is doing well at school and continues to do well with her eye blink switch. We are going to be doing vision and hearing testing in the near future just to give our therapists more information to use in choosing the best devices to use in working with Abby. She is seeming to improve a lot in the area of speech, particularly with lower lip and mouth movement. I am hoping that the lower lip movement will continue to improve so that she will be capable of increased facial expression. I have already told her that I want an Abigail smile for Christmas. She is also doing more mouth and toungue movement. She moves her toungue out of the way when you suction her of clean her mouth. She also makes kind of an "o" shape with her lips whenever you put something in.
Thats all for now. Please give me a hello and let me know you are out there!
Angie
Friday, December 18, 2009
Wednesday, November 18, 2009
Hassinger Girls Birthdays in November
In the Hassinger house July is the boys birthday month, and November is the girls birthday month. I turned 29 on November 14th, and Abigail celebrates her 5th birthday on November 22nd. She is receiving the traditional homemade cake for breakfast, as well as a box of girly princess movies. She needs something other than cars, trains, and dinosaurs...
Speaking of Abigail, she is doing great in school. She really likes it, and is often awake at 5 or 6 in the morning staring at you, waiting to get dressed and out the door (her bus picks her up at 8am). I think she enjoys the atmosphere with new activities all the time geared just towards people with her capabilities. She is also very tired, and usually in bed by about 7pm. We no longer need the Melatonin to get to sleep. I am always excited to take a medication off of the list. We have also outgrown our need for the suppository every other day, since she is going to the bathroom consistently on her own. So that is 2 medications gone since I last wrote.
Regarding the sleep study results, we no longer need the Bi-Pap machine. That is one more step towards trache removal. And one less machine to bring with us when we travel. Furthermore, she is doing great with the new eye blink switch. We are trying to teach her a double blink, so it is easier to distinguish between intentional and non intentional blinking.
Josiah continues to do well in preschool, and at conferences his teacher praised him for being very compassionate, and one of the first to share with his friends in the class. That is one of the positives of having a sibling with special needs. You learn from a young age that it isn't all about you.
I have been writing down a bunch of stories lately about my boys, my family, and things I have been through in my life. One day I hope to give it out as a gift to my friends and family, or even better, to publish it. Let me share one from before Abigail's accident with you before I go to tuck my boys into bed for the night: When Abigail was three she really liked Sunday school, and she seemed to be internalizing the concept that Jesus loved her. One sunny summer afternoon she was sitting in her chair in the living room, and she looked up and said, "Mommy, Jesus loves me so much." "I know honey," I said. "Yeah," Abigail said, "He doesn't yell at me as much as you do." Nothing like children to keep you humble. A couple of weeks later when I picked her up from Sunday school, her teacher told me that she had been trying to climb the baby gate for most of the class. When I asked Abigail what she had learned in Sunday school that morning she answered, "You couldn't get out!"
Speaking of Abigail, she is doing great in school. She really likes it, and is often awake at 5 or 6 in the morning staring at you, waiting to get dressed and out the door (her bus picks her up at 8am). I think she enjoys the atmosphere with new activities all the time geared just towards people with her capabilities. She is also very tired, and usually in bed by about 7pm. We no longer need the Melatonin to get to sleep. I am always excited to take a medication off of the list. We have also outgrown our need for the suppository every other day, since she is going to the bathroom consistently on her own. So that is 2 medications gone since I last wrote.
Regarding the sleep study results, we no longer need the Bi-Pap machine. That is one more step towards trache removal. And one less machine to bring with us when we travel. Furthermore, she is doing great with the new eye blink switch. We are trying to teach her a double blink, so it is easier to distinguish between intentional and non intentional blinking.
Josiah continues to do well in preschool, and at conferences his teacher praised him for being very compassionate, and one of the first to share with his friends in the class. That is one of the positives of having a sibling with special needs. You learn from a young age that it isn't all about you.
I have been writing down a bunch of stories lately about my boys, my family, and things I have been through in my life. One day I hope to give it out as a gift to my friends and family, or even better, to publish it. Let me share one from before Abigail's accident with you before I go to tuck my boys into bed for the night: When Abigail was three she really liked Sunday school, and she seemed to be internalizing the concept that Jesus loved her. One sunny summer afternoon she was sitting in her chair in the living room, and she looked up and said, "Mommy, Jesus loves me so much." "I know honey," I said. "Yeah," Abigail said, "He doesn't yell at me as much as you do." Nothing like children to keep you humble. A couple of weeks later when I picked her up from Sunday school, her teacher told me that she had been trying to climb the baby gate for most of the class. When I asked Abigail what she had learned in Sunday school that morning she answered, "You couldn't get out!"
Wednesday, October 7, 2009
An Update on Abigail
Sorry guys, my computer is old and slow, and we still only have dial up Internet, so it takes awhile to write a post, especially when I am including pictures. I am going to finish up telling you about the trip, but first I am going to take a break and give you all a general update on Abigail and on our family.
We are nearly ready for Princess Abigail to start school at the Houston Woods Early Learning Center. It has been a process getting through the Individual Education Planning (IEP) process, but I think it went about as well as something like this can go. She should be starting any time now, as soon as the agency that Lamonda, her regular nurse needed to hire through, finishes up the paperwork. I have met the teachers and therapists that will be working with her 5 days a week from 8:30 until 11:00. They are very comfortable and natural in their interaction with her, and seem knowledgeable about Abigail's condition. Furthermore, they have a lot in the way of supplies like switches, computer programs, and sensory toys that may be of benefit to her. As such, we have decided to use the school district, and not the Conductive Learning Center mentioned in a previous blog at this time. Since Lamonda will be in school with her, I will know first hand how things are going, and can adjust this plan as necessary.
Speaking of school, Josiah has been in preschool at Montgomery Community Church for about 3 weeks now, and is loving it. And Levi is loving our one on one time together while Josiah is in class. He takes such ownership, and doesn't even really want me to step into his classroom! My big boy is growing up!
Now if only I could teach him more kindness to his little brother...Monday he pushed Levi off of the toilet in the bathroom, because Levi would not turn off the water in the sink. The result was 3 and 1/2 hours at the emergency room waiting and 3 staples in the back of his head. That makes 2 sets of stitches for each of them so far...which means what? That I have 2 healthy normal little boys, or so I am told...
Abigail has been successfully weaned off of the Labetalol, and we are now on to the Valium wean . We are proceeding slowly, because we really want to control these seizures. Please make this a matter of prayer. Also, she has a sleep study to determine whether or not the Bi-PAP machine is necessary when she is healthy. We had to cancel our previous appointment, because Abigail was sick with something respiratory, and it didn't seem like the best time to assess this. Also, next Thursday we are having a Trache Scope (routine, they put her under anesthesia and look inside her trache to make sure that everything looks healthy and is where it is supposed to be). We are also putting tubes in her ears, since she has had chronic ear infections, and has not been showing us symptoms so that we can treat them. Please pray for a smooth recovery. Her ENT doctor is a Christian, and is willing to pray with his patients prior to surgery.
On to something more exciting, progress. Abigail as I mentioned before had stopped using her hand, and so we were looking for another way for her to control and play with her toys. We recently purchased an eye blink switch, and it is working great! She is back on the computer reading stories. Actually, she is starting to use her hand again to. Please pray that she will master the eye blink, learn to make choices, and ultimately progress to a communication device. My worst fear for her is that she is "stuck" in there, and just trying to talk to us!
Lastly, a major blessing I wanted to share. An anonymous individual from my church offered to purchase some things for Abigail, including a Tumbleform Seat and a year of Cranial Sacral Therapy. We received the seat yesterday. Look it up online if you are curious. It is terrific, because when we are playing she can sit on the floor next to us at our level and be a part of the fun. Thanks so much, if you are reading our blog! God bless you!
I will talk to you all soon, and try to finish posting the trip when I get a chance.
We are nearly ready for Princess Abigail to start school at the Houston Woods Early Learning Center. It has been a process getting through the Individual Education Planning (IEP) process, but I think it went about as well as something like this can go. She should be starting any time now, as soon as the agency that Lamonda, her regular nurse needed to hire through, finishes up the paperwork. I have met the teachers and therapists that will be working with her 5 days a week from 8:30 until 11:00. They are very comfortable and natural in their interaction with her, and seem knowledgeable about Abigail's condition. Furthermore, they have a lot in the way of supplies like switches, computer programs, and sensory toys that may be of benefit to her. As such, we have decided to use the school district, and not the Conductive Learning Center mentioned in a previous blog at this time. Since Lamonda will be in school with her, I will know first hand how things are going, and can adjust this plan as necessary.
Speaking of school, Josiah has been in preschool at Montgomery Community Church for about 3 weeks now, and is loving it. And Levi is loving our one on one time together while Josiah is in class. He takes such ownership, and doesn't even really want me to step into his classroom! My big boy is growing up!
Now if only I could teach him more kindness to his little brother...Monday he pushed Levi off of the toilet in the bathroom, because Levi would not turn off the water in the sink. The result was 3 and 1/2 hours at the emergency room waiting and 3 staples in the back of his head. That makes 2 sets of stitches for each of them so far...which means what? That I have 2 healthy normal little boys, or so I am told...
Abigail has been successfully weaned off of the Labetalol, and we are now on to the Valium wean . We are proceeding slowly, because we really want to control these seizures. Please make this a matter of prayer. Also, she has a sleep study to determine whether or not the Bi-PAP machine is necessary when she is healthy. We had to cancel our previous appointment, because Abigail was sick with something respiratory, and it didn't seem like the best time to assess this. Also, next Thursday we are having a Trache Scope (routine, they put her under anesthesia and look inside her trache to make sure that everything looks healthy and is where it is supposed to be). We are also putting tubes in her ears, since she has had chronic ear infections, and has not been showing us symptoms so that we can treat them. Please pray for a smooth recovery. Her ENT doctor is a Christian, and is willing to pray with his patients prior to surgery.
On to something more exciting, progress. Abigail as I mentioned before had stopped using her hand, and so we were looking for another way for her to control and play with her toys. We recently purchased an eye blink switch, and it is working great! She is back on the computer reading stories. Actually, she is starting to use her hand again to. Please pray that she will master the eye blink, learn to make choices, and ultimately progress to a communication device. My worst fear for her is that she is "stuck" in there, and just trying to talk to us!
Lastly, a major blessing I wanted to share. An anonymous individual from my church offered to purchase some things for Abigail, including a Tumbleform Seat and a year of Cranial Sacral Therapy. We received the seat yesterday. Look it up online if you are curious. It is terrific, because when we are playing she can sit on the floor next to us at our level and be a part of the fun. Thanks so much, if you are reading our blog! God bless you!
I will talk to you all soon, and try to finish posting the trip when I get a chance.
Tuesday, October 6, 2009
Disney World 3
On Wednesday, day 3 of our trip, we started our morning at Keaton's Korral at GKTW. Abigail, Josiah, and Levi each rode a horse, but Abigail slept through her ride...Afterwards, the children were each given honorary cowboy hats and certificates stating that they were now members of Clayton's Saddle Club.
Afterwards we headed on out to Disney Animal Kingdom and saw 3 main attractions: First we saw the "Its Tough to be a Bug" ride. It is a 3D animated ride where you put on 3d glasses and are indoctrinated by Flick as honorary bugs. Unfortunately, the bugs attack you, and Josiah freaked out. Maybe we could have skipped this one...Next we saw the Finding Nemo Musical. It was very cute, with puppets, music, and acrobatics. And it was in the air conditioning. Lastly, we went on the Kilimanjaro Safari. For 18 minutes we viewed tons of free roaming animals. Josiah loved it, because he loves animals. Most of the time, he named the animals before the guide.
We stopped for lunch on the way out at the Rainforest Cafe, and discovered that Abigail like to watch fish! I have never seen her track anything so well before! It would be wonderful to incorporate this into her therapy at some point.
Disney World 2
By our second day on the trip, Abigail and Richard were starting to feel better. We woke up early and headed out the Disney Magic Kingdom and the Bibbity Bobbity Botique, where Abigail was transformed into a Disney Princess, with the help of her fairy godmother, of course. Abigail blinked to choose her gown (Cinderella, of course), makeup, and nailpolish colors. She even fit perfectly into her glass slippers (her first real pair of shoes since the accident). I am hoping to find a glass case to display them in her bedroom. Her beautiful dress is already hanging on the bedroom wall. Guess what she is going to be for Halloween?
We visited a handful of attractions, but the weather was hot and humid, so we had to limit our time outside, and take multiple air conditioning and drink breaks. Among the things we did were: Cinderellas Golden Carousel, Dumbo the Flying Elephant, Its a Small World, The Many Adventures of Winnie the Pooh, Buzz Lightyear's Space Ranger Spin, and the Astro-orbitor. Abigail's favorite was Its a Small World, and the boys favored the Buzz Lightyear ride. We were so spoiled. We didn't have to wait in line for anything!
Everyone even enjoyed the transportation to and from the theme parks. On the way in, we rode the tram, and on the way home we rode the boat.
Aside from all of the attractions, the GKTW village had plenty of activities as well. Tonite was family fun night at the village. There were kickballs, footballs, music and dancing, and a life sized connect four game. Abigail and I hung out and shared an ice cream while the boys played.
Our Trip to Disney World
So much has happened since my last post...where to begin? How about with our trip to Disney, and we will fill you in from there. I kept a journal on our trip, because I just didn't ever want to forget anything about her special trip, so I will share it with all of you here.
On Monday 9-7 we woke up early to go to the airport. Abigail had been sick for several weeks prior to the trip, and was still a little under the weather today. Richard was not feeling so great himself. We wore our Make a Wish buttons, and the curbside check in man was very kind to us. He carried our bags inside, and they actually waived the baggage check fee. Cool! We made it through security and ate breakfast while watching the planes from our departure gate. The flight itself for Abigail and Richard was horrible, because of their congestion. Abigail did a little better once we got her started on the oxygen. The boys loved the flight, and Josiah was unwilling to give up his window seat (even on the way home). When we arrived in Orlando we met our airport greeter who helped us find our bags and load them into our rental van. Off to Give Kids the World we go!
When we arrived at the House of Hearts Abigail was given a stuffed Mickey Mouse, and the boys were each given Shamu stuffed animals. Our castle for the week was located across the street from Matthew's Boundless Playground, the worlds largest and only life sized version of the Candyland game. There was another bag of goodies waiting inside for Abigail at our new home for the week (Josiah still makes references to our orange house).
Abigail and daddy needed their rest, so the boys and I headed out to explore the GKTW Village. We played on the playground, rode on the carousel, and found the ice cream palace. They also petted a live sloth from SeaWorld.
I will continue to post bit by bit...
Monday, July 27, 2009
A Month of Birthdays for the Hassinger Boys
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.
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.
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!
Tuesday, June 16, 2009
Hello from our new home!
Let me begin by saying thank you for all of your emails, gifts, and letters reminding us that we are still in your thoughts and prayers. Especially, thank you to the Hassinger family (the whole big thing!). I am finally getting a moment to settle down, and write a bit on the blog. My goal will be to update once or twice a month from here on out. I just can't commit to more than that right now...
Yes, our new home! With the government tax credit and what we have been saving we finally had enough to put a good down payment on a house we hope to stay in for a long time and raise our family. It also has room to grow our family, via foster care or whatever means God intends. It is only about 6 minutes away from our old house, but is in a better school district (Northwest Local). It has 4 bedrooms and 2 full baths. Two of the bedrooms are upstairs with a bathroom, and 2 are down. So Abigail has her own bathroom, and we have some privacy from the nurses in our home. Woohoo!
We began the process of bidding and inspecting in April, and moved into our home May 16th. For those of you that know me well, yes, it is all together - complete with pictures on the wall. We only have 1 box left to unpack. Well, Richard does. His tools and random stuff.
Which brings us to Abigail. One thing that could really use some prayer is that we are preparing to get Abigail off to preschool next year. We are going through the IEP (individualized education plan), which is a long process. This will determine the kinds of help and therapies Abigail receives at school. Hopefully, this process will go smoothly...but that is often not the case. I begin the process full force next August, right now I am just gathering therapy records and paperwork. Josiah will also be starting preschool next year at our church 2 days a week, which will give me some one on one quality time with little Levi. They are growing up fast!!
I believe last I blogged we were going to be visiting the neurologist for the first time since being inpatient at Children's. We did that, but have continued to struggle to get her seizures under control. We have been through a variety of new medications, an MRI, and a couple of EEG's. It has been difficult to watch the seizures, knowing that they are out of my control. At the worst point, Abigail was having 4 to 6 full body seizures a day, and several startle seizures, sometimes 5 in one hour. Now we have successful eliminated the full body seizures (for the most part), but still contend with startles on a daily basis. By biggest concern has been loss of function or increased brain damage. At this time, we have seen some setbacks, but I am hoping that as we continue to get the seizures under control and as Abigail acclimates to the new medications, she will be able to relearn those things and more. Specifically, Abigail is more tired and less alert each day. She is less functional with her hands, and does not blink to answer questions as often. She can still play the computer, but needs more assistance and encouragement. Another consequence is that we are losing Abigail's therapies. I am going to pursue some other options. I will keep you posted.
May I also ask you to join me in praying for some dear friends of ours in Mexico. Gustav, who is 30 years old, was just diagnosed with stomach cancer. I am still waiting for more details on his prognosis. He has a young wife and two young children. Life on this side of heaven is just so hard sometimes, and feels so unfair.
As I close, I am meditating on a scripture spoken at our Sunday service last week. We were discussing Nehemiah, and prayer. Basically we need to pray not just once, or for 30 seconds strongly, or for a week, but diligently. It says that Nehemiah prayed morning and night for 180 days!! I struggle with this too, and sometimes get discouraged by the setbacks, but the bible says, "The prayer of a righteous man is powerful and effective." Lets be like the widow who wore the judge out with her constant requests, so he finally gave her what she wanted so she would just leave him alone!
Yes, our new home! With the government tax credit and what we have been saving we finally had enough to put a good down payment on a house we hope to stay in for a long time and raise our family. It also has room to grow our family, via foster care or whatever means God intends. It is only about 6 minutes away from our old house, but is in a better school district (Northwest Local). It has 4 bedrooms and 2 full baths. Two of the bedrooms are upstairs with a bathroom, and 2 are down. So Abigail has her own bathroom, and we have some privacy from the nurses in our home. Woohoo!
We began the process of bidding and inspecting in April, and moved into our home May 16th. For those of you that know me well, yes, it is all together - complete with pictures on the wall. We only have 1 box left to unpack. Well, Richard does. His tools and random stuff.
Which brings us to Abigail. One thing that could really use some prayer is that we are preparing to get Abigail off to preschool next year. We are going through the IEP (individualized education plan), which is a long process. This will determine the kinds of help and therapies Abigail receives at school. Hopefully, this process will go smoothly...but that is often not the case. I begin the process full force next August, right now I am just gathering therapy records and paperwork. Josiah will also be starting preschool next year at our church 2 days a week, which will give me some one on one quality time with little Levi. They are growing up fast!!
I believe last I blogged we were going to be visiting the neurologist for the first time since being inpatient at Children's. We did that, but have continued to struggle to get her seizures under control. We have been through a variety of new medications, an MRI, and a couple of EEG's. It has been difficult to watch the seizures, knowing that they are out of my control. At the worst point, Abigail was having 4 to 6 full body seizures a day, and several startle seizures, sometimes 5 in one hour. Now we have successful eliminated the full body seizures (for the most part), but still contend with startles on a daily basis. By biggest concern has been loss of function or increased brain damage. At this time, we have seen some setbacks, but I am hoping that as we continue to get the seizures under control and as Abigail acclimates to the new medications, she will be able to relearn those things and more. Specifically, Abigail is more tired and less alert each day. She is less functional with her hands, and does not blink to answer questions as often. She can still play the computer, but needs more assistance and encouragement. Another consequence is that we are losing Abigail's therapies. I am going to pursue some other options. I will keep you posted.
May I also ask you to join me in praying for some dear friends of ours in Mexico. Gustav, who is 30 years old, was just diagnosed with stomach cancer. I am still waiting for more details on his prognosis. He has a young wife and two young children. Life on this side of heaven is just so hard sometimes, and feels so unfair.
As I close, I am meditating on a scripture spoken at our Sunday service last week. We were discussing Nehemiah, and prayer. Basically we need to pray not just once, or for 30 seconds strongly, or for a week, but diligently. It says that Nehemiah prayed morning and night for 180 days!! I struggle with this too, and sometimes get discouraged by the setbacks, but the bible says, "The prayer of a righteous man is powerful and effective." Lets be like the widow who wore the judge out with her constant requests, so he finally gave her what she wanted so she would just leave him alone!
Monday, March 9, 2009
A Weekend to Remember
As I write this post, Richard and I have just gotten home from our first marriage conference since before Abigail was born. A friend gifted us with admission to the weekend to remember conference in Cincinnati, and we had a wonderful time. At the end, we were even able to renew our wedding vows, after 7 wonderful years of marriage.
We had an appointment last Monday with Dr. Levin. Some highlights: Abigail is losing some weight, which is even better than staying put! We removed her J-tube, so now it is strictly a G-tube. This is a more typical way of feeding, and if it comes out I can replace it instead of going to the hospital. And with how active she is getting with her hands, and her two busy brothers, I will not be shocked when one day it gets pulled out! What else...We continue to slowly increase the dose of Keppra, her seizure medication. We are finally seeing some progress. She is down to about3-4 observed seizures a day. We have more work to do, but we are getting there. And we have our first visit with the neurologist on March 26th, so please pray for that date.
We had an appointment last Monday with Dr. Levin. Some highlights: Abigail is losing some weight, which is even better than staying put! We removed her J-tube, so now it is strictly a G-tube. This is a more typical way of feeding, and if it comes out I can replace it instead of going to the hospital. And with how active she is getting with her hands, and her two busy brothers, I will not be shocked when one day it gets pulled out! What else...We continue to slowly increase the dose of Keppra, her seizure medication. We are finally seeing some progress. She is down to about3-4 observed seizures a day. We have more work to do, but we are getting there. And we have our first visit with the neurologist on March 26th, so please pray for that date.
Thursday, February 26, 2009
Abigail's Big Wheelchair Day!
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.
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 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!
Friday, January 16, 2009
Trache Scope Today, Clean Bill of Health
Today we spent the better part of our day at Children's Hospital doing a routine trache scope. This is done every 6 months, just to make sure everything looks good for the trache internally. The neat thing is that our ENT specialist actually goes to our church and is willing to pray with patients prior to any procedure. That said, Abigail looks good, maybe just a small amount of irritation at the bottom of her trache . This could be from people sticking the suction catheter too far down (we will need to revisiting using the measuring increments to avoid this). This could also be a result of the reflux of her tube feeds (acidic juices don't belong in the trachea!). But it does not look too alarming at this point, just something to make note of.
After doing some thinking, and considering the above information, we have decided to back off of the boluses a little bit. We are going to do 5 a day at a only 150 mls and the rest on tube feed overnight. This will hopefully decrease the agitation, increased secretions, and reflux we have been seeing more and more following a bolus. I think her tummy just needs a little more time to adjust to the increased volume, so we are going to back off and take it a little slower. Also, she is so agitated that we are unable to use the passi-mier following a bolus, and this sets her back in vocalization and removing the trache. I think that is more important at this time than bolusing! But I know we will get there!
Thank you to good friends who were willing to spend time with my boys today while I cared for Abigail. They had a great time. Until next time...
After doing some thinking, and considering the above information, we have decided to back off of the boluses a little bit. We are going to do 5 a day at a only 150 mls and the rest on tube feed overnight. This will hopefully decrease the agitation, increased secretions, and reflux we have been seeing more and more following a bolus. I think her tummy just needs a little more time to adjust to the increased volume, so we are going to back off and take it a little slower. Also, she is so agitated that we are unable to use the passi-mier following a bolus, and this sets her back in vocalization and removing the trache. I think that is more important at this time than bolusing! But I know we will get there!
Thank you to good friends who were willing to spend time with my boys today while I cared for Abigail. They had a great time. Until next time...
Thursday, January 15, 2009
Adonay, Abigail's Deliverer
I have now worked 2 CNA shifts, and the second was much easier than the first! I actually had some sit down time which I used to do some well needed bible study. I am working through a book about the names of God, and this particular night I studied Yahweh/Adonay. This name literally refers to God as our Deliver. This is the name that the Israelites came to know God by when he delivered them from slavery in the book of Exodus. And how appropriate, since he literally delivered Abigail from death in that ER. Abigail is a miracle, there is no other explanation. She was under water for 30 minutes. Then clinically dead for 2 hours (no breathing or heart rate). Pastor Jeff and my husband began to pray OUT LOUD in the emergency room, Lord, you raised Lazarus from the dead. We believe that you still do miracles today, please, give us our daughter back. Within 30 seconds of that prayer, the nurse said, I have a pulse. Adonay, Abigail's deliverer.
This brings me to my second point: Why did God choose to act in Exodus, or in that hospital room? The Israelites were crying out. Richard and I and our Pastor cried out. God's power is released when we pray and ask. What do you need to ask for today?
Praise God, the infection that seemed to linger several weeks in this house in finally gone! I think a few of my nurses may have brought it home, please keep them in your prayers. Abigail is now not using the pump at all, she gets 6 boluses a day, and that covers all of her formula. The only negative is that at least half of the time when we give a bolus she gets agitated and has a lot more secretions, so as a result it is difficult to use her passi-mier. So we may have some setbacks in vocalization and ultimately removing her trache. Just pray for us to know the right thing to do. We visit the rehab doctor next Thursday and will know more about the hip situation at that time.
Thanks for reading. Talk to you soon.
This brings me to my second point: Why did God choose to act in Exodus, or in that hospital room? The Israelites were crying out. Richard and I and our Pastor cried out. God's power is released when we pray and ask. What do you need to ask for today?
Praise God, the infection that seemed to linger several weeks in this house in finally gone! I think a few of my nurses may have brought it home, please keep them in your prayers. Abigail is now not using the pump at all, she gets 6 boluses a day, and that covers all of her formula. The only negative is that at least half of the time when we give a bolus she gets agitated and has a lot more secretions, so as a result it is difficult to use her passi-mier. So we may have some setbacks in vocalization and ultimately removing her trache. Just pray for us to know the right thing to do. We visit the rehab doctor next Thursday and will know more about the hip situation at that time.
Thanks for reading. Talk to you soon.
Wednesday, January 7, 2009
Hide and Seek
Hello everyone. I hope you all had a wonderful Christmas season, celebrating the birth of our Lord and Saviour. We had a nice trip home to Minnesota. Abigail did well in the car (a total of 12 hours one way). She was a little bit more agitated and required oxygen and bi-pap on the way to Minnesota, but our time there and the trip home was for the most part uneventful. The grandparents loved spending time with the children, and vice verse. I was a little tired, not having a nurse on the trip with us and doing all of her care (overnights, in particular). It reminds me of how much I appreciate my overnight nurses, and all of the work that they do!! My mother in law and sister in law were both very helpful with the boys, keeping them out of the way every morning so that I could give Abigail her bath and therapy. We will look forward to our next visit.
Abigail, Josiah, and Levi received many wonderful gifts. I wanted to say thank you to those who sent gifts for Abigail, she now has a handful of toys that she can play with too. The boys received a museum membership from a friend, which we will use often. Really, thank you, you are all too kind. We are very grateful.
Abigail is almost done with her feeding pump, and everyone cheered! One less thing to charge at night and carry around with us. We are now bolusing 190 mls four times a day, so in 3 more days we will have reached our goal of 20o mls. At that time we need to add in 2 more boluses a day, and should be done. We should also be able to eliminate the J-tube, and go to strictly a G-tube. I just need to to talk to the doctor about our final plan. After that, I think we can continue to work on some med weans, namely the Valium and Labetolol. These will both probably be slow, but that is okay.
Please pray for this infection that seems to be lingering in my house. Abigail seemed fine for a handful of days, but now it is flaring up again. She is very agitated (high heart rate) and is having low grade fevers off and on. This would not be a big deal, but we have been trying to get her to kick this for about 3 weeks now. This is the stuff that tends to slow us down on boluses and med weans, since we don't like to make changes when she is already upset. If we do and there is a problem, it is difficult to know whether the agitation should be attributed to the changes we are making or the illness.
Also, please pray for guidance in some big decisions we have coming up. We just did x-rays and learned that Abigail's left hip is 50% dislocated and her right hip is 100% dislocated. I am in the process of having discussions with my physical therapist and rehabilitation doctors to make a plan. I will keep you all posted so that you can pray accordingly. She does not seem to be in any pain. We think that they have been this way for quite some time, as a result of the storming and tone. It may affect our plans for getting her in a stander, though. Hard to stand if your hips are dislocated.
And now for the title of the blog, Hide and Seek. Abigail is really doing a lot with her speech these days. We are working a lot on sucking with her pacifier, and she has started to move her tongue and move towards this reflex. She is also doing a lot more of turning her eyes and head toward voices, especially mom and dad. This is a huge step for her.
Lastly, I am doing my first overnight CNA shift tonite from 7 to 7. I am a little nervous being that it is my first time and all, but I am sure all will go well. Wish me luck!
Abigail, Josiah, and Levi received many wonderful gifts. I wanted to say thank you to those who sent gifts for Abigail, she now has a handful of toys that she can play with too. The boys received a museum membership from a friend, which we will use often. Really, thank you, you are all too kind. We are very grateful.
Abigail is almost done with her feeding pump, and everyone cheered! One less thing to charge at night and carry around with us. We are now bolusing 190 mls four times a day, so in 3 more days we will have reached our goal of 20o mls. At that time we need to add in 2 more boluses a day, and should be done. We should also be able to eliminate the J-tube, and go to strictly a G-tube. I just need to to talk to the doctor about our final plan. After that, I think we can continue to work on some med weans, namely the Valium and Labetolol. These will both probably be slow, but that is okay.
Please pray for this infection that seems to be lingering in my house. Abigail seemed fine for a handful of days, but now it is flaring up again. She is very agitated (high heart rate) and is having low grade fevers off and on. This would not be a big deal, but we have been trying to get her to kick this for about 3 weeks now. This is the stuff that tends to slow us down on boluses and med weans, since we don't like to make changes when she is already upset. If we do and there is a problem, it is difficult to know whether the agitation should be attributed to the changes we are making or the illness.
Also, please pray for guidance in some big decisions we have coming up. We just did x-rays and learned that Abigail's left hip is 50% dislocated and her right hip is 100% dislocated. I am in the process of having discussions with my physical therapist and rehabilitation doctors to make a plan. I will keep you all posted so that you can pray accordingly. She does not seem to be in any pain. We think that they have been this way for quite some time, as a result of the storming and tone. It may affect our plans for getting her in a stander, though. Hard to stand if your hips are dislocated.
And now for the title of the blog, Hide and Seek. Abigail is really doing a lot with her speech these days. We are working a lot on sucking with her pacifier, and she has started to move her tongue and move towards this reflex. She is also doing a lot more of turning her eyes and head toward voices, especially mom and dad. This is a huge step for her.
Lastly, I am doing my first overnight CNA shift tonite from 7 to 7. I am a little nervous being that it is my first time and all, but I am sure all will go well. Wish me luck!
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