10 years ago
Wednesday, December 17, 2008
Hear Ye, Hear Ye, Jared is Amazing!
This morning, Jared decided that the walker that we have had for him the past two years is finally cool! He has never been at all interested in it and will only walk with it if we force him to. So, imagine our surprise this morning as he requested it and then continued to walk around the house with it!!!!!!!!!!! He probably walked for several minutes. It was AMAZING!!!! Unfortunately I was running around trying to frantically get the kids out the door for a Nutcracker performance so I wasn't able to get the video camera out. Rats!!!! Hopefully he'll think its cool again another day! Jared just might decide to walk after all! :)
The Busy Days of December
Wow, is time flying. I can't believe that Christmas is in a week! We have been busy around here. Nutcracker performances started last week and so we have been driving, putting make-up on and trying to keep up with homework all week. The kids are loving it though, and are enjoying performing. I can't wait to see them! Our tickets are for Saturday night! We just found out that all of my siblings are going to be here for Christmas with their families! We are so excited! It just doesn't seem like Christmas unless everyone is here. It will be a wonderful week!
My Christmas shopping is almost finished. I am hoping to be done in the next two days so that I can just have fun and play with the kids next week. We'll see how it goes. It always seems like even though I think that I am prepared, there is always something else that needs to be done.
I even finished writing a Christmas letter this year! Now I just have to somehow get them all sent!
Jared had more labs done on Monday. His ANC was up a little bit from the week before. Still not where it needs to be, but it is at least going in the right direction. I am crossing my fingers that it will keep going up on its own. We'll see on Monday! I am just so grateful for how healthy he is staying right now. We have definitely been blessed in that regard! He has clinic on Monday and then his MRI's on Tuesday so next week will be a busy hospital week.
My Christmas shopping is almost finished. I am hoping to be done in the next two days so that I can just have fun and play with the kids next week. We'll see how it goes. It always seems like even though I think that I am prepared, there is always something else that needs to be done.
I even finished writing a Christmas letter this year! Now I just have to somehow get them all sent!
Jared had more labs done on Monday. His ANC was up a little bit from the week before. Still not where it needs to be, but it is at least going in the right direction. I am crossing my fingers that it will keep going up on its own. We'll see on Monday! I am just so grateful for how healthy he is staying right now. We have definitely been blessed in that regard! He has clinic on Monday and then his MRI's on Tuesday so next week will be a busy hospital week.
Monday, December 8, 2008
Jared Updates
Well, we have added a few new specialists into the mix with Jared the last few weeks. We saw the hematologist about his white count. We took Jared off of the med that we think is causing it. Put him on a low dose of steroids to take its place and repeated the neupogen shots to get his white count back up. Two weeks ago his ANC was 2.1 which is terrific! Today, back down to .8 again. Not good. We'll find out tomorrow what the doctors want us to do. I guess I'll be pulling out the masks again! :)
We also saw the endocrinologist about his bone health and she thinks that the transplant team is doing great managing all of that so we don't need to see her again, but she did recommend that Jared see a Medical Physical Rehabilitation doctor because he is still developing so slowly. So, we saw the mpr doctor last week. We have been a little concerned because he is still so globally delayed. We expected to see a lot more improvement this past year post transplant. He is still developing, but at a very slow pace. More slowly than what the kidney drs. thought he would. So, because of a lot of little things, we have decided to do a little more investigating to see if there is more that Jared is dealing with than just his kidney disease. So the MPR dr. wants him to start more intensive outpatient therapy. She also wanted him to see a neurologist and have a brain MRI done. So, we saw the neurologist today! (It has been a pretty crazy few weeks of doctors). He agrees that there is a good chance that there might be more going on. He said that we might figure it out, but we might not! So, he added a spinal MRI to the brain MRI that we will be doing on Thursday. He also wants to do some more extensive genetic testing if we can get the insurance company to approve it. He also wants us to keep the appt. we have with the geneticist (which isn't until July!). So, we are busy! It will be interesting to see if anything else is discovered.
Jared is amazing though. He has the sweetest personality and withstands the endless trips to the hospital with flying colors. He is generally a sweet, happy boy and such a blessing to have. He keeps us on our toes, but life would definitely be missing something with out him! I love you Jared!
We also saw the endocrinologist about his bone health and she thinks that the transplant team is doing great managing all of that so we don't need to see her again, but she did recommend that Jared see a Medical Physical Rehabilitation doctor because he is still developing so slowly. So, we saw the mpr doctor last week. We have been a little concerned because he is still so globally delayed. We expected to see a lot more improvement this past year post transplant. He is still developing, but at a very slow pace. More slowly than what the kidney drs. thought he would. So, because of a lot of little things, we have decided to do a little more investigating to see if there is more that Jared is dealing with than just his kidney disease. So the MPR dr. wants him to start more intensive outpatient therapy. She also wanted him to see a neurologist and have a brain MRI done. So, we saw the neurologist today! (It has been a pretty crazy few weeks of doctors). He agrees that there is a good chance that there might be more going on. He said that we might figure it out, but we might not! So, he added a spinal MRI to the brain MRI that we will be doing on Thursday. He also wants to do some more extensive genetic testing if we can get the insurance company to approve it. He also wants us to keep the appt. we have with the geneticist (which isn't until July!). So, we are busy! It will be interesting to see if anything else is discovered.
Jared is amazing though. He has the sweetest personality and withstands the endless trips to the hospital with flying colors. He is generally a sweet, happy boy and such a blessing to have. He keeps us on our toes, but life would definitely be missing something with out him! I love you Jared!
Friday, December 5, 2008
Christmas tag
Christmas Tag
Thanks Tammy for the tag! It was fun to do and brought back fun memories!
1. Wrapping paper or gift bags? Wrapping paper. I love seeing wrapped presents with pretty bows under the tree!
2. Real tree or Artificial? We always cut our own Christmas trees when I was growing up and I swore to myself that I would never have an artificial tree. Well, I am now the owner of two artificial trees! I just got too nervous about my house burning down!
3. When do you put up the tree? Usually the first week of December
4. When do you take the tree down? Sometime in January. Basically when I have the energy to to it.
5. Do you like eggnog? I like a little eggnog if it is watered down a little bit with milk.
6. Favorite gift received as a child? A Cabbage Patch Doll. My parents had absolutely no money that Christmas and my Mom was so worried because that was all that my sister and I wanted. Late on the night before Christmas Eve there was a knock at the door. When my mom opened it up there was a bag with two Cabbage Patch dolls inside! It was a Christmas miracle!
7. Hardest person to buy for? My husband. I never know what to get him!
8. Easiest person to buy for? Alyssa. I love buying her girly things!
9. Do you have a nativity scene? I have 5 nativity scenes. I love them and love collecting new ones.
10.Mail or email Christmas cards? Mail when I actually get them sent!
11. Worst Christmas gift you ever received? I can't think of one.
12. Favorite Christmas Movie? Miracle on 34th Street, The Santa Clause, White Christmas
13. When do you start shopping for Christmas? Usually in November, but not whole heartily until December. I have started to do more shopping at home on my computer.
14. Favorite thing to eat at Christmas? Christmas Meringue Cookies, hot chocolate, Jeff's Fabulous multi-leveled jello, I could go on and on!
15. Lights on the tree? Our main tree has white lights and the kids tree has colored lights.
16. Favorite Christmas song? Don't Forget to Feed the Reindeer, Away in a Manger, I have so many!
17. Travel at Christmas or stay home? Stay at home.
18. Can you name all of Santa's reindeer's? Definitely!
19. Angel on the tree top or a star? An Angel. I LOVE angels!
20. Open presents on Christmas Eve or morning? One present Christmas Eve, usually pj's and the rest in the morning.
21. Most annoying thing about this time of the year? The traffic and long lines.
22. Favorite Ornament theme or color? I love traditional Christmas colors.
23. What do you want for Christmas this year? A peaceful, happy day. I would love to have a really good nights sleep, but that is usually too much to ask for! :)
Merry Christmas!
I tag:
Rachel,
Lori,
Krista S,
Mickel
Thanks Tammy for the tag! It was fun to do and brought back fun memories!
1. Wrapping paper or gift bags? Wrapping paper. I love seeing wrapped presents with pretty bows under the tree!
2. Real tree or Artificial? We always cut our own Christmas trees when I was growing up and I swore to myself that I would never have an artificial tree. Well, I am now the owner of two artificial trees! I just got too nervous about my house burning down!
3. When do you put up the tree? Usually the first week of December
4. When do you take the tree down? Sometime in January. Basically when I have the energy to to it.
5. Do you like eggnog? I like a little eggnog if it is watered down a little bit with milk.
6. Favorite gift received as a child? A Cabbage Patch Doll. My parents had absolutely no money that Christmas and my Mom was so worried because that was all that my sister and I wanted. Late on the night before Christmas Eve there was a knock at the door. When my mom opened it up there was a bag with two Cabbage Patch dolls inside! It was a Christmas miracle!
7. Hardest person to buy for? My husband. I never know what to get him!
8. Easiest person to buy for? Alyssa. I love buying her girly things!
9. Do you have a nativity scene? I have 5 nativity scenes. I love them and love collecting new ones.
10.Mail or email Christmas cards? Mail when I actually get them sent!
11. Worst Christmas gift you ever received? I can't think of one.
12. Favorite Christmas Movie? Miracle on 34th Street, The Santa Clause, White Christmas
13. When do you start shopping for Christmas? Usually in November, but not whole heartily until December. I have started to do more shopping at home on my computer.
14. Favorite thing to eat at Christmas? Christmas Meringue Cookies, hot chocolate, Jeff's Fabulous multi-leveled jello, I could go on and on!
15. Lights on the tree? Our main tree has white lights and the kids tree has colored lights.
16. Favorite Christmas song? Don't Forget to Feed the Reindeer, Away in a Manger, I have so many!
17. Travel at Christmas or stay home? Stay at home.
18. Can you name all of Santa's reindeer's? Definitely!
19. Angel on the tree top or a star? An Angel. I LOVE angels!
20. Open presents on Christmas Eve or morning? One present Christmas Eve, usually pj's and the rest in the morning.
21. Most annoying thing about this time of the year? The traffic and long lines.
22. Favorite Ornament theme or color? I love traditional Christmas colors.
23. What do you want for Christmas this year? A peaceful, happy day. I would love to have a really good nights sleep, but that is usually too much to ask for! :)
Merry Christmas!
I tag:
Rachel,
Lori,
Krista S,
Mickel
Wednesday, December 3, 2008
It's been ONE year!!!!!!
Today is the day! Jared received his miracle 1 year ago today! I can't believe how quickly this year has gone by. It has been an amazing year full of a few downs, but many, many ups! Jared is doing so well and is growing and developing right before our eyes. I am so grateful that I have him here with me, and I so grateful for his amazing donor and his family. I don't know who you are, but I think about you daily as I watch my little miracle flourish right before my eyes! I can imagine that this year has been a hard one for you, as you have mourned the loss of your son. I just hope that thinking about the lives he has saved has given you even just a small amount of peace. I will always remember and pray for you. There is a part of your son that is still alive in mine. Thank you!
I also can't let this day pass until I have thanked the amazing team at the transplant clinic who have taken such excellent care of my Jared. You are family now and I can't imagine going through any of this without you by my side. Thank you for loving my son and for loving me! You are the best!
We celebrated today by having apple pie and ice cream. Jared, of course, didn't participate in the eating but he blew out the candle and was as silly as can be at the table. We are so blessed! I am so blessed! What a miraculous day!
I also can't let this day pass until I have thanked the amazing team at the transplant clinic who have taken such excellent care of my Jared. You are family now and I can't imagine going through any of this without you by my side. Thank you for loving my son and for loving me! You are the best!
We celebrated today by having apple pie and ice cream. Jared, of course, didn't participate in the eating but he blew out the candle and was as silly as can be at the table. We are so blessed! I am so blessed! What a miraculous day!
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