Kylee's 1 year transplant video......make sure your speakers are on to hear the music....enjoy & have tissues available!!!
Thursday, October 6, 2011
Monday, September 20, 2010
Kylee's Benefit
There will be a benefit for Kylee on October 10th 2010 at the Amvets Club # 9 in Bismarck ND from 4:00 PM - 8:00 PM. We would love to see as many of your smiling faces there as possible to show your support for our family & help us through this journey with Kylee. Without all of your prayers, help, & support we wouldn't be where we are now. We would also like to thank you all for helping put this benefit together for us. So many of you have dedicated your time, energy, & patience to put this together for us & we appreciate it more than you will ever know. We love you all & can't thank you enough. Hope to see everyone at the benefit!!
Sunday, March 14, 2010
Birthday's, Anniversaries, Parties, Etc...
Sorry it's been awhile since I've posted anything on here. Just lots of things going on lately, as you all know. Skylar's 10th birthday was on February 22, coincidently the same day as Kylee's last inpatient admission. Since Kylee was in the hospital we decided to delay her birthday party until this past Saturday. It turned out better that way as Kylee was able to come home & help celebrate!! A good time was had by all, with lots of food & good company. Thank you to everyone for helping out with food & for coming to help us celebrate!!! Skylar loved her party & all of her gifts of course. The only flub was that the lovely bakery people at Sam's Club misspelled Skylar's name on her cake & instead of Skylar put Sklar. I guess we can count ourselves lucky by having everything else go well!!
Kylee has been doing great this past week with being home. She has had a couple episodes of throwing up again but otherwise is doing well. She did gain a little weight this last week & is now up to 12lb 14.5oz. So it seems like she is keeping her "girlish figure" & is making good use out of her infant carseat. That's ok though because at least with her in there we can somewhat shield her from all those yucky germs when we are out & about!!
Cory & I had lots to celebrate too, Cory's birthday was on the 11th, our anniversary is today the 14th, & my birthday is the 15th. So lots going on & lots to celebrate & be thankful for. Otherwise not much else is going on at the Glaser pad, just thought I'd give you all a little update. There are also some new pictures of Skylar's birthday posted & of Kylee's last hospital addmission so please check them out!!
P.S. You can also post comments on here too just like on CaringBridge. Just click the comments link at the end of the post & let us know what you think. We always love to her from you!!
Love,
The Glaser Clan
Kylee has been doing great this past week with being home. She has had a couple episodes of throwing up again but otherwise is doing well. She did gain a little weight this last week & is now up to 12lb 14.5oz. So it seems like she is keeping her "girlish figure" & is making good use out of her infant carseat. That's ok though because at least with her in there we can somewhat shield her from all those yucky germs when we are out & about!!
Cory & I had lots to celebrate too, Cory's birthday was on the 11th, our anniversary is today the 14th, & my birthday is the 15th. So lots going on & lots to celebrate & be thankful for. Otherwise not much else is going on at the Glaser pad, just thought I'd give you all a little update. There are also some new pictures of Skylar's birthday posted & of Kylee's last hospital addmission so please check them out!!
P.S. You can also post comments on here too just like on CaringBridge. Just click the comments link at the end of the post & let us know what you think. We always love to her from you!!
Love,
The Glaser Clan
Tuesday, December 29, 2009
Transplant Evaluation
Hi Everyone,
I wanted to give you all an update on how Kylee has been doing. Kylee has been doing well & is still slowly gaining weight. As of Sunday she was up to 11lb 12oz. So weight gain is still slow going. Both Dr Seibel (pediatrician) & Dr Blaufuss (pediatric GI @ MeritCare) have been talking & Dr Blaufuss doesn't feel like she is progressing like he would like to see by now. Her labs have been staying about the same for the last couple of times being checked & her bilirubin isn't going down as quickly as he'd like to see. One of her labs has continued to go up a little each time which indicates there is additional scarring & not proper bile flow thru her liver. Her spleen is also getting enlarged which indicates the blood isn't flowing thru her liver properly. So after talking with each other, Dr Seibel asked Dr Blaufuss when he would expect Kylee to need a liver transplant & he said his best "guess" would be by the time she is 1. Keep in mind this is only a guess & like Dr Seibel said kids sometimes do miraculous things so this is only a guess. Dr Seibel did also visit with some pediatric GI Dr's in Minneapolis who she knows (she did her residency at the University of Minnesota) & they also agreed Kylee should have a transplant evaluation done. Even though she is doing well now, they don't want us to wait & have her end up in a critical situation & then have to go through all the steps for a transplant. So we have her evaluation scheduled for Jan 27 & 28 2010 at the University of Minnesota in Minneapolis. We will be meeting Dr Nissa Erickson who is a pediatric GI Dr & comes very highly recommended. I was also told by the transplant coordinator there that the surgeon we will be meeting is one of the best in the country. It doesn't put my mind at ease but does make me feel a little better about all of this. After doing the evaluation we should have a better idea of when the transplant will need to happen. Of course this isn't the news any of us wanted to hear but unfortunately is the reality of it. So I just wanted to let you all know this is what is coming up & will be in her future. I'm not sure if they would do the living or nonliving donor option & I'm sure we'll find out more on that after the evaluation. Kylee also has that rather large strawberry hemangioma on her right should blade. Up to this point it hasn't bothered her, but for the last few weeks she has had these hard crying spells where you can tell she is in pain. It has gotten bigger & also has had this dry scabby stuff over the middle of it. We took her in last week to have her belly checked out & also that hemangioma & Dr Seibel said to put some Bacitracin ointment on it to keep it moist. Well, we did that & the scab that was on it was starting to come off. So we took her in to the walkin clinic last night (Dr Seibel is on vacation this week) & the Dr on call prescribed some antiobiotic ointment & a steroid cream to soothe it. So hopefully this will help it. Dr Seibel is also looking at changing her formula because lately when she has a messy diaper it looks like there is oil in it & she said that's a sign of malabsorption. So we are trying a different formula mixed with her icky formula to see if that will work better. Keep your fingers crossed that everything will work so she can gain some more weight. Well, sorry to drop this bad news off on all of you. I just wanted you all to be aware & know what is going on. I'll keep you all updated on things as we find out more info.
Love,
Lisa
I wanted to give you all an update on how Kylee has been doing. Kylee has been doing well & is still slowly gaining weight. As of Sunday she was up to 11lb 12oz. So weight gain is still slow going. Both Dr Seibel (pediatrician) & Dr Blaufuss (pediatric GI @ MeritCare) have been talking & Dr Blaufuss doesn't feel like she is progressing like he would like to see by now. Her labs have been staying about the same for the last couple of times being checked & her bilirubin isn't going down as quickly as he'd like to see. One of her labs has continued to go up a little each time which indicates there is additional scarring & not proper bile flow thru her liver. Her spleen is also getting enlarged which indicates the blood isn't flowing thru her liver properly. So after talking with each other, Dr Seibel asked Dr Blaufuss when he would expect Kylee to need a liver transplant & he said his best "guess" would be by the time she is 1. Keep in mind this is only a guess & like Dr Seibel said kids sometimes do miraculous things so this is only a guess. Dr Seibel did also visit with some pediatric GI Dr's in Minneapolis who she knows (she did her residency at the University of Minnesota) & they also agreed Kylee should have a transplant evaluation done. Even though she is doing well now, they don't want us to wait & have her end up in a critical situation & then have to go through all the steps for a transplant. So we have her evaluation scheduled for Jan 27 & 28 2010 at the University of Minnesota in Minneapolis. We will be meeting Dr Nissa Erickson who is a pediatric GI Dr & comes very highly recommended. I was also told by the transplant coordinator there that the surgeon we will be meeting is one of the best in the country. It doesn't put my mind at ease but does make me feel a little better about all of this. After doing the evaluation we should have a better idea of when the transplant will need to happen. Of course this isn't the news any of us wanted to hear but unfortunately is the reality of it. So I just wanted to let you all know this is what is coming up & will be in her future. I'm not sure if they would do the living or nonliving donor option & I'm sure we'll find out more on that after the evaluation. Kylee also has that rather large strawberry hemangioma on her right should blade. Up to this point it hasn't bothered her, but for the last few weeks she has had these hard crying spells where you can tell she is in pain. It has gotten bigger & also has had this dry scabby stuff over the middle of it. We took her in last week to have her belly checked out & also that hemangioma & Dr Seibel said to put some Bacitracin ointment on it to keep it moist. Well, we did that & the scab that was on it was starting to come off. So we took her in to the walkin clinic last night (Dr Seibel is on vacation this week) & the Dr on call prescribed some antiobiotic ointment & a steroid cream to soothe it. So hopefully this will help it. Dr Seibel is also looking at changing her formula because lately when she has a messy diaper it looks like there is oil in it & she said that's a sign of malabsorption. So we are trying a different formula mixed with her icky formula to see if that will work better. Keep your fingers crossed that everything will work so she can gain some more weight. Well, sorry to drop this bad news off on all of you. I just wanted you all to be aware & know what is going on. I'll keep you all updated on things as we find out more info.
Love,
Lisa
Friday, December 25, 2009
Kylee's First Christmas
Hi Everyone,
Hope you all had a very Merry Christmas!!! We had a very nice Christmas besides having a major blizzard starting Christmas Eve & just letting up today, December 26. We opened our gifts at home & then went to Marlys & Mike Bowden's house for Christmas on the Glaser side. It was alot of fun!! Christmas day we didn't do too much since we were all snowed in!! We haven't had a snow day in a long long time!! Here's a little something I put together for Kylee's first Christmas, hope you all enjoy it!!! Hope Everyone had a very Merry Christmas!!!
Love,
Lisa
Hope you all had a very Merry Christmas!!! We had a very nice Christmas besides having a major blizzard starting Christmas Eve & just letting up today, December 26. We opened our gifts at home & then went to Marlys & Mike Bowden's house for Christmas on the Glaser side. It was alot of fun!! Christmas day we didn't do too much since we were all snowed in!! We haven't had a snow day in a long long time!! Here's a little something I put together for Kylee's first Christmas, hope you all enjoy it!!! Hope Everyone had a very Merry Christmas!!!
Love,
Lisa
Wednesday, December 9, 2009
Office Visit with Dr Blaufuss
Hi Everyone,
I had my follow up appt with Dr Blaufuss in Fargo on Monday. Everything went very well, he was very pleased by how well I look & how much I've grown. I'm now up to 11 lbs!! He asked me to smile & when I did he said he'd remember my smile forever!! I seem to have that effect on lots of people for some reason, guess I'm just cute!! He did say that in 6-8 weeks when I see him again if I haven't cleared my jaundice & my bilirubin isn't down to normal or close to normal Mommy & Daddy may want to think about doing a consult with a transplant team so they know about me & are familiar with me if something comes up & I'd need a transplant soon. So far though everything looks good though & he said it wouldn't have to be done right away but just to think about it. He did have my labs checked again, & my direct bilirubin is 2.9 which is lower than last time when it was 3.3. So it continues to go in the right direction which is good. He said the best indicator of how well I'm doing is how much I'm growing & how good my nutrition is. So far I'm doing excellent in both areas so that's good. He said I'm quite the baby again!!
After the Dr's appt we went out to eat at the Olive Garden & met Betty & Dave Hochhalter there. It was nice to get to meet them & I had lots of fun with Dave holding me!! It was a very nice visit & we had lots of fun.
Otherwise not much else is new, just wanted to give you all a quick update on how this last visit went. I'll post another update after my 6 month checkup in the early part of Jan. Thank you everyone for continuing to pray for me, hopefully my liver will hold out for a long time so we don't have to worry about transplant for a long time!!
Love,
Kylee
I had my follow up appt with Dr Blaufuss in Fargo on Monday. Everything went very well, he was very pleased by how well I look & how much I've grown. I'm now up to 11 lbs!! He asked me to smile & when I did he said he'd remember my smile forever!! I seem to have that effect on lots of people for some reason, guess I'm just cute!! He did say that in 6-8 weeks when I see him again if I haven't cleared my jaundice & my bilirubin isn't down to normal or close to normal Mommy & Daddy may want to think about doing a consult with a transplant team so they know about me & are familiar with me if something comes up & I'd need a transplant soon. So far though everything looks good though & he said it wouldn't have to be done right away but just to think about it. He did have my labs checked again, & my direct bilirubin is 2.9 which is lower than last time when it was 3.3. So it continues to go in the right direction which is good. He said the best indicator of how well I'm doing is how much I'm growing & how good my nutrition is. So far I'm doing excellent in both areas so that's good. He said I'm quite the baby again!!
After the Dr's appt we went out to eat at the Olive Garden & met Betty & Dave Hochhalter there. It was nice to get to meet them & I had lots of fun with Dave holding me!! It was a very nice visit & we had lots of fun.
Otherwise not much else is new, just wanted to give you all a quick update on how this last visit went. I'll post another update after my 6 month checkup in the early part of Jan. Thank you everyone for continuing to pray for me, hopefully my liver will hold out for a long time so we don't have to worry about transplant for a long time!!
Love,
Kylee
Wednesday, December 2, 2009
Office Visit with Dr Seibel
Hi Everyone,
I went in to see Dr Seibel yesterday to have the second lump in the middle of my back checked out again. She thought it looked about the same as before so at least it's not getting any bigger. She was going to check to see if I need to see a specialist about it because she said there are two types of deep hemangiomas. One has small blood vessels surrounding it & it more likely to go away on it's own & the other has larger blood vessels surrounding it & is less likely to go away so it would require treatment. She was going to see if there is someone in town I could see or if not see if there is one in Fargo to see. Otherwise she was very impressed with my color & thought I looked even better than the last time she saw me. Of course I always try to look my very best!! My weight is now at 10lb 11oz so I'm still gaining, it's just at a little slower rate than she'd like to see. I'm still following my growth curve so at least that means no tube feedings for now in her opinion. She is going to talk with Dr Blaufuss about my weight & see what he thinks & go from there. Another option is to concentrate my formula to make it higher calories but she wants to talk with Dr Blaufuss first & she said he may want to wait until he sees me on Monday Dec 7. So I guess we'll see. All in all she was very impressed with how well I'm doing & was very happy to see me looking so good. Of course I already know I look good!! So just wanted to give a short update, I'll post another one after my appt with Dr Blaufuss on Monday & let you all know what he has to say. Thanks for continuing to pray & support me & my family!!
Love,
Kylee
I went in to see Dr Seibel yesterday to have the second lump in the middle of my back checked out again. She thought it looked about the same as before so at least it's not getting any bigger. She was going to check to see if I need to see a specialist about it because she said there are two types of deep hemangiomas. One has small blood vessels surrounding it & it more likely to go away on it's own & the other has larger blood vessels surrounding it & is less likely to go away so it would require treatment. She was going to see if there is someone in town I could see or if not see if there is one in Fargo to see. Otherwise she was very impressed with my color & thought I looked even better than the last time she saw me. Of course I always try to look my very best!! My weight is now at 10lb 11oz so I'm still gaining, it's just at a little slower rate than she'd like to see. I'm still following my growth curve so at least that means no tube feedings for now in her opinion. She is going to talk with Dr Blaufuss about my weight & see what he thinks & go from there. Another option is to concentrate my formula to make it higher calories but she wants to talk with Dr Blaufuss first & she said he may want to wait until he sees me on Monday Dec 7. So I guess we'll see. All in all she was very impressed with how well I'm doing & was very happy to see me looking so good. Of course I already know I look good!! So just wanted to give a short update, I'll post another one after my appt with Dr Blaufuss on Monday & let you all know what he has to say. Thanks for continuing to pray & support me & my family!!
Love,
Kylee
Saturday, November 28, 2009
Thanksgiving
Hi Everyone,
Well Thanksgiving has come & gone, where does the time go? We spent Thanksgiving at Judy & Doug's house with Jayme, Aimee, Kevin, Kim, McKenzie, Justin, Sheyene, Sherry, Keith, & Grandpa Pat. It was a very enjoyable day & the weather was absolutely beautiful!!! Still no snow, although I'm not complaining that's for sure!! Here are a few pictures to share. Hope you all had as wonderful of a day as we did!!
Love,
Lisa
Our family & Teddy
The whole gang together!!
Decorating the tree!! 
Well Thanksgiving has come & gone, where does the time go? We spent Thanksgiving at Judy & Doug's house with Jayme, Aimee, Kevin, Kim, McKenzie, Justin, Sheyene, Sherry, Keith, & Grandpa Pat. It was a very enjoyable day & the weather was absolutely beautiful!!! Still no snow, although I'm not complaining that's for sure!! Here are a few pictures to share. Hope you all had as wonderful of a day as we did!!
Love,
Lisa
Our family & Teddy
The whole gang together!!
Decorating the tree!! 
Sunday, November 22, 2009
Baptism
We had Kylee baptized today. She did so wonderful & was so good!!! I was worried she would cry when the pastor carried her around the church showing her off to the congregation but she didn't make a peep!!!! It turned out so nice & was just the perfect day!! We had a nice turnout of family for this special occasion at the church & our house afterwards for an open house. Here are a few pictures to share of this wonderful day!!!
Love,
Lisa
Our family, Pastor Gary, Pastor Art 
Our family & Grandparents 
Everyone who came to the baptism 
Our family & the Godparents
Our family 
Me looking cute in my dress
Love,
Lisa
Our family, Pastor Gary, Pastor Art 
Our family & Grandparents 
Everyone who came to the baptism 
Our family & the Godparents
Our family 
Me looking cute in my dress
Thursday, November 12, 2009
Testing
Hello Everyone,
I stumbled across this blog website on the internet & thought I'd try it out & see how it works. It has all sorts of different options available to do & best of all it's free!!! I'll still keep up Kylee's Caring Bridge website too but thought this is a cool way to keep everyone updated also, plus you can post more pictures on here. Anyway, just testing this out there will be more to come!!
Love,
Lisa
I stumbled across this blog website on the internet & thought I'd try it out & see how it works. It has all sorts of different options available to do & best of all it's free!!! I'll still keep up Kylee's Caring Bridge website too but thought this is a cool way to keep everyone updated also, plus you can post more pictures on here. Anyway, just testing this out there will be more to come!!
Love,
Lisa
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