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

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

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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

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