Saturday, December 31, 2005
We celebrated New Year’s Eve here at Tea. The evening got off on a rocky start. Brianna must think she is weightless and used one of our glass end tables as a step stool and fell thru it. It prompted a trip to the ER and Brianna is sporting 4 stitches on her right knee! When Brianna was telling the Dr what happened she said, “I done it before and it never broke! That would be Brianna, the Dr told her to slow down and take her time and get a step stool next time. My bet is she finds another creative way to not have to take time out and get the step stool. Kaylee, Dani, Dan, and myself lasted until Midnight. Brianna asked to go to bed at 10:30pm.Friday, December 30, 2005
Dani went back to the Chiropractor today. This is the first time she has been back since the surgery. He said it was awesome to see her move so much and be so alert.Wednesday, December 28, 2005
OT brought out more toys for Dani to play with. We did order some switches to modify Dani’s toys so she can play. Thanks to Uncle Tony with helping up put them in, she can now play with some of her Christmas toys!
Tuesday, December 27, 2005
Dani ate cereal for the first time. Well, other than getting some of Abby’s every now and then! She did pretty good, but really didn’t care for the juice we tried to give her.
Therapy went good today. Dani will still fight her when they try to put her on her tummy. Dani is getting more control of her head.
Monday, December 26, 2005
Nurse Brianna had to take care of the household since she was the only one not sick. She thought she was hot stuff that she got to stay up and watch movies while everyone else slept! She also got to play with Kaylee and Dani’s toys. Kaylee did not think that was fair!
Sunday, December 25, 2005
We had Christmas Dinner at Grandma Donna’s and Grandpa Durand’s. Uncle Tony, Joana, Maria, Uncle Dustin, and Stacy came up. Uncle Chris, Aunt Suzie, Uncle Kevin, Cousins Abby and Grace were there to celebrate Dani’s and Abby’s first Christmas!
Saturday, December 24, 2005
Santa came to the German house! Santa had an early morning stop Christmas Eve and brought presents for Dani, Brianna and Kaylee. Kaylee and Brianna could not wait for Dani to wake up from her morning nap, so they opened their gifts up around 9AM. They did leave Dani one gift from Santa to open! Some of Dani’s gifts are a new rocking chair, a new adjustable high chair, many noisy toys, and switches so Dani can play with the toys. Brianna and Kaylee got foxy boots, books, and a new BIKES.
We drove back to Sisseton to celebrate Christmas. This is the longest trip Dani has had since the cast was put on. We went to Church and Kaylee and Brianna were angels again for the children’s mass. Cousin Gracie didn’t want to be one, so throughout the whole mass, she kept asking, “when are Kaylee and Brianna coming?” After mass, we went to Great Grandma Aadland’s for supper. After we ate, we went back to Grandma Donna’s and Grandpa Durand’s to open more presents!
Friday, December 23, 2005
Kaylee, Brianna, and Joana came with to go to the movie NARNIA, while Dan and Dani stayed home.
Monday, December 19, 2005
The family dog, Peanut, passed away today. She was 9 ½ years old. Peanut was a member of the family and will be missed.
Sunday, December 18, 2005
Kaylee and Brianna helped celebrate Dani’s first Christmas with the German side. Relatives that came down to Tea to celebrate with them was Great Grandpa Don and Grandma Ann, Grandpa Ray, Uncle Greg, Heather, Cousins Alex and Angie, Aunt Nancy & Uncle Mike, Cousins Ashley and Alyssa.
Wednesday, December 14, 2005
OT and PT both came out today to help get Dani in different positions so she isn’t always on her back.
Tuesday, December 13, 2005
Dani attended Kaylee and Brianna’s Christmas concert at school.
Monday, December 12, 2005
Dani got to come home from the hospital today. We got home before Kaylee and Brianna got home from school and they were surprised little sister was home!
Saturday, December 10, 2005
Dani’s pain meds were turned down ½ way today. Once she is off this and is eating better she can go home. Dani had a really good night sleeping. Some of her visitors were Grandma Donna, Tony, Joana, and Tina. Big sisters Kaylee and Brianna were in Brookings at the Heiers baking cookies and Ice Skating! Dani was moved to a regular room, instead of the ICU.
Friday, December 09, 2005
Dani’s surgery went better than expected. Her femur slipped right into the hip socket. The hardest part of her surgery was getting the IV’s in. This took an hour and she has the bruised arms to prove this was quite the task to do. Thank goodness she was already put under when they were doing this. Surgery started about 9 AM and finished just before noon. Dani seems to be tolerating the cast really well. She has a red cast for the Christmas season. She will have the cast on for 8-9 weeks. She is a treat to hold and change diapers! Some of her visitors were Big Sisters Kaylee and Brianna, Grandma Donna, Aunt Suzie, Cousins Gracie and Abby, Tony and Joana.
Wednesday, December 07, 2005
All CLEAR. Dani’s doctor gave her the all clear for surgery on Friday. Also, Dani’s PT session went really good today.
Monday, December 05, 2005
Dani had an awesome OT session. In the photo gallery are pictures of the Elmo she played with.
Friday, December 02, 2005
Dani had an appointment with the surgeon today to go over everything before the big day next Friday. We went of the pros/cons of the surgery and risks. Dani will have to spend 6 days in the hospital and the first night will be in the ICU so they can keep a close eye on her. He did say he thinks the cast will be on for only 8 weeks instead of the 12 that he first thought. Dani just needs to get cleared for surgery from her pediatrician. This appointment is on Wednesday.
Monday, November 28, 2005
Happy 8th Birthday Kaylee!
Sunday, November 27, 2005
In celebration of Kaylee’s Birthday, we went to the new Harry Potter movie. Dani went to over to Amanda and Brian’s to get even more spoiled.
Saturday, November 26, 2005
Dani started to reach for toys! There are pictures of this in the photo gallery.
Saturday, November 26, 2005
Dani started to reach for toys! There are pictures of this in the photo gallery.
Thursday, November 24, 2005
Dani and Abby both celebrated Thanksgiving for the first time! We also had a birthday party for Kaylee and Brianna.
Tuesday, November 22, 2005
Cousin Gracie came to stay over night until Thanksgiving.
Friday, November 18, 2005
Big sister Brianna lost her first tooth.
Friday, November 18, 2005
After much discussion and consultation with Dani’s doctors and therapists, Dan and I have decided to go forward with doing the hip surgery on December 9th. Both her SF surgeon and the Shriner’s Hospital agreed that the surgery needed to be done, what they didn’t agree on is when to do it. The Shriner’s Hospital wanted to wait until she is 18-24 months so she is stronger to handle this surgery. Her SF surgeon said it is easier to put hips in before 6 months of age since her hips are cartilage instead of bone. All the risks are there whether we do the surgery at 5 months or 18 months, the only thing we lose is time. Since Dani will be in a body cast for 3 months, she will lose most, if not all, her muscle strength she has gained since she was born. But if we waited until she was 18 months, she would lose this as well, and we aren’t sure how much more of a setback it would be at 18 months. Dan and I both believe she will walk and want to give her every opportunity to do this by putting her hips in place now so when she is ready to walk, she has a stable base to work from. Instead of waiting for when she is 18 months and casting her when she may be attempting to walk.
Friday, November 18, 2005
Dani had a follow up appointment with the Neurologist. Everything is going well She is now 11 lbs 12.5 oz and is 23 1/8 inches long!
Wednesday, November 16, 2005
Dani was fitted for new splints. We went thru the Children’s Care Hospital this time, since this is where Dani’s therapists work out of as well.
Wednesday, November 16, 2005
Today was Dani’s last day of daycare. I will be staying home with Dani to bring her to all her appointments/therapy sessions.
Monday, November 14, 2005
Thank you Grandma Donna for watching Kaylee and Brianna while Dan and I brought Dani to the Shriner’s Hospital! It was awesome to get to doctors that are used to working with children like Dani. We did get conflicting information on the hip surgery. The Shriners recommended to wait until Dani is either 1 or 2 before they would put her thru that. They would like to wait and see how Dani does before they would go forward with this type of surgery due to risks involved by doing it at this age. They did leave the decision up to us, but said the surgery would not be done there until she is old enough. Another concern they had was the cast Dani would have to wear. Dani has come a long way on her own, they feel the casting would set her back and she would have to regain her muscle strength all over again. Dani is starting to move her legs more. The doctor said the reason she does not move her legs is because she does not have enough muscle strength to do so. We also met with OT/PT and they were impressed with Dani’s progress. They were amazed to look at Dani’s first picture to now. It was good to hear even though Dani has problems, she is mild compared to what they are used to dealing with. They said when Dani gets older, they have special equipment we can use if she needs help eating, dressing, bathing, standing, and walking. We go back in 6 months to recheck everything and to see a hand doctor. The hand doctor will focus on is Dani’s shoulders and elbows.
Sunday, November 13, 2005
Dani had her first “big” shopping trip at the Mall of America.
Saturday, November 12, 2005
We are going to the Cities for our upcoming Shriner’s visit on Monday.
Friday, November 11, 2005
Dani had her 4 month check up today. Dani went from wearing preemie clothes to 3-6 month clothes in less than a month. Dani now weighs 11 pounds 4 ounces (still in the 10% range), and is 24 inches long (she jumped from the 10% to the 45%)! Big sister Brianna, had her 6 year checkup as well. Brianna is 42.5 pounds (45% range) and 44.5 inches long (40% range).
Tuesday, November 08, 2005
We meet with the Orthopedic Surgeon today. The outcome of the appointment was that he would like to do the hip surgery on Dani. This will be done on both legs and what the dr will do is move the femur in place to connect with her hip bone. He said it will be a minimum of 5 hours for the surgery and 4 days in the hospital and Dani will be in a body cast for 3 months. What he hopes is when Dani is able to stand, she will have a stable base to work from. The surgery will not guarantee that she will start moving her legs or even walk. There are some downsides to doing this surgery as well. For one, if Dani does not walk, later in life he may have to take the hips out for more comfort for Dani. Another is, since her joints are so loose, she may knock the hips out. But there is a chance her hips will stay in place, and never have to go thru another hip surgery again. She is tentatively scheduled for surgery December 9th, here is Sioux Falls. But we are seeing what the Shriner’s Hospital have to say before we go forward with the surgery.
Tuesday, November 08, 2005
Dani graduated to her own bedroom! She finally outgrew her cradle and is now sleeping in her crib.
Sunday, November 06, 2005
Cousin Ashley and Cousin Alyssa came to visit!
Saturday, November 05, 2005
Cousin Gracie and Cousin Abby came to visit! Abby is starting to crawl. Even though it is a slow crawl (for now) she can still be very destructive! Dani likes to keep an eye on her because last time Abby was too quick and grabbed Dani’s hair!
Friday, November 04, 2005
Dani got fitted for new splints today! Once again she outgrew another pair.
Thursday, November 03, 2005
Happy Birthday Brianna & Daniel! In celebration of their birthdays, we went to Chuck E Cheese for supper. Brianna thought it was an awesome way to celebrate her 6th birthday, but Dan on the other hand, wasn’t too crazy about it. Oh well, we all survived and the girls had fun.
Wednesday, November 02, 2005
Dani had an awesome therapy session today. When she was on her side Dani reached for a toy. This is the first time we ever saw her try this. Dani is also starting to move her arms independently. She will bring her arms up one at a time, instead of both together. She is getting stronger and fighting back more on her exercises! The therapist also had her on her back with a pillow propped under her knees and she would kick her legs. She had about 4 good kicks! Dani has a bracelet that has jingle bells attached to it, so we can “hear” her move. We put this on her legs and arms.
Monday, October 31, 2005
We went trick or treating for the first time! We only go half way down the street before Dan had to go back to get the truck because Dani didn’t like the wind in her face. Kaylee was a bride, Brianna was a princess, and Dani was Shrek.
Friday, October 28, 2005
Thanks Warren for making the attachment for Dani’s carseat. We put her in it and she started to move her hands right away! Pictures of this is in the photo gallery.
Monday, October 24, 2005
Dani still does not have an diagnosis yet. One doctor thinks it is unlikely that we will get a specific diagnosis unless Dani begins to show signs of other abnormalities that are specific for a testable diagnosis. There are many more tests that they can run, but it is like finding a needle in a haystack, since they do not know what exactly they are looking for. The closest to a diagnosis is Amyoplasia (I put some new links on the home page regarding this), which accounts for about 1/3 of all cases of arthrogryposis. But even this is speculation at this point. On the positive side, Dani is improving and starting to move her arms, hands, wrists, and fingers more. Today in therapy, she would pick her head up to see the toy they dangled above her. When the therapists would move the toy to the side, she would only go to her line of vision, she has not yet attempted to move her head parallel with her shoulders. When Dani was in a sitting position, she kicked three times at a toy. Slowly but surely, she is doing different things.
Sunday, October 16, 2005
Dani just had OT and PT this week. Everything is going good. Dani is starting to move more and more each day on her own.
Tuesday, October 11, 2005
Dani has an appointment for the Shriner’s Hospital in Minneapolis, Minnesota! She is scheduled November 14th.
Monday, October 10, 2005
Dani, Kaylee, Brianna and I went back to Grandma Donna’s for a 4 day weekend. We had a nice relaxing weekend. We went over to Great Aunt Addy’s on Uncle Doug’s for Great Grandpa Steiner’s 84th Birthday. Dani got to meet Great Aunt Karen and Uncle Pat, Great Aunt Janie, and Uncle Marlon, Cousins LeAnn, Wade, Josslyn, Drew, and Dacy for the first time. Great Grandma Steiner and Great Aunt Marianne were also there. Kaylee and Brianna got to go for a horseback ride!
Saturday, October 08, 2005
Dani woke us up to eat at 3 AM! Most parents at this age are probably ecstatic if their child sleeps thru the night, but Dani finally let us know that she was hungry.
Friday, October 07, 2005
Dani reached the 10 pound mark! She weighs 10 pounds 3 ounces and is 22 1/2 inches long.
Wednesday, October 05, 2005
We met with the Orthopedic Surgeon today to go over Dani’s results from the muscle biopsy. What the doctors were looking for was a muscle disorder. The doctors thought that Dani had a muscle disorder and that is what keeps her from moving. But, with all the tests they ran, everything came back normal healthy tissue. That is both good and bad news. Good, in the sense we ruled out a muscle disorder. Bad, because what then is the cause of Dani not moving. Since the MRI that was done when Dani was in the NICU was normal as well, we have to figure out what the next step will be. The doctor was impressed with the movement Dani was doing at her appointment. But again, she only moves when she stretches or is startled. Dani should not have pain when we are doing her range of motion exercises, BUT she does have pain. The doctor is deciding if Dani should have the surgery for her hips or not. He says he can get her hips back in place, but if she does not move, this would end up causing her more pain in the long run. But on the flip side, if he doesn’t get them in place and she is indeed a walker, it will create more problems for her, like arthritis. He will be consulting Dani’s other doctors to see what our next step is. Dr. Haft is taking an active role and thankfully, will not let Dani go without help or a diagnosis. He talked of the possibility of sending Dani to the Mayo Clinic for further testing. Once again, we are waiting to see what the next plan of action will be.
Saturday, October 01, 2005
Dani is 3 months old! She had a “easy” week last week. She only had 2 appointments, her OT and chiropractor.
Friday, September 23, 2005
Dani was a trooper for her surgery today. The procedure went well. When the nurse took out her IV, we heard Dani wail for the first time. It could take up to two week before we get all the results back from the biopsy. The swelling in Dani’s leg is down, but it will be sore for the next 7 to 10 days. She is a strong little girl!
Tuesday, September 20, 2005
Dani weighs 9 pounds 12 ounces!
Tuesday, September 20, 2005
Dani’s therapist is trying out a new technique to promote Dani to move. Dani is building strong muscles, but still does not move on her own. This bungee harness (pictures of it in the photo gallery) is to bring Dani’s arm/leg to a 90 degree position, to enable Dani to touch or grab toys and to kick. Dani did start moving her arms once we got her arms up. She seemed to tolerate it for about 5 minutes and let us know that was enough. Little did she know that we were going to try the legs next. We saw about 2 good kicks with her legs in this position. She didn’t last as long in the leg position. This will help build more muscle. Right now, the only time Dani will move if she is scared or is stretching.
Friday, September 16, 2005
Whew…finally a tame week for Dani. She only had 2 appointments to go to. OT was impressed that Dani can now move her head side to side to look at things. Her favorite seems to be when Kaylee is on one side and Brianna on the other side of her. She loves to watch those big sisters! Dan said Dani was crabby for the Chiropractor visit, but Dani is improving! Dani has a very busy schedule next week, she has 6 appointments in addition to her surgery on Friday.
Tuesday, September 13, 2005
We are going forward with the muscle biopsy. Dani is scheduled for it on September 23rd at 6AM. This is a surgery where Dani is put to sleep so the doctor can cut open her left thigh to take out a piece of her muscle. The muscle will then be sent away for testing and hopefully, we should get some answers to what Dani has and go from there.
Thursday, September 08, 2005
Dani’s Occupational Therapist came to the house and worked on new positions to lay Dani down. Since the majority time Dani is on her back, the worry is she will get a flat spot on her head. We have been doing tummy time and now trying some side laying to give her some time off her head.
Wednesday, September 07, 2005
Dani weighs 9 pounds and she is 21 ½ inches long. Dani Well Baby check went good. She also got 3 shots today.
Wednesday, September 07, 2005
We brought Dani to a new Orthopedic doctor at Sioux Valley. We still don’t have any answers but seem to get more worries. We were under the impression that Dani did not move because of her hips were dislocated, but this is not the case. The doctor said children with dislocated hips can move without pain. Dani does not move and has pain when we are doing her range of motion. So, what this means there is something else going on with Dani. The Orthopedic doctor hopes that doing the muscle biopsy it will give answers to what is going on with Dani so he can start working on her hips. They took x-rays of Dani’s hips to get an idea how to help fix them. He said by the position of her hip joints, she will not be able to make the hip sockets herself, as most babies do. One option Dani has is the Pavlik Harness, but this is beneficial for babies that move. Or surgery to correct this is another option. So we are just waiting for the doctors to decide when the best time to do the Muscle Biopsy.
Tuesday, September 06, 2005
Dani got fitted for new foot splints. Her physical therapist will also come to the house for her therapy, but for now we will go to Sioux Valley to get Dani fitted for her foot splints.
Sunday, September 04, 2005
We went to Uncle Tony’s for a housewarming/birthday party.
Thursday, September 01, 2005
Dani got new hand splints today. Her new Occupational Therapist (OT) now comes to the house thru the Birth to 3 program. Jill changed the position of Dani’s thumb and now she can not get her hands out of the splint.
Monday, August 29, 2005
Today was Dani’s first day for daycare. When I picked her up she was ready for some peace and quiet to take her nap.
Friday, August 26, 2005
Dani got new hand splints today. She outgrew the old ones! She is still an escape artist and can get out of these ones too. Dani is starting to open and close her hands on her own.
Thursday, August 25, 2005
Dani had a swallowing study and an Upper GI test done today. Dani has acid reflux and hopefully with the Zantac, we can get this under control.
Wednesday, August 24, 2005
Dani is now 8 pounds 3 ounces and is 21 inches long! She falls in the 5th percentile for her weight and 8th for her height. She was also refitted for her left foot splint and got a new one for her right foot. Dani has to go back on Friday to get new hand splints.
Tuesday, August 23, 2005
We went to Chuck E Cheese to celebrate Kaylee & Brianna’s first day of school!
Sunday, August 21, 2005
We took a vacation from doctor’s visits. Tuesday night we went to Grandma Donna’s to relax. We came back home Sunday night. We visited Great Grandpa Don & Grandma Ann and Great Grandma Hahn.
Tuesday, August 16, 2005
Dani is now 7 pounds 12 ounces and is 20 1/2 inches long! Dani went to the neurologist today. They are going to wait to do the muscle biopsy until she is scheduled for another surgery. That way she isn’t just having a surgery for one thing. Dani is starting to choke when she eats so she is scheduled next Thursday for some swallowing tests and an upper GI test to see what is going on. Doctors said she still may need a feeding tube put in.
Sunday, August 14, 2005
Uncle Greg, Heather and cousins Alex and Angie came to visit Dani.
Wednesday, August 10, 2005
Dani went back to get her feet splints adjusted. She got a new splint on her left foot since she outgrew the old one. She is still an escape artist for her hand splints. For a baby that doesn’t move, it is amazing that she can get out of her splints!
Monday, August 08, 2005
Dani went to the chiropractor today and got more x-rays done. Her spine is curves out on her lower back. He will be working to try to get that in place for her.
Monday, August 08, 2005
Aunt Nancy and Cousins Ashley and Alyssa came to visit today!
Sunday, August 07, 2005
Dani went over to her Great Grandma and Grandpa Steiner’s. We also saw Great Uncle Marlon.
Saturday, August 06, 2005
We went to Webster to visit Great Aunt Debbie and Great Uncle Terry. New relatives Dani saw was Great Grandma Erma, Great Aunt Kim, Cousin Dalen, Cousin Jenny and her son Beau, and Cousin Kelli.
Friday, August 05, 2005
On our weekly visit with the pediatrician Dani weighed 7 pounds 4 ounces! She graduated to biweekly appointments!
Monday, August 01, 2005
We went to see a specialist to help Dani with her bilateral hip dysplasia (dislocated hips). We are going to get a second opinion because he isn’t going to do anything but a wait and see approach.
Friday, July 29, 2005
On our weekly visit with the pediatrician Dani weighed 6 pounds 14 ounces! Found out today, that the muscle disorder blood work is back. She did not have either of the two disorders they thought she had. We will have to do a muscle biopsy to determine why exactly she has Arthrogryposis.
Monday, July 25, 2005
We just got her first pair of splints fitted today. Dani will have to wear the hand ones for 4 hours during the day and all night. The foot ones, she will have to wear a total of 20 hours a day.
Friday, July 22, 2005
Dani went to her pediatrician today. She weighs 6 pounds 11 ounces! Still waiting on the blood work.
Monday, July 18, 2005
Dani goes to a wonderful chiropractor, Dr Marsh. He is helping Dani to get her to use her muscles. Currently, she is going to be seeing him 3 times a week.
Monday, July 18, 2005
Dani went to the Childrens Care Hospital in Sioux Falls to meet with Dr Johnson. She will oversee her progess with Arthrogryposis.
Friday, July 01, 2005
Dani was diagnosed with Arthrogryposis. Arthrogryposis (Arthrogryposis Multiplex Congenita) is a term describing the presence of a muscle disorder that causes multiple joint contractures at birth. A contracture is a limitation in the range of motion of a joint. In some cases, few joints may be affected and the range of motion may be nearly normal. In the “classic” case of arthrogryposis, hands, wrists, elbows, shoulders, hips, feet and knees are affected. In the most severe cases, nearly every body joint may be involved, including the jaw and back. Frequently, the contractures are accompanied by muscle weakness, which further limits movement. Arthrogryposis is relatively rare, occurring in approximately one in 3,000 births. Amyoplasia is the most common type of arthrogryposis seen in clinical practice and constitutes about one third of cases. Incidence is about 1 in 10,000 live births.
Dani's Journal 
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