Lili's Medical Progress

Today is September 12, 2003 and we got a call this morning saying that her labs look Fabulous! Yippie! They are looking better than ever. We have a clinic appointment on the 18th, so we'll let you know what's up! Peace and Love to you all!!! Lili has been off of dialysis for 8 weeks. Go peanut kidney go!

Today is September 22, 2003. We had our appointment and everything looks great! She will continue to be off of dialysis for now. They are starting us on the track for evaluation! That means she'll be evaluated, probably in November. Basically they make sure she has had all of her immunizations and she has kidney reflux so they will decide if they want to fix that before or after transplant. They look at her and make sure everything is in place and ready! Bruce and I, and anyone else who wants to be tested, will probably be evaluated in January. It seems to be happening so quickly, yet it has been such a long road! Thank you for all of your support. Peace and Love to you all!

Lili is STILL off of dialysis! It is October 2nd and her labs are still looking good. It is a miracle! We are loosing our nursing, but I would rather have her off of dialysis. I'm sure I'll be more tired and we will be entering a more "normal" life. She still has meds, bandages, assesments, gaging fits, her feeding tube, etc., but thank god she is off of the dialysis machine!

Oct. 17th, 2003... her labs look great!  She will continue to be off and we are scheduling the removal of her Broviac and PD catheter.  They are not functioning and she only needs blood draws once a month now.  If she needs to go back on dialysis we would have to fix it anyway.  If it isn't being used AND isn't functioning we should take it out.  She will have less chance for infection that way.  Her broviac isn't working either so we're taking that out, too.  Probably next week.  She is scheduled to start her transplant evaluation on November 11th.  She is a miracle!!!

October 23, 2003.  I took Lili in for surgery this morning at 7:30am and she successfully had her Broviac and PD catheters removed!  Unfortunately she spiked a fever when we got home and I had to take her back to U of M's ER at 6:00pm.  They did all sorts of tests and we were admitted around 12:30am.  Yeah... long day!  She was in lots of pain and not feeling good at all.  We stayed the night, they gave her fluids and lots of Tylenol.  We think she has a little cold and the surgery pain caused her to breathing to be shallow, helping with the fever.  They cut us loose Saturday around 6:30pm.  She is doing much better, but still not 100%.  Thanks to the Mott staff (who we love but would like to just visit!!!) and Grandma Berger for coming by to let mom take a shower and get some food!  Oh yeah... her labs still look good.  Peace and Love to all!

November 11 (Thank you to all of our beloved veteran's!)  Lili had an appointment this morning at 8:20am to start her evaluation for transplant!  Gamma Berger met us there and helped entertain Lili while I talked with the docs.  Gamma also asked some questions.  Lili also had blood drawn for her tissue testing and Mom also got some blood drawn.  I figured if she could do it than I could.  She's my inspiration!  We finally got outta there around 2:30pm.  Long day!!!  I asked Lili to drive home so I could sleep but she was out before we got to the car.  We also saw Rachel... one of Lili's friends.  She was transplanted a couple of months ago.  They are a wonderful family and are having some hard times right now.  Please send prayers to Rachel, her mommy and her daddy.
Lili has to go back next week for some more blood tests.  Bruce also has to be tested.  I'll keep you posted on the results!  Peace and Love to all! : )

Lili had more labs done Monday and they look great!  We are still sailing through and hoping she can stay off until her transplant!  We'll know in a couple of weeks if Bruce and I are matches.  Keep your fingers crossed!
Peace and Love! : )

Today is December 3rd and I just received a phone call from Maureen at the transplant clinic... I'm a match!  Bruce's results aren't in yet, but she has three of my anitbodies, so she'll have three of his and we all have the same blood type.  She said she's sure Bruce will match, too!  Now we have to decide who is the better candidate to donate and the chosen one will go to U of M for further testing.  One more hurdle jumped with great results!  

December 11th - Lab results, great!  She's growin'... docs like that, so does Joan - Thanks gang!  She keeps on keepin' on!!!

January 15, 2004... First labs of the year... they are lookin' good.  She is still growing on the 50 percentile marker and her labs are steady, so we're still coastin'!  I go in February 17th for my 6 hour evaluation appointment.  I'm not lookin' forward to it, but I wouldn't want it any other way!  Yippie, Lili Lou!

January 22 - She had a cariology appointment today.  They heard a murmur when she was born and wanted to check it out.  It seems to have gotten better, the holes are closing.  They aren't concerned about it and she should be fine for transplant!  They want to see her back next January.  Lili also had her 9 month immunizations yesterday (not fun!) and is going to see an ENT in February cuz her right eye is still causing problems.  Hopefully that'll fix it!  Other than that, she's doing great!

February 18... I had my evaluation stuff yesterday... 5 hours!  It went well and it looks like I'll be fine to donate.  They still need a few things and I need to have a CT done to make sure I have two fully functioning kidneys, but we're pretty sure I'll be given the green light soon!  It's wonderful and scary all at the same time!  Lili has clinic tomorrow, so check back for her progress.  I've also just found out that I have hyperthyroidism.  It shouldn't interfere with my ability to donate thank God!  Hope all is well! xoxoxo

February 20...Lili had clinic yesterday.  She's growing, which is great!  Her labs looked good except her creatinine is 2.3, the highest its been.  Her potassium and everything else looks good, so it isn't a huge concern.  We just need to get more fluid in her.  She gags quite a bit, so I'm hoping it won't be too hard for her to go up on fluid.  Lili is also spilling out quite a bit of protein in her urine so it looks like the sooner in the summer for transplant the better.  Wow!  It's really happening. xoxoxo

March 23, 2004 ... Lili was joined by her Grandma and Grandpa Berger at this month's clinic visit.  I had to get an Echo (transplant eval) beforehand, so my parents came along to help out - thank you!  Lili's labs look good this month, she still needs more fluid her creatinine has stayed at 2.3.  Her length hasn't changed in three months, so they are concerned about her growth slowing down.  She has gained weight, just not length.  If she still hasn't grown by her next appointment, they want to get her transplanted as soon as possible.  I'm hoping my eval stuff will get finished up this month so I don't have to worry about that anymore.  She's doing great and she's getting ready for her 1st birthday party!

March 26, 2004... Lili has been added to the Kidney Organ List.  This means we could get a call at anytime and we would have to go get Lili's new kidney!  Basically, she needs a transplant now and my stuff isn't finished yet, so they wanted to make sure just in case my kidney won't work, that she is covered.  If by this next clinic visit she hasn't grown in length, they want her to be transplanted right away.  If I'm not ready and a cadaveric kidney hasn't been donated yet, she will probably be put on hemo-dialysis.  It's all pretty scary, but this is what we've been waiting for.  My nurse said that if we get a call before my stuff is in that we should take it.  Then we'll have a "kidney in the bank" as they like to call it!  Keep your prayers coming!!!

April 11, 2004... Happy Easter!  Lili is feeling better.  We spent her birthday, April 6th, in U of M's ER.  They wanted to rule out RSV and make sure her labs were ok.  Her creatinine is up to 2.5, but still no real concern.  My transplant coordinator, Bill, FINALLY recieved all of my records and is going to try to get my CT set up for the week of the 19th.  Keep your fingers crossed!  Her next clinic visit is the 22nd of this month.  It is a miracle we celebrated her 1st birthday this week.  I am amazed when I think about one year ago.  Thank you all for your support and all of your prayers.  We couldn't have done it without you! xoxoxox

April 26, 2004... Lili is doing great!  She had clinic last week and her labs look fine.  Yea!  We get to keep her off of dialysis a little longer!  I had my CT last Friday and we're waiting for all of the doctors to sign off on it and then we'll get a date set!  That should be next week, so I'm hoping to set the surgery for May.  Can you believe it?  I can't!  I can't wait 'til she feels better!!! 

May 3rd, I got a call from my coordinator, Bill, today and my kidney is ready to go!!!  They still have a couple of double checks to make, but then we should be able to set a date.  He mentioned June 7th, but I'm hoping to talk to someone to get it sooner.  We'll see!!!  At least we know I'll be the donor.  Lili is ready, so I want her to get it as soon as possible.  I'll let ya know... xoxoxo

May 4th... I talked with Lili's coordiator, Maureen, today and they set a date for us!!!  The surgery will be Monday, June 7th.  I'm hoping this won't change.  I guess there is a reason why it isn't this month.  I'm just thankful that we have a date and I'm a match for my beautiful Lili.  I can't wait until she feels better!  She'll be walking before I will!  Peace and Love to all of you for your prayers and support.  xoxoxo

May 27th... Lili had her last clinic visit today.  It was a tough one.  She started crying as soon as we got into the Dialysis Unit.  She knew what was coming.  We had some trouble with the blood draw and the labs didn't look right, so we have to go in to Sparrow tomorrow for another draw.  Neither of us are happy about that one, but we gotta get the labs before surgery.  Hopefully it'll be quick and then she'll get to go to grammie and grampie's and play with the kitty!

June 9th... Lili got her new kidney on Monday and they're are getting along famously!!!  She is doing great and the kindey is working better and better all the time.  Thanks for all of your support!

June 12th...  Lili is doing great and I'm catching up.  I'm still very sore and pretty uncomfortable, but I'm getting better.  Lili is stepping and sitting up.  She's said Kitty Cat, Mama, and Dada.  She laughs, smiles and is having a bit of gas, but seems pretty comfortable most of the time.  They are working on her blood pressure today (it's a little high), but are looking at discharge tomorrow - Sunday.  They say it's a record.  I'm not looking at breaking any records, I just want her to get out if they think she's ready!  They would rather have her out of the hospital - away from sick people - and healing at home if they aren't doing anything medically for her.  We should be back in DeWitt tomorrow.  Thanks for all of your support! xoxox

June 14th... We are at home already!  Lili was discharged yesterday, setting a record at U of M (not that I was hoping, too!) she just keeps surprising everyone!  We have to take her blood pressure 3 times a day and she is on quite a few meds.  Some of them will be going away within the month, some three months, and three of them -for sure- she will be on for life.  
It's very difficult for me because she is healing at an elevated rate compared to her ol' ma!  I can't lift her and when she's crying, it just kills me not to be able to pick her up!  And of course she keeps doing things that make me wanna laugh out loud and it hurts me too much.  She is having a great time being out of the hospital.  We will be going back twice a week for quite sometime for clinic visits.  She is also not to be around big groups of people (stores, restaurants, festivals, etc.) or have many visitors or anyone with colds around her for 6 weeks.  After that she will have no restrictions!
Thank you again for all of your support and all of your prayers.  We couldn't have gotten this far without all of you.

June 15th... Lili had her first Transplant Clinic appointment today.  She did great!  She still gets upset when they weigh her and measure her length - ususally she gets poked for a blood draw afterward, but she has a Broviac again, so they just draw from that.  Yippie, Broviac!!!  No pokes for a while!  She's doing great and they are pleased with her recovery.  We also visited Ped Surg. and they said her incision looks great.  She's running circles around me, that's for sure!!!

June 30th... Lili had a tough day (so did Mom and Grandma!) yesterday.  We've had trouble with her feeding tube button leaking, so Ped. Surg. said to bring her in before clinic and they would take it out, plug it up and it would hopefully close up a bit so it wouldn't leak as badly.  We got it taken out and went to her kidney clinic visit.  It was still leaking, but now it was leaking stomach acid, which wasn't feeling to good to Lili!  We tried bandaging it up, but it was really messy.  The docs needed to get a urine sample and wanted to cath her to get a clean sample.  After the third try and Lili screaming and causing her stomach to leak even more, we decided to go get the button put back in and then we'd come back for the cath.  After Lili got her button back in she fell asleep and Grandma and I both wanted to just drive away!  She woke up and we took her for the cath.  It went rather smoothly and we were on our way home!  We left Grandma's at 7:15am and didn't get home until 4:45pm.  What a long day for everyone!!!  We're glad Grandma was with us.

July 14th... Things are going well.  Lili's labs have been stable, but she does have a cold.  She had a UTI a couple of weeks ago and she has a little ear infection now.  She's on meds for that, but her labs are looking good still and we haven't had any kidney/surgery complications, so we are VERY happy aobut that!  Mom's also healing up nicely... just in time to chase Lili around!

August 5th... Lili's kidney is doing GREAT!  She just had an upper GI and G-tube study because she's still gagging and in pain quite a bit, so I finally almost broke down in the office and they decided to do something besides tell me it'll get better!  They found that she IS having acid reflux pretty bad.  They switched a couple of her meds this week, so we're crossing our fingers that it will help!  Other than that her medical health is super!  Her labs look good and the amounts of her anti-rejection medicines is going down little by little, which is wonderful!  We're very lucky!!!
Her speech therapy is going well.  We've had some break throughs in the last few days.  Last week she tasted some pudding without gagging.  Yesterday, and today, she drank some water out of my sqeeze bottle - by her choice!  Today she actually took some water from a spoon (in her mouth) and let me hold it!  She put a spoon in her mouth with pudding on it - not a spoonful, but she's really making progress!  We're also at the point where I have her on her feeding pump for 1 hour and then off for 2.  She's still on it continuously overnight, but we're working on it!  It's a slow process, but it'll be worth it!!!

September 2, 2004... We've changed her formula and the volume and I'm hoping that will help with her gagging. She is still waking up at least twice a night screaming and gagging... I just want her to feel better! We saw the GI doctor and now they are supposed to set up an appointment for Lili to have a scope done. If they find something than let's try to fix it. If they don't, then we'll just deal with it and try to get her eating even harder than I'm trying. She started her OT at Mott last week and we're trying to get Early On set up soon, so hopefully it won't be too long. She is drinking a little more water - not even an ounce a day, but more than she has before. She is also getting better with the pudding being put on her lips. She actually tastes it a little bit and doesn't scream or gag. We're working very hard and I have to believe (because people tell me so) that she WILL eat and we WILL get rid of that horrible tube and her reflux!!! I just pray that day will be sooner than later. But her kidney is doing great... very thrilled about that!

September 14, 2004... Lili and I will be going to U of M tomorrow (Wednesday) at 7:00am and staying the night. Lili is getting a PH Probe done, which I hear is very horrible. They are checking to see if there is more acid reflux than the Prevacid can fix. If they find more acid they will give her an extra dose of Zantac. If they don't find any, they will do a scope to see if there is something else making her gag and scream. Please keep us in your prayers.

September 25... Lili has been in the hospital since Tuesday the 21st. She is feeling great and running the place! She's been having problems with gagging and pain with her feeds for months and I finally decided we REALLY need to do something drastic about it. Well, after a few tests they found that Lili's stomach empties at 75% the normal speed (Gastroparesis). This could be causing the pain. She's going into surgery Monday, hopefully, or Tuesday, to put in a GJ tube, which should help eleviate the pain. Please send your prayers! Other than that she and her kidney are great!!!

September 27... Lili was discharged Saturday, but ended up with a fever of 101 on Sunday and ended up in the ER. She was re-admitted today and found to have picked up strep throat! They surgery will be put off to at least Tuesday. I hope it isn't put off any further! Other than that she is doing wonderfully!

October 2, 2004... Lili had surgery to put in a GJ tube on Tuesday (9/28) and she was discharged on Thursday (9/30).  She's had problems with it leaking stomach acid onto her tummy and has some burned skin - Ouchie!  They surgeons said it would eventually stop leaking.  Well, we were home for a day and Lili got a fever again.  She had a low grade fever on Friday (10/1) which turned into a bad night - she and I were up ALL night changing leaky bandages and giving Tylenol for a mild fever.  Then on Saturday afternoon her fever spiked to 102.  By the time I got her to the hospital it had gotten up to 103.8!  It finally came back down to 100 and she seemed to be doing better.  She was re-admitted Saturday night, her father joined us in the ER and then he and I finally went home around 10:30pm to get some sleep - after Lili went to sleep.  She was stable and had cooled down quite a bit.  The phone rang at 5:25am and Lili had just had a febrile seizure.  Her temperature shot up to over 105 (I found out later while looking through her records that it was actually up to 106.9) in a matter of minutes, which caused her to sieze.  They cooled her a bit and she was trying to rest when we got there not too much later.  She still had a fever of 103 for a while.  She was NOT looking good or feeling good at ALL!  We were VERY scared.
Now after a positive blood culture for a blood infection, we're waiting to see if the anitbiotics she is on are going to work.  The docs think her central line (Broviac) got infected being in the hospital!  If the infection doesn't clear up in a couple of days she'll have to get her line pulled out.
We're just relieved her kidney doesn't seem to be affected and her function is still great!  Her temp is normal now and she's playing around and wants to go outside, so we are quite relieved.  She sill might spike again because we still don't know the exact cause for sure, but she's feeling soooo much better and we're feeling better, too!  Her spirits are up and I'm sure she'll be strutting the halls again in no time!

October 15, 2004... Lili is doing better. She has a pretty bad cold and we can't give her a decongestant because she's on blood pressure meds. We're doing what we can to fight of the ickies! Her Broviac got removed on Tuesday (10/6) and then she was discharged on Saturday (10/9) after 3 days of antibiotics. She's on the mend and back to her old ways of being into everything and absolutely crazy! It's great to see her back to "normal!"

December 8, 2004... Lili was in the hospital a few more times in October and November. She had her GJ tube replace with a mic-key GJ. It's much better - no leaking!!! She's doing much better and actually had clinic yesterday. She hadn't had it cuz we couldn't keep her out of the hospital for two weeks! Finally, she had clinic and everything looks GREAT! Yesterday was our 6 month anniversary! Time flies, eh? She's doing wonderfully (still gagging and they don't know why) but otherwise doing great. She's in therapy once a week to learn to eat. She's barely putting things in her mouth and spits it out before it gets too far in. Baby steps! It'll come! It has to!!! Happy Holidays!

January 14, 2005... Happy New Year! Lili made it through December without being admitted! Unfortunately she spiked a fever last Friday and was in Mott for the week-end. She is feeling much better and her kidney function is and has always been 100%!!! We are very blessed for that! She had clinic Tuesday and her labs look great. She's only going once a month now... yippies! She's drinking more water and is still munching on gold fish crackers and she's tasting EVERYTHING! We're gettin' there! Her GJ tube came out, so we are back to the regular G-tube. This means her feeds are going through her stomach and not into her bowel. She seems to be tolerating them ok, so we're not gonna put her under to get it replaced at this time. We're hoping her eating will explode at any moment and we won't have to worry about the tubes anymore. I know... be patient!!!

January 28, 2005... Lili was in the hospital again. She had a slight fever for a couple of days and then we couldn't get it lower than 101, so she must go in. We were in the ER until around 2am, when she finally got a room. She was in from Sunday (1/23) until Tuesday (1/25). She tested positive for EBV (Ebstein Barr Virus - mono) and strep. We're still waiting for other results, but they sent her home on antibiotics and an antiviral. We're hoping these infections will go away soon. She's a fighter and bounces back every time. She inspires me!

February 7, 2005... Lili's in the hospital AGAIN!!!  I'm sure they want me to take her out of daycare, but I really don't have many choices right now.  Anyway... they are thinking it's an ear infection right now, but will be giving her a CT tomorrow to check for sinus problems.  She is also scheduled to see an ENT doctor (Ear, Nose, Throat) because her tonsils are big and there could be other problems going on there, too.  Lili has loving nurses and her mommy and daddy are here to play and comfort her.  Luckily Tara is her nurse tonight, so she is being SPOILED!!!

February 9, 2005... We brought Lili home from the hospital last night. Yesterday was a VERY long and disappointing day. She was supposed to have her CT at 2:00, but the someone screwed up and gave the wrong orders and Lili hadn't been NPO (without food) for long enough. They rescheduled it for 5:00 with a not so pleased emergency nurse - oh well! She was very nice. We took Lili down to get sedated. Well, little Miss Lili had other plans! Big surprise! They gave her the FULL amount of drugs they could give her and at first all she did was giggle and laugh, which was VERY funny! By the time she got the full amount she was very upset and did NOT want the test. They decided they needed anesthesia for the test, so it was cancelled for the day. She finally came out of her drunken state around 7:00 and we took her home. She has an appointment with the ear, nose, throat doctor on Monday and we'll see if they suggest. She slept late and is as happy as a clam to be home... as am I!

February 21, 2005... Lili had her CT done on Friday the 18th.  Everything is normal.  We got home and she spiked a fever of 104, which landed us in the ER.  She's such a tough cookie!  She is still in the hospital and will hopefully be coming home today.  The tests have all come back negative so far, but some are still out.  The docs think it is just a viral thing that is going around.  Hopefully she'll feel better soon.  We're also trying to get out of our apartment, for health reasons.  I'll keep you posted!  Peace to you all!

February 27... Lili didn't come home until Friday the 25th. She has a UTI, with a couple of strange viruses. The only antibiotics that will kill her strain of virus is IV antibiotics, so Lili had surgery Friday morning. They put in a PIC Central line. It is a temporary line inserted into her chest, looks like her Broviac, but it is removable without surgery. That means it could be pulled out at anytime, but it is secured, so it should be ok. She has IV medication every 8 hours, which is in a small pump and is administered over an hour. Hopefully this will only last for a week, cuz I gotta get up at 6:00am to start it and 7:00am to flush it every morning. She sleeps later, so I get to go back to sleep for a little while! She's running around and causing havoc as usual, so I know she's feeling better. Thanks to Grammie Berger for her help thorugh this and Grampie for surviving without her for a bit! Love to you all.

April 25, 2005... Lili has been doing wonderfully!  She has had a couple little staph infections, but we've caught them before they've gotten out of control.  We've treated them with antibiotics and she hasn't had to stay at the hospital since February!  She did become dehydrated because of Augmentin and extreme diarrhea.  She drank 8 ounces of water, so I knew something was wrong.  We got it under control with Pedia Lyte and a change of antibiotics.  She got better and luckily hasn't been sick otherwise.  It seems this new apartment is helping, too.  Lili has started back at Speech Therapy, so we're working on the eating issue.  It is going slowly.  She is licking and sucking on crackers, but once they start breaking apart, she spits them out.  She likes tasting things, but doesn't know how or why to swallow them.  Day by day.

June 5, 2005... Lili has her ONE YEAR anniversary post transplant on Tuesday, June 7th.  She has clinic that day and I'm sure the staff is gonna love seeing her!  She has been struggling with the EBV since January, if not before, and the levels are up quite a bit right now.  She had labs done a couple of weeks ago and she is at 1000!  That's the highest it has been, so I'm a little concerned.  We're gonna try Vancyclovir, drop her Tacrolimus and continue to hold her cellcept.  We're hoping that will kick her immune system in a bit to fight it off.  When she was at 400, the highest level prior to this, the docs said that they usually give IV antibiotics at 1600.  Hopefully we can get it down before that has to occur.  I do feel that this EBV is responsible for her congestion and without her smelling senses it is difficult to get her to eat.  We need to kick this once and for all.  Maybe the IV stuff won't be fun, but maybe it would be the best way to get rid of it!  We'll see!

July 15, 2005...  Lili had clinic on Tuesday - bad blood draw.  Sometimes they just don't seem to know what they're doing.  It wasn't fun.  Lili cheered up and we went on.  Her labs look fabulous!  She has some more bumps and she had a dermatology appointment Thursday before her Speech Therapy.  Derm took some scrapings and is testing them.  It's probably just acne or something.  She gets them so often I just wanted to get them checked out in case there is something we can do to get rid of them.  We tried a 6 week course of antibiotics, but it didn't help.  We'll see.  Lili had a good time at Speech Therapy.  She isn't eating, but she is tasting EVERYTHING!  It's coming along, I just feel like nothings really going to go forward for here since she can't breath out of her nose.  She's been congested for about 8 months now.  She saw the ENT in February, he thought it was just a cold and she'll get better.  Well, it's been 5 months since that and cold season is over, although alergy season IS here.  She tried Zyrtec, it didn't work.  She's trying Claritin now.  Lili also had an appointment with Pulminology last week, Dr. Lewis.  She's great!  She decided that Lili should have a CT of her sinuses, allergy testing and a possible sleep study.  Her breathing while she is sleeping is extremely labored and she wakes up not being able to breath quite often throughout the night.  Anyway, the ENT, Dr. Passimoni, wants Lili to be on an antibiotic for 3 weeks before the CT.  Apparently this antibiotic (Omnicef) works best for sinus infections and they want her sinuses in the best condition possible for the CT.  Why didn't we try it before?  Anyway, that's were we are right now.  She doesn't have a doctors appointment for at least 3 weeks! pending other test results.  We'll take it.  Otherwise, Lili is doing wonderfully!

July 26, 2005... Lili spiked a fever around 3:30am Monday morning and we ended up in the ER.  She was admitted and is still there.  Her kidney is doing great, but she has a viral infection somewhere.  Antibiotics are being pumped into her.  Her tonsils are also looking large.  Lili was supposed to have a CT after three weeks of Omnicef, but they are going to do it Thursday.  They want to look at her tonsils, adnoids, sinus cavities and lymph glands.  She is feeling pretty icky and I hope she'll be better soon.

July 28, 2005... Lili had her CT today.  She handled it pretty well.  Coming off of those drugs is always a little hard for her, plus she's not feeling very good, so it was a tough day.  We did get some preliminary results - large tonsils and adnoids!  I'm hoping the consult with the ENT team will end with a date for surgery to take them out.  On the viral front, I think it is her tonsils causing the grief.  All of the swabs and samples are negavite and the cultures haven't grown anything yet.  Hopefully we'll get out on oral antibiotics and a date to get out her tonsils and adnoids!  I'll keep you posted.

July 31, 2005... We brought Lili home yesterday.  She got a bath and a good night's sleep and she's like a new person!  She seems to feel much better.  She is going to get her tonsils and adnoids removed, but we don't have a date yet.  I'll keep you posted. 

August 18, 2005... Lili had her tonsils and adnoids removed on Friday, August 5th.  The surgery went well and she spent the night just for observation.  We brought her home the next day.  She was pretty sore.  She's been drooling and hasn't been talking too well, but it's getting better everyday.  She can breathe through her nose for the first time that I can remember!!!  Lili started back at daycare yesterday and she had a blast!  Most recently we found out she has a pretty serious bacteria in her stool, but I'm thinking she's kicked it already.  We're waiting for results.  Hopefully it'll be gone and she won't have to be on any more anitbiotics for a while!!! 

October 28, 2005... Wow!  It's been a while since I updated this!  That's a good sign!  That means Lili has been doing wonderfully.  She had clinic on Tuesday and everything was great.  Her prednisone, after three month ramp process, is down to every other day - very good news!  She's tasting everything, loves ketchup, mayonaise, cheese, ice cream (Gee!  Can't tell we're related!) and she's also drinking her formula!  We changed it and it tastes like cocoa crispy milk - yummy!  She's drinking about 6 ounces a day, give or take, so that's one less bolus we have to give.  Little steps!  She has had a cold already and hasn't landed in the hospital!!!  I'm hoping this is a pattern!  I don't mind wiping her nose, just please keep her out of the hospital!  I'm sure it is hugely based on her tonsils being out and her meds lowered.  She's at once a month clinic right now, but starting next month she'll be down to every other month!  That is awesome!!!  We are very thankful that Lili is doing so well!  Peace and Love to you all!!!

November 25, 2005... Lili has been doing pretty well.  After I wrote the update last time, Lili ended up in the ER one VERY early Sunday morning.  They couldn't find the source of the fever and she wasn't septic or anything... Bruce and I thought it was her ears cuz she was pulling at them and saying that they hurt.  The ER doc at Beaumont didn't see anything wrong with them.  (Too bad Bruce didn't have his otoscope!)  We took Lili home and she continued to have a fever through the night.  The next day I took her in to see a pediatrician... Both ears were infected!  We started her on Ceftin and she was better in 24 hours.  Luckily that is all it has been AND she wasn't admitted!!!  She was drinking ALL of her day boluses before the ear infections and then she stopped drinking them.  Ever since she only drinks - maybe - one a day.  That's ok... she's drinking a little chocolate milk and she can't get enough peanut butter!  She LOVES the stuff!  I try to mix it with other things, but she knows and won't eat it.  She started with eating it off of a pretzel, but now doesn't even bother with the pretzel and just eats it with a spoon.  I try to get her to drink something with it so she doesn't choke herself.  She just LOVES the pb!  She has her last monthly visit next week and then she goes to every other month!!!  That will be awesome!  Thanks for all of your support and Happy Holidays!

December 9, 2005... Well, Lili has been seeing the doctors a lot lately.  Last week her kidney area was tendor and causing her discomfort.  Her labs looked good and she wasn't showing any other symptoms, so they attributed it to gastrointestonal problems.  She's doing better in that area.  I had to take her to the pediatrician yesterday because she has pink eye.  Then, this morning I realized I was coming down with it.  We both have runny noses and coughs, too, so it will be a long week-end for us!  She's doing pretty good with the eye drops - almost better than me!  Oh yeah... Lili has gained weight like mad the last month.  She's been eating so much and her nutritionist, Joan (whom we TOTALLY love and TOTALLY miss), is no longer working in nephrology.  They are without right now and Lili's diet needs a HUGE readjustment!  She's eating peanut butter, pudding, ice cream, milk, ketchup, yogurt smoothies... tons of stuff with fat and calories and we haven't really cut her formula at all.  From November to December she gained 3 pounds!!! That is 10% of her weight!  We're hoping to get things under control in the next few days - or I'm gonna start cutting the formula!  Guess that's about it medically.  Happy holidays!

February 16, 2006... Things are going pretty well.  So much better than last winter!  She's been sick quite a bit - mostly ear infections, but not in the hospital once!  The ER once, but no admit!  She has been to the pediatrician a TON of times, but I'd perfer it that way.  In a couple of weeks, Lili has an appointment with the ENT.  They want to see if they think she should have tubes in her ears.  Her EBV is up to 200 again.  They have put her on an antiviral for 90 days and put her Cellcept (antirejection) on hold.  We tried this before and it seemed to help, so we'll see how it goes.
Her eating is pretty good.  She isn't really into peanut butter anymore.  She's really into "white yogurt" (vanilla yogurt) - I mean REALLY!  She's also eating chocolate pudding, ketchup and drinking apple juice and some of her formula again.  She likes smoothies and Dum-dum suckers are her favorite.  I want to try and broaden her tastes, but I guess this is kinda normal for her age.  We're just taking it one day at a time.  Hope everyone is doing well.  Peace and Love.

March 10, 2006... Lili has been off of her nighttime feeding tube for a couple of weeks now.  It is AWESOME!!!  No more hooking her up at night.  No more huge messes when the tube comes undone, no more being tied down to her bed.  She actually gets up on her own in the morning!  No more filling bags, taping tubes, beeping noises... Lili can wear one piece zip up jammies!  It's the first time in Lili's life that she hasn't been hooked up to a machine at night!  It is FANTASTIC!!!  I always knew this day would come, I just can't believe it's here.  Next step - cutting down boluses.  Dr. Kershaw finally cut down the fluid so that I can fit in all of the formula during the day - that's how we got her off overnight.  She's eating so much I'm hoping we can cut it down even more.  The neph team just hired a couple nutritionists (they haven't had one for about four months now - unacceptable if you ask me) and they should be ready for consultation pretty soon.  Hopefully soon when Lili wakes up and wants to eat, I can let her eat instead of having to give her 9 oz of formula first.  Baby steps!  Her EBV is back down to 80, which is great.  She had an appointment with the ENT (Dr. Passamoni - he took out her tonsils and adnoids in August) and had a hearing test.  Her hearing seems fine and he said it was up to me if I wanted her to get tubes.  There is no ear drum damage, so it's not medically necessary, but it could help cut down on infections and antibiotics.  We'll see how the rest of the cold season plays out.  Other than that, Lili's labs are great and her kidney is working fabulously!  Yippies!!!  peace and love

May 28, 2006... Lili is doing wonderfully!  She is down to 4 tube feeds a day and we're still working on getting the volume down.  She is eating MOSTLY Danimals drinkable yogurts... she likes an occasional milkshake, chocolate pudding, apple juice, fruit snacks (tasting only) - we're still working on it.  She is still going to Speech Therapy for eating.  I just didn't realize it would be so hard.  Now she's three and things are on her terms even more.  I guess it'll happen when she's ready!
Her labs have been great and no illnesses lately.  Sniffly nose - maybe allergies, but things are great medically for her.  They picked up her feeding pump - it was a momentous day!!!  I also just threw out the rest of her yucky E028 formula, which was expired.  It felt good to get rid of it!  I also cleaned out her medical supplies.  It seems I can get rid of more and more.  I'm looking for a place to donate them.  It's exicting to only have 1 1/2 shelves for her stored medical supplies!  Baby steps!  We're nearing the 2 year mark - I can't believe it!  She's such a miracle and certainly an inspiration to me.  I am blessed.

August 7, 2006... It's been a while, guess that's good!  Lili had another ear infection in June, so we decided to go ahead and put tubes in.  She got those put in last Thursday (8/3) and so far so good.  The procedure was quick, but we had to be there at 7:30am!  She knew what was up, so they drugged her before they took her back.  She was silly and loopy on her way back.  Lili had a bit of a struggle getting out of anesthesia.  Grumpy, cranky, Screaming... it took all we had to get her dressed and get her on her way, so she would be comfortable at home.  Once we walked out into the hall she was fine - running around and saying hi to everyone!  We're glad everything went well and we're hoping for a healthier winter!

Septmeber 18, 2006... Lili is doing wonderfully!  Labs have been great - haven't even had to do any re-checks - single blood draws the last three months!!!  We're still working on the eating... day to day... she's trying things a little more.  Ga started the "you can get a sticker if you try this" method.  It works about 40% of the time.  She wants to go to school next year and we've told her that she needs to eat before she goes to school, so we're hoping that will help her decide to eat more.  Her potty trainging is great!  Only a diaper at night cuz she gets a 10oz bolus before bed and she can't be expected to hold that in all night!  She is going to clinic once every three months --- sooo awesome!  They miss her, though!  Lili has therapy once a week, so we stop by the office every once in a while to say hi to the office.  They love her visits!  We are blessed.

October 30, 2006... There is nothing to report.  Lili has been extremely healthy and we've been extremely lucky!!!  We're heading into cold season, so we'll keep our fingers crossed that this will be the best winter ever!  That means only a handful of visits to the Pediatrician and none to the ER!!!  She has labs tomorrow (oops - late this month).  I hope they continue to be stable as they have been for the last few months.  We're blessed!

December 1, 2006... Lili had clinic at the end of November.  Her labs have been great for sooo long... we are soooo lucky!  They said she was growing nicely.  We're still working on her eating.  It is so frustrating!  We worked with her nutritionist and reduced her bolus feeds - kinda.  She is down to two food boluses, but we have to give her a bolus or two of water throughout the day if she doesn't drink enough.  Still baby steps.  She's still in therapy once a week, but with her age it's kinda on her terms.  We'll just keep working at it as much as we can.  It isn't easy, but I just keep thinking "it'll happen one day" --- we just don't know that day yet.  Until then we'll just keep working and hoping!  If that's the only issue... we'll take it!!!

February 13, 2007... Lils had clinic today.  We saw the whole bunch - doctors, nutritionist, social worker, nurse... we mostly discussed Lili's eating issues.  Her health has been great, luckily!  No ER or even pediatrician since the cold season started!!!  Those tubes in her ears are wonderful!!!  Plus, she's getting used to her meds and her body is adjusting.  She and her kidney have a fabulous relationship!  We're blessed.  I'm just becoming very stressed out about her not eating.  I try to let it go, but it is extremely frustrating!  I think she can and she just won't.  I'm not sure of the psychology of why, but I just want her to eat.  We'll continue to work at it and eventually she will.  I guess she's just not ready yet.  I'll just focus on her health, which is great at the time.  We are VERY lucky!!!

April 18... Lils was sick a few weeks ago.  She had a fever for a week and starting getting a deep cough.  I finally (first time this winter thank god!) had to take her to the pediatrician.  They did a blood test and a urine test, but they didn't find anything.  She just had a cold virus of some sort.  She got over it and is healthy once again.  She's starting to eat little things.  Her latest break-through was the Oreo crisps.  She actually chews them and swallows them!  It's very exciting.  Of course, she's only eating things that are sweet.  That's gonna be another hurdle.  It's gonna be hard to get her to eat good stuff, but we'll get to that later.  Right now I'm just happy she's healthy and she's starting to eat different textures.  Yippies!!! 

May 25, 2007... Lili had clinic this week.  Everything looks great!  We talked with the Nutritionist and nothing new there.  She's growing pretty well - though she is at the same weight as she was a few months ago - she added it and then lost it.  I think it's because she's thinning out.  She is still growing well on the charts.  I told her that I like the new Speech Therapist that Lili is seeing right now.  Lili has been starting to eat new things lately and I think this helps push it.  It has also gotten me more excited.  I'm going to try and spend more time playing and eating with the food.  We lost Lili's wonderful nurse, Margaret... our nursing recently got canceled:(  She worked with Lili every week and it REALLY helped.  We miss her!!!  I just want to make it a priority for a bit and see how much further we can go right now.  Other than that Lili's health is great!  We're lucky.

September 26, 2007... I guess Lili has been doing quite well medically, since I haven't written anything since May!  She's had a bug here and there, but nothing serious.  She had pink eye last week and has had diarrhea with blood in it.  I've been talking with the docs and they started her on Benefiber and Activa yogurt.  Finally, this morning her stool was MOSTLY blood.  They wanted me to take her into the ER.  Lili was only in the ER for 4 hours.  Bruce came, too.  They found NOTHING!!!  They drew blood and took more stool samples.  I feel like they don't believe me.  The GI (who never came to see her) said to continue with the Benefiber and Activa yogurt, but if the blood continues through Friday to call the clinic and they will schedule her for a scope.  On one hand I'm glad her labs are level and nothing has grown, but I'm also frustrated because she's bleeding and has diarrhea and they have no reason.  There is something wrong with my baby.  I hope they find something.  Even if it just stops I'll still wonder what it was.  Well, I guess we'll just wait it out and see what happens.  I'll let you know what we find out. Peace and Love.  Thank you for your thoughts, prayers, and good vibes!

October 8, 2007... Last week Lili had an Endoscopy (esophegus, stomach, small intestine) and Sigmoudoscopy (small portion of large intestine and below).  They didn't see anything to the eye, but did some biopsies and found Esophogitis in the esophogus (not treating, no symptoms) and Ulcerative Colitis in her large intestine.  Well, it isn't exactly Ulcerative Colitis, but in transplants - liver and kidney - this is what they classify it as because this is what it most resembles.  So, Lili's GI doctor, Dr. Lopez, would like to treat it with some stomach medication and suppositories.  We're still having trouble getting these from the pharmacy since Friday!  Anyway, he also would like to do a full colonoscopy to make sure there isn't anymore - or other things, which he doubts - in the full large intestine.  If there is, the course of treatment will switch to an oral medication.  Her colonoscopy is scheduled for this Wednesday at 9:30am.  She is to be on full liquids today, 2 doses of Miralax; clear liquids tomorrow, 2 doses of Miralax, and an enema; nothing on Wednesday except an enema before the procedure.
Unfortunatley my mom and dad will be leaving Wednesday to go visit Robyn in Denver.  Good for all of them... bad timing for Lils and I!  My girlfriend, Anglesia, has volunteered to go to the hospital with us on Wednesday.  She needs a present for that!!!  Besides the diarrhea and blood, Lili is TOTALLY Lili!!!! 
Thanks for all of your support, prayers, and positive vibes!  We love you and I'm sure things will be back to normal Thursday morning when she's up at 6am ready to go to school!!!  Peace and Love to you all!!! xoxoxo

October 17, 2007... Lili had her colonoscopy last week.  I called Lili's GI nurse yesterday - at the exact time she was talking to Dr. Lopez about Lili... I'm psychic!  She verified that Lili has Ulcerative colitis in her whole colon.  I'm a bit freaked out, but am going to schedule an appointment to talk with the doc and find out the exact risks to Lili.  She is very susceptible to cancer (paternal grandmother had breast cancer, paternal aunt had skin cancer - plus her meds make her more susceptible to cancer), so I just want to find out what this disease means for her.  I will keep you all updated on what's the what with Lils.  She is still having blood and abdominal pain.  Luckily we are switching to an oral medication and can stop the suppositories in a week - those aren't fun with a 4 year old, especially one with an attitude!!! :) I asked the nurse how long she'll be on the oral meds and she said, "indefinitely."  The Prednisone (steroid) that Lili is on will help treat it, too.  I just need more details and information from the doctors to really understand the scope of what this means for her, being a child.  She is tough and we are blessed for that.  Thank you for all of your prayers and kind words.  xoxoxoxo

May 21, 2008... Lili hasn't been to the doctor in a while!  I took her lately to get her feeding tube looked at.  It has been leaking almost non-stop.  She goes through tons of bandages and shirts everyday.  I'm ready to take that thing out tomorrow!  She's been eating pizza!!! and lots of other stuff including taking almost all of her meds orally!  I asked pediatric surgery how we go about taking the tube out.  They said that they like to go 3 months of not using it for nutrition while the child still grows.  I've stopped using it, so we have about another month and a half... if she's still growing ---- it's OUT!!!  I think the leaking is getting to her, especially at school with the other kids.  It smells like vomit and is extremely uncomfortable for her.  If I have it my way, she'll be tube-free by the 4th of July!!!!  I'm sure the docs will want us to keep it a while longer, but I'm gonna do what I can to get it out ass soon as possible.  We are all tired of it!  Otherwise, her kidney is great, her ulcerative colitis is under control (no diarrhea!)... so we are very lucky! xoxox

June 30, 2008... Lili had clinic this Tuesday.  She looks great.  Actually, a few months ago I asked the surgeons how we would go about getting Lili's tube out.  They told me that they like to have no supplemental nutrition given for three months with her still growing and then they would discuss taking it out.  Well, I stopped giving her supplemental nutrition - I was just tired of this tube.  She's had it since she was 3 weeks old, she's 5.  It leaks horribly and has been hurting her lately.  That is one of the greatest things, actually.  She started getting tired of the hurting and the leaking - changing bandages and clothes 3-4 times a day was getting annoying to her.  It helped my cause!  She began eating breadsticks, pizza, mac and cheese - she is eating nicely and still growing.  I asked if we could get it out and they said yes!  I was expecting a fight from her nephrologists, so I was planning what I would say and how to defend my case... I didn't have to!  They just said, "That's fine."  Holy cow - we can actually do this!  We scheduled a surgery date - we tried taking it out and letting it close on its own, but it wasn't budging.  Since she's had it for 5 years she only had a 50% chance that it would close on its own.  We have a surgery date of this Thursday, July 3rd!!!  Lili and I are both extremely excited about getting it out.  Of course, I am also nervous.  It's been easy to give meds, give fluid if extra is needed... it's been a crutch for her eating.  I'm afraid that she'll just stop eating after it gets taken out or that something will happen where we'll need it.  I'm just as use to having it as she is.  I've never known her without the tube... It'll be strange to look at her without a protusion in her shirt.  But, I will CERTAINLY not miss the leaking and pain it causes her.  I need to think positively - we've been waiting for this for 5 years!  Thursday will be the first day of a new life for us.  We thank you for all of your support the last 5 years!  I'll let you all know how it goes.  We are blessed!!!

September 28, 2008... Lili is doing wonderfully.  She had clinic last week and her labs look fine.  She didn't even cry during her blood draw - which is good, but also a bit sad.  She was proud of herself and it was nice.  I talked with her docs about reducing her Prednisone, which they agreed to.  It will be much better for her to be on the lower dose.  I'm just hoping her colitis won't come back as we lower the does.  Keep your fingers crossed!  Other than that all is good.  Oh yeah.... Lili had her G-tube taken out July 6th and is doing fantastic!  She mentions it all the time - "Mom, I'm not leaking!"  "Mom, I can play all day like the other kids and don't have to change my clothes."  She's increased her eating and LOVES grilled cheese and mac n cheese.  She doesn't really care or veggies and fruits - just like a regular 5 year old!  We are blessed!