Lisa's Page

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13 months

9 months

The Story of Lisa Marie Picht

A parent wonders where do you even begin to write about your child that was born with Apert’s Syndrome.

I had what most people would say was the perfect pregnancy. I never had any morning sickness and I felt good all the time. People said that when they saw me it was like I was glowing. My husband Randy and I had just started the birth classes. At the 2nd session the instructor talked about premature labor because she said there is always 1 couple that has their baby early. Well, we were that couple.

I had been to the doctor for my regular doctor’s appointment at 3:45 PM on July 28th, 1989 and things seem to be ok. They were watching me closely because I had swelled up like a balloon. It got to the point where the doctor was thinking about putting me on ½ days at work and/or bed rest. They were somewhat concerned about Lisa not really moving very much. I never felt her kick me like a lot of people. With Lisa being my 1st born (and the only child still) I really did not know what to expect. I had 1 ultrasound done in May of 1989 because I was losing weight instead of gaining weight. I did watch my weight close because I was a big gal. I weighted in at 211 pounds when I found out I was pregnant. The doctor told me to make an appointment to come back in 2 weeks. They were going to start following me closer and wanted to do testing. I did make the appointment.

At about 4:15 AM on July 29th (12 hours after I left the doctors office) my water broke. I took the advice of the instructor. She had said that if your water breaks or you feel any strong pains they could be labor pains and to make sure that you call in immediately. Well I called the emergency room and my husband took me in. I knew I was early and the only thing I could think of was “I don’t want to lose this baby”. We got to the hospital and they ran tests to make sure it was my water that had broke and at the point told me that I was going to have my baby early. There was no way of stopping it now but they did not have the facilities for a premature baby. They did not even have a respirator at that time. We are in a town of about 12,000 people. They gave me the option to go to the Minneapolis area or I could go to Sioux Valley Hospital in Sioux Falls, SD. I did not want to go to the Minneapolis area because I could count on 1 hand how many times I had been to that area in my 27 years of life. We chose to go to Sioux Falls, SD. They told us that they had an excellent Intensive Care Nursery. Another factor is that I have a brother and sister-in-law who live in Sioux Falls.

While they were waiting for the ambulance, I called my mom. I told her that I was being transported to Sioux Falls by ambulance because my water had broke. I had told her also to call my brother (Tom) that lived there to let him know I was coming his way. The doctor told Randy to go home and get some things and to go to Sioux Falls. At that time the doctors told him to just go and if the ambulance passes him on the way to not try to keep up with it.

They took me to Sioux Falls by ground ambulance. There was a nurse with me in the back and it was not until I was in the ambulance that I actually felt a contraction. The nurse was very nice. She kept telling me to relax and she tried her best to keep me calm. As we got closer to Sioux Falls my contractions were 3 to 5 minutes apart. She said she had some medication with her that would help slow down the contractions but she did not want to use them unless she absolutely had to. She did not want to deliver this baby in the ambulance either. She did a fine job. Sioux Falls is about 100 miles from where we live.

We arrived at the hospital right at 7:00 AM. They took me into a room and started to examine me. Of course they put the belt on my stomach. Shortly after we got there and they had checked me out they told me I was dilated to 2. It could be awhile. Soon after, the nurse came in and told me that I had visitors. It was my brother Tom and sister-in-law Cheryl. The nurse asked if it was ok with me if they came in my room. I said “If it’s ok with you it’s ok with me”. My brother and sister-in-law took my husband Randy out for breakfast and shortly after they got back I had a terrible contraction. The nurse came in and checked me out and said that it was not a contraction. Then I got mad. The next time I told the nurse that I felt like I had to push. She went and got the doctor and he came in and said “Let’s go, you’re going to have this baby.” My husband started to take the controls off my bed and the doctor asked if he was coming into the delivery room and I said “Yes he is.” The doctor told him to hurry and get scrubbed. The baby was coming.

They took me to the delivery room and at 11:21 AM Lisa was born. 4 ½ hours after I got to Sioux Falls. When Lisa was born she did not cry. They had a team of nurses and doctors with her and a team with me. She weighed in at 4 pounds 6oz and was 17 ½ inches long. Born 8 weeks early. They took her away very quickly. After I had gotten back to my room the doctor came in with a book. It was a book of various syndromes and said that this is what Lisa has. The pictures were terrible. They said that these pictures are of someone who had not had any surgeries. It was called Apert Syndrome.

The first time I saw her was in the Intensive Care Nursery. She had so many tubes hooked up to her. She was on the ventilator and 100% oxygen, monitors showing heart rate, saturation’s etc. Everywhere you looked there were tubes. They had her body paralyzed so she could not move. They said that she could feel us rubbing her tiny body but she could not move. They did not want her using up any energy. This was drug induced. This was a very terrifying moment. To see your baby basically lifeless. That is when the emotions came out. I had wondered what did I do wrong? Why did this happen to me? Is my baby going to make it? They said that the 1st 48 hours were real critical. It could go either way. I looked at her hands, head and her feet. Her fingers on her hands were fused together. The toes on her feet were fused together. Her head was not shaped right either. Because she was a premature baby her lungs were not fully developed. All I could think of is what went wrong?

We got a visit from a Social worker at Sioux Valley on Sunday. She was our guardian angel. To this day I still think of her as an angel. Gail was wonderful. She knew exactly what to do and what to say. She explained things to us that we had never heard about.

I was the youngest child of 11 and the last child to have kids and why me? I had 25-30 nieces and nephews and they were ok. What happened? No one can imagine what things go through your mind until it happens to you.

My mother, mother-in-law and sister came down Sunday morning. To this day I don’t know if they even went into the nursery at that time. I also got a call from back in Marshall. It was from the nurse that rode with me in the ambulance. She was checking to see how I was doing. Sunday morning a doctor had come in to see how I was doing. I had asked the doctor if I could go home (get out of the hospital) on Sunday so I came home. There was nothing we could do. We could not hold her or do anything with her. It was a waiting game. The nurses were just fabulous. Lisa was 1 on 1 at that time. This meant that there was a nurse by her at all times. They said they would call us and give us updates. We got home and I made a few phone calls. Got things together. It was the end of the month at work and I was just starting to train someone in on what I did. (I was not due until September 20th) I called my boss and told him what happened and that I would not be there for awhile. He said that was fine and to keep him posted. Sioux Falls also gave me the phone number and told me to call anytime I wanted to. They called us a lot.

On Tuesday, I went back to Sioux Falls with my mother-in-law. I believe this was the 1st time she had seen Lisa. She was very emotional about things too. She had 3 boys and 2 grandchildren with no problems. She had never experienced anything like this. It was at this time that the doctors told me that kids with this syndrome could be mentally retarded but said that there was no way of knowing how severe. We would only know as she got older. The nurses also said that they would set up a time to call us daily to give us updates. They also asked if we wanted them to video tape her. At that time I said no but later I agreed that they could. That was a very good decision to make. We would have missed out on so many things if we had not let them do that. The 48 hours came and went. Lisa was slowly getting stronger. We did not get to hold her until she was 3 weeks old. Even then it was hard on us because she had all the tubes attached to her but we learned how to deal with them. Sioux Falls continued to call us. If they did not call us we would call them at about 5:30 PM. Sometimes we were very impatient with them because they did not call us at 5:30 but we soon realized that our baby was not the only one that was sick. There were many others and the nurses had other babies to work with.

I went home and was just going crazy. I did not know what to do. I would get phone calls and all I could do was cry. The doctor had me on medication to keep me calm. I called my local doctor to see if I could go back to work. (He had gotten word from the ER that I had been transferred) I could not sit at home. I was going totally crazy. He had said I could go back to work as long as I did absolutely no lifting. I had many stitches because there was not time for them to make any incision. I had tore. My local doctor was concerned. I went back to work on the following Friday after she was born. Everyone welcomed me back. They expressed their concern and wanted to let me know that if I needed anything to just let them know. (I also knew there was nothing I could do for Lisa and I wanted to save my vacation time for when she did get to come home) There were a lot of people that had called and said if we need something please let them know. You really don’t know how many people care until something like this happens. We truly found out.

When Lisa was a week old, we did have her baptized by a Lutheran chaplain. This was because she still was not out of the woods and we felt it was something we needed to have done. One of the rules that the Intensive Care Nursery had at that time was that only the parents and grandparents were allowed to be in the ICN. But that day my sister-in-law Phyllis did get to go in. Lisa was in the room of the ICN where the real sick babies were. We were so glad they allowed her to go through this ceremony with us. This same weekend we had a family reunion in Sioux Falls just blocks away from the hospital. This was planned long before Lisa was born. The only problem was that no one could really go and see her because she was in the room where the real sick babies were, there was only 1 little window you could look in but yet you really could not get a good look at Lisa. There was no way of taking her to the window to show them.

So every Friday night we would get off work come home and our clothes were already packed and we would go to Sioux Falls. We would go directly to the hospital. Stay there until 9:00 at night and then go for supper and then go to my brothers. We would get up early on Saturday and go back to the hospital and spend the day and so on. We would come home on Sunday afternoon. We did this for 6 ½ months.

While we were there we got to know some of the nurses and doctors pretty well. They also got to be like family. There is one in particular that we are still very close to. Her name was Ellen. It seemed when Ellen worked she took care of Lisa. To this day they have a special bond.

I will never forget the time that we were in the nursery and one of the doctors from the Intensive Care nursery came up to us and wanted to talk to us. Lisa was not eating or bottling at all. They had a tube that they would put down her throat or through her nose and feed her that way. Sometimes they would leave the tube in and just tape it to her face (with transpore tape) This was the only way she would get anything. I remember them starting her out with 1 cc and slowly increase it. It is amazing how they nurture these little ones on but that doctor wanted to meet with us. So we walked out of the ICN right behind him and when we entered the conference room there was Ellen. She had come in on her time off to sit with us during this consultation. This meant a lot to us. She didn’t have to do this, she did it on her own. That makes Ellen even more special. The doctor talked to us about putting in a gastrostomy tube. (G-Tube). This would help Lisa get stronger and would be a lot less stressful when it came to feeding her.

While she was there she had a couple surgeries done and of course we were there for them. They had to wait until she was strong enough to go through them. The 1st surgery they did was a G-Tube. (10/89) With the syndrome and her being a premature baby she could not breathe, suck and swallow at the same time. There were times where they would try to feed her and she would turn pale. She would quit breathing. This meant she was not able to take a bottle. They would get the bag out and get her breathing again. That took a lot of the stress off of Lisa but yet Lisa had a gag reflux. She had a tendency to regurge a lot. Sometimes when she would do this she would also turn blue. Labor day (Sept 1989) I will never forget it. I was feeding her with a bottle (this was before the G-tube) and all of a sudden her heart rate started to dip. The monitors went off and they took her from my arms and called the doctors in (Code Blue). Lisa had quit breathing again and they rushed Randy and I out. That was a nightmare. They got Lisa stabilized and we were back in there about 30 minutes later. She had done it again. Quit breathing.

There was another baby close to Lisa that was being fed with a G-Tube. The parents agreed to let us watch them so we knew what to expect. They reassured us that it was not hard to do but was something that we would have to learn how to do. So she had the G-Tube surgery and now we look back and it was a breeze. It was easy but without it I don’t believe Lisa would have made it. After they did the G-Tube they did another surgery to try get her to quit regurging. This was supposed to prevent her from being able to regurge. It did not work. They said that if they would have done it at the same time they did the G-Tube it may have been ok. At the time the G-tube was done they did not feel it was necessary.

Early December of 1989 my mother who at that time was 69 years old had fallen and broke her ankle. She was also transported to Sioux Falls. They wanted to take her to a different hospital in Sioux Falls but she said to take her to Sioux Valley. Mom ended up having hardware put in her ankle and when I first got word of that I took off from work and went right to Sioux Falls. We knew that she was going to need surgery too. Now I had 2 family members in the same hospital. After mom’s surgery was done and she was on the road to recovery, we did get to take Lisa to mom’s room (of course a nurse was with us) after visiting hours. That was very special to my mom. Lisa was still on monitors.

We knew that Lisa needed to have a cranial facial surgery because the sutures were fused in her head. At this time the brain had no room to grow. On Dec 6, 1989 Lisa had her 1st head surgery at Sioux Valley. The reason it took so long before we could do it was because they wanted her to be close to 10 pounds. I believe Lisa was over 9 pounds at the time. We went as far as we possibly could with Lisa but could not go any further than where you talk to an anesthesiologist. Once Lisa was in surgery then we went and got mom out of her room and took her back to the waiting area with us. She was getting discharged. At the time Lisa was in the ICN there were 4 doctors that worked there. They all knew Lisa well. All 4 doctors took their turn going into the OR to see what they were doing during the cranial facial surgery. There was one doctor that came up to visit with us in the waiting area after he had been in the OR and he said it is just amazing what they are doing to Lisa. He had never seen anything like it. During surgery they discovered that Lisa’s forehead was paper thin so they reconstructed her a new forehead and wired it in place. They used a substance like coral to do this. Lisa came out of surgery just fine. Mom was checked out and our day was going ok. After Lisa got back into the ICN, we were told we could see her. They had warned us that she would look really black and blue and swollen. They said she would look like she was in one heck of a street fight. Even with those words we thought that we knew what to expect but that was not the case. It did not even look like Lisa. She was badly bruised and swollen and she had the drainage coming from her head. They had her back on the ventilator and it seemed we were back to square one. It was very frightening. Nothing the doctors said really prepared us for what she looked like. They were exactly right. Again the nurses were 1 on 1 with Lisa. We had put our trust in the doctors and nurses there and what wonderful people they were. We brought mom home on December 6, 1989. I remember it well. It was a Wednesday. Randy and I went back up to the hospital Friday night just like we always did. It was still hard to see her like this but she was getting better.

Once the swelling had gone down and the turban could come off we saw Lisa’s incision and could not believe the difference in her appearance. Her incision was from ear to ear. Her face was nice and round. She did not even look like the same child. They needed to keep her hands constrained for a while so she would not accidentally hit herself in the forehead because that could have made her forehead cave in and that part of the surgery would have been destroyed. There were messages on her crib that said “Do Not Put Pressure On Forehead” We had to make sure that we picked her up by the back of the neck. It was very scary but it was just another obstacle that we had gone through. There was plastic surgery involved.

Early December 1989 they started talking about discharge. They told us that it was going to take both of us to care for her. If we did not work as a team she was not coming home. The doctor said it takes 2 to make them and it is going to take 2 to take care of her. We needed to have skilled nursing care when we got home because of the G-Tube feedings and all the medications she came home with besides the stand by oxygen. Besides where would I find a daycare that did tube feedings? With this the social worker (our angel) from Sioux Valley got in touch with a home health care agency here in Marshall and basically made a lot of the arrangements for us. The 1st thing they had to do was screen us and Lisa’s primary nurse (RN) had to go to Sioux Falls to train with the nurses on how to take care of her. This all got done and the doctors were talking about Lisa being discharged on Christmas Eve Day 1989. Before Lisa could be discharged they wanted to know who her doctor was going to be back home, what kind of car seat she had, what type of monitor she was going to be using and what we had for oxygen. So we got that all in place and took it to Sioux Falls that weekend with the intentions of bringing her home with us.

When we got to Sioux Falls with all this, Randy dropped me off at the door and I carried a lot of it up with me. Randy brought the rest after he parked the car. When I got up to the scrub room I was met by 2 of the doctors. They gave me the bad news. They told me that Lisa was not going home because she had another episode where she quit breathing and turned blue. We were both crushed. I had put a happy ad in our local newspaper telling everyone that Lisa was coming home on December 24th and now it was not going to happen. We called back to Marshall to let our moms know that Lisa was not coming home. Everyone was crushed. But thinking back it was better that she did that while she was still there than on our way home from the hospital. We also knew that Lisa was in the best place she could be. Every time we went to Sioux Falls for the weekend, it was much harder to leave her behind. When she was tiny we knew we had no choice. I would cry every time we had to leave. Every week it got harder and harder to leave her. Finally on February 17, 1990 (her 200th day in the hospital) we got to bring her home. On the day of discharge Ellen came in on her day off to say good-bye. She videotaped the nurse carrying Lisa to the car and then us driving away. Once she stopped the tape we went back and picked it up. Then we had made arrangements back here to have someone videotape us coming down the street and driving into the driveway with her.

When we left Sioux Valley it was just like we left part of our family there. Since we were there for so long we got to know a lot of the nurses and doctors very well. They are and always will be our extended family.

Once we got home we called the Primary Nurse and told her we were home and she came right over and helped get everything organized. She had made arrangements for the rest of the caregivers to come on Monday to see Lisa and to also help me train them and show them what all had to be done. We had several medications to give her and also had to do the tube feedings very frequent. We had both worked full time and still had our jobs to go to and that is why we were able to get the Home Care Agency organized. I remember when we got home and we had to do the tube feedings it had to be done every 2 hours. I would get up and do the midnight, then Randy would do the 2:00 AM feeding and we just kept switching off every other feeding. We would take Lisa back to Sioux Falls for checkups and they would give us the ok to increase the amount of fluid (24 calorie similac w/iron) we put through the g-tube and then we could do the feedings every 3 hours and eventually it got to be every 4 hours. We finally could get a good night sleep. We had many wonderful nurses. They would come over and take care of Lisa while we worked and then if we needed a night out just to get away from things they would come in and do our respite care. They also knew how we still needed some time to get out and away from it all. At the time that Lisa was born we both shot in a Pool League in town. I would shoot pool on Monday nights and Randy would shoot pool on Wednesday nights. This was our night out. We were into pool league very heavy. When it came time for the team tournaments, they were held in Sioux Falls. When Lisa was little we would make arrangements to take her to Ellen’s house in Sioux Falls. We could not have asked for a better baby sitter. It was quality time for both of them and we felt like it was OK to leave her with Ellen. What better hands could she be in. She was with a RN that she knew and we trusted Ellen with her. It took away a lot of the worries we had if we would have left her back home. Besides if something would have gone wrong we were right in Sioux Falls and Sioux Valley was not far away.

We had RN’s in our home for quite some time. Once Lisa was about 1 ½ or 2 years old, she did not need the skilled nursing anymore. We went from RN’s to HHA. (Home Health Aides) We had HHA’s in our home until she started daycare which was about 4 years old. We still did the tube feedings but it got to the point where we were putting pediasure through the g-tube instead of formula. We again had to hospitalize her to get her off the g-tube and to drink pediasure from a cup. She needed to be desensitized because she did not want anything in her mouth. She would gag on pudding and applesauce. It was all behavioral. They said that the older she is when she begins to eat the harder it is going to be. We found out exactly what they meant. We finally got her to drink from a cup and only used the G-Tube for medications. They did not want to make her try take medications through the mouth because that would have been a negative thing for her. She would probably never eat. We loved everyone that took care of Lisa and believe me there were many different people. When you have people in your home like that you feel your house has to be kept up and you lose a lot of privacy. But we did it and we got through that and I think it made Randy and I a better couple. You learn not to take things for granted.

In September 1990 Lisa had her 1st set of tubes put in her ears. We had lived through many ear infections and that is common. This was done in Sioux Falls.

In September 1991 almost 1 year to the day Lisa had a different set of tubes put in her ears. The first set had come out and again we struggled with ear infections. The 2nd set of tubes was also done in Sioux Falls.

Eventually Sioux Falls had referred us to the Mayo Clinic in Rochester. They had said to go somewhere that specializes in many different medical fields. (Lisa was the 1st Aperts Syndrome child born at Sioux Valley) We did still follow up with a doctor in Sioux Falls. He was the one that did the gastrostomy tube. He was concerned about her growth and was watching her calorie intake very closely.

We made an appointment to go through the Cranial facial clinic at the Mayo Clinic in Rochester. This is a one time a year occasion. We see everyone from orthopedics, ENT, orthodontists, genetics, a pediatrician, Ophthalmology and more. They take photos of her. We also try to see a hand surgeon. That normally is not included with the clinic.

In November of 1990 Lisa had her first hand surgery. They separated the ring finger and little finger and also separated the pointer finger from her middle finger. Lisa then had 3 fingers and her thumb.

May of 1991 she had her other hand done. We have the same result. 3 fingers and her thumb.

They could not get 4 fingers on each hand because the bones are so badly fused the doctor said that if they separated them she would not have use of either one. So the middle finger and ring finger are still fused on both hands. We have also had the thumbs straightened but they will need to be redone down the road.

In 1995 Lisa complained that her hip hurt. We took her to the orthopedic doctor that comes to Marshall from Mankato and they took X-rays. They determined that Lisa’s hip bones were not in the hip sockets the way they should be so we took her to Mayo Clinic to see an orthopedic surgeon and we had double hip surgery done. (6/95) They did both hips at the same time. They had to cut bone and put in pins and screws. We again had HHA’s in our home. Lisa was confined to a wheelchair for 6 weeks. The HHA went to school (summer school) with her. She rode a bus that had a lift in it. We also had to do physical therapy. This was time consuming but again we made it through.

In June 1996 Lisa had surgery to take the hardware out of her hips. They did not want the hardware in for much more than a year because then the bones could grow around the hardware. That was a very successful surgery.

September 1996, Lisa had surgery in Sioux Falls to have the G-Tube reversed. She was drinking enough from the cup and also had started to eat somewhat and we had not used it very often anymore since she would take Dimetapp and other liquid medications ok. It was time to make that big decision. We had it done and thinking back, what would we have done without it? Lisa I don’t think would have survived. The G-Tube is easy to use it is just something else to get used to.

June 1997 she had some hand surgery on one her hands to deepen the webspace. When that surgery was over another team of doctors came in and started on her 2nd cranial facial surgery. This was pretty involved. The completely shaved her head. She had a bump on her forehead (it had been like that for years) so they redid the forehead to make it nice and smooth. They took bone from the back of her head which was round and smooth and put that in the forehead. They put the forehead in the back of her head. It’s like they flip flopped the forehead and the back of her head. They took rib bone and put that in the bridge of her nose to make that look more normal and then they moved her eyes closer together. With this syndrome the eyes are not as close together as normal. Again, she came out of the surgery looking swollen and black and blue but not as bad as the 1st surgery in 1989. Technology has come along way since then. They had a turban on her for a little while but it was just a couple of days. They had given Lisa a medication (I’m not sure of the name) but it was something they give so she would not remember any of the pain that she went through. The doctors referred it to us as “The I Don’t Care Medicine” We had asked if we could have some of that and of course they said no. It was still hard to see Lisa like this but we knew what to expect since we had been down this road before. The hardest part was waiting. We got word that they had started surgery at 9:20 AM but we did not get to see her until 10:00 PM. Yes, 12 hours later. They had messengers that gave us updates on how she was doing. Since we had been going to Rochester for quite some time, we liked to eat at the Rainbow Café. It was right across the street from St. Mary’s hospital. We got to know a waitress by the name of “Mick”. She and Lisa have become good friends. When Lisa was in the hospital for her craniolfacial surgery, we would go to this café and Mick would always ask “How’s our little girl doing?” After a few days, we were able to take Lisa out on a 1 hour pass, so we took Lisa in a wheelchair to the Rainbow. There Lisa got ice cream. Mick and Lisa got to see each other. Mick is to this day a very good friend of ours. We try to see her every time we go to Rochester. We have even been invited out to their home for meals. It is nice to be able to get a way from Rochester for a while. Do something different. It would not be a successful Rochester trip if we did not get to see Mick.

Since she had her cranial surgery in June and it was so involved, Lisa did not go to daycare very much in the summer of 1997. The personnel from the daycare contacted me and asked if the daycare kids could come to our house to throw Lisa a birthday party. We arranged to have that done and we also contacted the local newspaper and they did a story on her. I saw the director of the daycare a few days before Lisa’s birthday and asked her how many kids would be coming? She said close to 30. They brought a big bus and dropped the kids at the end of the street and they walked up to the house. They brought cake, juice and presents. It was a birthday that I will never forget. The daycare has always been very accommodating to Lisa’s needs.

March 1999 Lisa had 10 teeth pulled. These were baby teeth and supernumerary.

November 15, 2000 Lisa had her top 4 teeth exposed. This was done by an oral surgeon. That surgery went very well. It was a same day surgery. While Lisa was in the recovery room he came to visit with us. He had told us that we should make an appointment to see an orthodontist in about 4 weeks. We had to take her back to see him in 2-3 weeks so he could take the packing off. He took the packing off and when I saw her mouth, I got weak. I had been through a lot with Lisa but I understood why he had said to make the orthodontic appointment. Lisa’s teeth were really crooked. We went out and bought a water pik. There was no other way of getting her teeth cleaned out. They were bad.

July 12,2001 Lisa had her left eardrum repaired. This had to be done because Lisa no longer had tubes in her ears but her hearing was deteriorating in the left ear. They said we needed to close the hole. So we had this done and then after that doctor was done, an oral surgeon went in and pulled another 12 teeth. 3 of these were permanent teeth. This was done at St. Mary’s Hospital in Rochester. This was all supposed to be same day surgery but Lisa just did not come out of things the way they had wanted her too. There was a lot of bleeding from the teeth being pulled and since we lived 4 hours away from Rochester, they kept her overnight for observation. We got to come home about 12:00 noon on July 13th

August 16, 2001 we had to go back to see the ENT that closed the hole in the left eardrum. He said that it looked like things were healing well. There had been no drainage. We had to continue to put drops in the ears for another couple of days. He said that she could go swimming in 1 week without earplugs. We just needed to get a hearing test done in 2 months. The doctor in Rochester told us before she had the hole in the left ear closed that we may need to put another tube in her ear. On the way back from Rochester we stopped in another town to see a pediatric dentist. This was a scheduled appointment. Her teeth looked ok and she had no cavities

October 19th, 2001 we took her to the local audiologist for her hearing test. We found out that she has a 60% hearing loss in her left ear. I got in touch with an ENT that comes to Marshall from the Twin City area and we got an appointment to see him when he came to town. (I did not make this appointment until I talked to our doctor in Rochester) The doctor in Rochester said that he had heard of this doctor and several people that I know had said that he is very good. The doctor in Rochester and the audiologist both said that it is probably fluid buildup and a tube will correct this. The doctor that we saw that came from the Twin City area did not think it was fluid. He had recommended that we get a CT Scan of the ear because it could be a bone problem since there are problems with the bones due to her having Apert Syndrome. Saw this doctor for the 1st time on November 9, 2001.

November 13, 2001 took Lisa to Sioux Valley Hospital in Sioux Falls to have the CT Scan done. I have said that I wanted a copy sent to both doctors. The doctor in the Twin Cities and also Lisa doctor at the Mayo Clinic. I received a voicemail from the doctor in the Cities that said yes, she does need another tube. He said that she had some abnormalities of the ear, which we already knew and that there appears to be fluid buildup. This was rather disturbing to me because I tried to tell him the 1st time we saw him that both Rochester and our local audiologist had recommended another tube. This is one thing that does upset me. When we tell doctors what is wrong with our kids (especially after 2 people had stated it) and they don’t believe us. Sometimes, doctors need to listen to parents because we know our children best. On Friday December 14th, we took Lisa back to see the ENT. On January 10, 2002 Lisa had another tube put in her left ear.

The week of June 24th 2002 we spent in Rochester. Again we went through the craniolfacial clinic. We had a lot of x-rays taken, saw the ENT, Orthodontic, Genetics, Hand Surgeon, and several more doctors. We found out that Lisa had an enlarged spleen. When we saw her doctor in Rochester that was following this, she said that her spleen was about 1 ½ times the normal size and that it was time to take it out. She wanted the surgery to be in Rochester but we looked again to a doctor in Sioux Falls.

On August 9, 2002 Lisa had her spleen removed in Sioux Falls by the same pediatric surgeon that had reversed her G-Tube. Since Lisa does not have a spleen she will be on penicillin twice a day for the rest of her life and also she needs to take folic acid once a day for the rest of her life.

Lisa is a very unique individual. Lisa has always been a very happy child. I don’t know what I would do without her. Lisa is accepted very well in school by her peers. She is in Special Education classes for Math and Reading. She is in an adaptive Phy Ed class. She is with the rest of her class for everything else. She does have a paraprofessional with her when she is in the regular classroom to help keep her focused, on task and she also helps her in small group. Her tests are also modified for her. Lisa’s tests are a lot of multiple choice.

We have to be careful with Lisa. We recently found out that she has fused vertebrae’s in her neck. If she would fall or jar her neck, it could pinch the nerve that controls her breathing and it could be life threatening or life ending. Her paraprofessional does assist Lisa off the bus and onto the bus at the end of the day if it is icy.

I have nothing but good things to say about our local school system. Everyone that has come in contact with Lisa has always treated her well. When she was born they said that she could be mentally retarded. This was a trait of this syndrome but the school system has done a wonderful job with her. Lisa is mildly retarded. Lisa can read very well, but has a problem comprehending what she is reading. Spelling words are very easy for her. When she used to bring home a list of spelling words, she rattled them off. She’s a very good speller. Math is hard for her. Counting money is not an easy task either. There are many times when she acts like a normal child. We all know that she will never be the “A” student but that is ok. I send a notebook back and forth daily so the teachers or her paraprofessional can keep me updated on what is going on in school. When I ask Lisa’s what she did in school today? She will say “I don’t know”. This is a good way for me to communicate with them too. I have done this for years. She has always had wonderful paraprofessionals working with her. I have not had any complaints at all about the school system. At the end of a school year I leave it up to them to place her with the teacher that they feel will be a good fit for her and again, I have no complaints. She has had male and female teachers and they have both been wonderful to work with.

Lisa does wear glasses and hearing aids. She also has a FM System in the classroom setting. This is worn by the teacher and then just amplifies things for her. She has been through so much in her life. I know that I could never go through what she has. She is a tough young lady.

One of Lisa’s previous Special Education teachers invited me on 2 different occasions to talk to her class about Lisa. It was a class that she taught at our local University. The first time I went in to talk to the class Lisa did not come with me. The second time I was asked to speak I did take her along so the students could see her. It was fun but I was nervous. There is so much to talk about. I also brought pictures to show.

Lisa is active in Special Olympics. She competes in Track and Field in the spring and then bowling in the fall. This spring in track and field Lisa did the softball throw, standing long jump, 100 meter dash and was part of the 4 X 100 meter relay. When it comes to bowling she can’t hang on to a bowling ball like everyone else because her ring and middle fingers are still fused and she can’t bend her fingers. Lisa has to pick the ball up, go to the end of the lane, put the ball down and roll it down the alley. She does pretty good. It is amazing how she adapts to things. She has had a peer helper. This is a high school student that comes over to the school and spends some time with her.

Lisa loves sports. (basketball, football and baseball) She enjoys music, watching TV, videos as well as the computer. She loves to spend time with her dog Maggie. No matter where we go, it seems that there is someone that knows her. Kids will see her at different places and they always say “Hi Lisa”

Lisa is very special and she always has a smile on her face. This is just the way Lisa is. She’s a miracle child. I could not imagine going through life without her. Even though she is a teenager, she will always be my baby. Lisa has taught us as parents and others that life is wonderful. Everyone loves her because she is that “Special Child”

This page was updated January 18, 2007

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