Journal History

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Sunday, October 26, 2008 5:20 PM CDT

Hello All,

I know we are overdue for an update here! I apologize. It just seems like we’ve had a lot going on the past few weeks and I just haven’t had time to sit down and put everything in writing.

I guess the big story is our latest trip to MN for appointments. We left on Oct 15th and spent the night up there so we could meet with the neurologist at 8:30 am the morning of Oct 16th. As usual, the doctor thought Haley looked really good. We decided to go ahead and increase one of her seizure medications (Lamictal) since we’ve kind of noticed a slight increase in seizures lately. Since Haley seems to have put on a little bit of weight she could go up on that medicine. The other thing we talked about is regulating Haley’s autonomic nervous system. Once the Lamictal increase is complete (we have a 6 week schedule for that), Haley will start on a new drug called cyproheptadine. Cyproheptadine is one of those drugs that has been around a long time and has many uses. It was most commonly used as an antihistamine but also used to treat other conditions such as pediatric migraines. Dr. Wical is hoping this could even out Haley’s autonomic system so that when she digests food, for example, her body doesn’t go all out of whack and have a seizure. Another example is when Haley’s body temperature fluctuates and she has a hot spots and cold spots. These changes could be triggering a seizure so if we can control the cause, maybe we can wipe out some of those seizures. We have to wait until the Lamictal increase is complete though because we can never make 2 changes at once because then we won’t know which drug is making things better- or worse. I’m a little worried that the cyproheptadine will make her sleepy because that is listed as one of the main side effects. We’ll have to keep an eye on her and hopefully with continued CPAP at night and her Provigil (the stay awake medicine she takes daily) we won’t have any trouble.

After visiting with the neurologist in Burnsville we had to drive straight over to St Paul, MN to see the physical medicine and rehabilitation doctor, Dr. Ward. We opted to do this as it was the only way we could see both doctors on the same day. Dr. Ward just wanted to check and see how Haley was doing after her botox injections and phenol block that were done back in August. We thought we would be able to get through the winter without having to go back up there for appointments until spring but we guessed wrong. Dr. Ward really wants Haley to have more botox so it looks like we’ll be going back in December. Botox for Christmas! What girl wouldn’t like that? While we were there Haley also got her AFO’s adjusted because the right one was leaving a nasty bruise on her ankle. After that we were able to stop and have lunch and then start heading home. As always, Haley was an exceptionally good little passenger.

When we got home her traveling wasn’t over. We spent a lot of that weekend making trips to the Mette family reunion. It was nice to see everyone and we were proud to show off our girl. Haley didn’t mind the extra attention one bit.

Just as things settled down and we were ready to start our week and get back into our “normal” routine, Haley came down with a slight cold. She missed school on Monday but went back on Tuesday and has been getting over this stuff relatively quickly. Good thing- she missed school pictures because of a cold and the retakes were yesterday and I really didn’t want her to miss out on that. According to the aide that took her to get the picture taken, Haley’s photo this year may be interesting. I guess the photographer wanted Haley positioned with her chin down so she was looking straight at the camera. With Haley that just isn’t going to happen. So he asked the aide to put her hand under Haley’s chin. The photographer told her not to worry and that he could just airbrush her hand out. Hmm…something tells me I might be making an appointment of our own to have some decent pictures of Haley this year.

My parents were on vacation on last week but they are back now. They are such a big help and I appreciate them picking up Haley from school every day. When they are gone, I feel like I get to work and next thing I know I have to leave to go get Haley, take her home, come back to work only to have to turn around and go home a little while later. Haley wasn’t the only one smiling when they got back to town! This weekend Haley and I are on our own at home. Chris went down to the races in Little Rock, Arkansas. Haley has a birthday party to go to for one of her classmates tomorrow. I think the birthday boy’s mom is brave for inviting all of the special needs kids to a party. I’m not sure I could handle that. It is at the Wacky Bear factory and Haley will get to make her own bear and t-shirt while we are there tomorrow. We’ve never been there but she will love it, I’m sure.

Thanks for checking in on us!

Friday, September 19, 2008 9:09 AM CDT

Hello Everyone,

Just thought I’d update to let you all know that Haley is finally feeling better. She sure was wiped out by the cold she came down with last week. She missed school last Monday-Wednesday and on Thursday I thought she was a little better (and it was picture day at school) so I sent her to school. Not even an hour later I got a call at work to come back for her. Haley had a lot of seizures that morning and I think she kind of scared the teacher with some of the more intense seizures that they hadn’t seen yet. Needless to say she didn’t get her picture taken and I kept her home that Friday too just to give her a chance to rest and feel better. Over the weekend she seemed to perk up a bit but still wasn’t quite back to normal. She has made it to school every day this week so far. Haley is still very congested off and on and a little more tired than usual. I think the biggest thing that has helped her to feel better is the beautiful weather we’ve been having. We’ve been able to go outside for walks and Haley gets so excited to go outside I think sometimes she is going to burst with excitement. She smiles so big and I think one of these times she will laugh out loud. We really have to take advantage of these nice days because I’m afraid they are numbered at this time of year.

Chris got a call this morning that Haley’s new shower chair is being ordered today. We were going to get it from a vendor recommended by Gillette in Minnesota but since insurance dictates which vendors we can use so we ended up having to order the chair locally. It has taken more time but hopefully the chair will be here soon and they will be able to have all the appropriate supports so that Haley sits in it comfortably and safely. The new shower chair also is a toilet chair so it will be interesting to see how that goes. I really think gravity combined with dedicated potty time will be of great benefit to Haley and her constipation issues. We’ll see!

I think that is all for now. I will update when there is more to tell! Thanks for checking in on Haley!

Wednesday, September 10, 2008 11:37 AM CDT

Hello Everyone:

Haley woke up Monday and was obviously not feeling well. I got her ready for school and soon realized there would be no point in making her go to school if she was feeling so miserable. She missed her first day of school Monday and Tuesday. I’m not sure if she’ll make it Wednesday either. She’s been running a fever and has a little rattle in her chest. I hope this doesn’t turn into anything big. So much for the new Sioux Falls school district attendance policy- we are certainly going to be pushing the 10 day absence limit at this rate!

Haley seems to be enjoying herself since school started but has been extremely tired. I wondered if she would eventually come down with an illness or if they really were just wearing her out. She goes to music class several times a week. Some days with her special ed class and some days with the regular 1st graders. They know music is her favorite part of the day. She also goes to art, gym and the library. When she is in the classroom she is working on reading and math (at least that’s what the notes she brings home say!). My mom said the other day when she went in to pick Haley up, Haley and one of the aides were looking at a clothing catalog. They’ve certainly found what interests her and fashion definitely outweighs math in Haley’s book. I always find it funny how people pick up on Haley’s “diva” personality.

A few weeks ago we got to attend the grand opening of the Make-a-Wish office in Sioux Falls. They had a wonderful party with plenty of food and entertainment. The mother of the first ever wish recipient was there and talked about how her son’s desire to be a police officer got the whole organization started. We toured the building and found Haley’s name on a plaque on the wall of the “Wish Room.” It was a fun evening out for us and it was awesome to see how many people support Make-a-Wish.

I think I’ll keep this update pretty short. Keep your fingers crossed that Haley can quickly get over whatever this illness is and can return to school soon.

Thanks for checking in on us!

Tuesday, August 19, 2008 9:33 AM CDT

Once again we are overdue for an update here!

On August 5th we headed up to the Minneapolis/St Paul area for Haley’s appointments. On August 6th we had to be at the hospital in St Paul bright and early for her surgery appointment. Once again she had botox injections and the phenol block procedure to keep her legs from getting so stiff and causing her pain. She was only under anesthesia for about an hour and before we knew it the nurse was calling us back to the recovery room. As Chris and I were walking back there the nurse was telling us what a great job Haley did and that she was already awake and looking around. We went into her room and the minute she saw us she just started crying and crying. We kind of had to laugh about that because her voice sounded so froggy and it was just so unlike her to cry like that. Everyone was trying everything to get her to calm down but Chris and I told them the best thing would be to pull her IV and give us the discharge papers. One of the nurse remembered Haley from last year when we told her that so she said if that’s what worked last time, she’d let us go. Sure enough, before we got to the car, Haley was happy and smiling. We went back to our hotel to rest and then headed to an appointment in Burnsville that afternoon. At that appointment we met with an occupational therapist to discuss a new shower chair since Haley is definitely outgrowing the one we’ve had since 2004. We looked at a couple of different options and decided on one that can be used in the shower and as a potty chair. I think Haley will greatly benefit from having a little time to sit on the potty but it is a little challenging to find something that will offer the support she needs to do that. Now we are just waiting for the insurance approval for that. After that appointment Haley and I were able to convince Chris to drive us to the Mall of America. He absolutely hates going there but we were looking for something fun to do and we hadn’t been there in years. Haley was a little sleepy and her tummy seemed a little bit upset but we just let her sit back and relax and she really was a good girl.

The next day was Thursday and we didn’t have any appointments that day until later in the afternoon. We picked up my sister and made her hang out with us all day. We went to the mall in Burnsville and then to lunch. At 2pm we went over to the clinic in Burnsville to pick up Haley’s new AFO’s (these are her ankle foot orthotics). Yep- the very day we found out that Haley’s beloved Brett Favre was going to now be playing for the NY Jets (thanks to a 6am phone call from Chris’ friend!), Haley picked up her Green Bay Packer AFOs. Good thing she’s still a Packer fan! They are very cute and we’ve gotten a lot of comments on them. What was really great was the orthotist gave us a pair of actual AFO socks to wear with them. I was telling her how nice those were so she gave us 2 more pair to take home with us. We went out to dinner with Sarah & Eric that evening and Haley had a tantrum in the restaurant. Something wasn’t right with her chair and she was pulling her arms back so hard that she her elbows were all black and blue the next day. She cried so finally I just held her until she settled down. Once she was calm I was able to put her back in her chair. I covered the metal hardware that was contacting her skin with a blanket and she was fine. Good thing the next morning we had the appointment to have her new seat put on her wheelchair frame.

We got to the clinic in Burnsville Friday morning at about 8:30am and except for a quick break for lunch, Brian worked on the chair until we left at about 1:30pm. Haley has a comfortable ride now! She sits up better than she did in the other seat and also has a soft tray on the front that supports her, but doesn’t bang up her elbows. She thinks she’s pretty cool and she looks like such a big girl!

We got on the road to come home after that appointment but due to an accident on the interstate, the traffic was slow moving. We got off the interstate and took back roads home instead so it wasn’t too bad. Haley was content the whole ride and we didn’t even stop for a break. Once we got home and unpacked we went to dinner with my parents to tell them about the trip and show off Haley’s chair. When we got home we were exhausted and ready for bed. As I was getting Haley’s feeding pump ready I realized I didn’t remember unpacking the charger for it. I asked Chris which bag he had put it in when we left the hotel that morning and he got this look on his face that said it all. The charger was still plugged in at our hotel room behind the couch. Chris called the hotel immediately and it took several phone calls to get them to actually go into the room and get it but they did and then they express mailed it to us. Chris wanted to drive up there the next day and get it but I told him I’d rather pay the postage than the gas cost. In the end they didn’t even charge us to mail it so that was really nice. Thankfully the feeding pump holds a charge for a couple of days so we were able to use it but we got that charger back in the nick of time!

This morning Haley went to 1st grade! Last week we went to the open house night and met her new teachers and saw her new classrooms. There are 7 kids in her special ed classroom and Haley is the youngest of the group. Lots of new kids to get to know as well as a teacher that is new to us. One of the aides in the class was with Haley last year so at least there is one familiar face. Her first grade teacher seemed really nice when we met her at the open house. I know there are a couple of kids in that room that were in kindergarten with Haley last year because they knew “Haley L.” and were sure to say hi to her. It’s nice to know she has some friends with her. Haley seemed happy when we dropped her off this morning. I guess with 1st grade you don’t have the same fanfare as you do when you start kindergarten.

I think that is enough for now. I didn’t want to turn this into a novel but I guess that’s what happens when I don’t get around to updating. Thanks for checking in on us!

Monday, July 14, 2008 3:06 PM CDT

Hello everyone!

The month of July has been a busy one for Miss Haley. We were able to take Haley to Ramona for the 4th of July parade because the weather was absolutely perfect. She seemed to enjoy the parade- especially the fire trucks when she could hear the sirens. For the most part though, she was just content to have people come over and say hello to her and admire her patriotic manicure with matching outfit (of course!). Even if she isn’t in the parade, she still likes to be the center of attention. After the parade, Haley headed over to Grandma & Grandpa L’s house to rest while Chris and I stayed in town to catch up with some of his classmates from high school. In addition to the 4th of July, it was also the weekend for Chris’ 20th class reunion.

The excitement from that weekend must have wiped Haley out because all last week she seemed extremely tired and just not quite herself. I kept thinking she was going to come down with something which I do not need to happen so close to our trip to MN next month. Maybe she was just conserving energy for this past weekend which was the weekend for the annual Hot Harley Nights fundraiser for Make a Wish. Aunt Amy called me last Friday to ask if we could fill in for one of her volunteers on Saturday. It was kind of a last minute thing but Haley and I (and a little later Chris came out too) headed over to Spencer Park to help with the Casino Run for the bikers that day. The weather was nice and we love Make a Wish so I thought it would be nice to get Haley out of the house. We sold drinks and Haley did a little PR work for Make a Wish. She was full of smiles! When our volunteer shift was over we went home for a little rest but then went back out to watch the parade of motorcycles. For a solid 45 minutes we watched bike after bike pass by us. Haley loved the noise and we helped her wave at everyone. Her poor little arms must have been tired but she never stopped grinning. After the parade we headed downtown for a couple of hours so Haley could hang out with her new biker friends. They had a band down there and hundreds of people so Haley really enjoyed herself. We left around 10pm and she was ready for bed by that time. As we put Haley to bed Chris said he thought Haley had one of her happiest days ever. I think so too! Who knew she’d be a biker babe?

Monday, June 30, 2008 3:52 PM CDT

Hello Everyone!

Not much going on here but thought I’d update anyway. Haley seems to be getting into her summer vacation routine. By that I mean she is staying up later and sleeping in mornings. Isn’t that what most kids do during the summer? She is so funny when I try to wake her up in the morning. She stretches and moans and groans and gives me dirty looks. Finally she’ll come around when I tell her it’s time to go to Grandma and Grandpa’s. Typical 6 year old, I suppose.

I got a call from Gillette a couple of weeks ago and they were ready for us to come and get her new wheelchair seat. I could not believe how fast that got approved through insurance! The lady on the phone even said some people wait YEARS for stuff like this. We’ve opted to wait and get Haley’s chair in August since that is when Haley will go in for the phenol block and botox procedure. I’d really love for her to have her chair now, but it makes more sense to consolidate our trips to Minneapolis. We’ll be busy the next time we go up there. Haley has to be at the hospital by 7am on August 6th (so we’ll drive up the evening of the 5th), we have a meeting with an occupational therapist to discuss a new shower chair later that afternoon, August 7th will be a day to rest and August 8th she will have an 8 hour appointment to get her new seat put into her wheelchair frame. Hopefully her new AFOs will be ready to be fitted on one of those days too. I think of it as Haley’s version of back to school preparation. She should be nice and comfortable when she starts 1st grade on August 18th!

Yesterday Haley was treated to her traditional 4th of July manicure and pedicure by our friend Holly. Haley’s nails look great! They are red and white with blue polka dots. She is very proud of them! Thanks, Holly! Haley sure enjoyed the extra attention.

I don’t know what we’ll do on the 4th of July yet. If it isn’t too hot we may take Haley to Ramona for the parade and other festivities. I’d also like to take her to see some fireworks but it all depends on the weather and of course, Haley.

Hope you all have a safe and relaxing 4th of July weekend!

Monday, June 9, 2008 10:15 PM CDT

Hello everyone!

Never fear- Haley made out like a bandit with her lost tooth. Between both grandparents the girl pocketed more money for that one tooth than I think I did losing all of my baby teeth combined! She has another really loose tooth but I told her not to expect the big bucks every time.

Last week we traveled to Minnesota for an appointment with the physical medicine and rehabilitation doctor. We left Thursday after work and had to go through some thunderstorms and tornado watches to get there but we made it! Friday morning we met up with my sister for breakfast and afterwards had some time to kill before our appointment so we dropped by the CaringBridge office. The organization that makes this website possible just so happens to have their office right next to the hotel we like to stay in when we go to MN for appointments. I contacted them about a month ago to let them know we would be in the area and would like to bring them a donation. I think I mentioned on here once before that my bowling team put together our nickels, dimes and quarters this season and we decided to give the money raised to CaringBridge. We ended up with $370- not bad for pocket change! The CaringBridge staff was extremely nice and they said they were so happy to meet Haley. We’ll have to post a picture here of Haley presenting the check to them. Haley must have known this was her own personal little “meet & greet.” She was a total ham! A big thank you to the bowling girls for raising the money and also our thanks to CaringBridge- not just for meeting with us, but also for allowing us to have this site as a way to keep everyone up to date on Haley.

After that we made a short stop at SuperTarget and then on to our appointment. We saw the doctor and she agreed with us that it is probably time for Haley to repeat the phenol block and Botox injections that we did last year to manage Haley’s spasticity. We’re all for anything we can do to keep Haley comfortable so we will go back in August for all of that. We also spent quite a bit of time discussing Haley’s equipment. First, her AFOs are quite old and don’t seem to be supporting her ankles and feet the way they need to anymore. The doctor was able to get us in with an orthotist that afternoon for recasting and the new AFO’s will be ready in a couple of weeks. I should mention that Haley was in an unusually happy mood during our entire visit at Gillette, and why wouldn’t she have been? She had just been treated like a celebrity at the CaringBridge office. She smiled the entire time but was especially happy while getting her AFO casts done. The orthotist was a younger guy, and I think Haley liked that. She grinned at him every time he said something to her. However, when Chris and I would say something to her from the sidelines, she would just look away like, “Mom and Dad- leave me alone! Can’t you see I’m busy here?” What a little flirt! Oh yeah- one other thing…her new AFO’s will have Green Bay Packer logos on them. Dad helped her decide.

We also talked with the doctor about Haley’s wheelchair. We’ve been complaining about that chair almost since we got it 2 years ago because there just has to be something out there that will offer her more support that this chair does. One of their seating specialists came in and measured her and asked us some questions about her current chair. He decided it’s time to build Haley a more customized seating system and we are very excited about this! By the time this all gets run through insurance and built, it will be around August by the time it’s ready. Hopefully we’ll be able to pick it up when we return in August. I’m going to take some “before” pictures of the way Haley sits in her chair now and hopefully we’ll have some “after” pictures in August and can compare the two. If nothing else, I hope this eliminates at least some of the bruising Haley gets on her arms from her chair. This morning as I was putting her in her car seat I must have done something to hurt her because she went from smiling to screaming at the top of her lungs within 3 seconds. I felt horrible but couldn’t even tell what the problem was. I didn’t see anything wrong and I couldn’t tell her old bruises from new bruises so who knows?

Once again Haley was an excellent traveler. I often wonder what goes on in her head. What does she think about all day? This car ride I really wondered because I find it funny that she doesn’t fall asleep in her car seat the way other kids sometimes do. She stayed awake the entire car ride there and all the way home too.

The CaringBridge people really made me think a lot about what we’ve been through with Haley. They had taken a look at this site before we got there and one of the first things they mentioned was that we were “old timers” in the CaringBridge world because we’ve had our site for a little over 6 years now. 6 years!!! Can you believe that? I read through some of the old journal entries today and remember what Haley used to be like. I know she doesn’t make giant leaps of progress but when you look back on 6 years of baby steps, the kid has come a long way. We all have. Nothing makes me happier now than saying something to Haley and having her smile back. Sure, the timing could be coincidental. She probably smiles at the wall when I’m not in the room. But it makes me feel good to have that interaction with her. To me it’s her way of saying, “Hey Mom- I’m in here!” She’s such great kid and we love her so much!

Thanks for checking in! I also read through about 6 years of guest book entries today. We never get tired of those (hint, hint)!

Thursday, May 29, 2008 1:51 PM CDT

Hello everyone!

It’s been quite a week at our house. Haley decided a great way to start her summer vacation would be a stay in the Peds ICU. We still aren’t completely sure what she had- just that it made her very miserable. She had a fever and some trouble breathing so I took her to the pediatrician thinking she probably had pneumonia or something. Thankfully, her lungs were clear on x-ray. However, one thing the x-ray did show was that her abdomen was so distended that her stomach was actually pushing up into her chest. That’s probably why she was having trouble breathing. Our pediatrician wasted no time admitting Haley to the hospital after seeing that x-ray. She said that was one of the worst distended abdomens she had ever seen. So we checked into “Hotel Sanford” where you can check in but never check out. It seems once Haley is a patient there, they have a little bit of trouble letting her go home even though they really aren’t doing anything at the hospital that we can’t do in our own home. She tested negative for influenza, RSV, and all the other basic illnesses. They can only assume it was a virus of some sort. I’ve found that is the standard answer when the tests don’t show anything. Viruses just have to run their course- you can’t do a thing about them so it is always the answer I dread hearing. On Friday I finally convinced the doctor that I was completely comfortable taking Haley home. I really didn’t want to spend Memorial Day weekend in the hospital. He let us go- only because I’m an “experienced” mom. Ha, ha- that would have made me laugh except I was so tired all I really wanted to do was go home and sleep in a real bed.

I did get introduced to a nice family up at the hospital. They have a beautiful baby girl and are just starting the seizure/mitochondrial disease journey. I knew they would want to know how Haley compares to normal kids so they would know what they might be dealing with. To people that don’t know Haley, it is so hard to get the point across that even though there are so many obvious things that she can’t do that other 6 year olds can, she is still the center of our lives because she offers us so much love and joy even with her smallest achievements. I hope I was able to convey that to them in some way rather than scare them. I remember all too well how difficult those first days are after your child is diagnosed with a condition that you can’t hardly pronounce let alone understand can be.

Haley seemed to be feeling better once she was at home. We took her on a little road trip last Sunday just so we could say we did something with our Memorial Day weekend. We went to Chamberlain, SD and looked at the boats on the river. Haley was so good the whole time we were out. But maybe this was too much too soon for her because now she seems like she isn’t feeling well again and has been running a low grade fever the last 3 days. I hope this is just residual and nothing new. I really don’t even want to take her to the pediatrician because we always end up in the hospital and I’m not ready to do that again any time soon.

In other really big news…Haley lost her first tooth! As I was tucking her into bed last night I noticed a gap in her bottom row of teeth. I had to count teeth over and over again to see if one was missing or if they had just shifted. Sure enough, she was one short. We have no idea where that tooth went- which is a little scary. I told her no tooth = no tooth fairy but Grandma & Grandpa disagreed with me. I’m sure she’ll get a little something out of the deal.

Next week we will head to Gillette Children’s in MN to see the physical med & rehab doctor. I’m looking forward to seeing her and setting up another round of Botox injections for Haley. The ones from last August have definitely worn off and that makes dressing and diapering a little more difficult.

I guess that is all for now. Hopefully we will have a quiet week with no repeat hospital stays. Thanks for checking in on us!

Friday, May 9, 2008 4:07 PM CDT

Hello Everyone!

Almost a month has passed since our last update and what a busy month it has been! Here are the highlights:

On April 21st, Haley had her annual sleep study. She was such a good girl and went right to sleep as soon as they put her mask on her- just like at home. They increased her CPAP pressure from a 5 to a 6. Not a big change, but nice to know we are keeping her comfortable at night so she can get the most out of her days.

Her sleep study was complete by 7am the next morning and she had a dental appointment at 7:45 so we headed straight there. I had to apologize to the dental hygienist that came out to get Haley for her teeth cleaning because Haley was looking kind of rough that morning. She still had a ton of glue in her hair and her face was kind of red and puffy from where they had pulled off all of the stickers that hold the leads on her through the night. The dentist mentioned that Haley is getting some loose teeth so a visit from the tooth fairy could be in the near future. Her 2 front teeth are loose but the permanent teeth aren’t ready to come up yet which he says is completely normal for a 6 year old kid. This might be the year for “all I want for Christmas is my 2 front teeth.” The 2 bottom teeth below her 2 front teeth are also loose. When you look at the x-rays in that area you can see the permanent teeth there and ready to come in. The dentist told us to keep an eye on those loose teeth because the last thing we want is for Haley to choke on a tooth. He told us we can pull them out (which at the time I’m thinking “Chris will do that” until I get home and tell him of this new job and he says, “NO WAY! I can’t do that to her!”) or the dentist will pull them in the dental office- however that would involve anesthetic, etc. So…perfectly fine for mom and dad to yank out her teeth but unethical for the dentist to do it without taking special precautions. For now, we’re just going to watch her closely and hope for the best.

Yesterday we had an appointment with the pulmonologist. He is always so impressed with Haley and thinks of her as one of his success stories. He told me yesterday that out of all of the many patients he sees, if Haley is the only one he has helped (which I’m sure is not the case) than it was all worth it. He continues to be as amazed as we are at how much the CPAP has given Haley a better quality of life. However, he was a little bit disappointed to hear that Haley has had so many respiratory illnesses this winter. It could be just bad luck or a sign that her respiratory system isn’t as strong as it used to be. We’re going to change her from a daily nebulizer treatment to an inhaler instead and see how she does. I’m hoping now that the weather has gotten nicer she’ll be much better for longer periods of time.

Only one more week of kindergarten! On Monday, Haley’s class gets to go fishing. I don’t know if she’ll care too much about the fishing but she will love being outside with the other kids. Our nurse, Joann, has been really great about taking Haley out in the afternoon and Haley enjoys it so much.

Sunday is Mother’s Day and I have to thank Haley for picking me to be her mom. This is the most important job I will ever have and I only hope that I am doing everything she needs me to do for her. She has given me the greatest gift. I also need to thank our moms. Haley has the BEST grandmas a kid could ever ask for. Running Haley back and forth to school or watching her for a weekend is such a big help to Chris and I. What would we do without those grandmas???

Happy Mother’s Day!

Saturday, April 12, 2008 7:19 PM CDT

Hello Everyone!
Here’s a quick update!

Last weekend Haley got to spend the weekend alone with Daddy and Grandma and Grandpa L while my mom and I headed to Aberdeen, SD for the state women’s bowling tournament. Sounds like she was a busy little girl while I was gone. I hope Grandma and Grandpa L were able to get some rest this week to recover from a week of keeping up with Haley.

This week at school it was Haley’s turn to be the “Star of the Week” in Mrs. Jensen’s kindergarten class. She had to bring in 5 photographs of herself as well as her favorite book to share with the class. We also had to fill out a survey all about Haley. It asked about her favorite foods, her family, things she likes to do, etc. Unfortunately, Haley had kind of a rough week seizure-wise so I don’t know exactly how much time she got in the spotlight. Today she was allowed to bring in treats for the kids and invite special visitors. My mom and dad are going to be her guests today.

****My mom just called me to tell me that they thing at school went well except for Haley having seizures. My mom read the book we sent to school (she said, “you didn’t tell me I had to read to the kids!”). We chose a book that Haley got for Christmas called, “Special Just Like You!” It has pictures of kids with special needs doing things that regular kids like to do too. Mrs. Jensen said the class loved the photos Haley brought in- especially the one of her swimming. They thought it was so good that she gets to go swimming all the time! The kids asked my mom and dad questions to see how well they know Haley- kind of like the Newlywed game. Didn’t know that was coming otherwise I would have let my mom know what we put down on the survey! They asked my mom what Haley’s favorite food is and she answered, “something tart, like lemon pudding.” The kids said, “NO, she likes cranberries!” My mom also said that the class put together a list of why Haley is special to them or reasons why they like her. She said one of them wrote, “I like Haley even if she’s in a wheelchair.” I can’t wait to go home and read what the rest of them wrote!

I have managed to come down with a cold this week and Haley is also coming down with it. We could be in for a long weekend at our house! On the bright side, it’s supposed to warm up so maybe we can get out and get some fresh air…once the snow melts, that is!

Have a great weekend and thanks for checking in on us!

Tuesday, April 1, 2008 6:03 PM CDT

Hello everyone:

Sorry so much time has passed since our last update! The last time I wrote, I told you Haley was coming down with a cold. Well, she managed to get over that cold and then catch another one over her spring break from school. Her lungs sound very rattly but she is coming around and we hope this is the last of the sickness this winter season. Spring is here and we are ready for warm, sunny days!

On March 11th Haley had a spring concert at school. I was expecting it to be a quick 15-20 minute program but it turned out to be a full hour of entertainment. The kids sang about 15 songs! Haley seemed to enjoy herself throughout the show. Music is by far her favorite part of the school day.

On March 14th we had Haley’s annual IEP meeting with the school. Not a whole lot came out of that meeting. I pretty much go along with whatever they want to put down on paper. She will continue to go just half days and she will receive 20 minutes of OT and PT and 10 minutes of speech therapy once weekly. Seems like such a minimal amount of therapy for a kid that has so many developmental delays. But for those of you not familiar with the system, the way it seems to work is if a patient can meet goals, they can justify more therapy time. If you are like Haley and don’t seem to demonstrate consistent progress, than they can’t justify spending more time with you. So my question is, how on earth are you supposed to make any gains with less therapy time??? I just don’t get it and I suppose I could fight them on it, but I don’t want Haley’s life to be about fighting with the school. They are such a minute piece of the puzzle. I told them at the meeting that the purpose of school for us is only to allow Haley time to socialize with kids her age. Period. They can take their geometry and reading goals (I’m not exaggerating) and do whatever they want with them.

Last week we test drove a mobility van to see how different it would be to transport Haley around in one of those. While it was wonderful being able to push Haley into the van- chair and all- and tie her down to the van vs. taking her out of the wheelchair, putting her into the car seat and then loading the wheelchair, we just didn’t care for the van itself. Our family support coordinator offered us $5,000 toward the purchase of a van from the state but considering the conversion is more in the $25,000 range plus the cost of the van it still isn’t what we want to pay for a 2007 Dodge Caravan with 20,000 miles on it. Chris has been exploring other options. There is a company called Freedom Motors in Battle Creek, Michigan that does vehicle conversions for wheelchairs on Honda Elements and other vehicles that aren’t vans. I told him when the right option comes around, we will know and we aren’t going to rush into anything as this is a major decision for us.

We had a very nice Easter weekend even though Haley wasn’t feeling the best. Once again the Easter Bunny was very kind to Haley. She scored all kinds of presents including 2 new shot glasses (I know you’re asking yourself what 6 year old gets shot glasses for Easter? I broke the one we used to dissolve pills in so we needed a new one!), some headbands, cold hard cash!, 101 Dalmatians on DVD, and a gift certificate for a manicure and pedicure (Mommy gets to go too- woohoo!). What a lucky girl!

Haley is still having some occasional gagging episodes with her feedings. I’m hoping once she gets over the crud once and for all that will all go away too. Even though they are talking snow for us tomorrow, we are more than ready for nice days. We know how Haley loves to GO (anywhere!) and it’s so much easier to take her out and about when we have nice weather.

That’s all for now. Thanks for checking in on our girl!

Friday, February 29, 2008 9:09 AM CST

Hello everyone,

I know we have some readers out there that have been anxiously awaiting this update. Sorry for the delay!

Haley had her upper GI last week. We braved the 20 below zero temperature (not including windchill!) that morning to get to her appointment only to find out nothing. Her upper GI was normal. The GI doctor didn’t have much to say other than continue giving her Prevacid and see you in a couple of months. I showed him the video and everything. Let’s just say I kind of expected this reaction from him. So typical! On the bright side, Haley hasn’t been having the gagging episodes nearly as often as she was. Maybe she had some sort of stomach bug? She has, however, done this at least once since the doctor visit and all I could do was look at her and tell her I’m sorry that they didn’t find anything to fix that and make her feel better.

This week Haley has managed to come down with a cold. She’s been congested and trying to cough but can’t or when she does finally get to cough, she has a coughing fit that leaves her even more miserable and just plain exhausted. She hasn’t made it to school at all this week or to swimming. The school is going to send the truant officer to our house! I really hope she is feeling better soon. We’re missing the sparkle in her eye.

A couple weeks ago I came across an article on the internet that showed parents in Iraq literally carrying their children to get wheelchairs. Apparently there is a huge demand for pediatric wheelchairs there and the US Army coordinated with a contractor who formed an organization to collect and refurbish chairs for these kids. Some of these kids had been injured, some had diseases like polio. I wondered if any of them had Ohtahara Syndrome or something like it. Some kids were very small while others were big kids- teens even. Can you imagine how limited their lives must have been without having the means to get around? It said in the article that a lot of those wheelchairs are put together by prisoners right here in South Dakota. We thought if the wheelchairs are originating in SD there has to be a way we could donate Haley’s old chair. I made a few phone calls and sure enough, we found the organization and they were really happy to have Haley’s old wheelchair. Chris is taking it to them today. Who knows where that chair could end up? We’re just glad that it will go to someone that needs it. It sure wasn’t doing much but collecting dust in our basement. Here is the link for more info on the wheelchairs http://www.cnn.com/2008/WORLD/meast/02/13/iraq.wheelchairs/

We’re tired of wrestling with the winter coat so here’s to warmer days and a healthy Haley. Thanks for checking in on us.

Thursday, February 7, 2008 1:23 PM CST

Hello Everyone~
Not a whole lot has been going on in the world of Haley. The only issue we are having is that she is continuing to have gagging episodes with her feedings. They seem to be even more frequent than before and it’s getting more and more frustrating for all of us. The first time I called the clinic to describe what Haley is doing, the nurse told me it sounded “behavioral” and that Haley must be doing this to get our attention. Though I wouldn’t put it past her, I know that she is not doing this on purpose. She even does it when she’s sleeping. The second time I called the clinic I got a different nurse and she talked to the GI doctor and they decided to do a trial of Prevacid in case reflux is causing the problem. We tried the Prevacid and nothing changed. So the third call to the clinic, I finally convinced them that this is something that needs to be looked at and they set up an upper GI series. But of course between the radiologist’s and the GI doctor’s schedules, the earliest we can get in for this is Feb 20th. So…two more weeks of watching Haley retch and gag and choke at the start of most of her feedings. I hope they can figure out something to fix this. In the meantime I have started to record this stuff on video just in case we get to the GI series and Haley decides not to demonstrate. I can totally see that happening too. I’m putting the videos on YouTube and asked the parents in the Ohtahara Syndrome online support group to take a look to see if their kids have experienced anything similar. If you want to see what we’re talking about I can send you the link, but I have to warn you- it’s not pretty.

This weekend is the annual CCHS MallWalk. Though we’ve participated in years past and always appreciated the donations from our family and friends, this year we will not be walking & rolling. Haley’s swimming class usually puts a team together but this year due to some staff transitions they are not. This year we’ve decided to focus our fundraising on another organization- CARINGBRIDGE! My bowling team had an idea at the start of our season to gather our nickels and dimes to see if we could raise funds for a good cause. I was very excited when the girls suggested we give the money to an organization that Haley benefits from. I chose CaringBridge because not only do we use it, but another bowler on our league also has a CaringBridge site for her son. Each time we bowl, if we get a strike we put in a dime. If we get a spare, we put in a nickel. Pick up a split and it costs you a dime. I don’t know for sure how much we’ve collected so far but I know it is in the $100 range. Not bad for just nickels and dimes, huh? Our plan is to deliver the donation to the CaringBridge office when we go to our next Gillette appointment in June. Coincidentally, the CaringBridge office is on the same street as the hotel we always stay in when we go up to the cities so that will be easy and also give us something to do while we’re up there. So since we aren’t doing the MallWalk this year, if Haley has inspired you to make a donation to a worthy cause, consider supplementing our bowling fundraiser and giving to CaringBridge this year instead. I can’t wait to announce our total amount raised!

That is all for now. I’m sure I’ll have more to report after Haley’s upper GI on the 20th. I’m really hoping for an easy fix and not something more involved (requiring surgery!). Keep your fingers and toes crossed for us!

Thursday, January 17, 2008 10:42 AM CST

First things first. Happy Birthday today to Haley’s Daddy! I don’t think he ever reads this site but I thought I’d put it out there so everyone knows he’s another year older. As Chris put it, it’s the “17th anniversary of his 21st birthday” today. He said he didn’t want anything for his birthday but I’m sure if when the Packers beat the Giants on Sunday both Chris and Haley will be happy campers. In honor of Chris’ birthday I will share a little story. Last week Haley brought home a family homework assignment. We had to cut out a snowman, decorate it and then return it to school to be hung in the hallway. I hate trying to come up with creative ideas for these assignments and Haley doesn’t give much input except to sit there and look cute. So this time I told Chris he was in charge- even though I knew he didn’t want to be. I was heading to bowling and told him the snowman was due the next day and he had to help Haley with her homework. I thought he’d blow it off and I’d come home and have to decorate the snowman myself. Much to my surprise I came home to a decorated snowman- all decked out in green and gold. I went into the living room to congratulate them on their good work but both were fast asleep in the recliner. It was really cute! The next morning Haley took her snowman to school and everyone made such a fuss over how great it turned out. You could tell she was just so proud of herself! It’s the only Green Bay Packer snowman hanging in the hallway too! What a good Daddy!

Not a lot has been happening since my last update. We had a very nice Christmas but I have to admit I am kind of glad to be back into our “normal” routine. Haley took some time adjusting to school again after such a long break. She wasn’t as perky in the mornings those first couple of days after vacation and she’d come home just worn out. One day we got a glimpse of what life with Haley used to be like when she slept from 4 in the afternoon until about 9 the next morning! I was starting to think she must be coming down with something but so far she’s remained healthy and is less sleepy each day. She is having some issues with gagging/choking sometimes when her feedings start. Up until yesterday she was only doing it when I fed her so I thought it was just me. But yesterday she did it for the nurse too so I think I may have to call the doctor and see what they say. It’s so scary when she does this because she can’t catch her breath and you just feel so helpless watching her. I’m sure if she pulled this at school they would call an ambulance so I’ve told her that is absolutely not allowed to happen at school. As if she listens to me! Thankfully though these episodes only seem to last about 30 seconds or so and afterwards she is back to her smiley self. We’ll see what they say…hopefully it will be an easy fix.

I think the only doctor we saw since my last update was the cardiologist. He likes to see her every year just to make sure that the mitochondrial disease isn’t attacking her heart the way it seems to affect her other muscles. So far everything looks good. They always do an ECG and it is neat to see Haley’s little heart beating away on the monitor.

In other news, Haley’s first home nurse has come back to us. Joann retired from her other job but has agreed to spend some afternoons with Haley. We are so happy to have her back! She is just such a good fit with our family.

I think that’s all for now. Thanks for checking in & I’ll try to update again soon!

Monday, December 10, 2007 1:21 PM CST

Hello Everyone!

Haley was treated to a manicure and pedicure the day after her birthday. I thought she would enjoy the experience but had no idea just how much. She smiled so much her face had to be sore the next day! Everyone in the salon paid extra special attention to her so she loved every minute of that. The next day we had both sides of the family over for Thanksgiving. Again, Haley was the center of attention that day- her favorite place to be. Thank you to everyone that sent a card to Haley for her birthday. What we found funny was that almost every single card she received had something to do with a tiara, a diva or a princess. There was a definite theme and we enjoyed each one.

The week after Thanksgiving we headed up to Minnesota to check in with Haley’s neurologist. The doctor was very happy with how Haley is doing and said she didn’t want to change a thing. Despite the seizures Haley seems happy and alert and comfortable. The doctor got a little teary-eyed a couple of times during our visit. She told us the first time she saw Haley she just didn’t know what she would be able to do to help her and now, 2 years later, Haley is almost like an entirely different kid. She didn’t think this much improvement was even a possibility. I know we are with the right doctor because I feel she sees Haley as a person and not just a bunch of seizures. After our appointment we did a little bit of shopping and then went to our hotel. Aunt Sarah & Eric joined us for dinner that night and the next day we decided to get on the road before the snow hit. The next day we got to stay at home, relax and watch the snow fall…and watch Chris clear the driveway a couple of times too! We won’t have to go back up for more appointments until June if all stays the same.

This week Haley has swimming on Wednesday, a cardiology appointment on Thursday and we’re also going to try and squeeze in our visit with Santa Claus. Busy girl!

I know the next 2 weeks are going to fly by and I won’t have time to update so I’ll just say it now- Merry Christmas and thank you for continuing to check in on Haley. We love reading the messages left for us in the guest book and just knowing that so many people from all over the world are thinking of us. Thank you!

Tuesday, November 20, 2007 1:45 PM CST

HAPPY 6TH BIRTHDAY HALEY QUINN!!

Yes, it is true, today is the big #6. Based on the photos taken after school today, somebody knows it is her birthday. Take a look at Miss Haley in her birthday hat on the photos page. With Thanksgiving on Thursday, Haley will think it is all just one big party for her and we wouldn't want it any other way.

Happy Turkey Day to ALL!

Tuesday, November 6, 2007 3:08 PM CST

Hello everyone!
Here’s a funny Haley story for our readers:

One day last week we were a little late getting to school. It had been one of those mornings where I couldn’t seem to find anything I needed. When I went into Haley’s room to see if she was finished with her breakfast I noticed that her feeding bag was still full- I didn’t hit the start button like I thought I had. The more I ran around the house like a chicken with my head cut off that morning, the happier Haley got. She must have thought I was hilarious. By the time we finally got to school (only 5-10 minutes late…not too bad considering!), Haley was in a really great mood. We got into the building and started walking to her special ed classroom. In order to get there, we have to go through the gym and her regular kindergarten class was already in there. When those kids saw Haley coming, they all started saying, “Hi, Haley L.” There are a couple of Haleys in kindergarten. Haley heard them calling her name and she started smiling like crazy. Pretty soon ALL the kids were calling out to her (I think there are about 23 of them) and then one little boy came over and asked, “Haley L., are you getting your hair cut or something?” I looked down at Haley and saw her sitting in her chair, with a goofy grin on her face and wearing her poncho. It hit me- the little boy thought the poncho was the cape you wear when you get your hair cut! Kids are so funny!

I had Haley’s 1st kindergarten parent teacher conference last night. She got a good report card! The teacher said we may never know how much Haley is actually learning but it never hurts her to expose her to the same information as the other kids. I agree. When Haley brings home a list of words that all start with the letter they are learning that week and I read them she always gives me a look like, “hey- how did you know we were talking about that at school today?” Otherwise, school seems to be the place where Haley can socialize and show off her wardrobe.

Two weeks to Haley’s birthday! I can hardly believe its November already but was given a reminder when we left the house this morning and it was only 20 degrees outside! Let’s hope the winter months fly by as quickly as the rest of the year did. Carrying 42 lbs of Haley is one thing. Carrying 42 lbs of Haley, plus her winter coat while I’m wearing my winter coat and gloves is something else! I’m going to either have to start lifting weights or Haley and I will have to winter on a tropical island somewhere. That’s not a bad idea…

Monday, October 29, 2007 1:29 PM CDT

Hello everyone:

Just when we all got back to feeling better again, Haley had to go and get sick. At least this time we didn’t end up in the hospital! Last week Haley got very fussy and whiny and cried A LOT. Before I knew it she was running a fever all over again. This time she seemed to have more trouble breathing through her nose than anything else so I decided to take her to the pediatrician to see if she had a sinus infection. The pediatrician ordered an x-ray of her sinuses and her chest just in case- he said there is a nasty pneumonia bug going around the schools. Sure enough, and much to my surprise, the sinus x-ray was clear but the chest x-ray showed pneumonia. More antibiotics and another week off from school for Haley. I told her just because the other kids are doing something it doesn’t mean she has to do it too! After just two doses of the antibiotics you could tell Haley was feeling much better. It’s almost like flipping an on and off switch with her. This is her third illness since school started- yep, I’m keeping track. If she keeps this up we might have to keep her at home which is something I would hate to do. ‘Miss Social Butterfly’ sure likes to be around those kids. She’d be so bored at home without them but getting sick and being on antibiotics all the time isn’t going to do her any good either.

Unfortunately, Haley’s illness started the weekend we were all supposed to be feeling better and ready to tackle our biggest home improvement project to date- a new kitchen floor! Not only did we have a sick little girl that required extra attention but we also had our kitchen torn apart for most of the weekend. A big thanks to everyone that fed us those days and an extra big thanks to Auntie Amy for helping us get the floor in. It looks great!

I did have an opportunity to go to school one day with Haley the week before she started feeling bad. I got to go to Haley’s music class and the kids all got a chance to play an instrument called the metalaphone. Haley just loved it! The music teacher also played guitar and piano for the kids and they all sang along. It was very evident that Haley enjoyed that. We left school at noon- Haley was tired and so was I! I don’t know how the teachers and aides have the energy to keep up with those kids day after day.

Have a happy & safe Halloween! Thanks for checking in on us!

Monday, October 1, 2007 9:18 AM CDT

Sorry for the lack of updating lately. I wrote up an update last week but before I had the chance to get it posted, all heck broke loose at our house!

If I remember correctly, the update I didn’t post talked about how well Haley is doing to school and all of the fun things we’ve been doing with her now that the weather is not too hot and not too cold. Check out the photos from our trip to the apple orchard a couple weekends ago. Haley had a blast- especially after getting a glittery butterfly painted on her face!

Last Thursday we noticed Haley coming down with a bit of a cold. I sent her to school that morning and when my mom & dad picked her up that day they called to tell me that Haley still seemed like she wasn’t feeling well. She rested after school and took a long nap. When I got to her after work you could tell that she was going downhill fast. She spiked a fever and was moaning and having a lot of seizures. I called Chris and told him I thought we should run her into the after hours acute care clinic just to check her out. Even though I hate going to a doctor that is unfamiliar with Haley, I thought this might save us a late night trip to the ER later. I figured since she had a fever they would probably find an ear infection or something “easy” like that and we’d be on our way. Well…nothing is ever that easy when it comes to Haley. The doctor was concerned about Haley’s oxygen levels being so low so we were sent to the hospital to be admitted. Haley was in from Thursday night-Saturday evening last week. We don’t think it amounted to much other than just a really bad cold that made it difficult for her to breathe. They treated her with antibiotics just in case it was pneumonia (never showed on the chest x-ray but they wanted to be safe). Haley is still battling her cold and has missed over a week of school now. I am hoping she starts feeling much better over the weekend and can go back to see her friends on Monday.

In the meantime Haley was kind enough to share her illness with both Chris and I. Chris got it before Haley was even out of the hospital. He called me from work on Wednesday complaining of chest pain in addition to what I suspected may be a sinus infection. I nagged at him long enough that he actually went to a doctor. The doctor pretty much gave him 2 choices- either get a ride to the ER or go in an ambulance. I met Chris in the ER at the hospital and they ran all sorts of tests to rule out a heart attack or other heart problem. They even made him stay overnight but thankfully everything came out normal. He’s taking it easy at home and now my cold is really starting to hit hard. I am hoping to be the only one in the family to get through this without a hospital stay! We don’t need to see the inside of a hospital room again for a long time!

What a week! That’s enough excitement for us for a while. Here’s hoping we have a quiet, restful weekend at home!

Tuesday, August 21, 2007 11:48 AM CDT

Hello everyone!

Our baby is in kindergarten! Last week we got to go to an open house at the elementary school to tour the classrooms and meet the teachers. We also dropped off her school supplies. Haley’s grandmas have both made sure that Haley has everything she will need and then some to have a successful first year of “real” school. Haley will spend part of her day in a special ed classroom and part of her day in a regular kindergarten class right across the hall. There are only about 5 kids in the special ed room and some of them are old classmates from the other school. Her teacher is Mrs. Benz and there are also 2 aides in that room. So far they all seem very nice and I didn’t feel the least bit uncomfortable leaving Haley in their care. The regular kindergarten teacher is Mrs. Jensen (who happens to live across the street from my parents) and there are a LOT of kids in that room. I can’t get a count because those kids are all over the place! Haley will love it but she’s going to be a busy girl. Not only will she bounce back and forth between the 2 classrooms but they will also have her go to art, music, PE, library and also her therapies. Even though kindergarten runs from 8:00-2:45, we’ve decided to pick her up at 12:30 every day, at least for now. Yesterday she looked so tired when we got there. I don’t want to overwhelm her and we’re not ready to give up the nurse at home just yet.

Since yesterday was the first day of school for the kids, it was a little chaotic getting there. The parents were trying to drop off kids and there was also a thunderstorm going on. We had to kick someone out of a handicap parking place because they shouldn’t have been there in the first place and there was absolutely no other place to unload Haley. What a mess! Today we opted to park at my mom’s house and walk from there. It’s only about 3-4 blocks and since it was a much nicer day I thought it would be much easier. I was right! As long as the weather stays nice I think we will continue to do that. This is SO much better than trekking across town to get to school like we’ve had to do in past years!

This is a very exciting time for us. We are so proud of our kindergarten girl!!!

Thursday, August 2, 2007 6:54 PM CDT

Hi all!

Even though a month has passed since my last update I promise this one won’t be nearly as long winded as the last one was. I just wanted to let everyone know that Haley had a procedure done yesterday morning. She had the phenol block and botox injections done to reduce muscle spasticity and hopefully make her a little more comfortable. She was scheduled to go into the OR at 11:45 and the whole procedure lasted 15 minutes. She came out of the anesthesia with no problems. I had been having long talks with her about that all week. She wasn't allowed to take 3 days to wake up.

We missed the horrible bridge collapse in downtown Minneapolis and made it home safely. I will update more in my next update.

We’ve loved reading all of the encouraging messages in the guestbook (also let’s us know people still actually read my ramblings!) and appreciate everyone checking in on our girl!

PS- Aunt Amy added some great new photos too…check ‘em out!

Wednesday, June 27, 2007 10:28 AM CDT

Hello everyone!
I need to hurry up and update before I forget all of the details of our trip to St Paul! Warning- this could be a long one!!!

We left fairly early last Thursday morning (6/14) so we could get to our 12:30pm appointment in plenty of time. We always try to allow extra time in case we need to give Haley a break from riding. She did very well on the way up- she was awake and happy the whole time. We only stopped once for a diaper change and to give her a break from sitting. We have a great system in place when it comes to traveling with Haley. I can set up her feedings in the Element and we have a nice space to change diapers.

The first day at the clinic we had appointments with both the physical medicine & rehabilitation (PM&R) doctor and the orthopedist. Before seeing the doctors, Haley had to have an x-ray of her spine and have her height and weight taken. Every time Haley has an x-ray I am the one that assists the technicians with positioning her, which means I get to wear one of those lovely leaded aprons. By the time we get Haley out of her chair, positioned, held in place for the x-ray and back into her chair, I have usually worked up a sweat. Thursday was no different. After the x-ray we headed down the hall to have a height/weight check. As soon as Haley was placed on the scale she let me know that she had to poop. This is something that requires immediate attention and we can’t pass up the opportunity for Haley to go. They quickly recorded Haley’s height and weight (42 lbs and 40 inches, by the way) and we headed for the bathroom. It took a little bit of time for Haley to get the job done but she did and just in time for us to be called back to see the doctor. I think she must have weighed at least 3 lbs lighter and I was tempted to ask them to reweigh her but there was no time. Anyway, by that time I was really sweating after all that running around! First we met with the PM&R doctor. Haley was still as happy as ever and really showing off by smiling and moving her arms and legs a little bit on her own. Six months ago when we saw this doctor we were dealing with Haley crying almost every time we moved her legs. A drug called Baclofen was added to help relax those tight muscles and we were pleased to report that this has seemed to help a lot. The doctor thought we could increase the drug a little more as long as it doesn’t make Haley too sleepy because there is still some spasticity in those muscles which we notice a lot when doing diaper changes. We also decided to go ahead and try another treatment for those spastic muscles- phenol block and Botox injections. Imagine- Haley getting Botox just like the rich & famous! As of right now we aren’t sure when we will have this done, but would like to schedule it soon. The shots have to be done under general anesthesia which is kind of scary but I think if they work, it will be worth it. The doctor also suggested giving an injection in Haley’s neck to see if this would help her keep her head more midline. Muscle spasticity in her neck may be forcing her to turn her head to one side all the time. We hadn’t really thought of this before but it makes perfect sense.

Shortly after seeing the PM&R doctor we saw the orthopedist. She didn’t have a lot to say other than Haley looked good (yeah- she was still showing off!) and the degree of scoliosis noted on her x-ray in December didn’t seem to increase at all. She thought increasing the Baclofen and trying to shots to manage spasticity were a good idea.

After those appointments we headed to our hotel. I wasn’t able to get the rate we usually get when we stay at the Holiday Inn Express so this time I reserved a room across the street at the Staybridge Inn & Suites instead. The Staybridge was very nice. We had a HUGE room and an evening meal and breakfast buffet included. We may never go back to the Holiday Inn Express! Chris was kind and took us to a Super Target that evening. I love Target and had never been in a Super Target before so this was a real treat for me. He even let us go up and down all the aisles even though we didn’t buy a darn thing. Doesn’t take much to entertain us, huh? Afterwards, we went back to the hotel and then walked across the street to the Dairy Queen. Haley had been a super good girl all day and deserved a treat.

The next day we didn’t have our appointment until 2:30pm. We didn’t know what we were going to do with our day so we started off with sleeping in and breakfast at the hotel. I had a feeling even before we left our room that morning that Haley wasn’t going to have as good of a day. She seemed so whiny and wouldn’t sit up nice in her chair. Sure enough, once we were in the car it didn’t take long before she was crying and there didn’t seem to be anything we could do to get her more comfortable. We ended up exploring St. Paul on our own which was kind of fun but between a crabby Haley and the heat, it seemed like a long day already. Finally we decided to just head over to the clinic a little early to see if maybe we could be seen early. We checked in, went to get Haley’s vital signs taken and then went to the waiting room to wait. Not long after we got there the receptionist came over and informed us that the neurologist had an emergency at another hospital and would be about an hour late. This pushed our 2:30 appointment time to 3:30 pm. They were all very apologetic but what could be done? These things happen and if Haley was the emergency, I sure as heck would want the doctor to stay with us through it. Haley continued to be very fussy and we decided since we had some time to kill that we would head down to the hospital cafeteria for lunch. When we returned to the waiting room it seemed like only a little bit more time passed before they called us back to the exam room. We met with the nurse first and that is when Haley started having some of her worst seizures. In a way I suppose this was a good thing because then the doctor could see the seizures first hand. Dr. Wical, the neurologist, asked us if we had our diazepam with us to knock out the seizures or if she would have to order it from the hospital pharmacy. We gave Haley the diazepam and she calmed down but was still uncomfortable and whiny. We had a long talk with Dr. Wical about what Haley has been up to in the 6 months since we last visited. We reported that Haley seemed to have had a period where the seizures were the lowest that they have ever been (maybe 25-30 a day?) and she was so happy and alert but that in recent weeks the seizures were on the rise again. First thing Dr. Wical checked was Haley’s weight. Maybe she had simply outgrown her Lamictal dose. No such luck- Haley’s weight was almost exactly the same as it was back in December. On to plan B… Dr. Wical thinks Haley may have habituated the drug meaning her body has gotten used to having Lamictal in her system and therefore it just is not as effective as it was before. There is a chance that we may be able to pull Haley off the drug and reintroduce it later and still have the same effect we had before. Dr. Wical was surprised that Haley responded so well to any drug and now she says this makes her want to try other drugs. Just because they aren’t effective in children with conditions similar to what Haley has, that does not mean we should not try them- especially if the side effects are relatively low risk. Haley has demonstrated that she is not always going to respond the way kids typically do. She does her own thing. We all know that, right? We’re going to try a new drug called Neurontin to see if we can chase away some of those seizures. If that doesn’t work, Plan C would be to try drugs that help regulate autonomic response. Dr. Wical is doing a research study (and Haley is officially in this study) on kids with neurological disorders and autonomic response. To summarize (as if this isn’t already a novel- sorry!), Dr. Wical is trying to correlate things like increased heart rate and what we refer to Haley’s “hot spots” (like when she has one hot foot and one cold foot) with seizures and other neurological impairments. If the Neurontin doesn’t work there are a couple of drugs that help more evenly regulate these autonomic responses and could possible prevent her from having seizures. If you sit back and think about it, it makes sense and I should have known that day in the clinic that Haley would have a bunch of seizures coming on just by looking at her right arm. It was beet red- almost like she was sunburned but just on that one arm. Soon after, she had seizures and then we gave her the diazepam, she settled down and the redness went away. Interesting stuff…well, to us! Dr. Wical also wanted us to seriously consider 2 other treatments and both are things we’ve discussed before- the ketogenic diet and the VNS implant. The keto diet is a high fat/high protein diet and we hesitate to put her on this because of the fact that she has an underlying mitochondrial disease. Way back when we were going to Mayo the doctor there told us that she believes Haley’s condition may have something to do with her body not being able to process fats and proteins. If this is the case, the keto diet could be very dangerous for her. Dr. Wical said we wouldn’t do anything without consulting with Mayo and there is one doctor there in particular she said she would ask. She says he is a real genius in this field. For us the keto diet just does not seem like any fun at all. It’s a lot of work and we have not read of a lot of success stories with the keto diet and kids like Haley. But as we said before, Haley is unique and maybe it would help her. Who knows? The VNS would have to be surgically implanted and again, the statistics do not seem to show a great success rate in someone having as many seizures as Haley has but what if it could cut her seizures in half? Half of 30 would be 15 and while most people would think 15 seizures a day is complete hell, for Haley it would be a phenomenal improvement. We just don’t know. Both the keto diet and VNS would require extended stays at the hospital in St Paul and we hate the idea of any hospital time- especially being in a hospital away from home and our support system. Let’s hope plans B and C are as far as we have to go. We love that Dr. Wical spends so much time for us and gives us options. As she told us that day, she is just trying to get Haley “as Haley as she can be.” That’s really all we want. Our Haley to shine through.

We didn’t start the drive home until about 5:30pm Friday night. Haley was unhappy pretty much the whole way home so we made a few stops to try and keep her semi comfortable. We were all tired and we had a lot to think about. I was kind of wishing we had kept our nice hotel room for one more night but we made it home sweet home by about 10pm. I think the best thing was that we got back on Friday and we were able to have Saturday and Sunday to recover.

I’m sorry this update is so long but we did have a busy couple of days. Thanks for checking in on us!

Thursday, May 31, 2007 11:42 AM CDT

Hello everyone:
We have an official graduate of the Sioux Falls early childhood program among us! Haley graduated on May 17th. Her school held a small program at a city park that day. The kids wore glittery top hats and received diplomas after they sang a few songs to the audience. Because the program was held outdoors, we really couldn’t hear the kids singing all that well but when they would finish a song, everyone would clap and Haley’s eyes would light up. I guess she thought they were clapping for her. When Haley’s teacher gave her the diploma Haley promptly threw it on the ground. I guess she’s ready to move on to kindergarten!

We’ve decided to give Haley the summer off so she will not be attending summer school this year. For the 9 hours of school they have a week, and only about 10-20 minutes of that week being therapy time, it just does not seem worth it. We also question the ease of getting so many special needs kids in and out of the current school parking lot. There just isn’t a lot of space and we don’t think it will be worth the hassle. We’re going to keep her at home and take her swimming twice a week instead. We know she’ll enjoy that!

Haley has had a couple of doctor’s appointments. She was seen by the feeding team on May 16th. They were a little concerned that she had dropped a little bit of weight and wanted to increase her calorie intake again. I told them to take a good look at her- this kid looks healthy. If she’s on the lighter side it will be easier to take care of her. They agreed to keep her diet the same and we’ll go back in 2 months for another check. This week we saw the pulmonologist to follow up on her most recent sleep study. He was very pleased with how well Haley is doing. He mentioned that every time Haley is in the sleep lab, she is the patient the techs want to see because she has the most unusual test results. He also said that whenever he is having a bad day or feeling like he isn’t helping anyone, he thinks of Haley and knows that he is making a difference in the lives of his patients. It’s always nice to hear Haley is not only an inspiration to us but to others as well.

We’ll head to St. Paul next month for a few appointments. I’m kind of looking forward to a little “getaway” even though I wouldn’t call going to doctor’s appointments a vacation.

Until next time...

Thursday, May 10, 2007 11:42 AM CDT

Hello everyone~
I thought it was time for another update. Now I just have to remember what we’ve been doing since our last update! Be sure to check out a few new photos of Miss Haley too.

The month of April kept us busy with appointments and meetings. Haley went to the dentist for her 6 month checkup. The dentist felt that Haley’s gums are very inflamed and bleed a lot when we brush them. He prescribed a mouthwash to brush on her gums once a day that will hopefully help with this problem and possibly prevent a more serious infection. The day we went to the dentist it was snowing like crazy. Haley was not too happy with me that morning! Then on top of it all she had the dentist poking around in her mouth- again, not something she likes. She was kind of a grouch but never cried. When we got home she was running a bit of a fever. She never seemed to get sick so I think she just got herself all worked up that day. She was just fine later on.

The next day I had to go to Haley’s new school and meet with the “team.” This consisted of me, Haley’s current teacher and therapists, 2 teachers from the new school, a couple of therapists from the new school, the new school principal and the new school nurse. Again, not a lot accomplished at this meeting. They basically just wanted to know what kind of kid Haley was and what her needs are and then based on that information they sat around and started planning what a typical school day will be like for Haley. For example, she will spent .6 hours a week doing calendar time with the regular classroom and .4 hours a week in music class, etc. Paperwork, paperwork. I probably should have taken Haley with me to this meeting so they could see her but I didn’t because once again it was snowing and I didn’t want to go through the trouble of taking her out in that weather.

The next week Haley had a repeat sleep study so that meant Haley & I got to have another slumber party in the sleep lab. Haley did really great but did have a lot of seizures throughout the night that kept me awake. I never sleep that close to her so I had to wonder if she does that every night and I just don’t hear her or if she was just having a difficult time that particular night. We don’t see the pulmonologist until May 21st for the official results but unofficially the home medical place has already called and told me that her CPAP pressure setting can be decreased from a 7 to a 5 and that the doctor has already written orders for that to be done. I guess that is a good sign.

We’ll have a busy May as well. In addition to the pulmonologist we have to go back to the feeding clinic for a weight check and I also have to have another conference with Haley’s teacher, although I’m not sure why. We’ve seen an awful lot of each other recently but I suppose they have a required number of meetings. On May 17th Haley will graduate from the early childhood program. At first I thought this is no big deal but now I am starting to realize this really is going to be one of the important milestones in Haley’s life. I didn’t think Haley going to kindergarten would be that big of a deal either since she started school at the age of 3 but because she’s had to go through so much in her life, I think it makes it even more of an accomplishment. I am going to be the proud mother of a kindergarten student! I only hope the teachers and therapists will make us proud too.

We’re supposed to go back to Gillette Children’s in June to see the neurologist and a couple other doctors but as of yesterday they have had to switch around appointment dates and times so we may end up making two trips instead of one. Not very convenient but I would rather do that in the summer than the winter if we have to. I’m getting a little anxious to see the neurologist too because I just have a feeling the seizures are on the rise again. Hopefully we can get a handle on that.

I have to go to Rapid City for the state women’s bowling tournament this weekend. I hope Haley is an extra good girl for her dad while I’m gone and doesn’t give him any trouble.

Other than that we’ve been trying to enjoy the outdoors as much as possible. We’re so happy to have our back deck back after a long, cold winter. When the weather is nice, it becomes the most used room in our house. We were eating dinner out there one night a couple weeks ago and Haley was just looking at us like, “Hey…how come we haven’t been coming out here all along? This is nice!” Still no buyers remorse on the house- we know it was the right place for us! Our trees are blooming with beautiful blossoms. I need to get out there and take some pictures before I leave this weekend and Chris gets at them with his chainsaw.

Thanks for checking in on us!

Wednesday, March 21, 2007 1:28 PM CDT

Hello everyone!

I just wanted to let everyone know that Haley managed to get over her cold or whatever it was that she managed to come down with last week. Poor Haley was just miserable and so tired. One night she slept for 16 hours straight and I thought she might be reverting back to her old ways. We sure missed our smiling girl! By Friday, the smiles were gradually coming back and Haley seemed a lot more comfortable over the weekend. She went back to school on Monday but yesterday she seemed like she wasn’t feeling good again. We think it might have something to do with molars that are trying to come in. We have an appointment with the dentist the in April. I hope we can make it until then!

Not much else to report since the last update. Haley did have to check in with the feeding team last week. She put on a couple of pounds but they didn’t want to make any changes to her diet just yet. We’ll have to go back and see them again in May.

I had to go to another IEP meeting last week with the teacher and all of the therapists. As usual, a long meeting that didn’t really accomplish much other than to satisfy the paperwork requirement so that the school can get their funding. At least that’s how it felt. Everyone did comment that Haley is so much more alert and seems happy and interactive these days- especially when she’s around the other kids at school. That was nice to hear. I am really proud of her because even just a year ago she was sleeping through most of her day and now she’s a completely different child. I think in April we will have the opportunity to go over to the new school and see what kindergarten will be like for Haley. I keep telling myself the change will be for the better…I sure hope that is the case.

Spring is here and we’ve already had some nice weather and can’t wait for more to come our way. It’s so nice to be able to take Haley for a walk or just sit out on the deck with her. She really enjoys being outside.

If I don’t update again between now and then, have a Happy Easter!

Monday, March 12, 2007 2:38 PM CDT

Hello Everyone!
Yet again I have managed to fall behind on my Haley updates. I now know that people are actually reading the stuff I write because so many people have asked me why I haven’t updated in so long.

Things have been pretty uneventful at our house for the most part, and that’s the way we like it. We participated in the CCHS Mallwalk on February 10th. Thanks to all of our donors and thank you to my mom for walking with us. We had fun! There was a slight detour to Old Navy during the event. Haley was treated to a new swim suit- a 2 piece tankini this time- courtesy of her grandma. She thinks she’s pretty cool. Even the swimming teacher noticed that Haley is extra excited when she has the new suit on. I think she knows when her clothes have tags on them because she just loves to have something new. Typical girl!

In February we had to say goodbye to one of our home nurses. Joann had been taking care of Haley for us for close to 2 years now. I know they had a very special friendship and Haley is going to miss her. We all will! Joann left Haley a very special card and we appreciate that as well as everything else she did for us.

We managed to survive the blizzard last week. I was very lucky that my boss decided to close for a couple of days. The day the snow started falling I left work and for the first time all winter I had to clean off my car. Having an attached garage is spoiling me! Haley and I got to stay at home but unfortunately Chris had to go out in it everyday. We made sure there was lots of good food for him to come home to. I liked being able to spend extra time with Haley and I was glad we didn’t have to go out anywhere.

I hate to even mention it but Haley has been extremely healthy this winter. In a couple of weeks we’ll mark one year since our last hospital stay and we are in no hurry to go back. Now that I’ve typed that something will probably happen. I really hope not! Seizures are about the same- she has good moments and bad moments throughout the day but the last seizure medication we added (Lamictal) is making her very smiley. She’s come close to laughing out loud a couple of times but hasn’t done it for us again yet. I read someone describing the side effects of Lamictal on a neurology message board the other day. They said it can make a person laugh really hard at something to the point that they can’t stop laughing but the thing that made them start laughing isn’t really all that funny to begin with. I think there may be some truth to that with Haley.

We have a couple of appointments coming up. Haley goes to the gastroenterologist next week and then the dentist the first week of April. There are also ongoing meetings and evaluations for kindergarten. In April Haley will also have a repeat sleep study done to make sure her CPAP settings are still where they need to be. Always lots to do!


****Apparently Haley reads my updates too. She read the part I wrote about her being healthy and she decided to come down with something. Hopefully it’s just a cold and won’t develop into anything more. Go figure- just as soon as we get some decent weather, she gets sick.

I get it, Haley. No more bragging about your good health!

Thanks for checking in on us!

Friday, March 9, 2007 3:06 PM CST

Hello Everyone!
Yet again I have managed to fall behind on my Haley updates. I now know that people are actually reading the stuff I write because so many people have asked me why I haven’t updated in so long.

Things have been pretty uneventful at our house for the most part, and that’s the way we like it. We participated in the CCHS Mallwalk on February 10th. Thanks to all of our donors and thank you to my mom for walking with us. We had fun! There was a slight detour to Old Navy during the event. Haley was treated to a new swim suit- a 2 piece tankini this time- courtesy of her grandma. She thinks she’s pretty cool. Even the swimming teacher noticed that Haley is extra excited when she has the new suit on. I think she knows when her clothes have tags on them because she just loves to have something new. Typical girl!

In February we had to say goodbye to one of our home nurses. Joann had been taking care of Haley for us for close to 2 years now. I know they had a very special friendship and Haley is going to miss her. We all will! Joann left Haley a very special card and we appreciate that as well as everything else she did for us.

We managed to survive the blizzard last week. I was very lucky that my boss decided to close for a couple of days. The day the snow started falling I left work and for the first time all winter I had to clean off my car. Having an attached garage is spoiling me! Haley and I got to stay at home but unfortunately Chris had to go out in it everyday. We made sure there was lots of good food for him to come home to. I liked being able to spend extra time with Haley and I was glad we didn’t have to go out anywhere.

I hate to even mention it but Haley has been extremely healthy this winter. In a couple of weeks we’ll mark one year since our last hospital stay and we are in no hurry to go back. Now that I’ve typed that something will probably happen. I really hope not! Seizures are about the same- she has good moments and bad moments throughout the day but the last seizure medication we added (Lamictal) is making her very smiley. She’s come close to laughing out loud a couple of times but hasn’t done it for us again yet. I read someone describing the side effects of Lamictal on a neurology message board the other day. They said it can make a person laugh really hard at something to the point that they can’t stop laughing but the thing that made them start laughing isn’t really all that funny to begin with. I think there may be some truth to that with Haley.

We have a couple of appointments coming up. Haley goes to the gastroenterologist next week and then the dentist the first week of April. There are also ongoing meetings and evaluations for kindergarten. In April Haley will also have a repeat sleep study done to make sure her CPAP settings are still where they need to be. Always lots to do!

Thanks for checking in on us!

Monday, January 29, 2007 2:03 PM CST

WARNING- this is a messy update!

By now most of you probably know that in addition to seizures Haley also battles constipation. We talk about it a lot. Poor Haley- when she finally does “go” it’s enormous. One night last week she managed to pass a stool that was so huge I took a picture of it and presented it to the gastroenterologist. Don’t worry- that’s a photo that will never be posted here! The doctor looked at it and said, “Wow. That is big.” Hmm…isn’t that what I have been telling him for months, if not years? His solution was to try giving Haley 4 ounces of magnesium citrate, an over the counter laxative. We’ve tried many, many laxatives in the past and none have done the job we need it to do. Sure, give her enough of something and she will produce but the real problem is that she just doesn’t have the muscle control to push it out of her until there is a huge buildup. Still, I agreed to try the magnesium citrate figuring it’s not going to be too harsh since it’s available over the counter, cost less than $2 a bottle and nothing on the label indicated to me that it would do what it did to Haley. I gave her the solution at bedtime Monday night and on Tuesday morning when I went into her room I immediately smelled poop. I was actually kind of happy because I thought we might be onto something that worked. Only then did I turn on the light and pull back Haley’s bed covers. She was in a bed of liquid poop. I didn’t know where to start- she was covered from head to toe. Needless to say, Haley didn’t go to school that day and I had to call work and tell them I’d be in late. I should have taken a picture of the mess and taken that to the doctor!

Since Haley will be going to kindergarten next year we have already had to start the process of getting her transitioned out of the early childhood program and into the kindergarten program. Chris and I attended an informational meeting to learn about kindergarten. It was a general meeting for all parents so most of the talk was about learning to read and write. A lot of that didn’t apply to us. They did have a separate meeting after the main presentation for parents of kids with special needs that answered a few of our questions. Sounds like Haley will be in a classroom with 6 or 7 other kids and each of those specialized classrooms will have 2 aides plus the teacher. The kids in the class may be in different grades but their ability levels will be similar to Haley’s. We’re very excited to switch schools, mainly because we will actually be able to walk to school on nice days. No more trekking across town. And I hate to say it but I’ve just about had it with Haley’s teacher and the therapy team that works with Haley at her current school so having a fresh start will be nice. Or it could get worse. We’ll have to see. As part of this transition process they have to do a lot of evaluations to see where Haley is at now. The last report Haley brought home from school said she is making purposeful movements to activate switch toys and able to vocalize pleasure and displeasure. Maybe Haley is a different child at school and will actually be reading and writing next year at kindergarten. I don’t know if they are trying to make themselves look good or what but we don’t see Haley doing all of the wonderful things she apparently does at school. I wish they would focus a little less on the switch toy and a little more on stretching and range of motion exercises that will keep Haley feeling good. I wrote a note to the teacher telling her this and she wrote one back to me thanking me for “being so thorough.” I’m sure she probably called me a name or 2 that day but I don’t care.

That’s about all there is to report for now. Haley continues to swim on Monday evenings. I definitely need to start bringing the camera with me to capture all of the smiles. There is a young girl that volunteers at the pool and she really seems to like hanging out with Haley. This girl picked up right away on the fact that Haley likes to bounce so once Haley completes her weekly workout in the pool with the teacher, Haley goes with the volunteer and all she does is jump up and down in the water with her. Haley thinks it is fabulous! Speaking of swimming, the annual CCHS Mallwalk is just around the corner. We plan to participate again this year and if anyone wants to join us you are more than welcome. February 10th- mark your calendar!

Friday, January 5, 2007 9:23 AM CST

Happy 2007!!

I know I really need to keep this updated more but it seems like every time I sit down to write an update, so much has happened that I don’t know where to start. So I put it off, more time passes and again I sit down to write an update and I feel like I need to write a novel. Bear with me- this could be a little long!

I suppose I will start with where I left off in my last update. We headed up to Haley’s doctor’s appointments at Gillette Children’s in MN the first week of December. We had 3 appointments in 3 days. The first was with the physical medicine and rehabilitation doctor, Dr. Ward. We talked quite a bit about the hip pain we think Haley has been experiencing. We knew from x-rays that both of Haley’s hips are completely dislocated and assumed this was the cause of Haley’s pain. Dr. Ward suggested that muscle spasticity could also be causing Haley’s discomfort and wanted to start her on an oral medication called Baclofen to help reduce this muscle spasticity. She also thinks Haley could benefit from injections (phenol block and Botox) that would also help reduce spasticity. These injections would last anywhere from 6 months to a year and would have to be performed under general anesthesia in an operating room. Dr. Ward was set to try and get Haley squeezed in while we were there to have this done but we decided to give the oral Baclofen a trial first and when we go back for follow up this summer, we may try the injections at that time. The next day we met with the orthopedic surgeon, Dr. Quanbeck. This was our first meeting with this doctor and I was a little nervous going into the appointment because I was still afraid that she would present surgery as our only option for getting Haley to feel good. I was very impressed with the fact that Dr. Quanbeck took the time to familiarize herself with Haley and her condition before our appointment. She actually called our neurologist and discussed Haley’s condition and prognosis before meeting with us. It was nice that she took the time to do that because she could have just come in and told us, “yes- Haley needs surgery to correct the hip dislocation.” We’d heard that before. Instead, we talked about what Haley can and cannot do, and that her life expectancy may not be long enough to warrant surgery. Kind of a grim reminder but really it was a very pleasant, matter of fact conversation and I was just relieved that we weren’t pressured into putting her through surgery. Sometimes I think the doctors tend to think we are bad parents because they give us an option to fix something, and we don’t always take that option because we don’t think their fix is always right for Haley. Dr. Quanbeck agreed with Dr. Ward’s plan to try Baclofen and the injections so we’re going to stick with that for now. The third day we saw Dr. Wical, Haley’s neurologist. Dr. Wical was so excited to see Haley! The Lamictal really seems to be helping. There are still many, many seizures, but overall Haley is a much happier girl since she’s started that drug. We’re going to keep increasing that medication and see what happens. Dr. Wical also has another drug in mind that she would like to try with Haley. It’s called clobazam and it currently is not available in the US but is used in many other countries with good results. We just might have to look into giving that one a try if we max out the Lamictal dose and the seizures still don’t decrease. We’ll head back up to Gillette again in June.

Haley was really, really good the entire trip. We had planned to do most of our Christmas shopping while we were there but as much as we tried, we just really couldn’t find anything to spend our money on! We also visited my sister while we were there and got to see where she’s living now. Oh- there was one story from our trip that I really wanted to share here. The first night at our hotel, we got into our room and put Haley on the bed so she could stretch out. She was in a really great mood and like any 5 year old she really likes to jump on the bed so Chris was bouncing her and she was loving it. I told Chris to stop bouncing her and give her a chance to tell him when she wanted him to start again. He’d bounce her, then stop and Haley would smile and then look around and make the tiniest little noise. He’s start bouncing her again and she thought that was even more fun. They did that for a while and Chris and I were just amazed at how happy this was making Haley. Then out of nowhere Haley laughed out loud! Chris and I didn’t know whether to laugh or cry so I think we did a little of both. It was just so unexpected and fun and I don’t think either of us will ever forget that moment.

The weekend after we returned from our trip Haley got to go to Disney on Ice. As I was getting her ready to go she was really in a bad mood. I thought our outing was going to be a disaster but once we got in the car, she started getting happy. We got to the Arena and saw all the people there and she was happier yet. Our seats were right up front and couldn’t have been more perfect for Haley. When the show started there was so much to see she kept moving her head all over the place and her mouth was wide open in amazement. I couldn’t get over how into the show she seemed to be. I didn’t see much of the show because I was busy watching her the whole time. The next time there is a show like that in town, we’ll definitely have to get Haley into see it.

Next thing we knew we were getting ready for the holidays. Haley had a holiday program at school. She was a star in the show- complete with a very glittery star to wear around her neck. There is still glitter in our car from that thing! Well someone told Haley she was a star and she must have thought they said she was THE star because she seemed to think she was the only kid up on that stage. She was such a little ham and so proud of herself. One of the classroom aides helped her play the jingle bells while the other kids sang and she was so excited. I can’t believe her sometimes- I think she gets that from her Dad!

The weekend before Christmas Chris and I were given an opportunity to see the Green Bay Packers play at Lambeau Field. It was a whirlwind trip to Green Bay and back (8 hours each way!) but I think Chris was happy to make the pilgrimage. We thought we had a lot of Packers apparel but we learned that if we ever go back to a game there we’re going to have to step it up. Everyone around us was decked out in green and gold from head to toe and all we had were Packers hats. It was a nice, spontaneous adventure.

We had a wonderful Christmas! Just like Thanksgiving we had everyone come to us rather than cart Haley & all of her stuff here, there and everywhere. We had so much food and I think Haley learned a new word- “presents!” Whenever someone would say that to her, her eyes would light up. When we were opening gifts with my family Haley even started making some sounds because she just seemed to be so darn happy. Haley definitely gave us the best gift of all!

I managed to come down with a cold the week after Christmas which I’m afraid I have now passed on to Haley. She was congested yesterday and woke up coughing and miserable this morning. Hopefully it won’t turn into anything major and she’ll bounce back in time to go back to school and swimming on Monday. The holidays were nice but I am looking forward to getting back into our normal routine.

I think that just about sums up our month of December. Hope you all had a nice holiday as well, and if you are still reading this, thank you! :)

Friday, December 1, 2006 10:57 AM CST

Hello everyone!

As you all know, Haley turned 5 on the 20th of November. We would like to thank everyone for birthday wishes left here and sent to our home. Being 5 seems to agree with Haley. For the most part she’s been happy and full of smiles.

I think she knows that her birthday also marks the kickoff to the holiday season. We had a very nice Thanksgiving. Haley had everyone over at her house this year and we had LOTS of good food. The weather was perfect for the time of year so we were able to spend a little time out on the back deck as well. It seems things went so well that we are going to do it again for Christmas! We don’t mind at all. It was really nice not having to transport Haley & all of her “stuff” here, there and everywhere. And we enjoyed being able to share “Haley’s Home” with everyone.

The weekend after Thanksgiving we did something we haven’t done in years- put up our own Christmas tree. It really looks nice and Haley sure likes to sit and look at the lights.

We’ve been to a couple of doctor appointments since my last update. Two weeks ago we saw the pulmonologist. He seems genuinely impressed with how well Haley is doing and how well the CPAP seems to have improved her quality of life (ours too!). In fact, he even mentioned that he would like to put Haley down as one of the patients to be interviewed for the Children’s Miracle Network telethon held every spring. I told him that Haley already has quite a fan base and they would be sure not to miss a television appearance. We’ll see what happens with that! We’re not going to make any changes but Haley will have to go in for another sleep study in April or May just to make sure that the CPAP settings are still where they need to be. As with everything else, she grows and things need adjustment from time to time.

We also saw the pediatrician this week for a 5 year well visit. I think this is the first time I’ve ever taken her to a well visit. Usually we go to the doctor so often that we don’t schedule those but we haven’t seen the pediatrician since Haley’s hospitalization in March. I wasn’t even sure if I needed to take her to the doctor when she turned 5 because I’m not always up on the “normal kid” stuff. Anyway, we visited with the pediatrician and turned out it was a good thing I took her in because it was time for more shots. Poor Haley got 3 shots that visit! She cried for about 30 seconds or so- just long enough to let them know she was unhappy. The strange thing is I am always kind of happy to hear her cry when she gets a shot because that is a normal reaction. Too many times I’ve taken her in and she wouldn’t even flinch when they would poke & prod her. That just isn’t right. It feels so good to be able to console her afterwards too. I don’t know if it’s because she’s not on as many drugs as she used to be on or what but it’s like we’re able to bond in a new way because Haley is more aware of what is going on around her.

Unfortunately Haley seems to be having more & more discomfort which we think is being caused by her hip dislocations. If she isn’t repositioned frequently she will let us know something is wrong and start to cry. Or, if she’s been in a position for a long time (like in her bed at night) and then we try to move her leg for a diaper change or something she will often start crying then too. I’m starting to wonder if she may need a different mattress or something to keep her more comfortable. This is on my list of questions for the doctors we’ll see at Gillette next week. I’m afraid that hip surgery is also going to be discussed at length.

We’ll update when we return from our appointments next week. Hopefully we’ll come back with a lot of information to share. Have a great week and keep checking in on us when you have time. We really appreciate it!

Monday, November 20, 2006 10:10 AM CST

Hello everyone!
I will start this by apologizing for not updating at all during the month of October. Moving kept us pretty busy for a few weeks! We still feel we’ve found the perfect house for us and most importantly, for Haley. Everything just fits so well- the ramps, the shower, the deck, the walking trails behind our house…it’s amazing! With the weather turning colder it didn’t take long for me to appreciate the attached garage. It sure makes getting Haley in and out of the car a lot easier when we are out of the wind and snow.

Haley has been doing GREAT! Just a minor cold when we were in the middle of moving but she got over it quickly and didn’t even need to go in and see the doctor for it. She is still having a good number of seizures every day (30 or 40?) but when she’s not seizing, she can be very, very happy. She’s smiling a lot more than she ever has before and that is a lot of fun for us. If Haley’s happy, everyone is happy. We’ve recently been to the feeding clinic and they felt that Haley was starting to put on weight a little too quickly again. We’re going to adjust her diet by switching to an adult formula that will allow her to have fewer calories per day but not fewer vitamins. We’ll check in with them again in January to see how that’s working. Haley also got her flu shot at that appointment and she did very well. No tears but the nurse got a dirty look. We have a lot of upcoming appointments. We’ll see the pulmonologist next week for a 6 month check in. The week after that we’ll go in for a “well child” visit with the pediatrician. It seems strange for me to take Haley to the doctor when nothing is wrong but since she’s turning five and will be heading to kindergarten next fall (can you believe it???) she needs to go in for a “normal” visit. The 5th-7th of December we’ll go to MN to check in with the neurologist, physiatrist and orthopedist at Gillette Children’s. I’ll definitely update after that visit because I have a feeling we’ll come back with a lot to report.

Haley continues to swim on Monday nights. We’re going a little later at night so she can swim with the big kids. They make a lot more noise and more waves and she seems a little more interested in her surroundings when she’s with them. She likes action! However, I’ve noticed that since we set our clocks back she’s been a little sleepier in the pool. Either her internal clock is going to have to adapt or we’re going to have to bump up her pool time.

School is going okay. I know we are bad parents because we’re very lenient when it comes to letting Haley stay home from school. Sometimes it’s just easier if Haley is having a bad morning. As my dad pointed out, Haley can sleep through school and they’ll still pass her to the next level. None of us kids could ever get away with that but she can. One day last week there was a little excitement at school when the police and the SWAT team showed up to arrest a suspected murderer in a house near her school. The school isn’t in the best neighborhood. They had the school on “lockdown” which meant they had to turn off the lights and lock the doors. Apparently Haley thought that was a good opportunity to catch a few zzz’s at school so she went to sleep. When Grandma & Grandpa came to pick her up from school the school administration told them they weren’t supposed to let anyone in or out but if they wanted to take Haley with them there was nothing they could do to stop them. My parents just loaded up Haley and took her home. Nothing’s going to stand between Haley and her grandparents- not even a SWAT team!

This is the time of year when we are often asked for gift ideas for Haley. What do you get the girl that has everything? The best gift you can give is to keep Haley close to your heart. Take some of her determination and strength and do a good deed for someone else. And for those of you who are a little more persistent, remember that donations to the Make-a-Wish organization (www.wishsd.org) are always a good idea.

Monday is the big day. Haley will be 5 years old!!! I know it is a true miracle that she is here with us to celebrate this milestone. We could not do this without the support of our family and friends and sometimes even strangers. Thank you to every one of you. I keep thinking about the tiny baby we brought home on Thanksgiving Day 2001. How did she ever turn into this beautiful, big girl right before our eyes?

We love you, Haley Q. Happy 5th Birthday!

Thursday, September 21, 2006 8:00 AM CDT

Hello Everyone!
Aunt Amy FINALLY pulled some photos together so hope you enjoy them.

Just when we thought we had settled into the idea of spending another winter at the apartment, the unexpected happened.

We found a house.

Not just any house- a completely “Haley friendly” house complete with wheelchair ramps and a roll in shower. How great is that?

We will be moving in the first week of October which isn’t that far away. A lot to do between now and then!

We’ve had visitors from Ohio this week. My aunt, my cousin and my cousin’s daughter arrived last Sunday and will leave tomorrow. It’s been a lot of fun having them here. We are not used to having a 1 ½ year old running so Maggie has been entertaining all of us. Usually the only child I spend any amount of time around is Haley so I forget what typical children do. Maggie amazes me with the words she knows and the things she can do. She is such a neat little kid (and cute too!) and it’s also fun to see my cousin, Dru, in the role of “mom.”

Someone else will be leaving us tomorrow as well. My sister (Haley’s Aunt Sarah) is moving to the Minneapolis area. I’m sure she is very excited to go but I hope she knows we are going to miss having her around. At least we will now have someone to visit when we go up there for Haley’s appointments. Best of luck with the new job, Sarah!

Today I met with Haley’s “team” at school for her annual IEP meeting. I made quite a few suggestions at this meeting and will be paying close attention to make sure the changes are being incorporated. One of the biggest changes is that Haley will be spending time in what they call a “blended” classroom. This means some of the children in the class have special needs and some do not. Because there are only 2 other students in Haley’s class, I wanted to be sure she was able to be around a group of children because I think she will really enjoy the noise and commotion. I was informed that in Jan/Feb we will have to start making decisions about her school placement for next year already. Because she will be 5 in November, she could start kindergarten next year or we have the choice to leave her in the early childhood program for one more year. I think I will go visit the kindergarten class a couple of times before we make any decisions. When she goes to kindergarten it will be the school right down the street from my mom and dad’s house which would be really convenient. That alone may have a huge impact on our decision.

The past couple of days Haley seems like she has not been feeling very well. We didn’t even go to the pool this week. Hopefully we’ll make up for it next week. She seems to be a little feverish off and on, lots of seizures and diarrhea. Definitely didn’t want to risk putting her in the pool with all of that going on! I don’t think we overdid the laxative this time either- in fact, I’ve held off on it this week and she is still having very messy and stinky diapers. I hope she’s able to get over this quickly.

I guess that’s all to report for now. We may be in the new house by the time I get around to updating this again!

Until next time...

Wednesday, August 30, 2006 4:07 PM CDT

Hello Everyone!
I know it’s been too long since I last updated. I have some catching up to do!

First of all, Haley has had a great summer! She attended summer school in May-July and then had most of the month of August off to relax. Before we knew it, August 28th was here and it was time for school to start again! She didn’t get much of a break but I think she enjoyed getting back into that routine. She’s still on a break from swimming at the moment but that will resume again after Labor Day. I know she has probably been missing her pool time.

Knock on wood- it’s also been a healthy summer for Haley. We haven’t even seen the pediatrician since our last hospital visit back in March. We did check in with the feeding clinic team a couple of weeks ago and made some adjustments to Haley’s diet. Her weight is fine but Haley keeps having constipation issues. We’d been using a laxative but then by the time we’d give her enough to make her “go”, then she can’t stop and we have a big mess…not to mention an uncomfortable, stinky kid! So we’re going to use just a little bit of the laxative and add a whole bunch of water to her regular diet. We’ll see what happens. In the meantime I just hope her diapers can handle the extra fluid!

Haley still has bouts of crying now and then which I think may be related to her hip dislocations. If she starts crying and we reposition her, she will usually start crying really hard (a “big girl” boo-hoo cry) for a moment and then she seems to calm down and relax once she gets used to the new position. I still HATE the thought of surgery but seeing our little girl in pain is heartbreaking.

I have almost been dreading this update because I don’t want to jinx anything but I do want to share some exciting news. We are finally seeing a little bit of seizure control with this new drug (Lamictal). I kept thinking that we are wasting our time with this medicine just as we have with the others we’ve tried in the past. But then I started to notice Haley’s seizures seemed fewer and a little less frequent. The nurses would mention to me that they weren’t seeing seizures during their time with Haley. One Saturday I spent the entire day with her and did not see any seizures until about 10pm that night. Of course then she had to make up for lost time and had a bunch of really hard seizures but I was still amazed. We have seen her go from having hundreds of seizures a day down to maybe 15-20 now and most importantly she is usually awake, alert and even SMILING during the day now too. What a change from where we were 2 years ago—even one year ago for that matter. Keep in mind the neurologists have always told us that Haley’s EEGs show that she has way more seizures than we see. We were told at one time that for every one we see, she is having 10 that we don’t see. So, maybe there is more going on in that little head of hers than we know. I should also mention that EVERYDAY is not a great day for her- she still has some tough days but instead of everyday being rough we are now down to a few times a week. Not bad! I’ve reported all of this to Haley’s neurologist who is of course as thrilled as we are. Since we’ve been slowly increasing the Lamictal over the course of the last 2 months and Haley showed no signs of an allergic reaction, the doctor now feels it is safe to really jump up the dose. So in the next 9 weeks we will go from 50 mgs of Lamictal a day to 150 mgs a day. I am really anxious to see what this does for her but also trying not to get my hopes up too much. If there is one thing I’ve learned about seizures in the past 4 ½ years, it’s that they do whatever they want, when they want. Sometimes increasing a seizure med can actually make things worse. Sometimes the seizures will just all of the sudden breakthrough and the medications that were stopping them simply don’t anymore. There is no way of predicting these things so it’s just trial and error and we will be thankful for as many happy, seizure-free days (maybe I should say minutes- days is sometimes a stretch!) we can get!

Hope everyone has a great Labor Day weekend. Thanks for checking in on us!

Friday, July 21, 2006 10:32 AM CDT

Hello everyone!
Not a lot of new stuff to report this time. Haley is doing pretty well these days. We’ve taken her off of one seizure drug (Lyrica) and started on another (Lamictal). At first I thought the Lamictal was making Haley a little more irritable because she was crying more than we’re used to. Now I think maybe the Lamictal is just allowing Haley to express herself a little more than the other drugs did. I mean, if I were having the number of seizures that this child has every day, I think I would be entitled to a few meltdowns now and then! We’re also noticing Haley is smiling more and has just a few different facial expressions now. Seizures are still about the same unfortunately. We’re still working up to a full dose of Lamictal. You have to start so slowly to avoid an allergic reaction so it will still be about 6 weeks before she’s on her maximum dose. Maybe we’ll see a change when we get there.

Haley is still going to summer school but only has about a week left. I’m really glad because the school has been a point of frustration for us all summer long and I know the next school year is not too far down the road. We’re going to have to have a serious sit down meeting with everyone and discuss a few issues. I’m not looking forward to that at all.

I did get to go to the zoo with Haley’s class a couple of weeks ago. I think the heat got to Haley a little bit (me too) and the problem with going to the zoo is that usually the animals are so far away that I don’t think Haley can see them anyway. Even when the animals are closer (like in the children’s petting zoo area) the fences are right at Haley’s eye level so I don’t know how much she gets to see then either. I KNOW she got an up close view of one of the Clydesdale horses though. We walked up to the fence and the horse leaned over to Haley and was sniffing her belly. The horse’s head was the same size as Haley’s entire body and I wondered if it scared her a little bit because her eyes were just about as big around as they can get! I kicked myself for not having the camera with me at that moment. It would have been a cute shot.

We’re still going to the pool at CCHS twice a week (Mon and Tues evenings if anyone wants to come and watch!). I’m noticing that Haley is a bit sleepier in the pool on the really hot days. To see if they could cool it down for her a cold water hose was put into the water last week. Haley did not care for that at all. She would pull away from the cold water and then she closed her eyes and wouldn’t open them for anything. As soon as we got into the changing room to get the bathing suit off she opened her eyes and was happy. I knew she was playing possum with them! Little turkey!

I guess that’s all for now. We may try to get out to the air show this weekend if it isn’t too hot. I think Haley would like that. We took her down to Hot Harley Nights a few weeks ago and she really noticed the sounds of the motorcycles. We’ll see!

Until next time...

Wednesday, July 12, 2006 8:48 AM CDT

Hello everyone!

We had another successful trip to the Cities a few weeks ago to take Haley to see the neurologist at Gillette Children’s. Originally our plan was to try and also see an orthopedist while we were there but none of the doctors could squeeze us into their schedules so that will have to wait until our next trip. Our visit with the neurologist went well. I think the doctor is always impressed with how well Haley is doing overall in spite of how many seizures she continues to have on a daily basis. We are going to start a drug change that will get Haley off of Lyrica and start Lamictal. Lamictal has to be introduced very, very slowly into the system because it can possibly cause an allergic reaction. So far everything is going just fine with the switch although we have not yet noticed any changes as far as the seizures go. If this new drug doesn’t help with seizure control I think Dr. Wical is really going to lean even more towards the VNS implant. She told us that at this point is probably nothing that will ever give Haley 100% seizure control but if the VNS took care of even just 25% of the seizures, that would be a huge reduction for someone like Haley. That gives us something to think about. While we were at Gillette they did take new x-rays of Haley’s hips and spine which will be compared to the ones we had done here in Sioux Falls last February. The orthopedic doctor at Gillette will review them and we’ll see her when we go back to see everyone else (neurologist & physiatrist) in December. We are planning on spending 3 days up there next time which seems like a long time to be away from home but will be a nice opportunity for us to get in some Christmas shopping.

Haley was once again just the best little traveler on our trip! I have to say Chris and I have pretty much have traveling with her down to a science. We know what we need to take, which bags work best for packing and how to pack up the car so that everything is organized and within arms reach should we need it while on the road. I’ve learned I can do morning meds, start up a feeding and a diaper change at a roadside rest stop in as little as five minutes. The Honda Element works out great for diaper changes- in fact I would rather change her diaper there than in a restroom because I know it’s cleaner and public restrooms usually aren’t equipped to accommodate Haley. I am afraid she is too big for those little baby changing tables you see in most bathrooms. I’m think if I put her on it she would end up on the floor!

On June 24th we had Haley in the car yet again to attend the wedding and reception of Chris’ cousin, Sion & his new wife Colleen. It was a beautiful day (despite a quick rain shower) and no one loves a party more than Haley! She had an absolute blast at the reception- even had a dance with the groom. Just like the other kids at the reception, Haley soon had a “Kool-Aid smile” because once I gave her a taste of my punch she wanted more!

Haley got to go to a birthday party at Chuck E Cheese. My coworker’s son turned 3 and they invited Haley to come help celebrate. This was our first time at Chuck E Cheese and there was plenty of action so that was right up her alley too. Haley ate an entire serving of strawberry ice cream all by herself! I could not believe how well she did with that.

Hope everyone had nice, safe and relaxing 4th of July holiday. I will update again soon.

Monday, June 19, 2006 1:25 PM CDT

Hello Everyone:
We hope everyone enjoyed Father's Day yesterday. Haley had to show off her new chair so take a look at some updated photos.

We had a good trip to Minnesota last week. We left Sioux Falls Wednesday afternoon and Haley was very good the entire ride up there (and back!). We checked into our hotel, walked over to the restaurant to get something to eat and then planned on going swimming after that. Haley couldn’t keep her eyes open while we ate so we decided to skip the swimming and just put her to bed a little early. The next morning we headed over to the clinic where Haley had an appointment with a physical medicine and rehabilitation physician. The doctor asked us a lot of questions about Haley’s condition and development. She also asked us about therapies and what types of things Haley enjoys doing. We were also able to get Haley’s wheelchair “tuned up” a little more and she sits in it better than ever now! This doctor told us the most important thing is making sure Haley is happy and comfortable. If we feel the school is putting too much of an emphasis in learning how to use a switch and not spending enough time stretching Haley out and maintaining good range of motion of all her joints, we need to voice our concerns. I know for a fact we are already the family Haley’s school hates to deal with but I guess they haven’t seen anything yet!

Speaking of school, Haley went back to school last week but she is NOT riding the bus. No one from the school ever called- we just decided that Grandma Eden would transport Haley back and forth this summer just as she did during the regular school year. I know Haley is getting something out of going to school because as soon as she gets there her little face lights up. She really seems to enjoy her time with the kids and Aunt Stacie’s good friend, Michelle, is an aide in the classroom so I think she gets a little more specialized attention which she also enjoys, of course.

This week will be another busy one for us. Haley resumes swimming this week. She’ll go twice a week during the summer session and her swim nights are now Monday and Tuesday. We have more appointments in Minnesota on Thursday. This time we will see our neurologist and we are also going to see an orthopedist. The appointment with the orthopedist is at the request of the physical med doctor we saw last week. I get the feeling she thinks it is a good idea to go ahead with the surgery to repair Haley’s dislocated hips and she wanted us to get a second opinion but said the choice is still completely ours to make. We’ll see what they say and go from there.

Have a great week and I’ll try to update again when we return from our next round of appointments!

Thursday, June 8, 2006 4:23 PM CDT

Hello All:
I know, I know- this update is long overdue! I guess this can start with a quick summary of our month of May. May 1st we picked up Haley’s new set of wheels. She is now in a “big girl” wheelchair and seems to be comfortable in the chair for the most part. Some days Haley sits better in it than others but I think that is because her muscle tone can vary greatly from day to day. The frame of her new chair is the exact same color blue as our Element. Pretty cool! The first day Haley took her new chair to school the therapists decided to make some adjustments to it (the 3 hours we spent with the therapists the day we picked it up must not have been enough for them, huh?) and her headrest was never quite right after that. We ended up going back for another hour of adjustments to fix what the school did. Chris put a call in to the school and told them that they are not to make any adjustments to the chair at all. I can’t believe we even had to tell them that. The one time I asked the physical therapist if she thought Haley’s AFOs (leg braces) needed an adjustment she told me she never looks at those because it’s not her equipment. Adjusting the chair must be within her realm of expertise.

The first week of May my parents went out to Maryland for a little mini-vacation so Haley got to have Grandma L come and stay with her for a couple of days. She even took Grandma to school with her one day. That is a story in itself that I will leave for Grandma to tell! We’ll just thank her again for coming down and hanging out with Haley those couple of days.

May 12th we had a doctor’s appointment with the pulmonologist to discuss the results of Haley’s last sleep study. Basically he told us that he turned the CPAP setting up a little because that is where Haley appeared to be the most comfortable. He also wanted us to go see an ear, nose and throat specialist because he thought Haley’s tonsils looked a little big. We actually saw the ENT yesterday afternoon and he agreed that Haley’s tonsils are enlarged but removing them probably wouldn’t change the fact that she will require CPAP at night. We’re going to leave the tonsils and adenoids alone for now.

May 14th was Mother’s Day and I have to say I got a little spoiled. Most of the family was able to get together for brunch at Carnaval Brazilian Restaurant (mmmm- it was so good!) and I got 2 very pretty necklaces, a gift certificate for a manicure and pedicure, a plant and lots of nice cards. Haley was sleepy during brunch but afterwards we took her outside and she woke up a little and even got a little smiley. Of course those smiles were the best gift of all!

May 19th Chris and I celebrated our 6th wedding anniversary! I don’t think either one of us could believe it’s been 6 years already. Chris sent flowers and a GIGANTIC singing balloon to me at work. Who would have guessed 6 years ago that our lives would have turned out this way? Definitely not what we had in mind but we are certainly grateful that Haley was brought into our lives.

Haley finished up school on May 23rd. She had a couple weeks to relax before summer school started this week. The bus is supposed to pick Haley up at 7:34am at home, school is from 8:30am-11:30am and then she is supposed to get on the bus and get dropped off at 12:34pm. Tuesday was the first day and everything seemed OK when they came to pick her up. They loaded her on the bus and she was on her way. I came home for lunch at about 12:15pm that afternoon to be there when she got dropped off. 12:34 came and went. At 1pm I called the school to make sure she had gotten on the bus and they told me not to worry that things were running about 20 minutes behind that first day and that were sure she would be there any minute. Finally at 1:18pm the bus pulls up and right away I can see Haley through the bus window and I can tell something isn’t right about the way she’s sitting. The bus driver and aid get her unloaded and I see that Haley is crying- not seizure crying, just crying- and her head is completely off of the headrest. In fact, her neck looked like it was wedged into the space between the back of the chair and the headrest. I didn’t say anything- just fixed her and tried to get her inside to calm her down before she started having a whole bunch of seizures. Oh- and we had a brand new nurse that day witnessing this whole ordeal- she’d been standing outside waiting for Haley too. We got inside and I cranked up the air conditioning because Haley was hot and I just held her for a while and she settled down a little bit. I tried to tell myself that her head wasn’t like that the entire bus ride- maybe just the last 10 minutes or so instead of the almost 2 hours she was on the bus but even that didn’t make me feel better. All night I just had to ask how they could not notice that something was wrong? I just about made myself sick worrying about it and the next morning we decided no more bus rides for Haley. In fact, she didn’t even go to school at all yesterday or again today. The school called me yesterday to see where Haley was and I told the office clerk the whole story. She told me that she would have the principal call me (still waiting for that phone call) because they “would really like to work this out before withdrawing Haley from summer school.” I guess my only demand is that they have someone on the bus that is actually going to watch Haley. If that person had any knowledge of Haley’s medical condition that would be a plus too. I don’t think they deserve a 2nd chance when it comes to Haley’s safety. If we have to go back to transporting her to school ourselves I guess we will do that but to be honest the minimal amount of therapy she is getting at school is hardly worth the drive across town. That is such a shame.

Haley continues to swim at CCHS although they are on a break at the moment. She will start the summer session next week and we’ll go 2 nights a week in the summer. Thank goodness for that!

This month will be a busy one for us. We will see 2 doctors at the clinic we go to in Minnesota. One is a physical medicine and rehab specialist whom we have not seen before. I’m really looking forward to hearing what she will have to say about Haley’s therapy and whether or not she thinks she is getting appropriate services. I also want to know what alternatives to surgery she may offer to address Haley’s dislocated hips. I think the hips are starting to give her some pain or discomfort but I still want to avoid surgery at all costs. We will also have a follow up visit with our neurologist. Haley’s seizures are back on the rise so I am sure there will be medication adjustments if nothing else.

The longer I go without updating, the more difficult they are to write. This has turned into a novel- sorry about that. I PROMISE to update again before July.

Until next time...

Tuesday, May 2, 2006 7:20 AM CDT

I have time for a quick update. Haley has had a fairly uneventful week. We made our usual trips to the pharmacy and the home medical store but I don’t think we had any doctor’s appointments- amazing! We did have a home visit from Haley’s teacher last Friday. Her teacher brought along a head switch that they have been trying to teach Haley to use. I’m not quite so sure Haley ‘gets it’ but the teacher and therapists sure get excited whenever Haley happens to hit the switch at the right time. We discussed summer school and probably our biggest news of the week is that Haley is not only going to go to summer school but we are also going to try letting her ride the bus to and from school. We’ll see how it goes. I’m a little nervous about having her ride across town without us but I have a feeling Haley may be like any other 4 year old and think riding the bus is pretty cool. If it doesn’t work out we’ll just go back to transporting her ourselves. I just thought that since the school she is going to be attending is waaaaay on the other side of town it might make things a little easier. By the time we got her dropped off, turned around and came back home we’d almost have to turn right back around and head over there to pick her up. We’ll see how it goes!

Last Saturday the weather was absolutely perfect. Haley and I had quite a few errands to run but that was okay because it was a beautiful day to have Haley outside. I took her in to get her hair trimmed for summer and Haley decided she would prefer to sleep through her haircut. As soon as we got back outside Haley opened her eyes and just started grinning from ear to ear. That little turkey- she was showing off her new haircut. We met my sister after that and did a little shopping and Haley stayed in good spirits all day long. We stopped and got strawberry-banana smoothies and I ended up sharing way more of that than I thought I would with little Miss Haley. She loved it! The place we got the smoothies is right next to where we will go get Haley’s new chair on Monday afternoon. I think I know where our first stop will be! We are really looking forward to the new chair. I can’t wait to see her sitting comfortably again!

Until next time...

Tuesday, April 18, 2006 4:07 PM CDT

Hello Everyone!!

Let’s see…my last update was March 31st. What have we done since then? On April 7th Haley had a visit with the dentist. We ran into one of my old friends from college there. I hadn’t seen her in about 3 years so it was a nice coincidence that our girls had appointments at the dentist on the same day. They don’t even live in the same town as we do so I thought that was pretty neat. The dentist visit was good- no cavities. We’ll go back in 6 months and at that time we might have to start discussions about what to do when the baby teeth start coming out. She’s a little young for that to start now but it will be here before we know it.

On April 8th Haley and I participated in the MS Walk with a few people that I work with. We had the choice of walking 3, 6 or 9 miles. I was going to go for the full 9 miles but around mile #5 Haley had enough sitting and was ready to call it quits. It turned out to be a beautiful day for a walk even though it started out a little cloudy and chilly. I bundled Haley up and as we walked I was able to remove layers of clothing the warmer it got. Unfortunately I didn’t even think about applying sunscreen and I should know better! Haley ended up with red cheeks which by the next day looked awfully swollen. I ended up taking her to the doctor because I thought maybe it wasn’t sunburn at all but they seem to think that’s what it was. I thought it might have something to do with her CPAP mask or maybe an allergy or bug bite. Poor Haley! Mom promises to be more prepared next time!

The week after the MS Walk Haley was on spring break from school so she got to hang out and relax. On that Thursday night we got to spend another night over at the sleep clinic. They wanted to fine tune the CPAP settings. Haley had a lot of seizures while the technician was getting her all hooked up for the night. When they were ready to run the test I turned out all the lights and we both tried to get as much sleep as we could. We checked out of there at 7am the next morning and headed over to Sioux Valley so they could do a chest x-ray. After that I dropped Haley off at my parent’s house, went home to change and then off to work. We will meet with the doctor to discuss the sleep study on May 12th. For now they’ve decided to change her CPAP settings from a 6 to a 7. Not sure what that means except tests must have indicated that she did a little better at night with a little more air pressure.

Easter was nice and quiet for us. We spent a lot of time with family and Haley got quite a few nice gifts. Today was her first day back at school since the break and I think Haley was ready to go. She woke up happy and alert this morning so I think she knew where she was going. School today, off again tomorrow for a teacher in-service day and then back at it again Thursday. She doesn’t have school on Fridays but this Friday her teacher will come to us for a home visit/conference. They have to visit us at home a few times a year- I guess to make sure Haley has a good home environment. I know we are going to talk about summer school at this conference. This year Haley was approved to attend school year round, and I think we should probably send her because she definitely needs to have therapy all year round. I just don’t like the fact that the school that is having the summer school program is clear on the other side of town. Why is it they never choose the school that is close to us for these kinds of things???

I got some really good news to report today. Haley will get her new chair on May 1st! I cannot wait!!! Poor kid is literally falling out of the old KidKart because she has outgrown it. If you’ve seen her lately, you know what I mean. I should dig up the photos of her in the chair when we first got it and take one of her in it now. I cannot believe how much that child has grown in 3 years! We’ve put a lot of miles on that chair in that time too. We were just thinking about where we were this time last year. Lounging around the cruise ship, swimming in the Caribbean or strolling through Key West probably! We had such a fantastic cruise and will be forever grateful to Make a Wish for giving us that wonderful opportunity to spend a carefree week together as a family.

I think that is all for this update. Have a great week and I’ll update again soon.

Friday, March 31, 2006 3:08 PM CST

Another week has passed and I thought I should send out another update to let you know what Haley has been up to this week. We had a relatively quiet week and that is a good thing. We’re just trying to get back into our routine. Haley went back to school and swimming this week and I made it to work every day so that is progress! Actually Haley did miss school on Thursday but it wasn’t because she was sick. For some reason I forgot all about Haley’s chair yesterday morning when I dropped her off. My mom called me at work to ask me why I didn’t drop the chair off in their garage like I do every morning and I could not believe Haley’s chair was still in the back of our car. Oops! Actually I think I know what happened. Haley woke up yesterday in the best mood I’ve seen her in for quite some time. She was smiling at everything! I was so caught up in that I think that is what made me forget about the chair. See- she knows exactly what she’s doing. She conned me!!!

We’re getting a little more used to hooking her up to CPAP at night. I still am not 100% happy with the mask she has to wear but I guess we are getting used to it. I think it is helping Haley get better rest at night. She doesn’t seem to have to work so hard at breathing and maybe that is helping to reduce some of the seizures. Or maybe the mask is muffling the sound of her cries when she does seize at night. It’s so hard to tell with her what, if anything, reduces her seizures. We’ve been gradually introducing the new seizure drug- Lyrica. Again, it’s difficult to tell if that’s reducing any of Haley’s seizures. We’ll keep going for a while and then see what the neurologist wants to do next.

We’ve had a rainy week but that means spring is here and hopefully we won’t see any more snow until next winter. We were able to downgrade Haley’s winter coat and instead she’s been wearing a new poncho that MawMaw made for her. It’s nice- especially since we can just throw it on over her head and not have to worry about trying to get her arms in the sleeves. Saves us a lot of time and oh-so fashionable too!

Have a great week and thanks for checking in on us!

Friday, March 24, 2006 4:38 PM CST

Haley was discharged from the hospital yesterday. Thank you all for your support this week!

I’m not sure where to begin this update. When I took Haley into her appointment with the pulmonologist Tuesday morning I certainly did not expect to spend the next 3 days in the PICU but that is where we ended up. It turns out Haley’s noisy breathing isn’t congestion. That is why the antibiotics weren’t clearing things up. In fact, her chest x-ray was clear. The doctor thinks this is a progression of Haley’s condition and could be a sign that her upper respiratory system in weakening. It makes sense- she is getting to be such a big girl but you need to be strong to support your body the more you grow and that just isn’t happening with Haley. We were given 2 treatment options. The first option is to insert a tracheostomy. This is something Chris and I have discussed very early on and we have decided that we would much rather focus on Haley’s quality of life rather than quantity. Besides, a tracheostomy would be the end of her swimming days and that is something we are not going to take away from her. This lead to a discussion on “do not resuscitate” orders, etc and we took this hospitalization as a wake up call to make sure that all of the legal paperwork is in order so that our wishes are carried out when the time comes. It’s so much easier to make these types of decisions now and we only hope it will make things easier when we are in our most difficult days. The other treatment option is something called CPAP. Haley will have to wear a mask whenever she is sleeping. Air is blown into her nose and mouth at a constant pressure to keep her airway open and make it easier for her to breathe. We tried CPAP in the hospital and she did seem to sleep better and her oxygen levels stayed where they should be. However, when we tried it at home last night I didn’t think it went too well. The mask wouldn’t stay on the way it should and to be honest I couldn’t even tell if she was breathing at all when she had it on. I don’t like it!!! We’re supposed to go back to the sleep clinic for a night in a couple of weeks to fine tune the CPAP settings. Maybe they’ll have some ideas.

So there’s the latest. As much as we hate to be in the hospital we were treated very well by the staff- they even remembered us from our last visit and that was almost 2 years ago when Haley had her feeding tube placed. It makes everything a little more bearable. And I think Haley likes the attention she gets at the hospital. We think she gets the same amount of attention at home but she tends to like to show off in front of people we don’t see everyday. We had some great visitors- some we knew before we checked in and some not. I think Haley worked her charm on some new friends we met while we were up there. All she has to do is bat her eyelashes and they’re hooked! She knows what she’s doing!

Thanks again to all- we could not do this without you!!!

Wednesday, March 22, 2006 12:51 AM CST

OK so by now most of you have heard that Haley was admitted to the hospital after our appointment with the pulmonologist. Right now they just wanted to keep a close eye on her breathing and try a couple of options that might make her more comfortable. I am almost positive we will be out tomorrow.

Thanks for checking in. I just ran home for a shower and change of clothes and will be heading right back up there in a little bit. Haley is enjoying all of the attention and showing off for the nurses. I think most of them are probably trying to figure out what she's doing in the PICU. She certainly doesn't look like a kid that needs to be there but I guess it's the best place for her so the doctor can monitor her.

Monday, March 20, 2006 7:40 AM CST

Thought I’d better do another update…turns out there are a few more people reading this thing than I realized. Thanks for signing the guestbook and letting us know that Haley’s “fan club” is still checking in for an update every now and then.

Haley’s had kind of a rough week. She just hasn’t been able to shake the bug she caught when she first came down with pneumonia. I think she’s been sick for 5 weeks now and it’s making us all miserable. We just want our happy little girl back! We went to the pediatrician this week and they did lab work and a chest x-ray. Those tests were normal but the doctor gave us some antibiotics anyway because obviously the over the counter stuff I’ve been giving her since she finished the last round of antibiotics isn’t cutting it. Usually I see somewhat of an improvement even after a few days on the antibiotics but I haven’t seen that this time. Thank goodness we see the pulmonologist on Tuesday. Maybe he’ll be able to figure out what is going on.

Haley didn’t make it to school at all this week and didn’t go swimming either so not a lot to report. Her seizures are definitely still on the up. We’re gradually adding the new drug called Lyrica. I haven’t seen a big change since we started it but it’s hard to tell if Haley is having more seizures just because she hasn’t been feeling well or if the medication is causing a change in her seizures.

I think we’re just going to have a nice, quiet weekend at home. Hopefully Haley will get her rest and feel better very soon. We’ve been so lucky that she’s been so healthy up until this point but at the same time the likelihood is that she could go downhill very quickly is never far from our minds. Just like she does with everything else I have a feeling Haley will get better in her own time- she sets the schedule and we cannot rush her.

Happy St. Patrick’s Day! Haley is part Irish you know and this is a big day for the McGourty clan. This morning I told her we’d call her Haley Quinn O’Lingbeck just for today and she just gave me a funny look. I should probably dye the Pediasure green or something but, well…yuck! Maybe we’ll stick with Key Lime yogurt instead. That sounds much better!

Have a great weekend and I will try to update again next Tuesday. I might have more to report after we visit with the pulmonologist.

May your day be filled with blessings
Like the sun that lights the sky,
And may you always have the courage
To spread your wings and fly!

Thursday, March 9, 2006 7:59 AM CST

Wow…I can’t believe it’s been about a month since the last time I’ve updated this. So much has happened in a month that I don’t even know where to begin.

On Valentine’s Day Haley had an appointment with an orthopedist to evaluate her hips and spine. They took a lot of x-rays and it turns out that both of Haley’s hips are dislocated and the only way to correct this is with surgery. At this point the doctor doesn’t think Haley’s hips are causing her any pain but as she grows this could change. He said now is the best time to do the surgery because of where she is at developmentally in her growth. He described the procedure to me and it doesn’t sound fun at all. About 6-8 hours of surgery during which she would most likely require a blood transfusion, followed by 8-12 weeks of recovery in a cast that would make life very difficult for all of us but especially Haley. I just can’t see putting her through that right now and if we ever decide to do the surgery it would have to be during the cold, winter months. We just have too many places to go and things to see during the nice weather months and don’t want to waste any of our time in a hospital. On top of all that the doctor also said Haley has scoliosis that will probably require surgery at some point in her life as well. Poor kiddo just can’t get a break sometimes. Anyway, I thanked the doctor for his time and told him we’d call when and if we decided to go ahead with any of those treatment options. We may get a 2nd opinion but for now we’re not worrying about it too much.

On February 20th Chris and I went to Las Vegas with his parents and sister for the week. Haley saw us off at the airport and I have to say I haven’t seen her as happy as she was that day in quite a while. I think she must have thought she was going on another cruise or something since that’s what happened the last time she was at the airport. I hope she wasn’t too disappointed when we left without her. I have a feeling she was showered with plenty of attention that week from Grandma and Grandpa and she probably didn’t miss us too much. We had a great time in Vegas and while Chris and I didn’t win big, Haley sure hit the jackpot with gifts we brought back for her. I think she has a complete new spring wardrobe.

Last week Haley got to pick out her new set of wheels. No more KidKart- she will be cruising in a sporty new big kid wheelchair sometime in the next 2-3 months. That isn’t soon enough for me. She just is not sitting up very nicely in the KidKart anymore and when she has a seizure she practically throws herself out of her chair. Speaking of seizures, they seem to be on the rise again. I can’t figure out if it’s because she still isn’t feeling well or if it has something to do with her medication change. Ever since she had pneumonia a few weeks ago she still doesn’t seem like she’s fully recovered. Her breathing still sounds yucky and she only breathes through her mouth. For seizure meds, we did go ahead and increase her Keppra and weaned her completely off the Felbatol. I checked in with the neurologist yesterday and we are going to start her latest seizure medication, Lyrica, today and see how that goes. I am really hoping for a miracle with this one and my definition of miracle has changed from “no seizures” to “okay, how about just half the seizures she normally has in a day?” We’ll see what happens!

I’ll stop there for now. Time to go home and see what our girl has been up to today. I will update again soon!

Friday, February 10, 2006 4:13 PM CST

Hello!

Just a quick update to let everyone know that Haley hasn’t been feeling her best this week, but we think we are now on the road to recovery. FINALLY! It’s been a long week!

Last Friday night I sensed she was coming down with something. Her seizures were AWFUL and it wasn’t long before she was running a temperature. By Saturday her fever was so high I ended up scooping her up and immediately taking her into the acute care clinic. We’ve been back to the clinic 2 more times this week for lab work and chest x-rays and the consensus now is that she has pneumonia. Not what we were hoping for but at least when you have pneumonia they will give you antibiotics and I think that’s what will finally get rid of this bug once and for all! Haley also has had yucky, gunky eyes all week that haven’t cleared up even after a week on eye drops. If that doesn’t go away over the weekend, guess where we’ll be going on Monday...back to the clinic!

The week before all of this illness started Haley was having one of her best weeks ever. We started her on the Provigil (the stay awake medicine) and I’ve never seen her more happy and alert. Now we haven’t been giving her the Provigil since she hasn’t been feeling well. We didn’t want to give her a drug to keep her awake because why make her stay awake if she’s only going to feel miserable? If she’s feeling better next week we’ll start it up again and see what she does.

We have a parent teacher conference with Haley’s new teacher Monday evening and an appointment with an orthopedic specialist on Tuesday. Hopefully Haley will be back to school and swimming and the rest of her normal routine by then.

Happy Valentine’s Day to everyone and thanks for checking in!

Friday, January 27, 2006 3:31 PM CST

Greetings Everyone...

We’ve just returned from another visit with the neurologist up at Gillette Children’s in Minnesota. This time Haley had a 2 hour video EEG on Wednesday afternoon at the main clinic in St Paul and we saw Dr. Wical at the Burnsville office Thursday morning. The EEG technicians were very nice and asked good questions about Haley’s medical history as they were gluing the leads onto her head. When they started to run the test one of them said, “Good thing you told us what to expect otherwise we’d be calling the doctor.” The next morning at our appointment Dr. Wical let us know the results of the EEG and basically it remains unchanged (burst-suppression with moderate hypsarrhythmia) which is good and bad news. Good news because nothing has changed and we can keep continuing down the same treatment path as before. Bad news because it’s really a horrible EEG pattern to have and any improvement would have been a welcome miracle. Chris asked Dr. Wical how many seizures the EEG recorded during that 2 hour period and she told us they didn’t count them because there are so many. So when we say Haley is having hundreds of seizures a day- we literally mean hundreds and that estimate could possibly be on the low side some days. So what are we going to do about it? Well, Dr. Wical wants to play with the medications that Haley is currently on a little more before we start something new. Right now we’re going to start increasing the Keppra and weaning the Felbatol and see what happens. This is going to take about 6 weeks. At the same time we are going to introduce a new drug called Provigil. This drug is not an anti-seizure drug but instead a drug that is supposed to help keep Haley awake during the daytime. Its most often used to treat narcolepsy. We’re going to give it a 2 week trial and if it works we’ll stick with it and if not we will just discontinue that one. Unfortunately, Haley’s EEG and sleep study have made it clear that if we are going to get her sleep cycles in control we are going to have to use drugs to do it. We’ll see what happens! If after the 6 week Keppra increase and Felbatol wean Haley still has seizures (which we expect she will), there is a brand new drug on the market called Lyrica and that is what we will try next. I’m very anxious to see what this drug could do so it’s going to be a long 6 weeks for me. We will return to see Dr. Wical in June and at that time if the current plan isn’t bringing Haley more seizure control we will discuss our last 2 options. One is a drug called Lamictal which has been around a while. Only problem with that drug is it will take months to build up in Haley’s system because one of the side effects is an allergic reaction that causes a nasty rash. You have to go very slowly when introducing Lamictal to the body. If Haley got the rash we’d have to stop giving her the drug immediately otherwise there could be more serious (fatal) side effects. The other option is the VNS (vagal nerve stimulator). We’ve been doing quite a bit of research on that- specifically looking for statistics on how effective the VNS is with kids like Haley. Haley’s form of epilepsy is so rare and so severe that there is not a lot of research that relates to her condition. Drug companies gear their treatments toward the larger, more common patient populations (that’s how they can make more money) and unfortunately this leaves patients like Haley in the dark sometimes. We had thrown around the idea of putting Haley on the ketogenic diet to see if that would do anything for her seizures but Dr. Wical isn’t comfortable with the idea. The ketogenic diet would require us to alter Haley’s diet in a way that would be way too risky for a child with an underlying mitochondrial condition.

That’s our plan of attack for now. Haley will see an orthopedic specialist in Sioux Falls in February and in March we are going to have a seating evaluation in Marshall, MN. Gillette has a mobile outreach clinic that goes there every month. I am curious to see how Gillette seating evaluations differ from the ones we’ve had at CCHS and we just want to see if they offer a few more options. Definitely time to get the ball rolling on a new chair for our ever growing girl. 38 ¼ pounds and 39 inches- which is 3 ¼ feet tall…wow! I’m really starting to feel it whenever I pick her up these days.

We did the CCHS Mallwalk last weekend and had a great time. I walked, Haley rolled and my mom walked with us too! Haley’s aquatics group took home trophies again for most walkers and most funds raised. This year Haley was awake and happy the entire time so it made it so much more fun. Next year we’ve decided we’ll need to recruit a few more people to walk with us and then afterwards plan on attending the CCHS Beach Party. Wouldn’t that be fun? Thanks to all of our contributors!!! We really appreciate all of the donations we received and now we expect you to come out and watch Haley swim one night so you can see your dollars at work! It is an amazing program!

I think this update is getting a little long so I’ll stop here. I have to run to the pharmacy and pick up the new drug anyway so we can get started on that. I know this is something I’ve said before but Haley is THE BEST little traveler and she was rewarded with a mini shopping spree at the Carter’s and Osh Kosh outlet on our way home yesterday. She was so smiley this trip- very nice to see. Her mom and dad weren’t always smiling. Got a nice rock chip in the windshield on the way up to our appointment Wednesday morning- UGH!!! I guess it could have been a lot worse. We hit a GIGANTIC bird on the way up there shortly before we got the chip in the windshield. I thought for sure we’d have damage to the vehicle after that but thank goodness all we needed was a good car wash. We definitely got to break in our Honda Element a lot on this trip. Yuck!Have a good weekend, everyone! Thanks for checking in!

PS- Congratulations to Aunt Sarah for surviving her 21st birthday and not spending a single minute of it (that we know of) in jail! Way to go!

Thursday, January 12, 2006 10:47 AM CST

Our first update of 2006!

As 2005 turned into 2006 our little girl dozed on the couch with her grandpa. He said she was the perfect New Year’s Eve date- he was snoozing too!

Not a lot of changes or news to report since our last update. We’re trying to get back into our normal routine. Haley is back at school and we’re sad to report her teacher will only be with us about another week. She accepted a position elsewhere but luckily there is a new teacher already hired and ready to meet Haley and her friends. We look forward to getting to know her.

Swimming is still on winter break and will resume next Tuesday. I know Haley will be ready to get back into the warm water. Her muscles seem to be getting tighter lately and while the doctors have offered to prescribe drugs that will help with that I am saving that as a last resort. If the warm water therapy works, why give her another drug? Carole (the aquatics instructor at CCHS) has big plans for Haley in the water for 2006! She had a physical therapist come in and do an evaluation at the pool during our last session and they have a regimen of exercises and stretches that they are going to work on every week. It’s nice to have a more structured session and will allow them to measure progress more accurately. Going to the pool isn’t all fun & games for Haley. She’s going to have to work a little too but physical therapy has to be easier for her in the water than it is out of the water.

Speaking of CCHS…we are participating in the MallWalk (January 21st) again this year. Funds that we raise go directly to the aquatics program and purchase all of the wonderful equipment and toys that Haley uses each week at the pool. We’re accepting donations if any of you would like to give or better yet- come out and walk with us. It’s a great time! Then you can come out to the pool with us some night too and see where your money went. I know I’ve said this before but getting Haley into that program has been one of the BEST things for her.

We are still getting used to hooking up Haley to oxygen at night. Really haven’t seen a huge improvement with it but I guess we are still in the trial period. The neurologist at Gillette had the chance to review the results of the sleep study and decided that she would like to see Haley sooner rather than later so we will travel back to see her this month. They will also do a 2 hour video EEG while we are there. We’re looking forward to that not only because it’s fun to watch the EEG technicians freak out when they see Haley’s EEG pattern (sorry- we have to have a little fun when we can) but this is the first time we will get to hear this doctor’s interpretation of the EEG. I’m assuming she will want to adjust medications again and maybe discuss ketogenic diet and VNS implant again. We’ll see!

I’ll update again as soon as there is more news to tell.

Tuesday, December 27, 2005 11:54 AM CST

Hi again,

We had a semi-important visit with a doctor last Friday so I thought I’d update again. First, we hope everyone had a wonderful Christmas. We all must have been very good this year because we got a lot of really nice gifts but the most important thing was that we were all healthy and able to spend the weekend with our families. What could be better than that?

Last Thursday I finally got a call back on the sleep study results. The nurse called to ask if we could come in the next morning to discuss the results because it was “too much to go over on the phone.” I don’t think a clinic should leave you in suspense like that! Oxygen was delivered to our home the week before and then all of the sudden we need to come in right away to talk to the doctor. Hmm…?!?! So we went in Friday morning and the doctor went over the results of the sleep study with me. To try and make a long story short this is what his conclusions were:

1. Haley’s EEG pattern makes it impossible to determine whether or not she has a normal sleep pattern. She still has the “burst suppression” pattern that is a hallmark of Ohtahara Syndrome. A more in depth EEG would tell us more, but I assume not a lot has changed in that department since her last EEG a couple of years ago. The doctor said he’s done about 250 sleep studies on kids since the sleep clinic opened here and this is the first time he’s seen this.

2. Based on the data he gathered from the actigraphy watch Haley wore on her head for 2 weeks, the doctor felt he could see somewhat of a pattern to her sleep cycle and he wants us to make sure she gets 12 hours of sleep a day (11 at night, and a one hour nap during the day). We’re supposed to put her in a dark, quiet room during sleep times and keep her in the sunshine during awake times. Since we think Haley can distinguish light from dark this is really the best way to get that cycle regulated.

3. The oxygen was ordered because her oxygen saturations levels were very low throughout the entire study- not just when sleeping. Record low, according to the doctor. I told him we aren’t trying to set those kinds of records! Anyway, he said there are only 2 things that could cause her oxygen levels to be that low and both are not so good. Heart disease or lung disease. Fortunately, Haley has been seeing a pediatric cardiologist annually for the past 3 years and everything has been fine. In fact, the day of her sleep study she had an echocardiogram and the cardiologist said he’d see us back next year because everything is normal. So the pulmonologist has to assume the trouble is in her lungs. His plan is to put her on an inhaled steroid to open up her lungs and see what happens.

4. The pulmonologist told me he thinks because Haley’s oxygen levels are so low that she should be on the oxygen all the time. However, knowing what a burden it is to transport oxygen everywhere we go (and we all know Haley likes to be on the go!) he said it will be okay if we just have her on it while she’s sleeping at home. The truth is Haley isn’t going to jump out of her chair and start running around just because we’ve started giving her oxygen. Of course, if for some reason we start to see major improvements we can make some changes but it has never been our intention to have Haley dependent on any type of intervention to help her breathe. We went in to this looking for ideas as to how we can keep Haley awake and possibly reduce some of her seizures during the day and maybe uncovered another underlying problem.

That’s the latest news. We’re having a lot better luck keeping the oxygen on so we’ve been using it at night. The doctor absolutely could not believe how healthy Haley has been especially now that all of this other stuff has been brought up. He asked me over and over again about pneumonias and bronchitis. I told him that as far as we know she only had pneumonia that one time (Thanksgiving 2003 I believe?) and although she comes down with the occasional cold, we are extremely lucky because they are infrequent and she recovers quickly. His concern leads me to believe, however, that if she does get sick, things could go downhill rather quickly. We will go back in for a chest xray and follow up appointment in April after a hopefully uneventful winter.

This week Haley is on a break from both school and swimming so she gets to lounge around for now. She made us a lovely wreath with her handprint for Christmas. It’s beautiful and also explained why she came home with one green hand one day last week. She’s cranking out art projects left and right for us this year! School starts up again January 3rd and we’ll put her right back to work.

Wishing you all a happy and healthy 2006!

Tuesday, December 27, 2005 11:51 AM CST

Hi again,

We had a semi-important visit with a doctor last Friday so I thought I’d update again. First, we hope everyone had a wonderful Christmas. We all must have been very good this year because we got a lot of really nice gifts but the most important thing was that we were all healthy and able to spend the weekend with our families. What could be better than that?

Last Thursday I finally got a call back on the sleep study results. The nurse called to ask if we could come in the next morning to discuss the results because it was “too much to go over on the phone.” I don’t think a clinic should leave you in suspense like that! Oxygen was delivered to our home the week before and then all of the sudden we need to come in right away to talk to the doctor. Hmm…?!?! So we went in Friday morning and the doctor went over the results of the sleep study with me. To try and make a long story short this is what his conclusions were:

1. Haley’s EEG pattern makes it impossible to determine whether or not she has a normal sleep pattern. She still has the “burst suppression” pattern that is a hallmark of Ohtahara Syndrome. A more in depth EEG would tell us more, but I assume not a lot has changed in that department since her last EEG a couple of years ago. The doctor said he’s done about 250 sleep studies on kids since the sleep clinic opened here and this is the first time he’s seen this.
2. Based on the data he gathered from the actigraphy watch Haley wore on her head for 2 weeks, the doctor felt he could see somewhat of a pattern to her sleep cycle and he wants us to make sure she gets 12 hours of sleep a day (11 at night, and a one hour nap during the day). We’re supposed to put her in a dark, quiet room during sleep times and keep her in the sunshine during awake times. Since we think Haley can distinguish light from dark this is really the best way to get that cycle regulated.
3. The oxygen was ordered because her oxygen saturations levels were very low throughout the entire study- not just when sleeping. Record low, according to the doctor. I told him we aren’t trying to set those kinds of records! Anyway, he said there are only 2 things that could cause her oxygen levels to be that low and both are not so good. Heart disease or lung disease. Fortunately, Haley has been seeing a pediatric cardiologist annually for the past 3 years and everything has been fine. In fact, the day of her sleep study she had an echocardiogram and the cardiologist said he’d see us back next year because everything is normal. So the pulmonologist has to assume the trouble is in her lungs. His plan is to put her on an inhaled steroid to open up her lungs and see what happens.
4. The pulmonologist told me he thinks because Haley’s oxygen levels are so low that she should be on the oxygen all the time. However, knowing what a burden it is to transport oxygen everywhere we go (and we all know Haley likes to be on the go!) he said it will be okay if we just have her on it while she’s sleeping at home. The truth is Haley isn’t going to jump out of her chair and start running around just because we’ve started giving her oxygen. Of course, if for some reason we start to see major improvements we can make some changes but it has never been our intention to have Haley dependent on any type of intervention to help her breathe. We went in to this looking for ideas as to how we can keep Haley awake and possibly reduce some of her seizures during the day and maybe uncovered another underlying problem.

That’s the latest news. We’re having a lot better luck keeping the oxygen on so we’ve been using it at night. The doctor absolutely could not believe how healthy Haley has been especially now that all of this other stuff has been brought up. He asked me over and over again about pneumonias and bronchitis. I told him that as far as we know she only had pneumonia that one time (Thanksgiving 2003 I believe?) and although she comes down with the occasional cold, we are extremely lucky because they are infrequent and she recovers quickly. His concern leads me to believe, however, that if she does get sick, things could go downhill rather quickly. We will go back in for a chest xray and follow up appointment in April after a hopefully uneventful winter.

This week Haley is on a break from both school and swimming so she gets to lounge around for now. She made us a lovely wreath with her handprint for Christmas. It’s beautiful and also explained why she came home with one green hand one day last week. She’s cranking out art projects left and right for us this year! School starts up again January 3rd and we’ll put her right back to work.

Wishing you all a happy and healthy 2006!

Thursday, December 22, 2005 9:12 AM CST

Today is December 21st- officially the first day of winter although we are ready for winter to be over and done with! It’s so much easier to take Haley out without the coat, hat, gloves and mittens. I never realized how difficult it is to push a wheelchair through snow and the mess a wheelchair tracks indoors is unbelievable. I think I’ve swept up a bucket of sand in my kitchen this week alone. By next winter we will have to seriously consider moving into either an apartment building with underground, heated parking or a place with an attached garage just to make life a little easier on all of us.

In just a few days we will celebrate Christmas. We know a few of you were able to spread a little Christmas cheer to families that are less fortunate than ours and we like to think that Haley was a part of what inspired you to do that. Yesterday I was able to buy a few items for a family that has a little girl about Haley’s age. It was fun to pick out toys that I think Haley would have liked to play with and know that they are going to someone that will actually use them.

Haley made her annual pilgrimage to the mall to see Santa. Santa cried and held onto Haley extra long again this year. I don’t think I will be the one taking her to see him again if he keeps that up- it is quite an emotional experience to see Santa cry. Haley on the other hand was very happy to see Santa. She listened to every word he had to say and very awake. This year the photo turned out really nice. We’ll have to add it to this site but many of you may have already seen it.

This morning Haley’s school had a holiday program. It was very short but sweet. All of the kids were dressed up as gingerbread men and sang songs. Mine was the sleepy gingerbread man. Haley didn’t care to wake up for her 1st performance in front of a live audience but she was still as cute as ever.

Speaking of sleep…Haley had her sleep study last week. We checked in to the sleep lab at 7:30pm on Tuesday evening and were released at about 3pm Wednesday afternoon. LONG night/day if you ask me but Haley slept well and didn’t have too many seizures. However, she did have to be put on oxygen during the test that night. I didn’t think too much about it until the home medical supply company called me the next day to ask when I would like to have oxygen delivered to our home. Apparently since she had to have oxygen during the test, she had to be discharged with oxygen so we are slowly turning Haley’s room into a mini hospital with even more medical equipment. Would have been nice to hear that she needed oxygen from the doctor before we heard it from the medical supply company but I guess things don’t always work that way. As a matter of fact, it’s been a week and I still haven’t heard from the doctor. Our appointment is January 17th so I guess we’ll find out what’s going on then. I can’t get the oxygen to stay on her while she sleeps and I really HATE the idea of taping it to her face every night so we haven’t been using it as much as we should. Maybe when we get a good explanation as to why she needs it we’ll be a little better about putting it on her.

Not a lot else going on. We will have a lot of appointments in January including another trip up to the clinic in Minnesota to see the new neurologist that we like so much. We are also hoping to get in to see an orthopedic specialist while we’re there about Haley’s hip development and maybe also talk about future wheelchair options as Haley’s time in the Kid Kart is just about up and it will be time to move on to something else. We just keep our fingers crossed that Haley stays well and has lots of happy, alert days.

We hope all of our loyal readers have a wonderful holiday. We are so happy to be able to share Haley with so many of you and are thankful for the love and support we are shown throughout the year.

Merry Christmas and Happy 2006!

Tuesday, December 6, 2005 3:14 PM CST

Just thought I would do another update to let you know what we’ve been up to these days.

First of all, thank you to everyone that helped make Haley’s 4th birthday special. We are definitely into the birthdays we were told we would never see and we only hope that Haley continues to have another healthy, happy year so we can do it all again next year.

We were lucky enough to celebrate Thanksgiving twice. Thursday was spent with the McGourty’s where we had quite a crowd this year and Saturday we went to Madison to see the Lingbeck’s. Aunt Darlene prepared a delicious meal and Haley sampled quite a bit of it. What were we most thankful for? We didn’t have to spend Thanksgiving in the hospital this year! That makes 2 in a row! Maybe Haley finally figured out that Thanksgiving meals are better at home than at the hospital.

This sure has been an interesting week- and it’s only Wednesday. We had a blizzard and school was canceled on Monday. For the Sioux Falls schools to be closed due to weather is almost unheard of but I was glad because it was so nasty out, I wouldn’t have sent Haley out in that even if the school had been open. Yesterday there was no school for Haley again because of the weather but we had to venture out anyway for a doctor’s appointment. We saw a pulmonologist that specializes in pediatric sleep disorders. He agreed it would be a good idea for Haley to have a sleep study done to see if she has sleep apnea. If she does have sleep apnea, they can treat that and maybe we’ll be able to get closer to a normal sleep cycle for Haley. If the sleep study rules out sleep apnea, chances are the neurologist will prescribe drugs to wake her up and put her to sleep. We’ll see. The sleep study is scheduled for December 13th. Until then, we have to keep a diary to keep track of her sleep cycle. She also has to wear a device on her head for the next 2 weeks that monitors her movements. This will tell them if she’s sleeping at night and during the day- if she’s moving her head, chances are she’s awake. Most people wear this on their wrist like a watch, but since Haley has very limited movement of her arms and legs the doctor thought her head would be the best option. We attached it to a headband but it still looks like she has a watch on her head. Poor kid! It will be interesting to see if anyone asks us about it when we’re out in public. She also got her flu shot at the doctor’s visit yesterday and didn’t even cry. She is so brave!

Today when my mom dropped Haley off at school she noticed there was a little girl in her class that either didn’t have a coat or just wasn’t wearing it (which with below freezing temperatures I find a little hard to believe). Of course my mom had to go out and get that little girl a coat and I know I would have done the same thing. These little kids need to keep warm! Made me think about what a lucky little girl Haley is with a closet full of warm clothes to wear, more toys and books than she knows what to do with and a family that loves her more than anything. With Christmas right around the corner, we ask that you remember those that are not as fortunate as we are. A good deed for someone struggling or a contribution made to a charitable organization (don’t forget Make-a-Wish, Laney Bear Care and even this site- CaringBridge) will mean more to us than any material item you give Haley for Christmas. Tell us what Haley inspired you to do this season, big or small! We can’t wait to hear the stories!

The snow is falling again and while part of me dreads the snow, ice and slippery roads the other part of me can’t wait to go home and have an excuse to not go out and instead stay inside and snuggle with Haley. You never outgrow loving snow days!

Friday, November 18, 2005 3:14 PM CST

Hello Everyone:

Haley is keeping us busy, as usual! She managed to come down with a little cold right before I had to fly off to Chicago for work a couple weeks ago. Thankfully, it never turned into anything more serious. I hated to leave her when she wasn’t feeling well, but I knew she was in good hands. We’ve been following Dr. Wical’s (from Gillette Children’s in MN) plan of attack and increasing her Felbatol. I took Haley to get a blood level check earlier this week and to my surprise I got a phone call from Dr. Wical herself yesterday. I don’t think the actual doctor has ever called me directly- and definitely not without me calling them first if it did happen. She had gotten the lab results and just wanted to know how Haley was doing and if I felt the medicine increase had any positive effect. I told her I thought Haley’s sleep pattern has been a little better (we still have a sleep study planned for later this month), but that the seizures seem to be about the same. In fact, we had to give her Diazepam to stop some really nasty seizures a couple of times this week already. She wants to increase the Felbatol some more and then we will call her back with an update in about 2 weeks. Increasing Felbatol can cause some tummy problems so we have to watch for that but so far so good! This week I also had to take Haley in to see the physiatrist because the physical therapist at school called with some concerns with Haley’s hips. The last time we saw the physiatrist she ordered hip x-rays and we had those done several months ago. I called for the results, but no one returned my call and I assumed everything must be okay. When we got to the appointment, they asked if we had done the x-rays. I told them we had, and they said they did not have anything on file. Why is it difficult to get an x-ray report from Sioux Valley East to CCHS? The nurse got on the phone right away to try and track down the x-rays. In the meantime, the doctor and a couple of therapists evaluated Haley and adjusted her KidKart since she keeps growing and growing. They told us that this is the last adjustment they will be able to make to her chair because she has outgrown it and will probably have to graduate to a big girl wheelchair in the very near future. Finally, the x-ray report comes in and it says “congenital hip dislocation.” Great. Would have been nice to know there was some sort of problem months ago when the x-rays were done. Not that I completely believe there is a problem. When the x-ray was done they had Haley sitting on a rolling stool with one person holding the stool, one holding her head up and one actually taking the x-ray real fast before she fell off. So I don’t know how accurate a picture they got with her in that position but now they want us to see a pediatric orthopedic specialist. They gave us the name of one in Sioux Falls, but I think we’re going to wait and see if we can see someone at Gillette. I also would prefer to have her evaluation for a new wheelchair done there too. It’s definitely worth the drive if it means better care for Haley.

Our girl will turn 4 on Sunday. Tonight we will head up to Grandma and Grandpa L’s for a small birthday celebration with them. The other side of the family will get together for dinner on Sunday. Grandma and Grandpa M let Haley have her birthday present a little early. They got her a much needed new coat just in time for this cold weather we’ve been having. It’s purple and she even got matching hat and mittens. She looks so cute in it! We only hope that this coat doesn’t disappear at school like her jacket did.

I can’t believe Haley will be 4! What Haley lacks in physical ability she more than makes up for in spirit and I think that is why so many people are drawn to her. She is so loved, so beautiful and I’m so proud to be her mommy. Happy birthday, Haley Q! Thank you for all the important lessons you’ve taught us and for your patience as we try to figure out how to best take care of you- especially when you can’t tell us. We’re learning!

WE LOVE YOU, HALEY!!!

Thursday, October 27, 2005 10:29 AM CDT

Hello Everyone:

We left for our appointment with the new neurologist shortly after 6 am last Thursday. I don’t think Haley slept at all the night before our trip because she was still wide awake as we were getting ready to go. We weren’t very far into Minnesota when she started screaming- not sure if she had a little tummy ache or was just tired but I thought it was going to be a long ride. We pulled over at a rest stop and I held her for about 10 minutes and she settled down. She finally fell asleep and the rest of the ride was quiet. We got to Burnsville in plenty of time for our 11:30 am appointment. We even had time to grab a quick lunch which turned out to be a good idea because we spent almost 3 hours with the doctor. Chris and I were both very impressed with Dr. Wical after this first visit. She didn’t promise any miracles- in fact she told us that Haley’s seizures will probably never be fully controlled. But she did have some new ideas for us that will hopefully make Haley’s quality of life better. First of all, we are going to increase the seizure medications that Haley is currently on, one at a time, to see if they do anything for the seizures. Haley’s blood work shows that the levels of these medications in her system are very low and she is still having seizures. Why not increase to a higher level, see if the seizures decrease? If they do decrease we will continue with that medication and if not we will get rid of it and try something else. Makes sense to me. Dr. Wical was a little bit concerned with Haley’s sleep pattern. Probably didn’t help that Haley was conked out the entire time we were there! If the seizures are worse when Haley is waking up and falling asleep and she is basically in and out of sleep at random times throughout the day and night, maybe we will be able to give her medication that would help her wake up in the morning, stay awake and fall asleep at night. Doesn’t really guarantee that the seizures will go away but maybe we will see fewer throughout the day. Dr. Wical thought if we could even cut down say 20% of the seizures by doing this, it would be a huge break for Haley. First she wants us to have a sleep study here in Sioux Falls to make sure there aren’t underlying causes (sleep apnea, for example) that could be interfering with Haley’s sleep. I really think the only thing that interferes with Haley’s sleep are those darn seizures so I don’t think they will find much during the sleep study. Actually, I would be willing to bet that the night they do the sleep study it will be the best night of sleep Haley ever has. She always seems to know when she’s on display! So that is the plan for now. Increase the meds, get the sleep study done, wait and see what happens.

We will go back to see Dr. Wical in January or February to discuss our next plan of attack. She has one more seizure medication that she’d consider trying (Lamictal) and she really would like us to consider either the ketogenic diet or the VNS (vagus nerve stimulator). Haley will have a video EEG (oh no- glue head again!) when we go back and she will also be seen by 2 more Gillette Children’s team members- a pulmonologist (to discuss the sleep study results) and a physical medicine and rehabilitation doctor (to talk about hip development, orthotics, seating, etc.). I know we have access to all of those types of specialists here, but I like the fact that when we take Haley to Gillette, they will work together to determine what is best for her. Here, it never seems like one doctor knows what the other is doing. I’ve never liked that. I couldn’t believe how much time Dr. Wical spent with us. For the first time I walked out of a pediatric neurologist’s office and actually felt good.

After our appointment we decided to check into our hotel and then we went to the Mall of America for a few hours. I thought Haley would enjoy that but she kept on sleeping. We went back to our hotel room and decided the easiest thing would be to walk to the restaurant across the parking lot to get something to eat. Haley woke up and Chris and I ordered our food. Chris noticed that Haley was making the certain face she makes that means only one thing- she needs to poop! Someday I hope Haley is embarrassed about me telling this story- I can’t believe I have turned into that kind of mom! Of course I didn’t grab a diaper or anything and chances are the restaurant bathroom didn’t have a changing table that would accommodate Haley anyway so we had to go back across the parking lot to our hotel room so Haley could do her business. If you know our stories about Haley and her bathroom habits you will know that when I went to flush I was holding my breath that everything would go down and I wouldn’t have to call the front desk about a plugged up toilet. Do you really think that they would think that this sweet little girl was the one that clogged it all up? They would have thought I was the one that had done it and blamed it all on my poor, innocent child! Lucky for us we had a quality toilet with a powerful flush and everything went down okay. We went back to the restaurant and joined Chris for dinner. The next morning, we decided to check out the outlets in Albertville, MN. We shopped there for quite a while and then decided we didn’t need to be back in Sioux Falls for any reason so we decided to get back in the car and drive through northern Minnesota. The trees were beautiful! We spent Friday night in Bemidji. We took Haley swimming in the pool and the hot tub there and she loved it. Saturday we drove back home. With all the time we spent in the car I thought Haley would get fussy again but she never did. She is the absolute BEST 3 year old (almost 4!) to take on a trip. She deserves a medal.

This update is very long and I’m sure I’ve forgotten to add a few things I wanted to share. If I think of them I’ll be sure to save them for the next update.

Thanks for checking in on us!

Thursday, October 6, 2005 1:21 PM CDT

Hello Everyone!

Thought it was time for another update!
Haley is still doing very well at school. They have her up in a stander for at least 15-20 minutes each day and she really seems to like getting up in that position. Bearing weight on her hips and legs is very good for her development and could help prevent problems down the road that could only be repaired surgically. We definitely want to avoid any problems like that if we can. Haley had school pictures a couple of weeks ago and this week they were supposed to go on a field trip to the fire station but that trip had to be canceled due to the weather. Too bad- I think Haley would have really enjoyed that outing. On the 31st Haley’s class will be having a Fall Festival party and she gets to wear a ‘wacky’ outfit to school. Should be fun! I never thought I’d have to worry about Haley losing something at school but somehow she came home without her jacket one day and no one seems to know what happened to it. Her grandma thinks maybe she ditched it at school so she could get a new one! Oh well…I guess I’m going to have to do the “mom” thing and start writing her name on everything. We’ve sort of made the jump from jacket weather to coat weather now anyway.

Unfortunately Haley managed to pick up some sort of cold/virus and was sick for a week. I ended up taking her to the pediatrician for some antibiotics because she had a nasty cough that just wouldn’t go away. She was working so hard to cough that it was wearing her out but she couldn’t sleep because she had to cough all the time. The antibiotics did the trick and she was back to herself in just a couple of days. We also checked in with the feeding clinic last month and that visit went well. They were happy with her weight gain- not too much, not too little. We don’t have to check in with them again until January. Yesterday Haley went to the dentist before school and she did NOT enjoy that visit at all. She cried. I was in the waiting room and when they called me back (because parents don’t get to go back with the kids at this clinic) I heard crying and knew right away it was Haley. I felt so bad!

Last week we were visited by a social worker from the Sioux Falls Family Support program. Right now Haley is enrolled in the state program but they had an opening on the local program so we’re getting transferred to that. The state program reimbursed us for the cost of Haley’s diapers after she turned 3 years old. The local program expressed interest in providing funds for not only diapers but also to cover the cost of swimming which would be great. I also mentioned to them that I think Haley would like to have an indoor swing so that’s been added to our wish list. As Haley grows and we need more specialized equipment we can ask Sioux Falls Family Support for funding assistance if necessary. They try to help families with as many things as they can so the child can stay at home instead of having to move into a specialized care facility.

We’re going to take a little trip to MN on October 20th. We’re taking Haley there to see a new neurologist from Gillette Children’s just to see if she has any new treatment options to offer us. We’ve decided to spend the night and maybe do a little Christmas shopping while we’re up there. I’m looking forward to the trip. It’ll be nice to get away even just for a couple of days. We’ll let you know if anything comes out of our visit with the new doctor.

We are assisting Laney Bear Care with a fundraiser this month by selling raffle tickets. Tickets $1 each and you can choose to have your name put in for 4 different prizes. Let us know if you are interested in purchasing tickets. The raffle will be held October 17th!

Thanks for taking the time to check in with us!

Amy

Monday, September 19, 2005 5:47 PM CDT

Hello Everyone!

Haley is doing very well at school. The first couple of days she played possum (slept) but by the third day or so she was comfortable enough to keep her eyes open and check out what was going on around her. They sure do keep her busy at this new school! There are only 4 children in the class and 3 of the 4 are in chairs like Haley so she fits right in. In just two weeks she’s painted a picture, gone for a walk with another class, played a piano, looked at herself in a mirror, played with musical switch toys, read stories, helped make cupcakes, danced the Hokey Pokey, sang songs, blew bubbles. How was that for the first couple of weeks? Oh, I should mention therapy too. Right now she is getting OT and PT and some days they are with her for 30 minutes a day. They’ve been putting her in a stander for 15 minutes a day and Haley really seems to like getting up off the floor and seeing the world from a different angle. It’s no wonder she’s tired by the time she gets picked up from school at 12:30- she’s had a full morning. Every day Haley’s teacher sends us a little note home telling us what she did at school that day and usually includes a little note to let us know how her seizures were, etc. Yesterday’s note ended with a comment that said, “Haley is doing wonderful at school.” We are SO proud of her!!!

Haley continues to swim on Tuesday evenings at CCHS. The only downfall is that she is a little more tired by that time than she used to be, but with all of the work she’s been doing at school, it’s still nice for her to be able to get in the warm water and stretch out and relax.

Our nurses still come to the house Mon-Wed afternoons to stay with Haley while we’re at work. We joke that Haley is a “latch-key” child now because we have to send her own keys with her to school so she and the nurse can get into the apartment when she gets home. We’re lucky that we got to keep the same 2 nurses that we had all summer. It’s so nice when we know we’re leaving Haley with someone that knows her. They really seem to enjoy spending time with Haley and Haley is comfortable with them too.

Next week we will check in with the feeding clinic for a height/weight check and to make sure we don’t have to make any changes to Haley’s diet. She’s still on Pediasure through the feeding tube but enjoys having a few snacks throughout the day. They even give her a snack at school. We’ve discovered a new favorite- lemon pudding. October 5th Haley will get to visit the dentist again. Other than that, I don’t think we have any other upcoming appointments at this time.

This is kind of long, but someone sent me this story and I thought it was quite fitting- especially now that our “miracle” is blossoming at school. I’m sorry I don’t know who wrote this or where it comes from.

Once upon a time, three angels were busily working in the miracle factory. They were responsible for wrapping up all the little miracles and sending them on their way. Normally they wrapped each one in bright, sturdy paper with big, shiny ribbons. They stamped it with a delivery date and away it would go to the parents who eagerly awaited its arrival. Things usually ran pretty smoothly. One day, however, down the conveyer belt came a little miracle that made the angels pause. "Oh my," said the first angel "this one's um...well...different." "Yes, she is unique" said the second angel. "Well I think she’s quite special" said the first angel, "but I don't think she will quite fit our standard wrapping procedures." And the second angel added, "And we know she's special, but will everyone else?" "Not a problem," said the third angel "obviously a special miracle deserves extra special wrapping, and of course we'll send her off with our most heartfelt blessings. Then everyone will see how special she is." "What a wonderful idea!" replied the others. They searched the shelves high and low for their finest paper, and their most delicate ribbons. When they were done, they stood back and admired their work. "Beautiful!" they all agreed. "Now for our blessings," said the third angel, "for it is time for her to go." "I will bless her with innocence and happiness," said the first angel. "And I will bless her with strength to face the many challenges that lie ahead" said the second angel. "And I will bless her with an inner beauty that will shine on all who look upon her" said the third angel. Before sending her off the third angel, who was very wise, gently tucked a note inside.

It said:

Dear Parents,
Today you have received a very special gift.
It may not be what you were expecting,
And you may be disappointed, angry and hurt.
But please know that she comes with many blessings,
And, while there may be pain, she will bring you much joy
She will take you on a very difficult journey,
But you will meet many wonderful people.
She will teach you patience and understanding
And make you reach deep inside yourselves
to find a source of strength and faith you never knew you had.
She will enrich your lives,
And will touch the hearts of all who meet her.
She may be fragile,
But she has great inner strength.
So please handle her with care,
Give her lots of attention,
Shower her with hugs and kisses,
Love her with all your heart,
And she will blossom before your eyes.
Her spirit will shine like the brightest star for all to see,
And you will know that you are truly blessed.

Until next time...

Friday, September 2, 2005 2:31 PM CDT

Hello Everyone!

Labor Day is almost here and that is a sure sign that summer is coming to an end.

A couple of weeks ago we had to do something we haven’t done in a while. A surprise visit to the acute care clinic! Haley’s nurse told me that Haley had been running a slight temperature all day. I figured she was probably getting ready to come down with something and didn’t think too much of it. Later that night however, we noticed Haley’s right elbow was red, swollen and hot to the touch. Didn’t seem to bother her at all, but it sure bothered us. We called Ask-a-Nurse and they told us she should be seen by a doctor that night so off to acute care we went. Turned out to be nothing more than an insect bite of some sort (or so they say) and we put some calamine lotion with Benedryl on it and it cleared up after a few days.

Other than that incident to shake things up a bit, Haley has been happy & healthy. Swimming started back up for the school year last Tuesday night and Haley was very happy to be back in the pool. When I got home from work that day I asked, “who wants to go swimming?” and she started grinning from ear to ear. I hope she’s that excited about going to school. Her first day at Hawthorne Elementary will be Tuesday, September 6th. We attended an open house last week and we got to meet her teacher, some therapists, and the school nurse. Everyone seems very excited to have Haley there. We’re going to give the school a week or so to get to know Haley and then we’re going to sit down with the teacher and therapists and reevaluate the therapy plan. Haley’s PT and OT needs to be increased and they have already mentioned to us that they would like to also add speech therapy. Haley will be in school from 9am-12:30pm Monday through Thursday. We’ll have a nurse come to stay with her at home after school Monday-Wednesday and Thursdays and Fridays will still be reserved as “Grandpa Day.” Not sure how Haley will like going to school in the morning- we all know that she likes to sleep in. 9am is usually prime time for an after breakfast nap but maybe she’ll adjust her schedule eventually.

Last Friday night we participated in a fund-raising event for Laney Bear Care. Over $3,000 was raised to help families of children with rare diseases. We had a great time and Haley really enjoyed having her “fan club” there. I gave a little speech about Haley and how Laney Bear Care assisted us in getting home nursing care while a slide show of photos of Haley were projected up onto a screen behind me. I really liked looking at some of the photos of Haley when she was so tiny. Could she have ever really been that small??? It was a great event- there just weren’t enough people there!!! Better luck next year. Thanks again to Haley’s Great Uncle Dale who donated 2 prize winning pieces of art to be auctioned off for the cause. We were so proud to have our families there with us that night and Haley (as always) enjoyed being the center of attention.

As I watch the coverage of Hurricane Katrina and the aftermath on television, I can’t help but wonder how we would ever get through such a catastrophic disaster like that with Haley. I hope we never have to find out.

**Some may know Haley's Great Aunt Diane who lives in New Orleans. Thought this may be the best forum to get some news out to everyone that she and her family were back in their home on Wednesday night. It had damage to the roof and some water damage, no electricity or running water but they were going to try and stay as long as possible. They know there is always a "home" in South Dakota if they decide to or are forced to leave the area. Our prayers go out to all of the affected people in the Gulf area.

Until next time...

Tuesday, August 16, 2005 3:18 PM CDT

Hello Everyone!

Haley’s eye exam went really well. The doctor really feels that she can see and that we should continue to visually stimulate her with books and toys as much as possible. He said she could use glasses now but at this point the amount of correction she needs is very small. He let us decide whether or not to go ahead and get her fitted for glasses and would like to see her back in a year for another exam. We’re not going to bother with the glasses at this time. I think it would be more trouble keeping them on her.

Haley and her dad went shopping last weekend for Project S.O.S. (supply one student). Chris couldn’t stand the fact that there are kids that might have to go to school without a brand new box of crayons and backpack. I’m not sure who had more fun picking out notebooks and pencils- Chris or Haley. And speaking of school, sounds like we finally have a plan worked out for Miss Haley. She is going to attend Hawthorne Elementary this fall. It wasn’t our first choice but after touring the school I think it is going to work. This will be the first year this school has a program for kids like Haley and it sounds like the staff is very excited about working with us. Since the program is new, there will only be 4 children in Haley’s class to start which will be kind of nice although I made sure to mention that Haley is a social butterfly and likes to be around lots of other kids. They told me not to worry, they can always ‘sign out’ Haley to another classroom from time to time and she’ll get to participate in larger group activities like music with them. I think that will be a perfect balance. School starts for her on September 6th and this year she will have to go in the morning. I’m not sure how that will work- we all know Haley isn’t a morning person but maybe she will adjust with time. Since she will be at school in the morning we are going to have to see if we can keep our nursing care year round so that someone will be there to watch her when she gets out of school in the afternoon. Tanya from Laney Bear Care is already working on that for us…as if she doesn’t have enough work to do! Don’t forget the Laney Bear Care “Legacy of Inspiration” art auction will be held on Friday, August 26th at 7pm at the downtown Holiday Inn. Haley’s Great Uncle Dale brought us 2 paintings for the auction last week and we’d like to thank him for doing so. We hope to have a nice turnout for the event and raise some money for a great organization. We’ll see you there!

We did take Haley out to the fair last Saturday. Last update I promised I would bring my camera if we took her out there but I didn’t have it with me! It was kind of a spur of the moment thing- we weren’t sure if it was going to rain and it was kind of cool but we went and Haley had a blast. One of the “carnies” gave her a little stuffed animal and she proudly held on to it all day. We bought her some cotton candy which she seemed to like. I’d put some in her mouth and she’d wait for it to start to dissolve and then start chewing. When it was gone she’d open her mouth wide for more. Just like a little baby bird! On Sunday we had a nice family brunch at the home of Don and Donna Amert, Chris’ uncle and aunt in Madison. Haley once again enjoyed herself but came down with a case of the “sneezes.” I thought for sure she was coming down with something, but the next day she was fine. Thank goodness for that!

We’re on break from swimming for now. They’ll start up again in September. Tomorrow night my bowling girls and I (and we’re letting Chris join us too!) are bowling in a benefit for Ryan Bade who has been in a coma since his jet ski accident earlier this summer. Ryan’s mom bowls on our Thursday night league so we are glad to help in anyway we can. Besides, it will be fun!
We’re staying busy as ever- no wonder the summer seems to have flown by!

Until next time...

Monday, August 8, 2005 9:15 PM CDT

Hello again, everyone!
Take a look at some new photos!!
Haley reminded me of something yesterday. I came home from work and she was watching her “stories” (cartoons) with the nurse- not too happy or sleepy…just kind of hanging out on her Boppy. When the nurse left I gathered up Haley’s swimming gear and started to get her ready for the pool. At first mention of “swimming” she just lit up and started smiling all over the place. I thought she was even going to laugh out loud for a second! She definitely loves the pool- and I should also mention there is a particular young man that swims at the same time as Haley on Tuesdays and that may have had something to do with it! Haley reminded me with her beautiful smile yesterday that we have come a long way in 3 years and should be grateful for what she can do instead of focusing on the things she can’t. I still remember the Haley that used to sleep all day and all night- a parent’s dream to some but we’d much rather see some of her personality shine through. She sure has taught us to pay attention to the cues she gives us (no matter how small) that let us know her likes and dislikes. Keep it up, Haley!
I want to tell everyone about another Laney Bear Care fundraiser that we will be participating in. It’s called “Legacy of Inspirations” and will be held Friday, August 26th at the downtown Holiday Inn at 7pm. There will be an art auction, food, drink and activities for children. Tanya Sandness, the founder of Laney Bear Care, has asked me if I would contribute to her presentation by saying a few words about Haley and how LBC assisted us in getting our nursing care set up. I’d like to invite everyone to attend- I hope it will be a fun event that will not only raise awareness of children with rare diseases living in our community, but also raise funds to help these families. Oh- I know we have some artists in the family so if any of you care to donate some of your artwork, contact me and I’ll give you all of the details.
Tomorrow Haley will see the ophthalmologist and I’ll give another update if we find out anything new. Nursing care at home is still going very well. Both of the nurses that we primarily work with seem to have developed a special attachment to Haley. Still don’t know what we’re going to do about school yet and that will be starting very, very soon. We’ll have to start making some phone calls and discuss our plan of attack.
Next week we’re going to have to find some time to get Haley out to the fair if it isn’t too hot. She had such a blast there last year with all of the animals and the commotion in general. I’ll be sure to take the camera with us this time.
Thanks again to all of our family and friends that still check in on us from time to time. We still check the guestbook everyday and love to see who has dropped in for a “Haley update.”

Until next time...

Monday, August 8, 2005 8:36 PM CDT

Hello again, everyone!
Haley reminded me of something yesterday. I came home from work and she was watching her “stories” (cartoons) with the nurse- not too happy or sleepy…just kind of hanging out on her Boppy. When the nurse left I gathered up Haley’s swimming gear and started to get her ready for the pool. At first mention of “swimming” she just lit up and started smiling all over the place. I thought she was even going to laugh out loud for a second! She definitely loves the pool- and I should also mention there is a particular young man that swims at the same time as Haley on Tuesdays and that may have had something to do with it! Haley reminded me with her beautiful smile yesterday that we have come a long way in 3 years and should be grateful for what she can do instead of focusing on the things she can’t. I still remember the Haley that used to sleep all day and all night- a parent’s dream to some but we’d much rather see some of her personality shine through. She sure has taught us to pay attention to the cues she gives us (no matter how small) that let us know her likes and dislikes. Keep it up, Haley!
I want to tell everyone about another Laney Bear Care fundraiser that we will be participating in. It’s called “Legacy of Inspirations” and will be held Friday, August 26th at the downtown Holiday Inn at 7pm. There will be an art auction, food, drink and activities for children. Tanya Sandness, the founder of Laney Bear Care, has asked me if I would contribute to her presentation by saying a few words about Haley and how LBC assisted us in getting our nursing care set up. I’d like to invite everyone to attend- I hope it will be a fun event that will not only raise awareness of children with rare diseases living in our community, but also raise funds to help these families. Oh- I know we have some artists in the family so if any of you care to donate some of your artwork, contact me and I’ll give you all of the details.
Tomorrow Haley will see the ophthalmologist and I’ll give another update if we find out anything new. Nursing care at home is still going very well. Both of the nurses that we primarily work with seem to have developed a special attachment to Haley. Still don’t know what we’re going to do about school yet and that will be starting very, very soon. We’ll have to start making some phone calls and discuss our plan of attack.
Next week we’re going to have to find some time to get Haley out to the fair if it isn’t too hot. She had such a blast there last year with all of the animals and the commotion in general. I’ll be sure to take the camera with us this time.
Thanks again to all of our family and friends that still check in on us from time to time. We still check the guestbook everyday and love to see who has dropped in for a “Haley update.”

Until next time...

Thursday, July 21, 2005 4:17 PM CDT

Hello Family & Friends,



We hope everyone is enjoying their summer. Time seems to be really flying by. This might have to be a lengthy update because we haven’t updated in quite a while!

Haley is staying quite busy these days. We still have nurses come into our home to care for her on Mon-Wed each week and that is going extremely well. Thursdays and Fridays Haley still gets to spend her days with my family which she also enjoys. Aunt Sarah has a new puppy named Roxy which has been nicknamed “Haley Q 2” because when grandma talks to “Haley Q 2” she sometimes pretends to be sleeping, much like the original HQ. Also, “Haley Q 2” is able to get into all of the things that Haley can’t so I think they kind of work as a team. J If Roxy ever holds still long enough, maybe we can get a nice photo of the Haley Qs!

Haley is swimming at CCHS twice a week this summer and really doing well there too. There seem to be a lot more children in the water at the time we’re going now and she likes the waves and the noise they make. The water in the pool is almost too warm for this time of year so they run a cold water sprinkler at one end of the pool. When they take Haley down to that end you should see her try to get away from the cold water hitting her face. She just about squirms out of her flotation collar! I know Haley doesn’t like that too much but it is so nice to get some sort of reaction out of her.

Last month Chris and I took a weekend trip to the Black Hills with our Pakistani neighbors. Haley got to spend some time with her Grandma and Grandpa L and even got to go to a wedding with them. I’ll leave it to Chris to tell the story of our weekend- he tells it so much better than I do.

We had a nice, quiet 4th of July weekend. Holly & Rob invited us over one night for a nice meal and to watch Adam’s fireworks display. Haley was treated to a fabulous red, white and blue manicure and pedicure while we were there. I think Haley enjoyed hanging out with their boys a lot.

We’ve been to a few doctor appointments just to check in with them. Dr. Bunch (her neurologist) prescribed a new drug (diazepam) that we can administer if Haley’s seizures are especially bad. We’ve had to give it to her on a couple of occasions already and let me tell you- that stuff just about knocks her out in a very short amount of time. It’s great for getting her settled down and asleep at night but I think she is very groggy for the next couple of days so we only use it if we really feel there is no other choice. Today we saw Dr. Johnson (physiatrist) and had to have Haley’s ankle/foot orthotics adjusted. The kid just keeps growing! Also, she wants to keep an eye on Haley’s increased muscle tone because that could lead to other problems (especially with her hips) as she continues to grow. We’re going to do some x-rays to see how her hip development is coming along and work on keeping her stretched out at home. If there isn’t a lot of improvement we may have to consider using a drug to keep her muscles relaxed. We have an appointment with an ophthalmologist the first week in August and I’ll be interested in what they have to say about Haley’s vision. She saw an ophthalmologist at the Mayo Clinic when we first started going up there and they said there is no reason she can’t see (everything seems to be normal) but they just aren’t sure about what her brain is processing. Dr. Bunch thought it would be a good idea to have her examined again because she noticed if we get right in Haley’s face she responds better and it would be a shame if she’s missing out on seeing the world around her just because she’s nearsighted.

Last weekend Chris and I volunteered at JazzFest. A very HOT day but I think it was worthwhile because we collected a lot of donations. Some of the money collected goes back to JazzFest to keep it a free event but a portion also goes to organizations that provided the volunteers. The organization we represented was Laney Bear Care. They helped us get our nursing care which has been an incredible help to us this summer as you all know and we thought we would do what we can to assist them in raising funds so they will be able to help other families. I think we’ll be ready to do it again next summer so if anyone is interested in joining us, I’m sure they wouldn’t turn away more volunteers.

Other than that, we’re just trying to enjoy the nice weather and get Haley outside on the days it isn’t too hot. We’re still contemplating what to do about school for the fall- I don’t know when she will have to start going back but I don’t think we’re going to send her to the same school she attended last year. Not that she didn’t do well at that school because I think she did great (and maybe even taught them a thing or two!) but I think there are other schools in the area that are better equipped to handle Haley.

One last thing…my dear friend Noelle recently completed her Master’s Degree and will soon be going on a trip to Ireland and Scotland. I don’t know what I’m going to do not being able to talk to her while she’s gone, but I know she reads this and I wanted to congratulate her publicly because I know how hard she worked and she deserves to have a great time on this incredible vacation. I’m so glad I can say, “I knew her when….”

That does it for this update. Thanks for checking in on us!!!

Monday, June 6, 2005 9:36 AM CDT

Hello Everyone:

Haley had home nursing care 2 days this week. The nurse that we had is named Joann and she will see Haley every Monday & Wednesday with someone else covering the Tuesday shift. We haven’t met that person yet. Thursdays and Fridays she will still get to go hang out with her grandparents. I think this arrangement is going to work out very well. It’s so nice to not have to move Haley in the morning. It sometimes takes Haley a while to warm up to a new person but I think she’s already getting used to Joann. On the first day Haley decided to play possum. Joann said Haley wouldn’t open her eyes at all that morning. I went home at lunch time just to see how everything was going and as soon as Haley heard my voice she opened one eye. I held her hand and talked to her and soon both eyes were open. Joann said she was alert and happy the rest of the afternoon. I think Haley was a little concerned when she woke up that morning and instead of Mom or Dad or someone she knows she was left with a stranger.

We’ve decided to skip the summer school thing and just do swimming 2 times a week instead. I think she’ll get a lot more out of that. I’m starting to get the impression that Hayward elementary would prefer that we didn’t send Haley back there in the fall because they keep trying to get me to enroll her at Hawthorne next fall instead. I guess they feel Haley would do better at that school because there is more adaptive equipment there. I thought they would move whatever equipment she needs to her classroom but maybe that’s asking too much. I’m getting to the point where I don’t want her to go to school at all. I know she will probably never learn to read, write or do math like the other kids but she needs to go to school because that is where she gets her physical therapy. Without therapy, I’m afraid her muscles will contract and she’ll be in a lot of pain and impossible to move. Sure we could put her on drugs that would reduce her spasticity, but why give her something that’s going to make her sleepy when we are finally getting to a point where she is awake and alert more often than not? 15-20 minutes of therapy a week isn’t going to cut it. I don’t understand why people in education set her therapy program. Shouldn’t this be done by a physician that knows her condition and what problems we may face if she doesn’t receive adequate therapy??? I try to give input as to what I think she should have, but am made to feel like I am asking too much for my child. Even one of Haley’s doctors once told me that the amount of therapy Haley receives at school is probably about the same as any other kid gets because that’s what the school can accommodate. That may be true but the other kids are running around and able to hold up their head. Mine can’t.

Hope everyone had a nice Memorial Day weekend. We went up to Grandma & Grandpa L’s and discovered that Haley now enjoys ice cream. She took quite a few bites of Grandpa’s cherry nut ice cream and did so well with it. She was actually able to get it off of her lips herself rather than us scraping it off with the spoon and refeeding it to her. She didn’t want to waste a bit of that ice cream! Last night when I picked her up she was having some of her other grandpa’s coffee ice cream. She likes anything with a strong flavor. Guess it’s no secret that Haley has both grandpas wrapped around her little finger- along with her dad and Uncle Mike. She just bats her eyelashes at those guys and gets whatever she wants!

Until next time...

Thursday, May 26, 2005 9:00 AM CDT

Hello Everyone:

We have to thank Tanya from Laney Bear Care for all of the work she did for us in getting home nursing care approved for Haley. I don’t know how she did it but we have been approved to have an LPN stay with Haley on Mondays, Tuesdays and Wednesdays this summer while Chris and I work. Thursdays and Fridays she will still have her time with Grandpa. We met with the nursing agency yesterday and she said they will be able to start sending someone over as soon as next week. The timing couldn’t be more perfect- Haley’s last day of school was yesterday and we were really struggling to come up with an afternoon daycare solution. The school district did finally approve summer school for Haley and I am still debating whether or not to even send her. She would have to go to Hawthorne Elementary Tuesday-Thursday from 8:30am-11:30am. After having to ask for an exception to allow her to attend school this summer and receive therapy services while she’s there, I hate the school district to think that I am refusing services so I probably should send her. On the other hand, since we’ve got this nurse coming to the house to stay with her, I think it would be so much easier to just let her stay there all day rather than shuttle her back and forth to school for what will end up being 15 minutes a week of therapy. We still haven’t even been told who her teacher will be or what classroom we should take her too and she’s supposed to start June 7th. I’m really leaning towards the not sending her option. The aquatics coordinator at CCHS asked if we’d like to send Haley to swimming twice a week for the summer and I think that would be fun for her. Haley loves the pool and I think she gets more out of that than her therapy sessions at school anyway.

Haley has been happy and healthy the past few weeks now. She loves going outside and she smiles when she feels the gentle breeze through her hair. I think it makes her remember our time on the cruise ship and who wouldn’t want to remember that? I took her in for a height and weight check recently and she was 36 lbs and 36 inches. She’s come a long way in the past year. I remember this time last year (before the feeding tube surgery) she only weighed in at about 19 lbs and was still able to wear infant sizes. We have to shop in the big girls sections now!

That’s all for now! Hope everyone has a nice and safe Memorial Day weekend. We’ll update when we can!

Until next time...

Thursday, May 12, 2005 2:20 PM CDT

Hello Everyone!

An update that is long over due.
Our trip was so amazing!!!

Thank you so much to Soukup Construction- especially Marietta and Jim Soukup and to all of the people with Make-a-Wish. Our week aboard the Disney Magic really was a dream come true. Haley had a fabulous time on the ship and we are now finding it difficult to adjust to not being waited on all the time. They really took good care of us on the ship. We hope that someday we will get to go back and do it all over again (especially Chris- he may have had more fun than Haley and I combined).

It’s been so long since we’ve updated this site and I know everyone has been looking for photos so hope to have some of those updated too.

We got back from our trip on April 16th and back to reality. Back to work and back to school. The week of April 25-29th I had to attend a budget conference in Chicago and Haley got to spend some quality time with her grandparents. Unfortunately, she decided to come down with some sort of illness that week so she was in and out of the doctor’s office quite a bit. I hated being in Chicago and getting phone calls that she’s sick and might have to go to the hospital. I don’t think I’m going to go anywhere for a really long time now. At least we were able to avoid a hospital stay this time and this week (3 antibiotics later!) she is finally getting back to herself. She missed two weeks of school and her first field trip but we are just glad she is feeling better. She was even able to go back to the pool this week which really made Haley happy. She knows as soon as we walk through the door at CCHS that she’s going to the pool and she starts smiling up a storm. It’s so fun to see that reaction from her!

We made the front page of the Madison Daily Leader. They did a really nice article on Haley and her wish trip. Now when we go to Madison we feel like celebrities!

Our other news is that we traded in our mini van and got a brand new shiny red Honda Element. I never in a million years thought I would own one of those but it just works out perfectly for Haley because of the way the doors open and she has a lot more room in the back seat than she did in the van. Her chair fits perfectly in the back and she even has her own little sunroof. If the weather would cooperate we just might get to try that out one day.

The school year is going to be over before we know it. We just found out that the school district has decided to go ahead and allow Haley to participate in the summer program. She’ll have to go to a different school with different teachers and therapists. Since its summer time they only do half time therapy sessions so she’ll get a whopping 15 minutes of PT and OT a week. I’m not very optimistic about the whole thing because I think Haley needs and deserves a more intensive therapy program but I guess we’ll give it a try. It’s either that or nothing. The summer school sessions go from 8:30-11:30am Tues-Thurs so that still does not solve our daycare problem. We have been in contact with the director of a fairly new organization in Sioux Falls called “Laney Bear Care” (www.laneybearcare.org). Tanya has been doing a lot of work for us trying to get Haley approved for some home nursing care and we really appreciate her help. This would by far be the best solution if we can get it so keep your fingers crossed for us.

Thanks for checking in on us!
Until next time...

Friday, April 15, 2005 7:34 AM CDT

Day #6
As I type this, Haley is sacked out in her chair next to me with her mouth hanging open so you know she's really sleeping. We just walked out of our restaurant of the evening and I'm wondering if I will ever be able to go home and get used to NOT having someone wait on me hand and foot. They have taken such good care of us here and the food never ends. In about an hour they will set up a dessert buffet with over 60 different desserts. I don't think I'm going to be able to eat anything else, but the servers said it is worthwhile to just come and take photos. We might have to do that.
When we pulled out of Cozumel last night we were having a pirate celebration. That was a blast! Some families went all out and dressed like pirates and for those of us that didn't pack our pirate gear, we were given bandanas to put on our heads at dinner. Haley and I went up to the top deck to watch the fireworks and the dancing and we only looked at the buffet line because, again, we were stuffed from dinner. Chris wanted to get to the theater to catch the last movie of the night and I'm not sure what time he got back to our stateroom but it was late. Today was a day at sea and the weather was a little cool so we mainly stayed indoors. Haley got to go back to the kids club for a little while which had kids running all over the place so she was in heaven. Chris and I went to the arcade where I finally beat him at air hockey for once. Tomorrow morning we will arrive at Castaway Cay, Disney's private island. Make a Wish delivered an envelope to our room this morning with coupons for free rentals of bikes and snorkel gear so if there is anything we want to do on the island tomorrow we will be set. Tomorrow night we have a special invitation to meet with the captain of the ship so I'm sure there will be more photo ops there. But we did bump into the captain this evening too and Chris thought it was pretty cool that he got to chat with him for a bit. Haley and I were too busy getting our photo with Minnie Mouse at that time.
I can't believe tomorrow is our last day! Think they'll take a few stow aways?

***Make sure to check out the other updates from the previous days by reading the past journal entries.

Wednesday, April 13, 2005 8:23 PM CDT

Day #5
Hello again!

Last night we watched a hilarious show- "Hercules the 'Muse-ical'" and that was a lot of fun. After the show dinner at Animators Palate which is the restaurant that changes color as you dine. Last night the dinner theme was "It's a Small World" so the menu featured items from different countries. Chris stuck with good old US beef but I was adventurous and went for the chicken from India. Chris did enjoy lobster bisque and I had an English soup- a chilled cucumber and mint soup which was delicious. The best part of cruising is that you can try so many foods and if you don't like it they will take it away and bring you something else. Maybe that's why our server, German (pronounced "Herman", he's from Peru) brought us not one, not 2 but THREE plates of escargot one night. Chris tried them and said he liked them but I politely passed on the snails. Every night we dine with another family of three- Jason, Laurie and Allyson. Jason is in the Navy and stationed in Virginia and this is their first Disney Cruise. The first night we also had another family at our table but thankfully they moved to the earlier dinner seating. Their little boy was EXTREMELY hyperactive and about 5 minutes after we had met them, I was ready for them to walk the plank. We see them around the ship every now and then, and we try to run the other way.
This morning we arrived in Cozumel. We still can't get over how blue the water is here. When we docked today you can see straight down to the bottom of the sea when you look down from our verandah. We were 7th of 9 cruise ships to arrive at this port today so lucky for us we got to dock right at the pier because some of the other ships had to run tender boats back and forth like we did yesterday at Grand Cayman. We walked about 200 yards from the pier to the shopping area in Cozumel. As we entered the shopping district we noticed there were a lot of Mexican security guards with M-16s...still not sure if that was normal or not? There must be some sort of training facility right next to the port because we saw a lot of young men in different types of uniforms, dogs locked up and military vehicles and boats. It was a little strange! We bought Haley a hammock at one of the Mexican shops and we are still trying to figure out how that is going to go in our suitcase but we'll get it home somehow. After a little shopping we decided to head back to the air conditioned ship. Haley went to the kids club to see her friends and Chris and I went up to the pool area and played air hockey in the arcade. When we went back down to pick up Haley, she was wearing a Peter Pan hat and was sprinkled in pixie dust so she must've had a good time. The counselor said Peter Pan had paid them a visit.
Now we're just hanging out waiting to go to dinner. Tonight we eat at Parrot Cay- a tropical themed restaurant. It's also "Pirates IN the Caribbean" night on our ship. There are a LOT of pirates running around here. We have been instructed that whatever we do we are NOT to invite Captain Hook to the big Pirate party tonight. I have a feeling he may crash the party though...we'll see what happens.
Tomorrow we'll be at sea all day which means the ship will be a little more crowded. Not sure what we've got planned yet but Chris says he is going to get up early and do video docudrama so everyone can see what the ship looks like. Can't wait to see that!
Start saving your pennies. We're going to have to do this again. Now that we've seen the other ships in port, we think Disney is the way to go. The other ships look a little run down but our ship is being worked on or painted all the time. They even had the life boats out today. It's nice to know they check those out from time to time.
We'd better start heading to our restaurant. I'm sure we will have lots to tell tomorrow because there are a lot of pirate activities planned for tonight. Maybe even fireworks!
Until then...

Tuesday, April 12, 2005 5:14 PM CDT

Hello from the British West Indies!!
Day #4

It's HOT here! We got off the ship today and toured the tourist traps of Cayman. Was a little too warm for Miss Haley so we went back to the air conditioned ship. Haley went to the kids club- they are watching "The Incredibles" at the theater right now so Mom and Dad went to the pool, played in the arcade and played a little ping pong. Most of the other cruisers are still on the island so it's nice and quiet and almost feels like we have the place to ourselves at times. Tonight we will head for Cozumel. We had a very nice dinner last night and hopefully some nice photos from that. Haley got her picture taken with the captain himself and today we got an invitation to meet with him Fri night so we will go to that as well. It was nice to see everyone get dressed up and the show last night was really good. Tonight the show is "Hercules" and it's a musical so if Haley isn't too worn out from her adventures in the kids club she will enjoy that.
We'll try to update again when we can.
Bye for now!

Amy, Chris and Haley

***Make sure to check out the other updates from the previous days by reading the past journal entries.

Monday, April 11, 2005 3:24 PM CDT

Greetings from the Gulf...
Make a Wish gave us free unlimited internet access. I think Haley is bored sitting by the computer though so I will make this quick.
Last night we went to the gameshow, "Who Wants to Be a Mouseketeer?" which is the cruise's version of "Who Wants to be a Millionairre?"- well, we were actually selected play but I was really nervous and instead of a free 7 night cruise for 2 we walked away with $20 and a pin that you can only get if you play the game. Tonight is our formal night so we should get to take lots of photos. I was hoping we would be able to hook the digital camera into this computer and sent photos right away but they have everything locked up except for the keyboard so I don't think I'll be able to do it.
Haley is having a good time but still having some bad seizures at times. Yesterday we took her into the kids club for a little while and the counselors there agreed to take her on a trial basis. We left her there for about an hour while we ate lunch and she must have done really well because we never got paged to come back and get her and when we did pick her up, one of the counselors asked us to please bring her back again.
We're on our way to Grand Cayman- just at sea all day today and will be there by 7am. We're going by Cuba. The water is mesmerizing to watch. We were out on the deck for a while and Haley loved the breeze and didn't even seem to mind a little sea spray now and then.
We've done nothing but eat since we've been here. In fact, we may go eat something now because our dinner isn't until 8:30 but a lot to do in between now and then- get ready for formal night, take photos, go to the show and a captain's reception all before dinner.
Ok...Chris is giving me the look so we'd better get out of here. We'll try to email again soon.
Love,
Chris, Amy & Haley

Monday, April 4, 2005 7:34 AM CDT

Hello again...

Just wanted to bring everyone up to date on the progress of our trip. Yesterday, Teri, our wish coordinator dropped off the last few items we will need for our Make-a-Wish trip. Just think, a week from today Chris, Haley and I will be cruising with Mickey and the gang! We’re getting very excited!

Make-a-Wish has taken care of every detail of this trip for us. All of our transportation has been arranged to include limo service to and from the airport. You’ll have to get up pretty early if you want to see us off because we have been told to be ready to go at 4:50 am! Does the Sioux Falls airport even open that early??? We will fly from Sioux Falls to Chicago and then on to Orlando. When we arrive in Orlando we take a shuttle to Port Canaveral where we will board the Magic. We don’t have to worry about picking up our luggage at baggage claim or anything. They’ll be delivered right to our stateroom which is good- we’ve already got a lot of luggage and we haven’t finished packing yet! We should have plenty of photos to share when we return. Make-a-Wish has provided us with 8 rolls of film and they will even have it developed for us. We were also given a bag packed with some things for us to take with us- candy, magazines, tissues, band aids, a phone card and the all important sunblock. We’ve been told that all of the tips on the ship have been prepaid so we won’t have to worry about that and to top it all off they even provided us with spending money in case we find some souvenirs we can’t live without. Haley was given a special Disney ball cap to wear that will make her recognizable to Disney staff and characters as a “wish kid.” They would also like her to wear a name badge to identify her as a wish kid and even our luggage will be marked with Make-a-Wish tags so that maybe it will actually make it to the ship! All I know is we are sticking close to Haley because I have a feeling she is going to be treated like a rockstar! Why not, she deserves (and probably expects) a little preferential treatment.

I’m sure we’ll have lots to tell when we get back. Oh- we get back on April 16th, just before 5pm. That is, if we don’t decide to get off at one of those tropical islands never to return…

Just kidding, Grandmas & Grandpas!

Stay tuned for all the details after the trip.

Until next time...

Monday, March 28, 2005 3:09 PM CST

Greetings Everyone!!

For those of you that may not know, Haley is receiving the trip of a lifetime thanks to the Make-a-Wish organization. Yep - Chris, Haley and I will be sailing aboard the Disney Magic cruise ship for 7 nights in just a couple of weeks! Our journey will begin EARLY the morning of April 9th when Make-a-Wish sends our limo to transport us to the airport. By that afternoon we will board the Magic at Port Canaveral, FL. They have arranged for us to have a very nice stateroom on the ship with our own verandah. We will be cruising the Western Caribbean with stops at Key West, Cozumel, Grand Cayman and a day at Disney’s private island, Castaway Cay. We cannot wait! When Make-a-Wish asked us what Haley’s wish would be, Chris and I really tried to think about what the absolute best choice would be and we decided on this cruise for several reasons. For one, once we’re on the ship, we’re there. We can get off of the ship at the ports of call if we like, but if it’s too much of a hassle, we can stay on board and lounge by the pool if that’s what we choose to do. We thought that Haley would enjoy a Disney experience but dragging her through the theme parks would be too much for her...and us. Most of the Disney characters are on the ship too so she’ll still get to see them, plus there are shows and movies which I know she will love. If she’s having a rough day, we can always head back to our stateroom and rest. I think the best part of the trip will be sitting on our verandah, looking out at the ocean and watching Haley enjoy the fresh air and sunshine. I can already picture her with her shades on and the ocean breeze blowing through her hair. We’re also looking forward to taking her to the beach. She may not like the feel of sand on her toes but we’re going to give it a try! We also are going to get dressed up and dine in fancy restaurants. Haley and I can’t wait to see Chris in the new suit he got for the trip. We’re planning on taking lots and lots of pictures!

So that’s our big news! She’s still enjoying school and we’re trying to get her enrolled in a summer school program. Not because we’re mean parents but because we think it’s important for Haley to continue therapy during the summer months and school is where she receives therapy. Unfortunately, the school district doesn’t feel she needs to go to a summer program (I translate that to they don’t want to fund it) because they don’t feel like she has gained any skills that she would lose if she didn’t go to school for 3 months. It’s an ongoing struggle with them. For the first time Chris and I may be in a position where we don’t have anyone to keep an eye on Haley while we are at work. Even if she does go to school this summer, the program is in the morning hours so we will need someone to fill in a couple of afternoons during the week. I’ve been looking for a day care that would take a special needs kid with a g-tube but it’s not looking very good. Sioux Falls has VERY limited child care options for a special needs child. I’m sure we’ll figure something out eventually but who can think of that when there is packing to do!

Hope everyone had a very nice Easter! We had a very nice dinner with Aunt Amy, Grandpa and Grandma L and Aunt Darlene Saturday night and Sunday night we had Easter dinner with my family. Both nights Haley made out like a bandit with her Easter baskets and gifts and she looked beautiful in her pink Easter dress.

Stay tuned to hear all about our trip! We hope for smooth sailing, warm weather and as few seizures as possible!

Until next time...

Wednesday, February 2, 2005 1:49 PM CST

Hello Everyone!!

Since our last update, Haley has been busy! She turned three on the 20th of November and was off to school the following Monday. We weren't sure how Haley would handle the change but so far she has done exceptionally well. She goes to Hayward Elementary Mon-Thurs from 12:45 pm to 3:30 pm. I think she senses when it's time to go to school because she usually perks up when she's getting dressed to go. When I go to pick her up at the end of the day, it's not unusual for her to greet me with a silly little grin. The first couple of days of school I got to go with Haley just so her teachers could get to know us. I was glad to have a couple of days to observe. There are 5 other children in the class and for the most part, these kids seem "normal" and range in age from 3-5 years old. It amazes me that the kids truly seem to have accepted Haley despite her differences. When they come down the hallway in the afternoon to leave school for the day, Haley always has one of her classmates at her side, holding her hand. One little boy likes to be in charge of setting the brakes on the chair.

Knock on wood- Haley has been extremely healthy this year. This was the first time since 2000 that we did not spend Thanksgiving in the hospital! Exposing her to all the new germs at school was (and is) a concern but we try to take every precaution we can. She's had a flu shot and a pneumonia vaccination this year so hopefully that will help. The week before Christmas she came down with one of those lingering colds that have been going around. You could just tell she didn't feel well so we let her stay at home and rest (I think Haley would have preferred going to school but no sense in sending her when her immune system is already weak). We kept giving her nebulizer treatments at home to keep her lungs clear and lots of fluids through the g-tube. Even a minor illness like this cold would have probably landed her in the hospital for a few days before the g-tube was placed but now we can control her fluid intake a lot better than we could before. We had a few doctor's appointments this month. Checked in with the feeding clinic at Sioux Valley to see where Haley is on the weight/growth charts. She weighed in at 33 lbs at that visit so they are going to be reducing her caloric intake a little bit. She isn't overweight, but if she keeps gaining at the same rate she soon will be. We also saw a pediatric cardiologist that had seen Haley last year when she was in the hospital. He just seemed to take an interest in her condition and recommended seeing Haley annually just to make sure that her heart stays healthy. So far so good! We also had to go into CCHS for an orthotic and chair adjustment- the kid just keeps growing and growing! We saw Dr. Bunch (neurologist) last week because it seemed as though Haley’s seizures were becoming a little more intense and she seems to be having them more frequently than we have gotten used to. They checked her Felbatol levels and sure enough she was on the low end so we’re increasing that medication and will see if there is any change. If this doesn’t work, I’m not quite sure what alternative we have as it seems we are kind of at the end of the list of medications to try.

Haley continues to swim at CCHS on Tuesday evenings and is still enjoying that very much. Speaking of CCHS, we have our annual Mall Walk coming up in a couple of weeks are are now accepting donations. The great thing about this fundraiser is that we actually see where the money raised goes. Last year after the Mall Walk CCHS purchased many new toys that would be appropriate for Haley (ok- not just for Haley) to play with in the pool.

We got to welcome a new baby into our family- my cousin, Dru, gave birth to a BEAUTIFUL baby girl named Olivia Margaret on Jan 2nd! Guess who won the baby pool- Haley! From what I hear, she doesn’t do too badly when it comes to NFL picks, either. I think Haley’s got connections.

I’m sure there are things I’m leaving out but I guess that’s what happens when you go so long without an update! We’ll try to update more often and add some new photos. Thanks to everyone that has continued to keep Haley in their thoughts and prayers!

Until next time...

Tuesday, November 16, 2004 2:58 PM CST

Hello Everyone!!!

We've got less than a week to go before Haley turns the big 3! I can't believe the tiny baby we brought home from the hospital on Thanksgiving Day in 2001 is now a beautiful soon-to-be 3 year old little girl! We are so blessed to have Haley with us today. Remember Haley's 6 month half birthday party? We had that party because back then we weren't so sure she'd ever celebrate a birthday. And now she's turning THREE!
I am thankful that we've had some terrific therapists that have come in and taken the time to really get to know Haley (and us!) and work with her even though Haley may not show progress like some other kids. Soon we will have a whole new group of therapists and teachers that will work with Haley when she starts school and I hope it doesn't take them long to realize that everything is done on "Haley's time."
I am thankful for the wonderful aquatics program that is available at CCHS. I know that they were nervous about having a child with seizures in the water at first and that this program may not be exactly geared towards children like Haley but I hope they know that just getting her in the water and giving her a chance to stretch out and move her muscles benefits her almost as much as if she could put together their puzzles or dive for rings and other toys.
I am thankful for the people that we've met that know what it's like to have a child with special needs because they have one too. We learn from each other. I am inspired by the love they give to their children. A lot of children with diagnoses similar to Haley have only lived short lives. Each life, no matter how short, has taught us a little more and the families of these amazing kids continue to prepare us for what life might be like when Haley is no longer with us.
I am thankful for my job. So many people assume that I stay at home with Haley and as much as I'd love to be able to do that it just isn't possible. I can't think of any other place I could work that would allow me the flexibility I need to take care of my daughter, to run to doctor's appointments (in and out of state), pick up prescriptions, medical equipment, meet with therapists, nurses, dieticians, and everyone else that is involved in Haley's care. There have been times when someone else has had to work a little harder or learn to do something that they don't normally do very quickly so that I could be with Haley.
I am thankful for our friends. Noelle has been a faithful listener and always makes me laugh. She has that "sixth sense" and can track us down at any hospital. Haley just recently had her first "babysitter." Holly was kind enough to keep an eye on her for us one Saturday! She came home with beautiful fingernails and toenails! My "bowling girls" give me one night out a week- and sometimes we go on the road too! Pastor Marilyn and the church in Madison have been extremely supportive and we always feel very welcome when we visit. We have some very special aunts and uncles that shower Haley with gifts and love. Thank you to everyone for keeping Haley close to your heart and in your prayers.
To our family- we could not do this without you. My mom and dad stepped in right away and insisted on becoming Haley's daycare and that was before we knew anything about seizures. I wonder if they knew what they were getting into! Not only have they had to learn how to give various medications, nebulizer treatments, learn how to deal with a feeding tube, etc, they opened their home to the therapists. You would think that after 3 years of watching Haley day after day, they might get tired of it. But every morning my mom is just as happy to see Haley as she was the day before. And watch out if we go the weekend without seeing them! Uncle Mike kind of got thrown into babysitter duty but there is no one more perfect for the job. He treats Haley like she is his own. Boy... if he gets married and has children of his own one day his wife will be lucky- he's all trained! The aunts (Sarah, Stacie and Amy) watch Haley from time to time too but I think their main role is spoiling Haley more than anything else. They keep Haley dressed in all of the latest fashions and make sure there are plenty of toys and books around. Auntie Amy was the one that started this fabulous website! Haley's other grandparents may not get to spend as much time with her but that doesn't mean they are any less involved in her care. They have given up many weekends to either come stay with Haley at our house or keep Haley with them. They are always willing to keep Haley when we need a break. They love to watch Haley swim and are always at the ready with the camera. Haley just adores her daddy. I'm so glad that they are able to spend time together. Chris may try to portray himself as a tough guy but little Haley has him wrapped around her finger. Don't let him fool you!
Most of all, I am thankful for little Miss Haley Quinn. They always say a baby will change your life, but I think with Haley this is even more true. She has changed me for the better. What was important to me 3 or 4 years ago isn't nearly as important now. We all know that Haley expresses herself through her eyes more than anything else and when I look into those eyes, I know that giving up isn't an option. Something keeps her going, so I must go on too. She needs me and I need her. I could go on but a lot of this I like to keep just between Haley and I. She's a great listener!
Haley's birthday is a day not only to celebrate her life but also the lives of those she has touched. She's a special girl and I'm so proud to be her mommy. Thank you for checking in on us. If you have time, wish Haley a happy day by signing her guestbook.

Monday, October 25, 2004 11:50 AM CDT

Greetings Everyone!
It has been awhile since the last update, but Haley continues to grow like a weed and is having some great days! Since her g-tube surgery back in June she has gained about 9 pounds! Haley generally likes to sleep in late every morning (who doesn't?) and will usually stay awake, alert and happy all afternoon and evening. She doesn't like to go to bed too early, but Mom and Dad put her in her crib, turn out the lights, turn on Baby Tad and her radio and usually she's asleep by the third or fourth time we peek in on her.

Haley is still swimming at CCHS on Tuesday evenings at 5pm. She has a new teacher and all new kids to swim with her. The Tuesday group seems to be a little more rambunctious compared to the kids she swam with on Wednesdays but Haley seems to enjoy the splashing and noises they make. It's funny to watch the other kids interact with Haley too. They all like to swim over to her to say hi and maybe hold her hand or pat her arm. Even the kids that are maybe a bit of a challenge to their teachers will settle down and quietly and calmly talk to Haley.

As you may know, Haley will be turning three very soon! I can hardly believe it myself until I look at her and see she really is not a baby anymore. If you haven't seen Haley in a while you will be amazed at how much she has grown up! (Yes, Auntie Amy will be posting some new pictures). Right now we are preparing for Haley's graduation from the Birth to Three program that provides all of her therapies. The next step is the early childhood program at Hayward Elementary School. We met with her teacher and some of the new therapists that will work with her at school on Friday and got to take her into her classroom for a tour. There will be about 8 other children in her class all with various special needs, however, I don't think any of those children are as developmentally delayed as Haley. On an evaluation earlier this month therapist indicated Haley was functioning like a 3 month old. She moves her head quite a bit now and enjoys many of her toys...especially ELMO. We've met with the school nurse a couple of times to discuss Haley's seizures and other health related needs. I'm confident that Haley is going to be well taken care of at school and she's going to love all of the new activities and interaction with her teachers and other kids. Haley's first day of school will be November 22nd.

An online support group we belong to is working on a new website that will hopefully help more families find information on Ohtahara Syndrome because there is so little information out there. The website is: www.ohtaharasyndrome.com It's still in the beginning stages but when it's complete it will be so nice to have all of the information in one place. I have already given the address to a few people from Haley's new school so they can read up on the syndrome and get a good idea as to what we've been through with Haley.

Thanks everyone for your thoughts and prayers when my grandmother passed away last month. Haley got to spend some quality time with Grandpa M and Grandpa and Grandma L while the rest of the family traveled back to Maryland for the funeral. Haley got to meet her great grandmother once back in August 2002. GGma loved Haley very much. That was very evident when we went into Gram's apartment and saw photos of Haley everywhere. We joke that we are going to miss Gram a lot but since my mom is a little more like her mom everyday we will always have a little reminder.

Hope everyone has a happy and safe Halloween! I feel bad because I have no ideas for a costume for Haley yet this year. Last year we went all out and made her the Raggedy Ann costume and this year looks like it we might be throwing something together at the last minute. Whatever she is, I'm sure it will be cute and we will post photos here.

Wednesday, August 18, 2004 11:14 AM CDT

Hello Everyone:

Haley has been a busy girl lately! Now that we don't have to spend so much time concentrating on her feedings, we are on the go. The first weekend in August, Grandma and Grandpa L. came down to stay with her while Dad went to the Brickyard 400 in Indianapolis and I went to my cousin's wedding in Wisconsin. Sounds like she was really showing off for Grandma and Grandpa while we were gone! I'm so glad she behaved herself! Of course she was rewarded with lots of presents for being such a good girl. Dad brought her back a couple of racing shirts and she also got a couple of new Green Bay Packers outfits from Wisconsin and Aunt Amy picked up the newest talking Elmo toy to add to her collection. We can't NOT bring her back something when we go on a trip can we? Even Aunt Sarah's boyfriend, Steve, brought Haley back a t-shirt from his recent trip to Denver. I hear he didn't bring Aunt Sarah anything (oops!) but he remembered Haley! Thanks, Steve!

Last weekend was a busy one too! Friday night we took Haley to the fair since the weather was nice and cool. She LOVED it! She loved all of the sights and sounds and especially all of the animals she got to see there. Everyone was really nice about bringing the animals right up to Haley so she could see them or even touch them. In fact, she had so much fun Friday night, she got to go again Saturday night with Grandma and Grandpa M. On Sunday we thought we'd try to take her to her very first movie. We went to see Shrek 2. As soon as the lights went down and the movie started, Haley's eyes got really big and looked like she was really enjoying herself. I think what she liked most about the movies was when all of the other kids in the theater would laugh. That really got her attention.

Last night we visited Haley's new friend, Alec at the hospital. He's starting the ketogenic diet to try and help his seizures and we wish him the best of luck! It was nice visiting with Alec and his mom, dad and brother. They've been through many of the same things we've been through. At our last appointment with Dr. Bunch she suggested that the ketogenic diet might now be an option for Haley too now that she has her feeding tube and we can control everything that goes into her. We'll think about it. We're in no rush to go back into the hospital.

Haley is gaining weight like crazy! It's amazing to look at photos of her before surgery and look at her now and see how much she's filled out. I think we're definitely going to be cutting down on her calories soon otherwise she's going to be overweight. Haley got to spend time back in the pool at CCHS when she got her MicKey button. I think she really missed that! Right now they're on a summer break but she'll be back in the water when school starts in a couple of weeks. Speaking of school, when Haley turns 3 in November she will "graduate" from the Birth to Three program that brings the therapists to her and she'll actually have to start going to school herself. This fall we'll begin that transition. I'm a little anxious about her going to school by herself since she's never been around anyone but family since she was born but at the same time I think giving her this independence will be good for her and she's going to love being around the other kids.

Until next time...

Tuesday, July 20, 2004 5:10 PM CDT

Hello Everyone:

Haley ended up being in the hospital for 6 days when she had her g-tube surgery. 5 days in the Pediatric ICU and 1 day in a regular room on the pediatric floor. We really want to thank everyone for the cards, gifts and especially the visits while she was in the hospital. It really helped to know we had so many people thinking about us. Haley has spent the last few weeks recuperating nicely. We spent a quiet 4th of July weekend at home just glad to be sleeping in our own beds again! Once we were back at home, we were able to get back into our regular routine. Life with the g-tube has been great so far! Haley has set meal times every 4 hours during the day and then at night she is fed continuously through a slow drip pump. Meal times are over in 10-15 minutes rather than 2-3 hours and whether she's awake or asleep we know she's getting the medication and nutrition that she needs. We must be doing something right-she's already gained 4 pounds since her surgery. Next thing you know, they will want to put her on a diet! Overall, Haley seems happier and is sleeping very well through the night and staying awake (for the most part!) during the day. We've never seen her smile more than she has the past few weeks!

Today Haley went back in to see the surgeon, Dr. Bailey, to have her long feeding tube replaced with a much smaller MicKey button. She was a real trooper through that procedure and didn't cry or fuss at all. After the MicKey button was in place we had to go down for an x-ray to make sure everything was in the right place and then one of the nurses taught me how to use and care for everything. The MicKey button will need to be changed every 6 months or so and we can change it ourselves at home when needed. I'm a little nervous about changing it the first time but we'll tackle that when the day comes. We're just relieved that we don't have to deal with that long tube anymore. It wasn't fun worrying about accidentally pulling that out or taping it to her body all the time. Haley's new nickname: "Our little beach ball."

Tomorrow we meet with Dr. Neidich (gastroenterologist) and the rest of the feeding support team and Sioux Valley Children's. They'll be following Haley closely to make sure she's getting the right amount to eat. Like I said before- we'll have to be careful that she doesn't gain too much too fast. For now, she's doing great and is right where she should be for her height and weight. If you haven't seen her in a while, you'll be amazed at how much she's grown. She's still as cute as ever too!

Look for new pictures in the next couple of days! Thanks again for all of your support.

Until next time...

Monday, June 28, 2004 5:31 PM CDT

Hello Everyone:
Just a quick update to fill in some gaps. Amy has been trying to post some updates in the guest book but will try to piece together some from the past 5 days.
Wednesday, June 23rd Haley was admitted to SVH to have her feeding tube placed. Haley went from being home sleeping in her bed to the recovery room. For Haley, I am sure it was hard for her to understand what had happened while she was sleeping. Surgery went well but her first night was rough. Haley had seizures for nearly 6 straight hours. Her little heart was racing at over 200 beats per minute. We are sure she was scared and in pain and just wanted to be held. Seizure medication finally kicked in and gave way to some peaceful sleep for both Haley and Mom and Dad.

Each day shows some improvement. She isn't eating by mouth yet since doctors don't want to stretch her stomach too fast. Food and medication is being tried in the feeding tube with some success. She has been on some Pedia-Lite and Pedia-Sure. One drug is difficult to get down in the tube so Coke and cranberry juice help to dissolve it and keep the tube clear. We are hoping that she gets moved out of PICU today or tomorrow and then home.

Some post-surgery pictures have been posted of the Mighty Quinn.

Until next time...

Tuesday, June 15, 2004 9:42 AM CDT

Hello Everyone:

There has been a flurry of activity lately as Amy and Chris are in the process of determining if a feeding tube is the best thing for Haley. She isn't gaining much weight and tends to be sleepy when she needs to eat and take medicine. On the 9th they spent the day at SVH doing tests and meeting with the surgeon that would put in the feeding tube. It is possible that Haley sometimes aspirates into her lungs when she eats/drinks. More tests this week. Today, the 15th Haley will be admitted to Sioux Valley on for a pH probe to measure reflux. The probe must remain in for 24 hours. She should be released on Wednesday morning. From there we will go down to Radiology for a video swallow study. After that they meet with the surgeon and the gastroenterologist and probably set up a date for surgery. Insertion of the tube will earn Haley a 5-day stay in the hospital. We will keep everyone posted on her progress and the date for surgery.

Until next time...

Wednesday, April 21, 2004 3:17 PM CDT

Hello Everyone!

The past couple of months have been quiet and we don't mind that at all. We've been kind of adjusting Haley's seizure medications every now and then. Some days she is really good and other days are just awful for her. We're trying to do everything we can to make sure the good days outnumber the bad days and it finally seems like we're getting somewhere. The new drug, Peganone, seems to have decreased her seizures somewhat. The only bad thing about it is that Haley has to take this medicine 4 times a day because it goes through her system so quickly. Sometimes it can be challenging to get Haley to eat 4 times a day and if she sleeps through a dose, we can tell immediately. Luckily, since she's been off of the Topamax her appetite has improved and she is pretty good about eating. Last week we had a minor setback. Haley's seizures went through the roof and she had a fever. Not knowing what was wrong with her I took her into the pediatrician. Dr. Nelson discovered Haley had an ear infection. I was relieved because an ear infection is "easy." They gave her a shot of antibiotics to give her a jump-start on treating the infection and then we gave here oral antibiotics the rest of the week. We could tell she was feeling better right away because her fever went away, her seizures went down and she just seemed much happier. A couple of days later, Haley had me worried because she didn't have a wet diaper for a whole day. Immediately I thought she was dehydrated and we would end up in the hospital for IV fluids. She seemed like she was feeling fine so I was a little confused. We went back to Dr. Nelson and Haley's lab work showed that she was fine- not at all dehydrated. Dr. Nelson mentioned that quite often kids like Haley will develop a condition called a neurogenic bladder, which means that they are unable to empty the bladder because of their neurological condition. They were easily able to empty Haley's bladder in the office with a catheter (although Haley didn't like that very much at all!) This might be something we'll have to do for her at home if this becomes a habit. Dr. Nelson would like Haley to see a pediatric urologist for a complete evaluation. Of course, there are no pediatric urologists in Sioux Falls so we may have to travel for that as well. For now, we're just going to keep an eye on her and see if this reoccurs and how often before we put her through a bunch of tests. If it does become more frequent, it will definitely have to be treated so that things don't back up and cause damage to her kidneys.

Haley got her AFO's (ankle-foot orthotics) last month and has been wearing them daily. They are white with pink and purple butterflies on them. If we had to get them, we had to get stylish ones! Her therapists were able to tell a difference after just a couple of weeks. Her feet are more relaxed and when she has the AFO's on, her toes lay nice and flat and her ankles are straight. We'll have to post some pictures of them. They're actually very cute.

Haley also made another trip to the dentist a couple weeks ago. She went in all by herself while I stayed in the waiting room with Grandma Deb. What a trooper! Purple bubblegum toothpaste is supposed to make brushing more enjoyable but she isn't too thrilled about the concept yet.

Until next time...

Wednesday, March 17, 2004 9:47 AM CST

FINALLY...NEW PICTURES!! ENJOY!!

HELLO EVERYONE!!!

Sorry it has been such a long time since our last update. We all have been busy so there is a lot to tell since January 30th.

Haley continues to swim at CCHS on a weekly basis, weather permitting. If it's too cold outside, we don't risk taking her out. Back in early February, we participated in the CCHS Mallwalk with Haley's swimming buddies and her teacher got an award for having the most participants from one group.

Toward the end of February, we traveled back to see Dr. Ritter in St Paul. I think he was surprised that Haley wasn't responding (the seizures were unchanged) to the new medication he had prescribed on her initial visit with him. We are in the process of weaning her from Topamax, which she’s been taking since June 2002, and starting a drug called Peganone. Peganone is an old drug, but rarely used and most doctors have never even heard of it. The side effects aren't as harsh as some other drugs so we decided to give it a try. Haley isn't up to a full dose yet but so far I would say there hasn't been much of a change on this one either. I'm glad to see her stop taking the Topamax though. I'm hoping that stopping this drug will give her appetite a jumpstart.

Haley got baptized on Feb 29th at the church in Madison. She looked beautiful in the dress that Grandma Eden made for her. Pastor Marilyn did a wonderful job and Grandma Deb made a speech about Haley since the church has chosen Haley as the mission for March. I don't think there was a dry eye in the house after that. We had a nice lunch at the Hillside (thanks to Grandma & Grandpa!) afterwards and Haley got so many nice gifts. It was a really special day for us.

A couple of weeks ago Haley had her first visit with Dr. Julie Johnson at CCHS. Dr. Johnson is a rehabilitation specialist and a WONDERFUL doctor. She seemed to completely understand Haley from the moment we walked into office. After a quick exam, she decided that Haley would benefit from braces on her ankles to keep her feet from rolling outward. Dr. Johnson managed to get us directly into a casting room to have molds of Haley's lower legs made so they can make the braces. We even got to choose from numerous designs and patterns- Haley's way too stylish of a kid to have just plain white braces on her legs. We went with pink and purple butterflies although the leopard print was tempting. Haley didn't quite know what to think with those casts on her legs. Her eyes were going a mile a minute and she kept turning her head from side to side. Lucky for her, it only took a few minutes for the casts to dry and then get cut off. Dr. Johnson also had someone adjust Haley's Kid Kart for her while we were there since she's grown so much since our last adjustment. She sits up so nice and tall now! We might look into getting Haley a more supportive headrest for her chair. The one she has now works but Dr. Johnson thought we might be able to do a little better. We're also going to order a new piece of equipment for Haley- a bath chair. I was so impressed! What could have been 2 or 3 different appointments was accomplished all in one day. We like CCHS so much!

We're looking forward to nicer weather- though you wouldn't know it looking out the window today with all this snow coming down. This week Haley's been fighting some type of illness- fever and lots of seizures because of it. Hopefully she's getting over that and we can think about trips to the park and the zoo instead of trips to the doctor.

Until next time...

Monday, March 15, 2004 1:17 PM CST

HELLO EVERYONE!!!

Sorry it has been such a long time since our last update. We all have been busy so there is a lot to tell since January 30th.

Haley continues to swim at CCHS on a weekly basis, weather permitting. If it's too cold outside, we don't risk taking her out. Back in early February, we participated in the CCHS Mallwalk with Haley's swimming buddies and her teacher got an award for having the most participants from one group.

Toward the end of February, we traveled back to see Dr. Ritter in St Paul. I think he was surprised that Haley wasn't responding (the seizures were unchanged) to the new medication he had prescribed on her initial visit with him. We are in the process of weaning her from Topamax, which she’s been taking since June 2002, and starting a drug called Peganone. Peganone is an old drug, but rarely used and most doctors have never even heard of it. The side effects aren't as harsh as some other drugs so we decided to give it a try. Haley isn't up to a full dose yet but so far I would say there hasn't been much of a change on this one either. I'm glad to see her stop taking the Topamax though. I'm hoping that stopping this drug will give her appetite a jumpstart.

Haley got baptized on Feb 29th at the church in Madison. She looked beautiful in the dress that Grandma Eden made for her. Pastor Marilyn did a wonderful job and Grandma Deb made a speech about Haley since the church has chosen Haley as the mission for March. I don't think there was a dry eye in the house after that. We had a nice lunch at the Hillside (thanks to Grandma & Grandpa!) afterwards and Haley got so many nice gifts. It was a really special day for us.

A couple of weeks ago Haley had her first visit with Dr. Julie Johnson at CCHS. Dr. Johnson is a rehabilitation specialist and a WONDERFUL doctor. She seemed to completely understand Haley from the moment we walked into office. After a quick exam, she decided that Haley would benefit from braces on her ankles to keep her feet from rolling outward. Dr. Johnson managed to get us directly into a casting room to have molds of Haley's lower legs made so they can make the braces. We even got to choose from numerous designs and patterns- Haley's way too stylish of a kid to have just plain white braces on her legs. We went with pink and purple butterflies although the leopard print was tempting. Haley didn't quite know what to think with those casts on her legs. Her eyes were going a mile a minute and she kept turning her head from side to side. Lucky for her, it only took a few minutes for the casts to dry and then get cut off. Dr. Johnson also had someone adjust Haley's Kid Kart for her while we were there since she's grown so much since our last adjustment. She sits up so nice and tall now! We might look into getting Haley a more supportive headrest for her chair. The one she has now works but Dr. Johnson thought we might be able to do a little better. We're also going to order a new piece of equipment for Haley- a bath chair. I was so impressed! What could have been 2 or 3 different appointments was accomplished all in one day. We like CCHS so much!

We're looking forward to nicer weather- though you wouldn't know it looking out the window today with all this snow coming down. This week Haley's been fighting some type of illness- fever and lots of seizures because of it. Hopefully she's getting over that and we can think about trips to the park and the zoo instead of trips to the doctor.

Until next time...

Friday, January 30, 2004 3:40 PM CST

Hello Everyone:
Brrrrrr...
Haley is being a little trooper through all this cold weather. She's wearing her big snowsuit these days to keep warm. We decided to skip swimming this week. We just thought it would be too cold and no sense in risking a cold. We had a Dr. appointment on Wednesday and another appointment at a feeding clinic. We just wanted to check and make sure Haley was on track. She's not. Since our last visit with them in August, Haley has managed to fall off the growth chart again. She weighed 22 lbs and was 33 inches long- only a few ounces more gained since August. We are back to recording her daily calorie intake and back to monthly weigh ins for now.

We will try and get some new pictures up over the next couple of days. It is time to retire the Packer pictures and make way for the Panthers. Go Cats!

Haley's cousin Tyler is currently in the hospital with a severe case of pneumonia. Dan and Sara would appreciate your thoughts and prayers for Tyler as well.

Until next time...

Sunday, January 4, 2004 8:55 PM CST

Hello Everyone:

We have made it through another holiday season and hope that you all had a blessed Christmas and wish you all the best during the New Year.

No news remains good news. Haley has been healthy the past month and has been able to fight off whatever germs may be floating around, (even though Mommy hasn't). She continues to eat well and has managed to put back on some of the weight she lost during her last stay in the hospital. More teeth are fighting their way in and soon she will have a mouth full.

We lost great-grandpa Mette in late December after a brief battle with cancer. This allowed distant family an opportunity to see and meet Haley for the first time. Though it was a difficult time, Haley brought smiles to the many people she met and even shared some of her own smiles with all of us. As you all think of Haley, please also pray for the family of Jakob Beier who passed away on December 27th. His site can be viewed at www.caringbridge.com/sd/jakobbeier.

Until next time...

Tuesday, December 9, 2003 4:14 PM CST

Hello Everyone:
We hope this finds everyone doing well and enjoying the preparations for the holidays. Hard to believe it is already that time of year!

Our little trooper made it home from the hospital nearly a week after getting admitted. It wasn't exactly how Amy had planned to spend some vacation time. Haley was able to come home late Thursday evening. Getting back into a regular schedule was a little tough as she was pretty content on just sleeping. A little bit of a cough remains. She is getting nebulizer treatments and after a couple of days she is more like her old self. Haley was all smiles for Grandma Lingbeck on Sunday. She must have saved up all those smiles for just when we needed to see them. She was even feeling good enough to go see great-Gpa Mette in the hospital. She made the rounds and was showing off cute new slippers to all the other visitors and patients. What a crowd pleaser!!

We plan to get back into a schedule this week and head off to Grandma Eden's, have therapy and maybe even go for a swim by mid-week.

Until next time...

Monday, December 1, 2003 3:06 PM CST

Hello All:
We hope that everyone had an enjoyable Turkey Day and that they were able to spend quality time with their family and friends.

Haley’s birthday was less formal this year. Instead of a big blow out we spread out the presents over a couple of days. Look for new pictures later today. She has lost a couple of pounds the last few weeks but is getting more teeth.

Haley has had a rough couple of days. Thanksgiving does not seem to be her favorite holiday. Saturday night Chris and Amy took Haley to the emergency room. She had spent the majority of the day crying and having constant seizures, which made it nearly impossible to get her to eat or drink. After a chest X-ray and a medication to break the constant seizures, she was diagnosed with Pneumonia. She wasn't dehydrated and electrolytes looked good so they were able to get a prescription for antibiotics and take her home early Sunday morning. Sunday saw little improvement. After an appointment with the pediatrician it was decided to admit her back into the hospital. Currently she is on an IV and is receiving breathing treatments and a nebulizer every 4 hours to break up the congestion. Since Haley has a hard time coughing it will be crucial to keep it from settling in her lungs. She has tested negative for RSV but is still running a fever. They are in room #3602 at McKennan. Stay tuned for more updates.

Until next time...

Thursday, November 20, 2003 5:27 PM CST

Happy 2nd Birthday Haley Q!!!

Saturday, November 15, 2003 10:25 AM CST

Hello Everyone:

Time for a new update and some new pictures. Haley has been doing well the past month. She has been keeping up with her therapy, her weekly swimming sessions and has a couple of more teeth trying to push through.

On Wednesday, November 12th the family headed to St. Paul for an appointment at the St. Paul Epileptic Center for Children. Haley spent Thursday going through the normal battery of tests. EEG results were the same as they have been in previous tests. Doctors did decide to make some changes to her drug therapy and removed her from Clonazapan. She will be monitored on the new drugs and plan to return to St. Paul in 3 months for a check up.

After the doctor it was time for some fun so they headed to the Mall of America. Friday Haley was a bit under the weather with a temp again so the relaxation part of the trip was cut short.

Count down to birthday #2...5 days.

Until next time...

Monday, October 13, 2003 7:15 PM CDT

Hello Everyone:
Just a quick update and some new pictures. Haley pulled some of her tricks again this weekend. She thought she needed a vacation and spent Sunday in the hospital. Saturday night Amy and Chris woke up to a screaming HQ. She was burning up with a fever of 104 degrees. An IV was started at the emergency room and some Tylenol helped to reduce the fever so she could sleep. After a good sleep and some food she was released late Sunday night. Doctors attribute the high fever to some sort of viral infection.

She is looking forward to Halloween and Grandma Eden has been working hard on her costume. No more dressing up as a pumpkin...she is going to be Raggedy Ann. Look for pictures in the next few weeks.

Count down to birthday #2...37 days.

Until next time...

Tuesday, September 23, 2003 1:06 PM CDT

Hello!!

Hope everyone is doing well. Our Haley is growing up and starting to look like such a big girl. She spends a 1/2-hour swimming every Wednesday. The pool is heated to about 100 degrees and makes for a relaxing therapy session. She is still a pretty sleepy girl sometimes and has slept through most of her pool time but a little cold water gets her attention. To help her stand and put weight on her joints she wears weights on her ankles and has a floatation device around her neck. Check out the new pictures of our bathing beauty.

Since the last update Haley has managed to stay out of the hospital, which is very good. She has 7 teeth now and does some biting but isn't very good at chewing food. She is maintaining her weight around a slim 22 pounds and is 32" long.

Haley likes to travel and has been making the rounds visiting. She attended a wedding a couple of weeks ago, visited the folks at Aunt Amy's work and has her schedule set for the fall bowling. In November everyone will be making a trip to St. Paul to the epilepsy hospital. We remain hopeful that there are still some options for her.

Amy and Chris will be seeing a geneticist later this week to determine the likelihood of having children like Haley in the future.

For now we continue to enjoy each day with Haley and look forward to her 2nd birthday (November 20th).

Until next time...

Wednesday, July 30, 2003 11:43 AM CDT

Hello Everyone...
Just a brief update on the Mighty Quinn. She has been doing pretty well. Last week she spent a couple of days in the hospital again. She tends to get stubborn and doesn't want to eat, thus getting dehydrated. A day or two in the hospital with an IV gets her back on track. Unfortunately this time around she was the human pincushion and was stuck nearly 20 times in an effort to get the IV started. What a trooper!!

Haley has started to attend some swimming sessions. She loves the water and it is relaxing for her. She seems to thoroughly enjoy herself.

She spent the last weekend at Grandma and Grandpa Lingbeck's while Amy and Chris attended Chris's 15th school reunion. She helped Grandma do some baking, even smacking up the good sweet stuff.

Her best buddy Holly gave her a new look with nail polish on her fingers and toes. We have determined that "pink is her signature color".

Until next time...

Tuesday, July 8, 2003 9:21 PM CDT

Hello Everyone!!

Yes, it has been quite some time since our last update. Time seems to fly by and before we know it summer will be over. Haley has had a pretty exciting last couple of months. She has made 2 visits to the Mayo Clinic, both of which were fairly uneventful. During the first visit we learned that the muscle biopsy revealed that Haley definitely has some type of mitochondrial disorder. Unfortunately, they do not have tests for everything to determine a specific cause, treatment or even a real name for the disease. Her last 2 EEGs showed a patter of hypsarrhythmia (a type of seizure), which is a new development, and unfortunately not a good sign. We are continuing with the same drug regimen while we determine how we can obtain a drug (Vigabatrin) that is currently not available in the US. This drug has been known to stop the hypsarrhythic seizures.

Over Father's Day weekend Haley managed to catch some type of virus and it landed her with a 5 day "vacation" at MeKennan. She ran a bit of a fever and struggled with a cough for a couple of days but she is doing much better now.

She survived her first "Night of the Tornados". She thoroughly enjoyed her time in the basement at Grandma Eden's. Although everyone else's nerves were on end, she was thrilled to have everyone there to play with her.

Haley attended her first 4th of July parade in Ramona with Grandma and Grandpa Lingbeck. She got to meet lots of people and seemed to be more of an attraction than the actual parade. (We know she is cuter than any old float being pulled by a lawnmower). She has been practicing her smiles occasionally...even when she isn't sleeping. Haley and Mom have been going on walks in the park. Last week she met up with a dog that licked her feet. She pulled away and let the dog know she wasn't in the mood for such wet and sticky things. Her newest "game" is riding horse on Mom's knee and rolling on her ball.

Until next time...

Wednesday, April 30, 2003 4:42 PM CDT

Hello Everyone:

It has been a while since the last update but fortunately the Mighty Quinn is doing well and has continued to delight and surprise us with the things she does. The last trip to Mayo was without incident. The muscle biopsy was sent off for analysis and we expect to have the results on our next trip to Mayo, which is on May 12th. Haley is scheduled for another EEG and EKG. We expect that the EEG will look much differently than the previous ones.

The "milkshakes" have made a huge impact on Haley's weight. She is almost to the 20-pound mark and is just over 31 inches long. She has given up the bottle as her primary mode of eating. She can drink out of a sippy cup and for Dad she will drink out of a regular glass. She continues to sample everything that we eat. Of course the sweet things are most appealing to her. Her teeth keep coming in and she has had her first visit to the dentist. She continues to show her will and personality. Lying down to eat is not the best position for her anymore as she tries to sit up and lets us know when enough is enough. She has rolled over a few times on her own and is moving more all the time. There are times when she is poised just as if to tell us something of monumental importance. The words are just on the tip of her tongue. We continue to wait for those first words.

Enjoy the new pictures and look for more info after the trip on the 12th.

Until next time...

Wednesday, February 12, 2003 7:46 PM CST

Hello Everyone!!

Take some time to check out the new pictures. There was so much talk about Haley's new coat we had to add a couple of photos of the "twins". Haley had a great day on Sunday. She was in one of those moods where it looked like she just wanted to start talking and tell us all what was on her mind. It seemed she was just on the verge of a smile or her own words of wisdom. She continues to surprise and delight us.

The trip planned to Mayo for the muscle biopsy has been cancelled for now. Haley is fighting a bit of a cold with an ear infection. Any other procedure at this time would not be advisable. She continues to love those milkshakes and appears to have packed on a little extra weight. No official weight but we would guess close to 17 pounds. She also has 2 more teeth poking through. That makes 4 on top and 2 on the bottom. Take it from Auntie Amy...she CAN bite hard. Guess we should learn not to stick our fingers in her mouth!!

As always thanks to everyone for their continued thoughts and prayers. If you haven't visited the site recently, please check back through the old journal posting to get caught up on the Mighty Quinn!!

Until next time....

Monday, January 27, 2003 at 08:12 PM (CST)

Hello Everyone:

We know that everyone is wondering how the latest visit went at the Mayo Clinic. As with every visit we receive lots of information...maybe this time too much. The skin biopsy confirmed that Haley has a metabolic disorder rather than the previously diagnosed Ohtahara Syndrome. Her lab results show she has: multiple acytl-CoA dehydrogenase deficiency. Yes, this is quite a mouth full and we are still searching out information on what it exactly means. There are a couple of sites that give additional information on the disorder so we have been searching out more answers. In simplest terms it means that Haley's cells do not function they way that they should. www.umdf.org and www.fodsupport.org are two sites we have discovered so far.

Dr. Renaud would like to have Haley undergo a muscle biopsy. This would be a 30-minute surgical procedure and could provide us with more specific information on the type of disorder that Haley has. This information could also be valuable if Chris and Amy decide to have other children. Since the disorder is genetic they would have a 1 in 4 chance of having another child with the same disorder. Unfortunately there is no treatment available for the HQ. Her type is considered very rare and very complex. The biopsy has been scheduled for February 17th. We may decide to cancel the appointment if we decide not to put Haley through the procedure. We are still holding out for our "miracle" and trying to decide what is in Haley's best interest.

If anyone has question, please feel free to email us and if you find out any good information that we might have missed, please pass it along.

In the meantime, Haley is still as beautiful as ever and has managed to beef up in the past couple of weeks. She weighed in just over 16 pounds at her last doctor's visit. It must be the yummy PediaSure "milk shakes" she has been devouring!! What a happy little girl she is...but who wouldn't be smackin' down chocolate, vanilla, strawberry and banana shakes all day long?

Until next time...

Tuesday, January 14, 2003 at 08:02 PM (CST)

Hello Everyone!!!

Now that the hustle and excitement of the holiday season is behind us, it is time to get everyone up to date on the Mighty Quinn.

Haley's visit with Dr. Sanchez on Christmas Eve did not quite give us the "miracle" we were looking for. He was able to confirm Dr. Bunch's original diagnosis of Ohtahara Syndrome and prescribe a new medication. The thought of putting her on Vigabatrine has taken a back burner due to some of the side effects and its lack of availability in the US. The new medication did not give us the results we were expecting either. After only 2-3 days we took her off of it since she was extremely irritable and it may have caused even more seizures.

Haley continues with her therapy and this week we met with a dietician to talk about increasing her caloric intake. She is drinking real milk now and seems to like that. Hopefully it is putting some meat on her bones. Her last measurements were 15 pounds and 27 inches long.

Another trip to Mayo is planned for January 24th. We spoke with Dr. Renaud's office to find out what the results of the skin biopsy were. We hope that if the results don't provide a way to "fix" Haley that at least we will be able to find out what caused this. We are hoping to find out some answers this time.

Later this month Haley will also be evaluated by the Sioux Valley feeding clinic. We have been trying for several months to get her in for evaluation and finally have a tentative date. Haley's speech therapist believes that this will be a big help in getting Haley to eat better. Hopefully this will help resolve her bad habit of not wanting to open her mouth.

This weekend Amy and Chris are heading out to Rapid City to see some friends and celebrate Chris's birthday. They are both looking forward to some well-deserved fun and relaxation. Haley is spending the weekend with Grandma and Grandpa Lingbeck. They too, are looking forward to some quality time with the Bopper. We hope she is behaving herself and not causing too many sleepless nights.

Enjoy the new pictures. Finally.....

**On a sad note...Today a friend of the family experienced the loss of their daughter, Abigale Ann. She was only 9 months old. Our thoughts and prayers are with her family.

Until next time...

Tuesday, January 14, 2003 at 07:59 PM (CST)

Hello Everyone!!!

Now that the hustle and excitement of the holiday season is behind us, it is time to get everyone up to date on the Mighty Quinn.

Haley's visit with Dr. Sanchez on Christmas Eve did not quite give us the "miracle" we were looking for. He was able to confirm Dr. Bunch's original diagnosis of Ohtahara Syndrome and prescribe a new medication. The thought of putting her on Vigabatrine has taken a back burner due to some of the side effects and its lack of availability in the US. The new medication did not give us the results we were expecting either. After only 2-3 days we took her off of it since she was extremely irritable and it may have caused even more seizures.

Haley continues with her therapy and this week we met with a dietician to talk about increasing her caloric intake. She is drinking real milk now and seems to like that. Hopefully it is putting some meat on her bones. Her last measurements were 15 pounds and 27 inches long.

Another trip to Mayo is planned for January 24th. We spoke with Dr. Renaud's office to find out what the results of the skin biopsy were. We hope that if the results don't provide a way to "fix" Haley that at least we will be able to find out what caused this. We are hoping to find out some answers this time.

Later this month Haley will also be evaluated by the Sioux Valley feeding clinic. We have been trying for several months to get her in for evaluation and finally have a tentative date. Haley's speech therapist believes that this will be a big help in getting Haley to eat better. Hopefully this will help resolve her bad habit of not wanting to open her mouth.

This weekend Amy and Chris are heading out to Rapid City to see some friends and celebrate Chris's birthday. They are both looking forward to some well-deserved fun and relaxation. Haley is spending the weekend with Grandma and Grandpa Lingbeck. They too, are looking forward to some quality time with the Bopper. We hope she is behaving herself and not causing too many sleepless nights.

Enjoy the new pictures. Finally....

**On a sad note, a friend of the family experienced the loss of their little girl, Abigale Ann today. She was only 9 months old. Our thoughts and prayers go out to her family.

Until next time...

Saturday, January 11, 2003 at 10:50 AM (CST)

Hello Everyone!!!

Now that the hustle and excitement of the holiday season is behind us, it is time to get everyone up to date on the Mighty Quinn.

Haley's visit with Dr. Sanchez on Christmas Eve did not quite give us the "miracle" we were looking for. He was able to confirm Dr. Bunch's original diagnosis of Ohtahara Syndrome and prescribe a new medication. The thought of putting her on Vigabatrine has taken a back burner due to some of the side effects and its lack of availability in the US. The new medication did not give us the results we were expecting either. After only 2-3 days we took her off of it since she was extremely irritable and it may have caused even more seizures.

Haley continues with her therapy and this week we met with a dietician to talk about increasing her caloric intake. She is drinking real milk now and seems to like that. Hopefully it is putting some meat on her bones. Her last measurements were 15 pounds and 27 inches long.

Another trip to Mayo is planned for January 24th. We spoke with Dr. Renaud's office to find out what the results of the skin biopsy were. We hope that if the results don't provide a way to "fix" Haley that at least we will be able to find out what caused this. We are hoping to find out some answers this time.

Later this month Haley will also be evaluated by the Sioux Valley feeding clinic. We have been trying for several months to get her in for evaluation and finally have a tentative date. Haley's speech therapist believes that this will be a big help in getting Haley to eat better. Hopefully this will help resolve her bad habit of not wanting to open her mouth.

This weekend Amy and Chris are heading out to Rapid City to see some friends and celebrate Chris's birthday. They are both looking forward to some well-deserved fun and relaxation. Haley is spending the weekend with Grandma and Grandpa Lingbeck. They too, are looking forward to some quality time with the Bopper. We hope she is behaving herself and not causing too many sleepless nights.

Enjoy the new pictures.

Until next time.....

Saturday, December 28, 2002 at 08:18 PM (CST)

Happy Holidays!!!

Hope everyone had a joyous Christmas. One new picture and an update to follow in the next day or so.

Friday, December 06, 2002 at 05:42 PM (CST)

Hello Everyone!!

Hope you all had a satisfying Turkey Day and were able to spend time with family and friends. It was a hectic couple of days during the holiday weekend as Haley spent a night in the hospital. Friday morning she just wasn't her normal happy self. She cried and wouldn't eat so Amy took her to the emergency room. She had a 103-degree fever and was dehydrated so the testing began for everything including RSV. Luckily she had nothing too serious, just a viral infection with a bit of a cough. She was put on an IV to try and re-hydrate and reduce the fever. She spent the night on Friday and was released on Saturday morning. Just a bit of a scare for us but better safe than sorry. Both Haley and Amy spent the next couple of days catching up on sleep. Haley is doing better but now Amy has a nasty cold. Tis the season...

Later this month Haley will be going to visit a new doctor. There are some hopeful things with this visit but I won't speculate before knowing all the details. The appointment is on Christmas Eve so we will be hoping for a Christmas miracle.

**An oversight in the last update I would like to correct...thanks to Morgan, Haley's best buddy for helping out with unwrapping and testing out presents too.

Until next time...

Saturday, November 23, 2002 at 09:09 AM (CST)

Hello Everyone!!!

Well, it has been an exciting month for the HQ. A couple of weeks ago she got her new set of wheels. The KID CART that was ordered back in August finally came in. It looks very similar to a stroller but has some nice features specially built in for Haley. It supports her head, aligns and stabilizes her body. It allows her to sit up or recline just like Dad's lazy boy and it can be modified as Haley continues to grow. The stabilizing features make it easier to feed Haley and she can sit right up to the table with the rest of the family. (Some of us had to wait until we were 24 years old to sit at the big table).

Haley has another tooth poking through. This makes a total of 2 chompers. The speech therapist last week got to find out how sharp they were when Haley bit through her rubber glove. Guess that will teach people to stick their fingers in her mouth now. She continues to eat well and has gained a bit of weight. She is certainly getting to be a big girl.

The biggest and best event this month was Haley's first birthday!! Friends and family gathered at Gigglebee's for the grand celebration. Although we were all quite excited about the party, Haley was bored by it all and decided to sleep through it. She made quite the haul with new clothes, toys and her first little bracelet. Thanks to everyone who came to celebrate this milestone in Haley's life and to Adam who did a great job unwrapping gifts and test driving the toys.

Until next time...

Wednesday, October 23, 2002 at 01:06 PM (CDT)

Hello Everyone!

No news is good news. The Mighty HQ has been plugging along well the last month. She is continuing with her physical and speech therapy. She gets facial massages to help develop those muscles. We have seen a couple more smiles while she is sleeping so we know she can do it. The speech therapist uses small toothbrush like devices to encourage Haley to move her tongue around. She has one heck of a bite and it will be even more intense as time goes on since she is getting her first tooth! Our baby is growing up!

Haley has also been exercising her own little voice. Recently during a speech session the therapist was saying, "A cow goes MOOO", "A lion goes GRRRR". Haley brought all of the room to a stand still when she heartily replied, "GRRRRR". We are taking baby steps but each step is progress. Auntie will try to get some new pictures up by the end of the week.

Until Next time....

Tuesday, September 17, 2002 at 09:30 PM (CDT)

Hello Everyone:

Check out a few new pictures of the Mighty Quinn.

Haley is getting fitted for her Kid Kart this Thursday. We aren't sure how long it will take for us to get one, but at least the process is getting started. The Kart will be like a big stroller but will provide more support for Haley as she grows.

Haley had her first meeting with the speech therapy team. They seemed eager to get her started in therapy but Amy hasn't heard from them in the last couple of weeks. Haley is continuing with her physical and occupational therapy one a week and last week she was actually awake for her session. She still hates lying on her tummy but we are trying to follow the moves that the therapists are doing with her.

No appointments with Dr. Bunch over the last several months but she has suggested that we start Haley on a higher calorie diet. She is in need of putting on some baby fat. Dr. Bunch suggested we start to thicken everything with a product called "Thick It". (How clever, wish we would have thought of that name.) We aren't sure when or if we will start her on it. She seems to be doing much better with her eating now that she is off the liquid Depakene. We haven't seen her turn blue or stop breathing since we started with the pill form. Despite her lack of weight gain Haley is still growing like a weed. She up to 27 inches long and tips the scales at 13 pounds and 12 ounces.

Auntie Amy did some babysitting the last couple of weeks and Mom, Dad and Haley were the first dinner guests at the new house. Haley broke it in very well...in her own style. For those of you that can guess what she did, well, you are right. For those that can't guess...just imagine.

Until next time...

Wednesday, August 14, 2002 at 07:27 AM (CDT)

Hello Everyone!!

Yes, it has been awhile since the last update. More pictures are on their way as well. Auntie AJ has been busy with preparations, planning and packing up to move into her new house. Now Haley can have her very own room to sleep in when she comes to visit.


Since we last checked in Haley, Amy and Eden made the journey to Maryland to visit. It was a short 4-day trip but they were able to see Buddy, Mel, Great-grandma and a host of other family members and friends. It was Haley's first ride on a plane and she did really well on the way out. She slept most of the time and the flight didn't seem to bother her at all. The trip home was a bit different. She cried most of the way home (just didn't want to leave those MD folks) and was over all not a happy flier.

Over the course of the last week Haley was put through some swallowing tests. It has become more difficult to feed her. She has had episodes of choking, holding her breath or forgetting to breath when she eats. Initial tests showed she was aspirating food back into her lungs and a feeding tube was recommended. A tube would be inserted into her side for the future. During the 2 months that it would take for the permanent tube to heal, Haley would be fed through her nose with a drip tube. More x-rays and tests were done that somewhat contradicted the first set of tests. Rather than put Haley through the ordeal of having the surgery Amy and Chris decided to change the type of bottle she used. Gma Eden found a bottle called the "Haberman Feeder". The flow of formula is regulated so Haley doesn't drown in her milk. If she gets tired of sucking, the flow of milk stops. This seems to suit her needs very well and she has not had any other major bouts with choking.

We were relieved that the tube is not currently necessary. Haley loves to smack up her fruits and veggies so the thought of taking away her ability to enjoy eating seemed like a punishment for her. It would be punishment for us as well since most of our interaction with her is when she eats. The faces she makes are priceless. One night she was so hungry she sucked the Depokene right out of the syringe! The number of medications has been reduced. She is only taking Depokene and Topamax for her seizures. These drugs are now in a sprinkle capsule so she can take them with solid food. The only medication through the syringe is Carnitor, which protects her liver from the seizure medications.

Since not proceeding with the feeding tube was against medical advice Chris and Amy spent some time filling out a "patient's bill of rights". The document dictates what steps we will allow the doctors to take in the event of a life-threatening situation. At this time they have decided not to pursue and extreme measures for life support. They believe that Haley's quality of life if more important than the time she is with us. Just to reassure everyone, Haley is doing ok and is in no imminent danger.

Gma Deb did some babysitting last week while Amy and Chris went to the fair. They subjected themselves to a Poison concert. The concert was good and it was a great opportunity for Amy and Chris to get away together. Haley will be spending 2-3 days with Gma Deb again this week while Amy, Chris, Eden and family take a trip to the Black Hills.

As noted in previous journal updates, Haley was named the mission for July at the United Methodist Church in Madison. We would like to extend our thanks for your generosity and thoughtfulness. (Especially to Great-grandpa Mette).

Until next time....

Thursday, July 11, 2002 at 07:56 PM (CDT)

Hello Everyone!! Check out some new pictures. More rolls of film are being developed as this is typed so be watching...

Since the last update Haley has been to see Dr. Bunch here in Sioux Falls. Her last appointment was Friday. Not much has changed in the overall prognosis of our little punkin. Some changes have been made to the medications. We have taken her off of Zonagran. Both Zonagran and Depokene are appetite suppressants and seizure medications. Since we had not seen a decrease in the number of seizures and Haley's appetite seemed to diminish, taking her off Zonagran seemed to be in her best interest. The Depokene will be increased to 2ml 3 times a day over the next several weeks and will remain her primary seizure medication. Hopefully the increase will alleviate some of the seizures. She is now taking Melatonin to help her develop a more regular sleep pattern.

She is still growing like a weed. Up to 27" long but down a bit in weight to 13lbs. She has been doing her exercises with the physical therapists. They have been working on holding and grasping things. She has also been doing some swimming. The hot weather makes hanging out at the pool so nice for both Haley and Mommy.

On the 4th Haley stayed awake long enough to see her first fireworks. There are plans for a trip to Maryland to see some of Amy's family in the next week. This will be Haley's first airplane ride. We hope Haley does well with the flight.

Until next time...

Wednesday, June 26, 2002 at 07:50 AM (CDT)

Hello Everyone!! Check out the new pictures...Finally! Auntie AJ is being sort of slow in that area. Hope you all enjoy them.

Chris and Amy returned from Mayo on Thursday night. Haley was a good little traveler. The new car seat makes it more comfortable for her and gives her some leg room. She sits a little higher and can see out the window.

There were not many changes from her last visit to Mayo. The high resolution MRI showed no problems or damage to the brain from the seizures. A good sign. The EEG lasted 16-17 hours showing little to no change from the original EEG done 4 months ago. Haley is still having between 10-12 seizures for every 1 that we see her have. Doctors recommended a new seizure medication but as of yet we are not seeing much difference in the number of seizures. Dr. Renaud and the labs in Denver and Dallas will continue to do research on Haley's skin sample. The child epilepsy specialist at St. Mary's agreed with and confirmed Dr. Bunch's original diagnosis. Haley's condition would be categorized as Ohtahara Syndrome. At this point there is nothing new we are going to try for medications. Haley is home now and we plan on spoiling her and loving our little baby.

On Sunday, June 23rd the whole family was at the United Methodist Church in Madison. The congregation there has graciously offered to name Haley as the mission for July. Funds received during the month will be given to Amy and Chris to assist with Haley's daily needs. We thank them in advance for their kindness, generosity and prayers.

Until next time....

Thursday, June 20, 2002 at 07:24 AM (CDT)

UPDATE on Mayo -

Just a quick update. The family will be heading back up to Mayo tonight (June 18th) for 2-3 days. Haley will be going through some additional testing. Primary reason for this trip is a 24+ hour EEG. She will be hooked up to monitor brain activity while she is both awake and sleeping. They will also conduct a high resolution MRI to ensure the brain is developing.

***Amy called last night and unofficially the MRI looked good. Haley was hooked up to the EEG around 5pm. When Amy called Gma M Haley was sucking down some pears. They hope to be home sometime late tonight (June 20th) provided all goes well.

Who loves ya baby?

Thursday, June 20, 2002 at 07:18 AM (CDT)

UPDATE on Mayo -

Just a quick update. The family will be heading back up to Mayo tonight (June 18th) for 2-3 days. Haley will be going through some additional testing. Primary reason for this trip is a 24+ hour EEG. She will be hooked up to monitor brain activity while she is both awake and sleeping. They will also conduct a high resolution MRI to ensure the brain is developing. Good luck baby.

***Amy called last night and unofficially the MRI looked good. She was hooked up to the EEG around 5pm. When Amy called Gma M Haley was sucking down some pears. They hope to be home sometime late tonight (June 20th) provided all goes well.

Tuesday, June 18, 2002 at 06:22 AM (CDT)

Just a quick update. The family will be heading back up to Mayo tonight for 2-3 days. Haley will be going through some additional testing. Primary reason for this trip is a 24+ hour EEG. She will be hooked up to monitor brain activity while she is both awake and sleeping. They will also conduct a high resolution MRI to ensure the brain is developing. Good luck baby.

Haley has continued with her weekly workouts. The early education therapist comes on Wednesdays to "play". Recently they have been working on the manual dexterity with trying to get her to hold things.

Haley got her car seat souped up. She is growing so fast that her car seat is fast becoming obsolete. Some retro fitting with additional padding will give her a more comfortable ride. She was also fitted for a chair/stroller that would help to hold her. It is versatile and more stable than a regular stroller and could be used long term. Nothing on order yet but it is nice to know these things are available.

Father's Day was quiet and relaxing. The weather cooperated and we grilled out at Gpa & Gma L's. Darlene and Lanny joined us. Haley gave in to her Dad's poor taste in music by giving him tickets to see Poison at the fair. Gotta get out of the 80's Chris.


Have a safe trip to Mayo's and see you soon!

Until next time....

Tuesday, June 04, 2002 at 11:00 AM (CDT)

A NEW UPDATE!!

Lots of little things have been happening since the last update. No major problems or changes...thankfully.

The birthday bash was a complete success. Over 40 people attended the celebration on May 19th. The weather cooperated with us and the food was great. Haley got lots of new clothes and SHOES. Guess she is obsessed just like Auntie AJ. She got tons of cute stuff from everyone. We would like to give a huge "THANK-YOU" to everyone who brought a gift or was able to share the day with us. We received a Precious Moments figurine but don't know who gave it. Please identify yourself in a message to us so we can thank you properly.

Haley was jealous of Auntie AJ's trip to the beach so she demanded her very own pool. Daddy gave in a bought her a little fishy pool. Mom can even fit in it for a quick dip. Since Haley likes the water the pool is a great way to relax and enjoy a hot afternoon.

Haley spent Memorial weekend with Grandpa and Grandma L. There was a lot of visiting with friends and extended family members. Haley went to church and was the hit of coffee hour.

Haley has been going through some changes with her medicines. She started taking Phenobarbital in pill form. Crushing it up and putting it in her favorite fruit is a lot better than trying to get the liquid down in a syringe. She also started taking Topamax, a new seizure medication in pill form. We are slowly taking away the Phenobarbital and by the end of this week she will be totally off of it. She tends to be more alert without the Phenobarbital.

Last Wednesday the family met with all 5 of the Birth to 3 therapists and councilors. They determined she has the physical abilities of a 1-month old. She will be going to physical therapy beginning this Wednesday. 3 people will work with her for 1/2 an hour once a week. We are hoping this will stimulate some voluntary movements. Haley will also be getting fit for a new car seat. She will be evaluated on June 13th to see what will work best for her needs.

Haley met with a new pediatrician last week. Luckily it is a bit soon for more shots so she got a bit of a reprieve. She is growing like a weed. Not much change in her weight. She is still around 14 pounds but she is 25 1/2" long. Friday she is off for another road trip to the Mayo Clinic for a check up.

Until next time.....

Saturday, May 11, 2002 at 09:49 AM (CDT)

Greetings Everyone!!

It was another fun filled week with things to do and places to be. It started out with Haley's first big sleep over with Auntie A. She spent both Friday and Saturday night with Amy. Even with new drugs to take and being in a new place, she was such a good girl. We grilled out, had a few rides in the stroller and napped. The empty nest feeling was very real on Sunday night when there was no Haley to talk or listen to. Looking forward to the next opportunity... (hint-hint). While Haley was hanging out, Mom and Grandma Eden were bowling in Aberdeen. Amy bowled like a pro with a 208 game and over a 500 series. Great scores like that resulted in their team placing 10th out of 600 teams.

Monday there was another meeting with the Birth to 3 coordinators. Haley was put through some standardized tests with the early childhood education specialist. She was not able to perform most of the tests, however she does do some of the tasks, like smiling and reacting to sounds. These results, combined with those from her first visits will be reviewed and goals will be set up for Haley.

Tuesday night the stitches that resulted from the skin sample were removed. Amy did not have the right tools to get them out and rather than have Haley move or have a seizure while trying to remove the stitches, they made a trip to acute care. 2 seconds and it was done. The spot looks good so hopefully no scars.

We started the newest drug on Wednesday. Co-Enzyme Q-10. It is some gross stuff. Basically an oil so it is one more thing that gets put in a syringe and given orally. It didn't agree with her...how would you like a glass of Crisco? Yuck-O. At any rate she is doing better with it now and like with most things, it doesn't seem to bother her.

Friday night was the big Children's Miracle Network Bowl-a-thon. The team (Amy $300, Eden $250, AJ $750 and Lynn $340) collected an awesome total of $1650. There were great prizes for the whole team and AJ was the grand prize winner for collecting the most donations. Haley made a special appearance and danced to her first YMCA song. Such a natural!! Grandpa Frank was the designated babysitter and took Haley home for some supper while the rest of the gang celebrated at Perkins.

Mother's Day is right around the corner so there will be a little celebrating tomorrow and next Sunday we will be having a 1/2-year birthday party for Haley. Invitations have been sent but we don't want to exclude anyone so if you would like to join us on Sunday, May 19th at 2pm we would welcome everyone. She will be 6 months old on May 20th.

Finally.... thank you to our friends, family and co-workers who pledged to the CMN bowl-a-thon in support of Haley. Your willingness to donate and generosity is greatly appreciated. Thank-you to our extended families at Midcontinent, MEPS, Ford, and the USPS.

Friday, May 03, 2002 at 09:09 AM (CDT)

WOW!!! What a week. It started off on Monday with the shots. Haley got a total of 5 shots. They hit both legs and the right arm. The left arm got a reprieve since it has the stitches in it. She was a little cranky after the shots but some Tylenol and juice made her feel better. She is weighing in at 13lbs 10oz and is 25 1/4" long. She is experimenting with her first vegetables and seems to like the carrots best. Cereal, fruit and a little milk are keeping her fat and sassy.

Tuesday: The physical and occupational therapists visited the house. They were optimistic that they would be able to improve her head and muscle control. Putting her on her stomach will help in toning up the muscles but Haley hates being on her tummy. Guess we will need to work on that. She will be meeting with an early childhood education specialist and a speech therapist. All therapists will then meet to discuss their evaluations and plan the goals for Haley's therapy.

Thursday: It was an early morning yesterday for the whole family. Grandma Deb rode up with Chris, Amy and Haley. They were up at 3am, packed and on the road. The first appointment was with the ophthalmologist at 7:30a. Haley's pupils were dilated to view the optic nerve. The brain appears to be receiving the images that the eyes see and anatomically she is normal. It is still very early to tell how good her vision is. The only abnormality found was a slight astigmatism in one eye.

Next was the consultation with Dr. Renaud. Her urine sample from last week showed a high concentration of EMA (acids). Her blood work confirmed the abnormally high acid content and that certain enzymes were not functioning. The enzymes in the mitochondria of Haley's cells are defective. There will be more testing to determine the cause of the enzyme not functioning but for now they will try to "turn on" the enzymes by giving her large doses of riboflavin. The RDA for riboflavin is 1mg. Haley will be given 100mg/day. This apparent overdose will not hurt Haley but will hopefully “jump start” the enzymes. 2 additional drugs will be given in conjunction with the 4 she is already taking. Clonazapan is a new seizure medication and Co-Enzyme Q-10 will help with the function of her enzymes.

The skin sample that was taken 10 days ago is growing. They will continue to grow it at Mayo until there is enough to be shipped to laboratories in Dallas and Denver. Scientists in these hospitals will continue to test and look for the cause of the seizures. It is possible that a muscle biopsy will be needed for similar testing in the future.

The ultrasound was normal. Her liver was a bit larger than normal but it is not anything to be concerned about. Its increased size could be attributed to the number of drugs she has taken and that her body is smaller than other children of her age.

The EEG was still abnormal. There have been no changes since the initial EEG that was done. The medications that she has been on are masking the seizures rather than treating the source of them. The plan is to focus on determining why the seizures are occurring and get them stopped.

There will be a follow up with Dr. Bunch on May 15th and then back to Mayo in early June for another meeting with Dr. Renaud. There are some positives from this trip and more information than we can all comprehend at this point. Notes and additional information will be sent from Dr. Renaud and as we are able to work through it we will post more information. Hopefully the next few weeks will be a little less hectic and we can enjoy just being with the HQ.

Sunday, April 28, 2002 at 07:23 PM (CDT)

Friday's trip to Mayo was productive. Not only were they able to conduct the ultrasound, they were also able to get in for the EEG. Another trip is still planned for Thursday, May 2nd for the consultation with the doctor. Results of the EEG and ultrasound will be available then. Haley is becoming quite the traveler and is enjoying the road trips. She has been in great moods despite all of the poking and prodding. Big seizures have been few over the last week, which is hopefully a contributing factor to her alertness and smiley outlook.

This week will be full of appointments, more road trips and a sleep over at Auntie A's...(there are new batteries in the camera).

Schedule for the week:
Monday the 29th Haley is scheduled to finally get her 3-month shots.
Tuesday the 30th she will meet with the physical and occupational therapists.
Thursday the 2nd she is back to Mayo for the consultation.

As a side note: On Friday, May 10th Amy, Eden and Auntie A. will be bowling for the Children's Miracle Network. Pledges are welcome if you would like to sponsor the "HQ Team". Thank you to those who have already pledged. Your support is greatly appreciated.

Thursday, April 25, 2002 at 05:28 PM (CDT)

Chris, Amy and Haley returned late Tuesday from the Mayo Clinic. All in all it was a good trip with lots of info. Amy can make a list of questions or concerns that the family has and the doctor will take as much time as necessary to explain what is going on. They were able to meet with the dermatologist and a piece of skin/flesh was removed from Haley's left bicep. If there is any abnormalities found in the blood tests, doctors will be able to use the skin sample to do more extensive testing on it. Haley has 2 stitches in her arm but doesn't appear to be any the worse for having gone through it. What a trooper!! Chris and Amy will head back to Mayo on Friday for the ultrasound of Haley's liver and spleen. They will also try to get in the EEG so as to eliminate a trip later in May. Safe travels!

Monday the 29th Haley is scheduled to finally get her 3-month shots and she will meet with the physical and occupational therapists on Tuesday, April 30th. More on that as it develops.

As a side note: On Friday, May 10th Amy, Eden and Auntie A. will be bowling for the Children's Miracle Network. Pledges are welcome if you would like to sponsor the "HQ Team".

Monday, April 22, 2002 at 08:08 PM (CDT)

Chris, Amy and the HQ arrived at the Mayo Clinic around 10am this morning. They started the day out with a stack of paperwork. In total 15 pages of forms to be filled out. Once that tedious task was complete, they met with a pediatric neurologist. The doctor confirmed that Haley was not retarded and that she had a great appearance...(it doesn't take a rock scientist to know that Haley is beautiful.) No major testing today, other than taking some blood. The doctor thought that Haley's liver and spleen were enlarged and requested an ultrasound. Currently, her appointment for the ultrasound is scheduled for Friday. They will check for cancellations to try and get Haley in sooner.

Tomorrow they will meet with a dermatologist to harvest some of Haley's skin. Doctors will keep and grow her skin for future testing. More as that develops.

Thanks to everyone for their thoughts and prayers.

Sunday, April 21, 2002 at 09:03 PM (CDT)

Amy, Chris and Haley headed up to the Mayo Clinic this morning. They plan to stay 2-4 days at the clinic consulting with specialists and running additional tests on Haley. Amy promises to send me updates on the daily activities during their visit so hope to keep everyone updated.

Haley is growing like a weed. She has gained a couple of pounds and is getting longer. We have been buying new summer outfits. Rumor has it that Grandma Eden purchased Haley her first bikini. Guess she will be hitting the beach to catch a great tan.

Drive home safe. "Who loves ya baby?"

Thursday, April 11, 2002 at 03:58 PM (CDT)

Finally a new update!! Luckily there is not much news to tell. Haley had a great time at Grandma Lingbeck's, or rather Grandma and Grandpa had a great time. It was amazing the number of friends and family that stopped over during the weekend. We love the opportunity to share Haley and the joy she brings. I have to agree with Patti and Sandy, she smells great. I know that Gma and Gpa L miss not having her around the house and look forward to another visit very soon.

I have posted a couple of new pictures and am in the process of creating a site that will be just for pictures. For those of you that are visiting the site for the first time and are unsure of Haley's condition, please take a look at the previous journal entries. Thanks to everyone who has visited thus far and stay tuned!!!

Friday, April 05, 2002 at 09:00 AM (CST)

Haley's appointment with the Birth to 3 coordinator went very well yesterday. She provided Amy with more information on the program and what to expect after the first assessment. The coordinator will schedule an appointment for Haley in the next couple of weeks, hopefully before the trip to Mayo. During her first assessment, she will meet with a physical therapist, an occupational therapist, and an early childhood development coordinator. Each will perform standardized tests on Haley. Based on the scores of the tests, Haley would be eligible for other benefits, such as Medicaid. The coordinator also gave Amy some information on the assistance that Easter Seals provides.

We increased Haley's dose of Phenobarbital back up to 4ml per day. She was down to 2ml, however, that dose was not masking the seizures very well. We are giving Grandma Eden a break for the next couple of days. Haley is on her first sleep over with Granny Deb. Chris and AJ took her up on Thursday night. We hear there are big plans to put Haley to work helping Granny but we all know they will just hang out and maybe invite some neighbors over to see HQ.

Tuesday, April 02, 2002 at 05:20 PM (CST)

Hey, check out the NEW pictures!!

Haley has her appointment scheduled at the Mayo Clinic for April 22nd. More on that as time goes on.

She also has her first appointment with the Birth to 3 group. This will be a physical assessment of her abilities. It will allow us to get her help with physical therapy and other needs as time goes on. Her appointment is scheduled for Thursday, April 4th.

Monday, April 01, 2002 at 04:46 PM (CST)

Haley spent her first Easter with Grandma and Grandpa Lingbeck. She looked MAREVELOUS in her new Easter dress. There were plenty of family and friends that stopped by to see and hold her. Haley was on her best behavior and there were tons of photo opportunities. The best visitor was little Morgan (Don and Donna's granddaughter). She was so excited to see Haley and she even got to hold her. When Amy laid Haley on her lap Morgan said, "She is beautiful. I love her." Everyone felt the same way as Morgan did.

Sunday, March 31, 2002 at 08:18 AM (CST)

Hoppy Easter Everyone!! It is great to see everyone using the site. We hope to have new pictures up in the next couple of days. There are sure to be some Easter ones.

Haley spent Friday hanging out with Auntie A. We went to visit the gang at Midco. Everyone got a chance to hold Haley and she put on quite the show. She had lots of smiles for everyone, was alert and happy. Thanks to the Midco family for all their support. The rest of the day was pretty lazy. We watched cartoons and took a little nap until Mom came to pick her up. We both thought it was a pretty good day. Can't wait for the next time.

Thursday, March 28, 2002 at 12:08 PM (CST)

For those that are not familiar with Haley's condition and the struggles thus far, here is some history of the past month.

On February 21st Haley was diagnosed with Early Infantile Encephalopathy with Burst Suppression. This is also known as Ohtahara's Syndrome. Ohtahara syndrome is a neurological disorder characterized by seizures. The disorder affects newborns, usually within the first three months of life. Individuals with Ohtahara syndrome often have mental retardation or other developmental impairments. The cause of the disorder is unknown. There is no cure for Ohtahara syndrome. Drug therapy has limited effect and the prognosis is often fatal.

You can imagine how devastated the whole family was after hearing such sad news. Haley had spent close to 36 hours hooked up to an EEG machine just to make sure there was no other possible diagnosis. After a couple of days in the hospital, all anyone wanted to do was go home and hold Haley.

She started off on Phenobarbital to control the numerous seizures. Doctors estimated that Haley was having 100-300 seizures a day, although the majority of them were not outwardly visible to us. The dosage of Phenobarbital increased over the next couple of weeks but it made Haley so sleepy. With the seizures suppressed a bit Haley started packing on the weight. She gained almost a pound in 10 days.

The first part of March Haley spent a couple more days in the hospital. Dr. Bunch recommended some additional tests, including a spinal tap to rule out some metabolic deficiencies. All tests confirmed it was Ohtahara's. Dr. Bunch's goal was to stop or reduce the seizures so the next step was to start Haley on steroids. The 14-day regimen of ACTH shots would speed up Haley's brain maturity and hopefully stop the seizures. Amy practiced how to give the shots on an orange and successfully gave Haley her first injection. We would play the waiting game to see how successful the shots would be.

10 days later Haley was back at the hospital for another EEG. We all kept our fingers crossed that the daily shots would have made some improvement. Sadly, they did not work. There is always something new to try. Perhaps a different drug would make a difference since increase doses of Phenobarbital were only making Haley seem sleepier.

So, here we are today. Haley is weighing in at a whopping 11lbs and she is 25" long. Although the testing and drugs take their toll on such a little body, she is a trooper and has smiles for her Mom, Dad, Grandmas and Grandpas. Uncle Mike probably make her laugh the most (but who wouldn't laugh at Mike?) Aunt Sara plays music for her and Aunt Staci reads her books so she is entertained. Aunt Amy prefers to sit with her and rock. Cuddle time has its benefits.

Haley is eating cereal now and she loves her fruit!! A few pears, apples, and bananas help hide the drugs and she likes eating from a spoon. She is still on quite a few drugs. We are weaning her off the Phenobarbital and replacing that with Depokene. This should help suppress the seizures and not make her so sleepy. Depokene attacks the liver so to help protect it; she also takes Carnitor and folic acid. She is off the Zantac but Amy feels bad about taking that away from her. Haley liked that one and thought it was a good treat.

Currently there are no plans to go to Rochester. Amy and Chris have released Haley's files to the Mayo Clinic and they are now just waiting for the doctors to review them and then make an appointment.

Wednesday, March 27, 2002 at 12:32 PM (CST)

Welcome to our new web page!!! We hope to keep this updated with new information and pictures of our little HQ. Please pass along this web address to friends, family members and to those that are praying for Haley. Leave the family messages, as I know that Chris and Amy will appreciate the support from friends and family that are far away.

Wednesday, March 27, 2002 at 12:11 PM (CST)

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----