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.

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...

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.

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!

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!