Hannah i still positive for the c diff, the drs office called this morning and it wasnt  a surprise to me :)  she started a 6 week course of oral vancomycin and 10 days on flagyl on thurs.  Hoping this is going to be what gets rid of it.
  She has been having more seizures lately so neurology increased her phenobarb a little on wed.  It does't seem to be helping at all yet.  We had a new nurse last night and Hannah broke her in good, she had 13 sz for her and didn't pee on her own so she cathed her for over 300!  she said at least she kept her busy!
  I added some Easter pics of Hannah.  I love her new dress and couldn't resist the shoes, I didn't buy them for Easter but they really did look cute with the dress!
 Jenn and Jonas are coming tonight to stay with us a couple days while Bob is in san diego.  We can't wait to see them and I will get some new grandbaby pics tomorrow!  All 3 babies will be here for lunch after Church!  chuck and I are excited because we got the spare room cleaned out (almost) and bought a bed so they can sleep there now!  we got rid of a lot of baby toys and equipment, took it to the consignment shop!  Kinda wish i had taken a pic of it before we cleaned it out but believe me it was a wall to wall junk room!  LOL

  On the way home from my mom's house on Easter there was a beautiful rainbow.

Hannah, Jonas and Easter card

  I had to laugh, I put in a call to nephrology to ask about bloodwork and to see if they could check with infectious disease (ID) since they hadn't called dr kyle back.  The lady who answered the phone was from ID taking nephrology's calls  LOL   She said she would see what she could do.  They called Dr Kyle back right away.  the dr she talked to said he wasn't familiar with hannah but he said lets do oral vanco and flagyl together and then alinia again and then if that didn't work they would put someone else's bm through her gtube to colonize it, sounded pretty gross to both dr K and I...later she called back and said another ID dr called that knew Hannah and suggested doing the oral vanc for 6 weeks and starting the flagyl at the same time.  So that is what we are going to do now.  ID said 6 weeks should get rid of it,, Dr K told her you don't know Hannah :)
  My 5mo grandson Jonas has bad reflux and eczema.  A few weeks ago he went to an allergist and they said he was allergic to egg whites.  Then Jenn took him to a dermatologist and told him about mucous in his poopy diapers, he immediately knew why!  He has allergic colitis, he is allergic to the proteins found in cows milk, soy milk and breast milk!  they did an upper GI on him this week and everything looked good on that.  So now he is on a special formula, pray that works for him.

I made a cute Easter card on jib jab with hannah, my grandbabies, taylor, logan and jonas and my great nephew Landon...
Easter card
 will post more pics after Easter

Hannah stil has c diff :(

so, even after 10 days on the alinia and now about 12 days off of anything she still has c diff.  dr kyle called the ID dept today but so far no one has called back.  It's getting frustrating...and I wonder what it's doing to her poor tummy..she does act really annoyed sometimes like today but not sure why! 
I need to get some new pics of her.  Took me going to every store in dover to find her an Easter dress...all the dresses are sundresses and Hannah just doesn't look good in sun dresses...the one I got looks good on her and i was able to find a "shrug" to wear over it.

Hannah update

Hannah finished the oral vanco, then did 10 more days of flagyl.  We saw nephrology on Monday and they had talked to ID and they wanted her to start on Alinia for the c-diff.  Took a couple days to get the med in finally!  Her bloodwork looked good except for her hemoglobin.  The dr said he couldn't believe that they had just suddenly stopped her procrit before...I just looked at him and was thinking I didn't stop it he did!  So she is getting a shot every two weeks of aranesp.  We don't have to see nephrology for 6 weeks this time.  bloodwork every 4 weeks.  And we don't have any appts at dupont this month!
  She has been having more seizures and a little longer like she did before her surgery. Since then she has been having shorter szs.
 We are still waiting for a part for her wheelchair to keep her feet from going under the footrest and I am tired of seeing her feet dangle.  I saw on a blog someone (thanks Holly) had put a fun noodle on the front of the electric wheelchair to protect it and I realized that might work for the back of hers...so this is what I did.

it works but she doesn't like it very much! :)  sorry the color isn't very good on the close up.
  Our grandson Jonas is almost 5 months old.  He has been having really bad excema.  They have tried everything and nothing worked so they sent him to an allergist.  They found out that he is allergic to egg whites!  Eggs are in everything!  Right now he is just eating baby cereal and Jenn is weaning him off her breast milk.  She has had to restrict what she eats so much , this is easier on both of them.  I am praying he outgrows it.  He is getting so big and we miss him so much.
 taylor is 2 1/2 now and finally getting the hang of potty training.  Logan is almost 3 mo. and getting bigger too,
  I love my grandbabies.
  and need some new pics..

Hannah update and new pics

our grandbabies Jonas, Logan and Taylor

wow, didn't realize I never posted an update.  Hannah was on the flagyl for C-diff for 10 days, we restested her and she is still positive.  Dr K started her on oral vancomycin friday.  They have to do blood levels for the vanco after 48 hours so now she is having bloodwork done on Sunday...thankfully she still has the central line so the nurse can come here to draw it.  She is going to draw the other labs too...I am a little concerned that her eyes are puffy gain but the nephrolgist that we saw last doesn't think it has anything to do with her labs...that's the bad part of seeing all the drs in clinic, they all do things differently.  Her bms had not been as frequent but now that she is on the vanco they are back and worse again :)  today I was going to cath her, she had a big  blowout, had to roll her from side to side to clean that one and she had a big sz (while cathing her) and that made her cough and need to be sucitoned...I laughed and told her there was nothing left for her to do at that moment LOL
  She was still having more seizures after we came home from the hospital so we changed her phenobarb back to 3 times a day to see if it helps.  they had changed it twice a day in the hospital after dialysis.  She is stil having some little ones  but it's only been 1 week since the phenobarb change. 
 She has an appt on wed for ortho followup, her nurse and PT are concerned about her tailbone being more prominent since surgery.
  I am tired of taking her to the dr, she has been to at least one appt every week since we got home after her spinal fusion stay 12/29...so far no appts the next week :)  hopefully it will stay that way :)
 She finally got her new wheelchair in feb!  After 7 months!  It is so much wider because of the battery tray on the back for her suction machine..have to make adjustments on it for hannah houdini puts her feet under the footrests no matter what we do.

in her new chair

 bracelets from 7000 bracelets for hope

 Hannah and Jonas

 in her new chair

 houdini's foot

 Hannah in her new chair and her new best friend Malachi in her old one

wearing her jeans for rare disease day

Purex Crystals

Have you tried the new Purex Crystals Fabric Softener?  Purex Crystals

Hannah is home

WE came home this afternoon...she is going to be getting citric acid now.  She is going to see dr kyle on tues and bloodwork...she also has an appt with nephrology on the 22nd...we love everyone on the rehab floor and miss them but are so glad to be home...she has been sleeping most of the time since we got home.

with her new unicorn that her new friend malley gave her!

logan 1/12/11  taylor 9/1/08 and jonas 11/5/10
And here is one of the first pics of our grandbabies together.  this is the first time that logan and jonas got to meet.,