My loves

My  loves
Our family

Saturday, April 30, 2011

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.

Saturday, April 23, 2011

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

Thursday, April 21, 2011

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.

Saturday, April 2, 2011

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 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..