Hi everybody,
Don't ya just love Northern IN? Only here can you have a "green" Christmas and a white Valentines Day :-) Ok, so this year it was a white Christmas but some years its not. This winter has seemed to drag on and on. BUT, the sun has been shining his face so at least it helps to lift the mood and monotony of winter.
Normally, we home school in our room in the basement. But when the gray sky's of old man winter kicked in it was rather depressing! When the sun began to shine we moved upstairs. It makes for more clean up at the end of the day but its been well worth it. To see the sun flowing thru the windows has been sooo nice! Its too cold most days for the kids to even play outside but its very nice to feel the warmth of the sun coming thru the windows.
We are so much looking forward to Spring. I can't begin to tell you how much we anticipate it!
And with Spring always comes new beginnings. New flowers, new life and new hope. We met a new doctor last week for Kelly. He was really great with her. We were all impressed. We have decided, barring anything new between now and then... to have surgery. It is pretty involved and he said quite painful but Kelly says she is ready for the challenge. She is now old enough to understand (as much as a person can) how much pain will be involved. She has done well with anesthesia the last 3 surgeries over the past year. That was biggest thing holding the medical professionals at bay before. She had a fever of 105.9 after surgery when she was a toddler so they weren't willing to give her anesthesia her for very long.
This surgery will take all day. She will be in the hospital in Indy for 5 days after and we will stay in a rehab facility for 2 weeks after that. She will then be going to Ft Wayne for Pt like always but now 2-3 times per week after rehab. And continue home PT daily as she currently does. It will be 18 months of rehab and intense PT. During the 18 months it may seem as if she has regressed but that's not the case. She will have to use her walker and wheelchair especially at first. But, the goal is at the end of the 18 months that Kelly will use her sticks for her daily walking. She can walk around our house etc right now and we hope that will even get better after surgery. There are no guarantees but if we don't do anything things will get progressively worse in the next 12 months.
They will be rotating her hips back to their normal position. They will be putting her big tendon on the side of her knee caps to pull them out and plating and screwing the knees on both sides. Some bone work, tendon work etc etc. They are planning on two doctors working on her at the same time.
Surgery is hopeful for the end of April. We are awaiting the GAIT study right now. Then we will meet with the surgeon next month so he can go over all their finding with the study, measurements, and x-rays and talk with Kelly again.
We know how hard this will be for her. We are committed to helping her thru this and know that she will do fabulous. She is so strong! Her only real question for the surgeon was "how long will it be after surgery before I can get back in the pool, cause that's my favorite PT". I truly admire her courage, I can't imagine being faced with something like this at 12!
Speaking of "12", the twins had a birthday last week! Constantly reminding us all that they will be teenagers next year! I can't cope with that. Where does time go?? :-(
We had a fun day off school, ate pizza, played games and had ice cream cake. We are taking them to the Children's Museum this week too. Josiahs bday is this weekend so we are celebrating it all at once. They love the CM, and so do we!
Josh is off work this week so he is utilizing his time to get ahead in his college classes so he can be almost finished when Kelly's surgery rolls around. Its nice having him here during the day. I enjoy spending time with my husband!
Everyone her has been pretty healthy. The normal winter colds and germs but nothing significant, thankfully! It seems everyone around is hacking and coughing or has the flu of some sort. I hope we can escape the yuckies!
We had such a nice Valentines Day. Our church had a banquet. The kids had their own thing and the adults had a very nice dinner and entertainment. It was fun!
Hope everyone is doing well.
Talk to ya soon!
Andra
Monday, February 23, 2009
Thursday, February 5, 2009
YAY!!! I finally got the pictures uploaded from Noah's trip. http://www.flickr.com/photos/barkerzoo/?saved=1
I have to say, the next time we go....it will definitely be in the winter!!! Going there in the winter was soooo nice. The weather was warm but the evenings were nice, not smothering like in the summer.
Coming back, welll... that really was no fun! It was -29 below with the wind chill the day we came home. So when we left the Orlando airport it was 60 at 8a.m. when we arrived at lunch in Indy, it was -29 with wind chill. That's 89 degrees difference. Talk about shock! It took us three days to feel "warm" again, seriously. I wore heavy sweaters and wrapped in blankets for the first few days. We decided then and there, we realllly need to move! I could get used to that weather in a heartbeat.
One of the highlights of the trip was that Noah was able to really enjoy himself. He has been having more and more arrhythmia's now that he is growing so fast. His meds go by his weight. So, as he grows they change the dosage. However, he is at his maximum right now. We got back to Riley in 2 weeks to see the cardiologist to see what our options are. They originally told us that if the problem didn't get better by his 13th bday, it wasn't going to get better so we needed surgery. At his last visit they cardio said the meds were maxed out. They will have to change his med probably. But HEAT really makes his day hard. It causes his heart to beat fast. So, when we went in August, he was pretty miserable some days in Florida.
This time was so different. He was able to do more since the heat wasn't a factor. HE wanted to try a bigger coaster, but we were afraid his heart couldn't handle it. OK, MOM couldn't handle it either :-) I went on a few small ones and that was enough for me. Not a coaster gal!
Noah had lunch with an astronaut at Kennedy. Then got his picture made. That was nice. But I think he had more fun counting the crocs on the way to Kennedy on the side of the road just as much! We were in awe. I assume they are always that way, but they were all over the place. Just kinda hanging out in the watery areas in the grass.
We went to every park at Disney. We got to see the castle all decked out for Christmas. It was beautiful. On our last night there, we stayed until midnight. The babies pooped out around 10 so I let them sleep on a bench with me directly in front of the castle while Josh and the twins rode some more rides. That was a beautiful sight to see. The castle still changed colors but the castle had an *additional* 2 million lights (we were told) for the holidays. It was stunning. So bright! I had fun just sitting there watching it. What a way to end your day!
Our flights were great. On the way home we saw the Smokie Mtns.. Noah loved that. He loves flying!
Noah says the highlight of his trip was Siemens. When you stay at GKTW they give you passes. In that packet is a code for Siemens VIP lounge. Apparently this lounge is normally for their employees and "V.I.P." guests. Although it appeared there were some offices inside as well. So, we go to Epcot expecting fun. What we got was WOOOAHHH! We were very very very wowed!
Under the big "golf ball" as Jo calls it is a top secret door. If you open it there is a teeny tiny foyer. Reminds you of Charlie and the choc factory. This computer voice says "Welcome to Siemens, please enter your VIP code." We did and then this Jetson like door slid open in the wall. We had to walk this long mysterious hallway to an elevator. When we got off on the next floor it was so cool!
It was a lounge with very modern furniture. A soda fountain, a Starbucks center, bottled water etc. Every wall had computers where you could put your hand up to the screen and the heat from your hand turned it on. There were animated and interactive activities for the whole family. The floor changed colors too. Down the hall was the coolest bathrooms in the world! Even further down a private and awesome view of Epcot. The staff was wonderful and friendly. It was like walking onto a Jetsons cartoon. Noah said this was his favorite thing to do!
We also got to use two other private lounges but this one was by far the coolest to us!
Noah also got to see a few art galleries which made his day!
We did so many things its hard to name them all but we had a blast. Lots of ice cream and good food too. I have bigger hips to prove it!
Enjoy the pictures
Love,
Andra
I have to say, the next time we go....it will definitely be in the winter!!! Going there in the winter was soooo nice. The weather was warm but the evenings were nice, not smothering like in the summer.
Coming back, welll... that really was no fun! It was -29 below with the wind chill the day we came home. So when we left the Orlando airport it was 60 at 8a.m. when we arrived at lunch in Indy, it was -29 with wind chill. That's 89 degrees difference. Talk about shock! It took us three days to feel "warm" again, seriously. I wore heavy sweaters and wrapped in blankets for the first few days. We decided then and there, we realllly need to move! I could get used to that weather in a heartbeat.
One of the highlights of the trip was that Noah was able to really enjoy himself. He has been having more and more arrhythmia's now that he is growing so fast. His meds go by his weight. So, as he grows they change the dosage. However, he is at his maximum right now. We got back to Riley in 2 weeks to see the cardiologist to see what our options are. They originally told us that if the problem didn't get better by his 13th bday, it wasn't going to get better so we needed surgery. At his last visit they cardio said the meds were maxed out. They will have to change his med probably. But HEAT really makes his day hard. It causes his heart to beat fast. So, when we went in August, he was pretty miserable some days in Florida.
This time was so different. He was able to do more since the heat wasn't a factor. HE wanted to try a bigger coaster, but we were afraid his heart couldn't handle it. OK, MOM couldn't handle it either :-) I went on a few small ones and that was enough for me. Not a coaster gal!
Noah had lunch with an astronaut at Kennedy. Then got his picture made. That was nice. But I think he had more fun counting the crocs on the way to Kennedy on the side of the road just as much! We were in awe. I assume they are always that way, but they were all over the place. Just kinda hanging out in the watery areas in the grass.
We went to every park at Disney. We got to see the castle all decked out for Christmas. It was beautiful. On our last night there, we stayed until midnight. The babies pooped out around 10 so I let them sleep on a bench with me directly in front of the castle while Josh and the twins rode some more rides. That was a beautiful sight to see. The castle still changed colors but the castle had an *additional* 2 million lights (we were told) for the holidays. It was stunning. So bright! I had fun just sitting there watching it. What a way to end your day!
Our flights were great. On the way home we saw the Smokie Mtns.. Noah loved that. He loves flying!
Noah says the highlight of his trip was Siemens. When you stay at GKTW they give you passes. In that packet is a code for Siemens VIP lounge. Apparently this lounge is normally for their employees and "V.I.P." guests. Although it appeared there were some offices inside as well. So, we go to Epcot expecting fun. What we got was WOOOAHHH! We were very very very wowed!
Under the big "golf ball" as Jo calls it is a top secret door. If you open it there is a teeny tiny foyer. Reminds you of Charlie and the choc factory. This computer voice says "Welcome to Siemens, please enter your VIP code." We did and then this Jetson like door slid open in the wall. We had to walk this long mysterious hallway to an elevator. When we got off on the next floor it was so cool!
It was a lounge with very modern furniture. A soda fountain, a Starbucks center, bottled water etc. Every wall had computers where you could put your hand up to the screen and the heat from your hand turned it on. There were animated and interactive activities for the whole family. The floor changed colors too. Down the hall was the coolest bathrooms in the world! Even further down a private and awesome view of Epcot. The staff was wonderful and friendly. It was like walking onto a Jetsons cartoon. Noah said this was his favorite thing to do!
We also got to use two other private lounges but this one was by far the coolest to us!
Noah also got to see a few art galleries which made his day!
We did so many things its hard to name them all but we had a blast. Lots of ice cream and good food too. I have bigger hips to prove it!
Enjoy the pictures
Love,
Andra
Wednesday, February 4, 2009
We had a problem with our blog so we had to delete it all and start over. Here is the link to our pictures from Kelly's trip in September. There are also pics from Christmas, her new bathroom, and her cool new bike. http://www.flickr.com/photos/barkerzoo/?saved=1
We will get our Disney pix from Christmas uploaded this week and share those. They are sooo good!
Kloe came down with the stomach flu on Sunday night. Josiah came running out into the sanctuary yelling in a very *loud* whisper :-) "momma, Kloe's puking!". Poor Josh was up to his arms in little girl with nasties all over her dress and shoes. She was thoroughly peeved that her shoes were covered in spew and mad because her Pooh bear was all wet with the contents of her tummy. Needless to say, we wiped her up and headed home! She had a really high fever all night and was throwing up every hour or so. We kept giving her water etc every 15-30 minutes all night long, a teaspoon at a time to keep her hydrated. This continued all day Monday so I touched base with her ped. He said we could give it a few more hours but if not better to head to the hospital for fluids. She had almost 24 dirty pull-ups in less than 24 hours. She was so sick. But by Monday evening it was starting to slow down. She is STILL sick but only if she sneaks and eats. With just fluids we are doing pretty well but if I turn my back she's in the pantry sneaking cookies :-) Poor kid has to be hungry. And man, is she grouchy! She's better enough to be picking on Josiah but sick enough she can't eat. Hopefully, in a day or two she will be back to normal. Let's just hope the other kids don't get it!
Everyone else is doing great. Josh is still in school this semester. I took off since Kelly will most likely have her "big" surgery and my brother will do his transplant on March 2. But I plan to get back to the books in May.
The twins will be 12 in 2 weeks! Josiah will be 4 ~ 2 weeks after their birthday. I can't believe It!!!!!
Talk to you soon!
Love,
Andra
We will get our Disney pix from Christmas uploaded this week and share those. They are sooo good!
Kloe came down with the stomach flu on Sunday night. Josiah came running out into the sanctuary yelling in a very *loud* whisper :-) "momma, Kloe's puking!". Poor Josh was up to his arms in little girl with nasties all over her dress and shoes. She was thoroughly peeved that her shoes were covered in spew and mad because her Pooh bear was all wet with the contents of her tummy. Needless to say, we wiped her up and headed home! She had a really high fever all night and was throwing up every hour or so. We kept giving her water etc every 15-30 minutes all night long, a teaspoon at a time to keep her hydrated. This continued all day Monday so I touched base with her ped. He said we could give it a few more hours but if not better to head to the hospital for fluids. She had almost 24 dirty pull-ups in less than 24 hours. She was so sick. But by Monday evening it was starting to slow down. She is STILL sick but only if she sneaks and eats. With just fluids we are doing pretty well but if I turn my back she's in the pantry sneaking cookies :-) Poor kid has to be hungry. And man, is she grouchy! She's better enough to be picking on Josiah but sick enough she can't eat. Hopefully, in a day or two she will be back to normal. Let's just hope the other kids don't get it!
Everyone else is doing great. Josh is still in school this semester. I took off since Kelly will most likely have her "big" surgery and my brother will do his transplant on March 2. But I plan to get back to the books in May.
The twins will be 12 in 2 weeks! Josiah will be 4 ~ 2 weeks after their birthday. I can't believe It!!!!!
Talk to you soon!
Love,
Andra
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