Trev had his cardiology appointment a couple days before Christmas. I was brave and took the girls with me too... What was I thinking!?! Kara was only a few days out of surgery and still not feeling that great. This is the first time the girls have come. It was interesting to say the least!
I was hoping to get in have the tests done and hear nothing has changed... After the echo, EKG and his cardiologist looking him over he had a funny look when he looked at me and then looked back at Trev. He asked Trev how old he was and when his birthday was... He wants to begin stress tests now! We were hoping to wait until Trev was 10 to start this! He is only 7! He said that his right ventricle had grown larger and it is time to start the tests to see how is heart is dealing with the stress of exercise. He wants the tests completed within the next two months. Depending on the outcome of the tests will determine if Trev gets a valve and conduit this year. (He currently does not have a pulmonary valve or conduit. They took those out when he was a baby.)
His cardiologist also wants him practicing on a bike so Trev will be comfortable riding a bike for his stress test. Since we do not have one we were able to rent one for a month. Trev can barely reach the pedals :) He is able to ride it for about 10 minutes before stopping. Hopefully that is not putting stress on his heart! We have the test scheduled for the end of January. In February he will go in for a cardiac MRI dye test. For this one he will be under general anesthesia. Between him and Kara will be seeing the inside walls of Children's a lot these next couple of months!
Trev has had some anxiety about these tests. We are trying to talk him through it and showing him pictures online and talking to people that have had these done. On a good note he is in the 75% for height! He is growing like a weed... I think that is a good sign :)
January 2, 2013
December 23, 2012
Recovery
Recovery was tough! She had no balance at all! She could not stand up let alone walk. So we set up her bed downstairs and Daddy stayed with her each night until she had better control of her balance and she no longer needed medication at night.
The first couple days she was on 5 different meds with over 20 doses a day between them all! We were waking her every couple hours at night. We were EXHAUSTED! I forgot how tough it is to sit and cuddle your baby all day. She enjoyed many movies, shows, popsicles and ice cream during her recovery. She had so much I was afraid it was going to become a daily need for her. But one day she just stopped asking! So we were not about to ask her if she wanted any!
After being on meds round the clock the first couple of days we could finally start weening her. By the end of the week she was only on 2. She took them without any complaint. Except for the ear drops... But I think I would complain too :) She had those for 3 weeks 3 times a day. The biggest challenge by far has been keeping water out of her ears while bathing. We have to keep this up for another couple months! The other hard part is making sure she does not get her ear hit or is too active for the first 3 weeks. 4 year olds are hard to keep down!
Kara now has a surgery ear as she calls it. We haven't told her she is having another one yet. I wonder how she will react to that news!?!
The first couple days she was on 5 different meds with over 20 doses a day between them all! We were waking her every couple hours at night. We were EXHAUSTED! I forgot how tough it is to sit and cuddle your baby all day. She enjoyed many movies, shows, popsicles and ice cream during her recovery. She had so much I was afraid it was going to become a daily need for her. But one day she just stopped asking! So we were not about to ask her if she wanted any!
After being on meds round the clock the first couple of days we could finally start weening her. By the end of the week she was only on 2. She took them without any complaint. Except for the ear drops... But I think I would complain too :) She had those for 3 weeks 3 times a day. The biggest challenge by far has been keeping water out of her ears while bathing. We have to keep this up for another couple months! The other hard part is making sure she does not get her ear hit or is too active for the first 3 weeks. 4 year olds are hard to keep down!
Kara now has a surgery ear as she calls it. We haven't told her she is having another one yet. I wonder how she will react to that news!?!
December 14, 2012
Kara's BIG day!!
Kara has been SO excited for her surgery and to get a "line" just like big brother! Well that day has finally come!
Our wonderful neighbors took care of Allie and Trev while we headed down to the Children's Hospital for Kara's ear surgery. We left around 7 to get to the hospital for check in time at 8:30. Well we ran into a little snag along the way! A semi truck had rolled earlier that morning so we were not going anywhere! We called the hospital and told them what was going on and they said that was fine. We still had plenty of time. We finally arrive at the hospital a little late. Kara has her Rudolph with her and is ready to go!
We get called back to go in for prep and Kara gets to put on a gown (that is WAY to big for her) and socks (which are WAY to small for her!) We ended up getting new socks and Rudolph easily fit into the smaller socks :) Kara was a rock star as they got her height, weight, blood pressure and all that good pre op stuff. She enjoyed sitting in the chair watching tv while we were waiting. Surgery ended up being over an hour late! Kara was getting very hungry and thirsty! We tried to take her mind off of it. I too was very hungry and thirsty as we couldn't really eat either as we were with her the whole time. Finally it was time to head back to the OR. Scott got his has mat suit on and took her back until she fell asleep. She was a rock star throughout everything! SO brave!
My Dad had met us there so we hung out with him there. Surgery took longer than expected so that was nerve wracking. In the cafeteria they had tables set out where they were selling gifts for the uncompensated care fund. We did a little shopping. Ok. Maybe more than a little. But it was close to Christmas and we still needed gifts. PLUS it went to a great cause!
We decided to get something to eat and of course as soon as we sit down to eat our pager goes off! Time to see our baby girl :) We first meet with the surgeon. He said she did great BUT it was a lot more complicated than expected. Instead of one growth in her ear she had SEVERAL all over her ear. He explained this is rare and he has NEVER seen anything like it. As of now he was able to preserve the ear bones and reshape her eardrum but we do not know if this will last. She goes back in 6 months for surgery number 2. They will no more then. He told us we have a long road ahead of us and we are not out of the woods yet. He also told us to decide who was staying over night with her and that visiting hours are over at 8pm. If there was a child that would have trouble keeping things down it would be her as they had to do so much extra work in her ear.
We then go back to recovery and get our baby girl. She is just waking up and has a big blue bandage on her head and her ear is covered with guaze and bandages. 20 minutes later the nurse tells us we will be going home!?! Um... The surgeon just said she is staying the night... SO it turns out that Kara is handling everything well enough that we get to go! I'm not too sure about this... Kara doesn't care as long as she gets a wheel chair ride :)
So an hour later we are discharged and on our way home! She is a rock star just like her big brother!
Our wonderful neighbors took care of Allie and Trev while we headed down to the Children's Hospital for Kara's ear surgery. We left around 7 to get to the hospital for check in time at 8:30. Well we ran into a little snag along the way! A semi truck had rolled earlier that morning so we were not going anywhere! We called the hospital and told them what was going on and they said that was fine. We still had plenty of time. We finally arrive at the hospital a little late. Kara has her Rudolph with her and is ready to go!
We get called back to go in for prep and Kara gets to put on a gown (that is WAY to big for her) and socks (which are WAY to small for her!) We ended up getting new socks and Rudolph easily fit into the smaller socks :) Kara was a rock star as they got her height, weight, blood pressure and all that good pre op stuff. She enjoyed sitting in the chair watching tv while we were waiting. Surgery ended up being over an hour late! Kara was getting very hungry and thirsty! We tried to take her mind off of it. I too was very hungry and thirsty as we couldn't really eat either as we were with her the whole time. Finally it was time to head back to the OR. Scott got his has mat suit on and took her back until she fell asleep. She was a rock star throughout everything! SO brave!
My Dad had met us there so we hung out with him there. Surgery took longer than expected so that was nerve wracking. In the cafeteria they had tables set out where they were selling gifts for the uncompensated care fund. We did a little shopping. Ok. Maybe more than a little. But it was close to Christmas and we still needed gifts. PLUS it went to a great cause!
We decided to get something to eat and of course as soon as we sit down to eat our pager goes off! Time to see our baby girl :) We first meet with the surgeon. He said she did great BUT it was a lot more complicated than expected. Instead of one growth in her ear she had SEVERAL all over her ear. He explained this is rare and he has NEVER seen anything like it. As of now he was able to preserve the ear bones and reshape her eardrum but we do not know if this will last. She goes back in 6 months for surgery number 2. They will no more then. He told us we have a long road ahead of us and we are not out of the woods yet. He also told us to decide who was staying over night with her and that visiting hours are over at 8pm. If there was a child that would have trouble keeping things down it would be her as they had to do so much extra work in her ear.
We then go back to recovery and get our baby girl. She is just waking up and has a big blue bandage on her head and her ear is covered with guaze and bandages. 20 minutes later the nurse tells us we will be going home!?! Um... The surgeon just said she is staying the night... SO it turns out that Kara is handling everything well enough that we get to go! I'm not too sure about this... Kara doesn't care as long as she gets a wheel chair ride :)
So an hour later we are discharged and on our way home! She is a rock star just like her big brother!
November 24, 2012
Congenital Cholesteatoma
We took the girls in for a routine well child exam. It turned out Kara had a bad ear infection. But the Dr. kept saying it didn't look right. But not to worry about it because the ear infection is just really bad and that is why the eardrum does not look right. So sweet Kara was put on a heavy dose of antibiotics and we were to go back in two weeks.
Two weeks pass and Kara has an appt with her Dr. The infection is cleared but the strange mass is still in her ear. He thinks it is a cholesteatoma but he is not certain so we are given a referral to the ENT. He said maybe we would be lucky and it is a bead in her ear, but he does not think so.
Since it can takes weeks to get into Children's as a new patient I went to the local ENT to get an official diagnosis. We were seen two days later. They confirmed it was a Cholesteatoma. Kara had a hearing test in which she failed on the ear with the mass in it. I never even knew she had some hearing loss! They told us Kara would have to have surgery and they would send all the info into Children's so we could bypass having the tests done again.
I was able to get a pre op appointment about two weeks later. Kara and I headed to Children's Hospital. She was sporting her fancy white flower girl dress, a tie dyed Dora hat and her black Halloween cat :) The surgeon met with us and he hooked Kara up to "ear" tv. It was pretty cool that the tool they used to look in her ear had a camera on it so we could all see it up close on the tv. We had a couple dates available to us. One right after Thanksgiving and one a couple weeks before Christmas. I chose the latter of the two so Kara would only have to miss one day of school instead of a couple weeks.
Kara and I then went and had lunch in the cafeteria. I explained to her that she would be having surgery and she was pretty excited! She was going to "get" a surgery just like her brother and have a line! I let her pick whatever she wanted for lunch that day. It consisted fries and Doritos! Hey! It is not everyday your child will be having surgery and I want the kids to think of Children's as a happy place :)
After lunch we went to the play room where Kara played a little and painted. Her white dress ended up a little purple and red but nothing that wouldn't come out in the wash. We met with a child life specialist and she gave Kara a play Dr. kit and a gown for her kitty so she could practice on it. Kara LOVED it!! The kids have been playing Dr on their animals and each other for weeks now!
The thing Kara is looking for the most is unlimited movies, shows, and ice cream!!
Two weeks pass and Kara has an appt with her Dr. The infection is cleared but the strange mass is still in her ear. He thinks it is a cholesteatoma but he is not certain so we are given a referral to the ENT. He said maybe we would be lucky and it is a bead in her ear, but he does not think so.
Since it can takes weeks to get into Children's as a new patient I went to the local ENT to get an official diagnosis. We were seen two days later. They confirmed it was a Cholesteatoma. Kara had a hearing test in which she failed on the ear with the mass in it. I never even knew she had some hearing loss! They told us Kara would have to have surgery and they would send all the info into Children's so we could bypass having the tests done again.
I was able to get a pre op appointment about two weeks later. Kara and I headed to Children's Hospital. She was sporting her fancy white flower girl dress, a tie dyed Dora hat and her black Halloween cat :) The surgeon met with us and he hooked Kara up to "ear" tv. It was pretty cool that the tool they used to look in her ear had a camera on it so we could all see it up close on the tv. We had a couple dates available to us. One right after Thanksgiving and one a couple weeks before Christmas. I chose the latter of the two so Kara would only have to miss one day of school instead of a couple weeks.
Kara and I then went and had lunch in the cafeteria. I explained to her that she would be having surgery and she was pretty excited! She was going to "get" a surgery just like her brother and have a line! I let her pick whatever she wanted for lunch that day. It consisted fries and Doritos! Hey! It is not everyday your child will be having surgery and I want the kids to think of Children's as a happy place :)
After lunch we went to the play room where Kara played a little and painted. Her white dress ended up a little purple and red but nothing that wouldn't come out in the wash. We met with a child life specialist and she gave Kara a play Dr. kit and a gown for her kitty so she could practice on it. Kara LOVED it!! The kids have been playing Dr on their animals and each other for weeks now!
The thing Kara is looking for the most is unlimited movies, shows, and ice cream!!
September 29, 2012
Allie and Kara are 4!!
Allie and Kara were SO excited to turn 4. Again it was another beautiful late summer day on their birthday... I think they have had better luck with with weather than their brother who is born in the middle of summer!
The girls have wanted a rainbow Star Wars party for the past 6 months...This was an interesting party to plan indeed! We had two pinatas... One rainbow, one Darth Vader. We had Star Wars cookies that we made ice cream sandwiches out of. Rainbow ice cream. The plates, cups and napkins were a mix of rainbows and Yoda and Darth Vader. A perfect combination! We played some games and had Star Wars music in the back ground. We had everyone dress in their favorite Star Wars character or rainbow theme. Allie was sporting both :) The girls had a great time and celebrated with lots of friends and family!
The girls have wanted a rainbow Star Wars party for the past 6 months...This was an interesting party to plan indeed! We had two pinatas... One rainbow, one Darth Vader. We had Star Wars cookies that we made ice cream sandwiches out of. Rainbow ice cream. The plates, cups and napkins were a mix of rainbows and Yoda and Darth Vader. A perfect combination! We played some games and had Star Wars music in the back ground. We had everyone dress in their favorite Star Wars character or rainbow theme. Allie was sporting both :) The girls had a great time and celebrated with lots of friends and family!
August 25, 2012
Blue Angels
I braved going to watch the Blue Angels with the kids as Scott had to work that day. We took my niece, Kenzie, to help with the kiddos. She was a HUGE help! It was VERY hot outside. 90 degrees and not a lot of shade. Allie and Kara had their first bus ride and they really enjoyed it! We went with about 10 other families and had a wonderful experience!
We got to go to the hydropits and tour the area. Their were lots of hydroplanes and we got to watch them practice. We also met a lot of the drivers who were nice enough to sign autographs and get their pics taken with the kids. The kids even got to sit in a hydroplane, although the girls decided they just wanted to stand up next to it :)
After the tour we went by the water and ate lunch. We had to walk a little ways to get to the benches and with the heat the girls were done walking!! Two of our guides carried Allie and Kara on their shoulders. They weren't too sure at first then the girls were smiling and having a great time! It was a beautiful day and the kids did great. Their were clowns making balloon animals for the kids while we waited. After awhile we got to watch the the Blue Angels practice... It was absolutely AMAZING!! A day we will never forget!
We got to go to the hydropits and tour the area. Their were lots of hydroplanes and we got to watch them practice. We also met a lot of the drivers who were nice enough to sign autographs and get their pics taken with the kids. The kids even got to sit in a hydroplane, although the girls decided they just wanted to stand up next to it :)
After the tour we went by the water and ate lunch. We had to walk a little ways to get to the benches and with the heat the girls were done walking!! Two of our guides carried Allie and Kara on their shoulders. They weren't too sure at first then the girls were smiling and having a great time! It was a beautiful day and the kids did great. Their were clowns making balloon animals for the kids while we waited. After awhile we got to watch the the Blue Angels practice... It was absolutely AMAZING!! A day we will never forget!
August 3, 2012
Ah...the Fair
We took the kids to the local fair this weekend. They had a blast! It is a one day fair with animals, pony rides, games, fun booths and of course food! We started the morning off by going on pony rides. The girls did not want to get off... They had so much fun they started crying when it was over. What a difference a year makes! Last year they cried when we tried to put them on the ponies!
We then went to the petting farm. The bunnies were the big hit here. Baby Dutch bunnies were everywhere! Got me thinking of when I was younger and raised and showed bunnies. I would love for my kids to get into 4-H also. With Lops of course because those are the superior bunnies to show:)
We visited the rest of the animals and walked along the booths. We watched some zumba and listened to great local music. The kids loved the snow cones. They each had a rainbow one. The girls enjoyed it a little too much and it was all over the front of them!
The kids got to tour firetrucks and they even got to use the hose and spray water out of it! There was a "burning" building they had to put the flames out on it. They toured a little house and learned about safety hazards and how to prevent them. Also, what to do in case of fire. They got to crawl out of the "second" story window. (It was a camper they made into 2 stories.)
The kids also played games like finding money in the haystack. They ate lots of cookies and snacks then it was off to swimming for a birthday party.
We then went to the petting farm. The bunnies were the big hit here. Baby Dutch bunnies were everywhere! Got me thinking of when I was younger and raised and showed bunnies. I would love for my kids to get into 4-H also. With Lops of course because those are the superior bunnies to show:)
We visited the rest of the animals and walked along the booths. We watched some zumba and listened to great local music. The kids loved the snow cones. They each had a rainbow one. The girls enjoyed it a little too much and it was all over the front of them!
The kids got to tour firetrucks and they even got to use the hose and spray water out of it! There was a "burning" building they had to put the flames out on it. They toured a little house and learned about safety hazards and how to prevent them. Also, what to do in case of fire. They got to crawl out of the "second" story window. (It was a camper they made into 2 stories.)
The kids also played games like finding money in the haystack. They ate lots of cookies and snacks then it was off to swimming for a birthday party.
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