joan's blessings

Hannah is sick and new surgery date

2012-02-11T07:53:00.000-08:00

Hannah is sick again, this time worse than last month, actually I don't think she completely got over it last time. She had a temp almost 102, heart rate and respirations were up and O2 was lower than normal. I called pulmonology on thurs and since she already had an appt with him friday, they decided that was best ( I had wanted to cancel the appt, we had our first bunco game last night and didn't want to be out all day and night ) The dr was going to look at her new trach anyway, it's a new custom trach and he wanted to see how it looked, while in there he showed me how red and inflamed her airway was, he said it was tracheitis. He put her on cipro, nebulized tob (antibiotic), 3 days of prednisone and extra xopenex. She is going to stay on the extra xopenex and tobi til her surgery (March 5) She is slowly getting better, we almost had to use O2 on her but she got better. She hasn't been sick like this in years, she rarely gets sick and hasn't used O2 in a long time either. Dr C and the respiratory therapist both said this year has been really bad for even normally healthy people getting really sick . We need to pray that she gets over this quickly, she has a neurology appt on the 21st and I want to see if we can do pre op on that day too, but she needs to be healthy! they finally called on wed with the date of march 5, being admitted on saturday the 3 for 2 days of bowel prep. In Jan Medical Assistance would only approve 1 day in the hospital for the bowel prep but with all of Hannah's labs like sodium etc being whacky they really need to observe her while going through it. Please pray that they will approve the two days in the hospital.
Thanks again for the continued prayers for us and Hannah!
j

Bloodwork results

2012-01-30T14:57:00.000-08:00

Christmas 2011 our 3 daughters and 3 grandbabies

I talked to endo last week and she said all of Hannah's pituitary hormones, growth, female, cortisol, puberty and diabetes are all within the normal range. So she was cleared for surgery then. I let the urology nurse know and she said she would talk to the dr. So I called again on friday and they said they were waiting for the nurse to talk to the dr, later she emailed me to say he wanted a letter from the endo clearing her for surgery,. So, I called endo and they said they would take care of it..I just keep wondering why the dr didn't just call the other one himself, they are both at the same hospital :( she did say they were already scheduling into march so no quick dates like I wanted. So, now we are back in a waiting game...it gets very frustrating! Please pray they can get this all straightened out quickly and get it scheduled. And pray that medical assistance will approve the two days bowel prep in the hospital.
We also bought a much needed new(to us) van a couple months ago, and it needs a lift in it. We decided not to move the old one into the new van, it has been moved too many times. We have applied for some grants for financing but haven't heard anything from them yet. We really need to get the new one on the road, we have been having a lot of trouble with the old van lately. Please pray we can get funding for the new lift, I would really like to start driving the new one :)
A friend of ours said yesterday that nothing ever goes easy for us and he is right :(

Thanks so much for all the continued prayers for us
joan

Hannah is sick

2012-01-16T08:16:00.000-08:00

For over a week Hannah has had a lot of secretions but by thursday she had a lot more, over the weekend, they have started to look infected. I am waiting for a call back from pulmonology to see if we should start her on tobi nebs for infection. After her 4months of c diff I am nervous about putting her on an oral antibiotic. Tobi is an inhaled antibiotic that works on the trach secretions. She has been running a slight temp off and on...heart rate and O2 level have not been too bad. It's been a long time since she was sick, I can't even remember the last time. I got it from her but don't feel too bad, just glad I got it from her instead of her getting it from me :)
Still waiting on the bloodwork results form endo. Will post more when I know more. as always thanks so much for the continued prayers for Hannah and our family.
j

Surgery postponed

2012-01-08T17:25:00.000-08:00

We saw the endocrinologist on friday. She said that she was going to make our life a little more complicated :( she did but I really liked her. Hannah has an underactive thryoid so she put her on synthroid. And then she told me that she has a problem with her pituitary gland having low levels. They are concerned about her cortisol levels. I am taking her for bloodwork first thing Monday morning, it has to be done at 8am. Endo and urology decided there was too much risk for her to have surgery not sure of the cortisol level, it could cause a lot of problems, it could have contributed to her kidney failure during her spinal fusion but there is no way to know. So we are postponing it. That will give them more time to pre auth the two days of bowel prep in hospital, they are not comfortable letting us do any of it at home with her history of low sodium, calcium, etc.
We saw rheumatology too. They examined her very thoroughly and didn't find anything to support the high levels of rheumatoid factor, they said it 's not unusual for a girl her age to have those levels. So, thankfully we don't have to add them to our specialist list. They were the 5th new specialist we have seen since her spinal fusion :(

Surgery drama :)

2012-01-04T17:52:00.000-08:00

Hannah's mitrofanoff surgery is next wed, 1/11. She is supposed to be admitted 2 days before for bowel prep. Yesterday morning the urologist called and said that the allergist didn't think she should have surgery until she was seen by Endocrinlogy and Rheumatology. I panicked and he said he would call dr M, the medically complex dr. I called his office too and also called allergy. the allergist that made this decision doesn't work at dupont anymore. After a lot of phone calls, they made her appts on friday with endo and rheum....amazing! So I was talking to urology and telling them about the appts, she mentioned hannah was to be admitted on tuesday! I found out that her insurance (medical assistance) doesn't think she needs 2 days of bowel prep! today another lady called from urology and said she was trying to find out what was done today, the dr was going to do a peer to peer review about this. Because she is also a nephrology patient they want to be careful how they do it. I am still praying MA comes through and lets her have the 2 days, otherwise we are going to have to do some of that here :( The dr called the pre auth # and they also did a letter of necesity...please pray they can work it out. Hopefully I will know more tomorrow.
When she had bloodwork done for allergy, he did testing for her thyroid and auto immune disorders, she has high thyroid and ANA levels...so she must be in a lot more pain that we realize. I am a little nervous at what they are going to tell me at the appts.

Hannah's appt with the medically complex team

2011-12-12T16:36:00.000-08:00

Hannah was referred to the medially complex team (diagnostic referral drs) I told him that nephrology said they were surprised we hadn't been referred there before now, dr M said I am surpised too! He went through a lot of her medical history especially in the last year. He was surprised that she hadn't had a 24 EEG...her nuero says we know she is having seizures but dr M said he wants to know if she is having continuous szs...I agree with him, I already know she is having more szs than we realize. I told him about Hannah's leg swelling (just her right one) and he thinks she has lymphedema. He changed her feedings so she is getting boluses at night too instead of continuous. We haven't started that yet, he wants us to check her blood sugar in the mornings and we don't have a glucometer yet. He also agreed that the mitrofanoff surgery is the best thing for her. He was looking at her bloodwork and said it doesn't look like she has von willebrands..she does have some kind of clotting disorder so he was going to talk to hematology before out appt next week with them.
We have an appt with orthopedics wed and next week an appt with hematology for her bleeding disorder and surgery. then after Christmas we will have pre op. She is being admitted on Jan 9 for bowel prep and surgery is Jan 11. Urology said they start feeding them 2 days after surgery and she has to have a bm to come home. I figure about 1 week in the hospital if all goes well and she doesn't throw any curve balls at us :)
we are getting excite about Christmas, I think I finished my shopping today and next week, our middle daughter Jenn and her family are coming..I can't wait to get all my grandbabies together again.
Chuck, Hannah and I want to wish you all a very merry Christmas!

This shows the swelling in her right leg

A Tribute to Special Needs Moms

2011-11-11T08:54:00.000-08:00

Hannah's surgery

2011-10-31T14:26:00.000-07:00

Talked to urology today and Hannah's surgery is going to be on jan 11, she will be admitted on jan 9th for bowel prep (thankfully she will be in the hospital and I don't have to do that ) She asked if I wanted the first available but i told her she has an appt with the medically complex team on dec 8 and the 21st sees hematology...glad we won't spend another Christmas in the hospital.

Urology Appt and Bronch Results

2011-10-26T14:30:00.000-07:00

It was a long day yesterday. Chuck went with us so we had planned on leaving at 8:00...a few minutes before he ran to get gas in the van. Since the windows had a lot of dew on them, her rolled them down so he could see. unfortunately the passenger window wouldn't got back up. He had to take the whole window apart and get it back up so we could go. He found out the motor had gone out in it, so he got the window almost all the way up. He got the part later so he can fix it...so that made us 1/2 hour late leaving but since he was driving and could drop us off. we go there on time.
The testing for urology was first. While the nurse was setting up and waiting for the dr we talked about Hannah's problems and I asked her about the Mitrofanoff and she said that she would definately qualify. She brought it up to the dr that did the testing and again the dr that we saw in clinic. He is going to go ahead and schedule it, it should be a simple procedure unless they get in there and she doesn't have an appendix. Then they will have to do more. This would make things nice for me cathing her but really good for Hannah! He asked me what drs does she see? I just kind of looked at him and he started asking different drs if we see, then he asked if we are followed by the medically complex team? I told him no but the funny thing was it was listed on my paper to ask the drs why we aren't followed by them. He got us an appt on Dec 8 with Dr Malatack. He wants us to see him before we have the surgery.
After lunch we saw Dr Chidekel, our fav dr to do the bronch. Brian, one of the resp therapists came over to us in the waiting room and started chatting, he said long time no see, I laughed and said that's a good thing :) He was there to help with the bronch so they took us back pretty quick. They did see a lot of Tracheomalacia in her airway when she coughs. That is why she is on the vent but I haven't been using it as much during the day as I used to. She does have room in her airway to go up a little bit in size of her trach but not enough to go up another size so we have to do another custom trach. She is in a size 5.5 which is the largest pediatric trach, the length of that is 52cm and an adult 6.0 is 70cm so they are ordering in between, a custom 60cm. She already gets a custom trach because she has a cuffed trach and thebivona flex.tend doesn't come with a cuff.
We had a pretty good day, chuck took his work laptop and got some work done while we were there. We met my mom and took her out to dinner so that was nice.

Hannah long overdue update :)

2011-10-23T13:42:00.000-07:00

Hannah today in her sparkly outfit today

we have had a pretty good summer, chuck and I got to go on a vacation starting Labor Day night, we went to Williamsburg til friday and then went to see our middle daughter Jenn, her husband Bob and our beautiful grandson Jonas til Sunday...Can't believe Jonas will be a year old on Nov 5! He is growing so fast and doing really well..we really miss them.
Hannah has had a few colds and fevers off and on for a while, nothing major though. Her bloodwork has been doing pretty good.
I have to straight cath Hannah's urine every 4 hours during the day and overnight the nurses but in a cathter, tape it to her leg and let the urine run into a diaper. She cringes almost every time we cath her and especially when we take the catheter out...they think she could be having bladder spasms..we get a lot of urine everytime and it gets to be a pain every 4 hours especially trying to find someplace to cath her in public. We finally are going to do some testing from urology this tues (10/25) and see a urologist after, not our regular one, he isn't available that day. Hopefully we can get some anwers. I have been praying that they bring up having a mitrofanoff done, if they don't I am...something has to be done to make it easier.
She is also going to see the pulmonologist and have a bronch done it clinic...her cough sounds like her tracheomalacia is worse. He is hoping he can upsize her trach and see if that helps. The only problem is I am not sure if we can get a custom bivona flex tend with a foam cuff in a size 6.0. I haven't been using her vent a lot during the day so I am wondering if that's why.
That is going to be long day so chuck took the day off since it might be dark going home.
Pray for us for answers on tuesday. I will try to remember to update when we get home. Thanks for the continuing prayers.

pulmonolgy appt

2011-08-20T15:59:00.000-07:00

Friday Hannah had a pulmonology appt. For a while now she has had this weird cough that sounds like she is coughing her trach out. And it gets hard to suction her. I had suspected for a while that her Tracheomalacia had either come back or just gotten worse. A little history, Hannah aspirated right after she was born. That resulted in a NICU stay of three weeks and her first helicopter ride. that was the beginning of many aspiration pneumonias. When she was 3 1/2yo she got her trach. The next year we changed hospitals to AI duPont in Wilmington. We were still in the hospital all the time for aspirations no matter what we did. We almost lost her several times. Finally the pulmonologist (that we didn't like) suggested having a laryngotraceal separation surgery done. It was a scary decision and I got in touch with our old ENT who had left U of MD and we trusted. He said that he had even suggested having that done after she got her trach. the next time she was admitted for an aspriration we had another pulmo (Dr C) that we had seen a lot...he gave me some good advice and we decided to do the surgery. After that she never had another pneumonia! While there a 3rd pulmo listened to her and asked if she had tracheomalacia since it sounded like that to her. the next time we saw our pulmo I mentioned it and she said that no she DID NOT have it. She did a Bronchoscopy on Hannah. When she came out she said she had very severe tracheomalacia! That is when she put her on CPAP. She had no bedside manner at all and I just didn't like her attitude. We saw Dr C again and I asked him if he would take Hannah as a patient and explained what had happened. He was more than happy to take her as a patient. He is now one of our fav drs! He put her on CPAP through the vent and I kept her on it most of the time. Earlier this year I decided since she was doing so good and her bronch looked good to not use the CPAP as much during the day. Now, it looks like the tracheomalcia is getting worse so he wants too a bronch on her and see if we can put a bigger trach in. He did stop a couple of her neb treatments, since her lungs stay clear most of the time. But is that because she gets so many neb treatments ? that's the question LOL
we also saw nephrology and he did reduce her ferrous sulfate a little ( I am tired of that making her bms black and sticky)
Hannah keeps getting splotchy spots and sometimes hives on her belly and groin area, it seems to be getting worse so I am going to make an appt with Allergy. The nephrologist was concerned about that and we went over her meds again and still can't figure it out. Leave it to Hannah to make everything hard to figure out :) I have a pic on my cell but for some reason can't get it on here.

Opinion Outpost Surveys

2011-08-03T06:56:00.001-07:00

I have been taking a lot of surverys for cash and gift cards..I had been taking surveys with Opinion Outpost for a while but never thought to look at what I had made....I was shocked when I had enough to get an $80 amazon gift card (could have gotten cash but knew the check would take a while and I want to buy something for Taylor's bd at amazon)

http://www.youtube.com/watch?v=GQYENKT5El0 I've been getting paid for my opinion! You can too! Check this video out for some amazing opportunities to get paid for sharing your opinion! Follow my link to join Opinion Outpost: www.opinionoutpost.com/join/8336127

Hannah is a blue rose

2011-07-27T17:13:00.000-07:00

My sister Pam gave Hannah this blue rose blanket for her bd to go with this story

         Blue Rose


Having four visiting family members, my wife was very busy, so I offered
to
go to the store for her to get some needed items, which included light
bulbs, paper towels, trash bags, detergent and Clorox. So off I went.

I scurried around the store, gathered up my goodies and headed for the
checkout counter, only to be blocked in the narrow aisle by a young man
who
appeared to be about sixteen-years-old.. I wasn't in a hurry, so I
patiently
waited for the boy to realize that I was there. This was when he waved
his
hands excitedly in the air and declared in a loud voice, "Mommy, I'm
over
here."

It was obvious now, he was mentally challenged and also

startled as he turned and saw me standing so close to him, waiting to
squeeze by. His eyes widened and surprise exploded on his face as I
said,
"Hey Buddy, what's your name?"

"My name is Denny and I'm shopping with my mother," he responded
proudly.

"Wow," I said, "that's a cool name; I wish my name was Denny, but my
name is
Steve.."

"Steve, like Stevarino?" he asked. "Yes," I answered. "How old are you
Denny?"

"How old am I now, Mommy?" he asked his mother as she slowly came over
from
the next aisle.

"You're fifteen-years-old Denny; now be a good boy and let the man pass
by."

I acknowledged her and continued to talk to Denny for several more
minutes
about summer, bicycles and school. I watched his brown eyes dance with
excitement, because he was the center of someone's attention. He then
abruptly turned and headed toward the toy section.

Denny's mom had a puzzled look on her face and thanked me for

taking the time to talk with her son. She told me that most people
wouldn't
even look at him, much less talk to him.

I told her that it was my pleasure and then I said something I have no
idea
where it came from, other than by the prompting of the Holy Spirit. I
told
her that there are plenty of red, yellow, and pink roses in God's
Garden;
however, "Blue Roses" are very rare and should be appreciated for their
beauty and distinctiveness. You see, Denny is a Blue Rose and if someone
doesn't stop and smell that rose with their heart and touch

that rose with their kindness, then they've missed a blessing from God.

She was silent for a second, then with a tear in her eye she asked, "Who
are
you?"

Without thinking I said, "Oh, I'm probably just a dandelion, but I sure
love
living in God's garden."

She reached out, squeezed my hand and said, "God bless you!" and then I
had
tears in my eyes..

May I suggest, the next time you see a BLUE ROSE, don't turn your head
and
walk off. Take the time to smile and say Hello. Why? Because, by the
grace
of GOD, this mother or father could be you. This could be your child,
grandchild, niece or nephew. What a difference a moment can mean to that
person or their

family.

From an old dandelion!
Live simply. Love generously. Care deeply. Speak kindly. Leave the rest
to
God.

Hannah's sweet 16 party and pics

2011-07-18T09:11:00.000-07:00

Wow, we are so overwhelmed with all the people that came to Hannah's party on saturday...she was given so many cards, gifts, money and gift cards and she didn't need any of it...we will probably use it to make some needed modifications to our hallway from her room to the bathroom!
Our friend Patti flew in from S Carolina on wed. She was Hannah's nurse until she moved away a couple years ago. She did everything including all the food, a cake, decorated cookies for everyone to take home. I couldn't have done any of it without her!
there is a great organization called Icing Smiles Inc that gets bakers to make cakes for kids who are frequently hospitalized. They found a wonderful lady in Newport News VA to make Hannah's cake, she drove over 4 hours one way to bring it to us

The cake was beautiful and we so much appreciated all that Schonna did to get it here.

there must have been at least 80-90 people there! I have a lot of pics on my facebook page, see if this link works http://www.facebook.com/media/set/?set=a.2040512223913.109353.1577530031&l=09594dcf88 I will add a few here but there are hundreds of great pics and I have almost 90 on facebook

hannah and the Icing smiles cake

Patti and I, thank you so much Patti

both cakes with their matching colors


Hannah and Schonna that made the cake, thanks again!

our family minus our son in laws, again.

Hannah is sweet 16 today!

2011-07-09T16:51:00.000-07:00

Hannah 7/95

Hannah 7/11

Hannah at birth 7/95

Wow, so many emotions are attached to Hannah turning 16yo. I think this bd is hitting me harder than any other. There are so many things that she should be doing at 16...driving, dating, arguing with us about clothes and boys...she should be thinking about graduation and where she is going to college...but instead Hannah is a 2 mo baby in her development...she is deaf/blind so that limits a lot of what she learns...she has no idea it's her bd and we have no idea what to buy her, it would be so nice to be able to communicate with her, instead we have to watch her and figure it out...even a baby can let you know with his cry. She doesn't go to school because she would always be sick...the only place she goes most of the time is Church on Sunday and to the dr. She has to have someone watch her 24/7. I am sad for the things she can't do and won't do...but I am thankful for everyday we have with her, and am thankful that she is such a fighter and has defied all the odds when she was born...we never thought we would see her turn 16 but that is another milestone passed...and I am thankful for all the people we have met, drs, nurses, therapists and teachers....and so many lives she has touched by just being here...I once said I believe she is here to love and be loved, and that is still true!
Don't forget her 16th bd party is next saturday the 16th. We never have a party for Hannah after the rough year we have had this was a perfect way to thank everyone for praying for her. So far I have almost 80 names on the list that are coming..the invite is going to be in the church bulletin tomorrow. so if I have neglected to invite you please know that you are welcome to come..just let me know early this week.

Someone I Love

2011-06-29T14:30:00.001-07:00

Someone I Love

Someone I love relies on me in ways you will
never understand.
Someone I love endures pain and challenges that break
my heart and renew my spirit at the same time.
Someone I love is unable to advocate for themselves
for things that most of us take for granted.
Someone I love will never have the opportunities
that every child should have.
Someone I love will need unconditional love and support after
I am gone, this frightens me to the core.
Someone I love encounters pity, stereotyping responses,
and prejudice at every turn, because they look,
act, and/or learn differently than others.
Someone I love has needs that require me to
allow "outsiders" to have power and input in areas
that should be mine alone to meet.
Someone I love will continue to look to me
for everything in life long after other children are able to
assume a place as part of the world.
Someone I love has needs that require more
time and energy than I have to give.
Someone I love has needs that mean I am not
able to meet basic needs of my own.
Someone I love has needs that have become the driving
force behind major decisions my family makes.
Someone I love has changed me in ways I will never
be able to describe.
Someone I love has taught me about love and about
the really important things in life...
And still others don't understand what it is to be
me, they aren't living in my skin.
~Lori Hickman~

Beautiful Things Blog

2011-06-22T14:03:00.000-07:00

Please check out the Beautiful Things Blog They are going to Zambia and are having a give away on their blog to get everyone to pray for them...There is a button on the side of my blog too!

Hannah is turning 16yo...party invitation

2011-06-22T09:09:00.000-07:00

It's so hard to believe that Hannah is getting ready to turn 16yo!

you are invited to help us celebrate!

Piggy Paint Giveaway Mommy Moment

2011-05-23T14:43:00.000-07:00

piggy paint giveaway

Piggy Paint Giveaway

2011-05-23T13:44:00.001-07:00

Green Family Blog

Book Review The Bridge Of Peace by Cindy Woodsmall

2011-05-09T09:50:00.000-07:00

Description

Love alone isn’t enough to overcome some obstacles.

Lena Kauffman is a young Old Order Amish schoolteacher who has dealt all her life with attention raised by a noticeable birthmark on her cheek. Having learned to move past the stares and whispers, Lena channels her zest for living into her love of teaching. But tensions mount as she is challenged to work with a rebellious young man and deal with several crises at the schoolhouse that threaten her other students. Her lack of submission and use of ideas that don’t line up with the Old Ways strengthen the school board’s case as they begin to believe that Lena is behind all the trouble.

One member of the school board, Grey Graber, feels trapped by his own stifling circumstances. His wife, Elsie, has shut him out of her life, and he doesn’t know how long he can continue to live as if nothing is wrong. As the two finally come to a place of working toward a better marriage, tragedy befalls their family.

Lena and Grey have been life-long friends, but their relationship begins to crumble amidst unsettling deceptions, propelling each of them to finally face their own secrets. Can they both find a way past their losses and discover the strength to build a new bridge?

About the Author

CINDY WOODSMALL is a New York Times best-selling author whose connection with the Amish community has been featured on ABC Nightline and on the front page of The Wall Street Journal. Cindy lives in Georgia with her family.

I like Amish Fiction and Cindy is one of my favorite authors. I can relate to this book a little. My youngest daughter Hannah has a rare chromosome deletion. One of the multiple issues we face is that she was born with a a bilateral cleft lip and palate. We deal with people always staring at her (and because she is in a wheelchair). Lena faced life head on even when she was discriminated against. Because of her large birthmark she taught people that inner beauty is more important than outer beauty (although she did have both). this book is a very good read, I enjoyed it. Lena helped others to overcome their "disabilities".

I received this book for free from WaterBrook Multnomah Publishing Group for this review"

you can read excerpts of this book here.
Bridge of Peace

2011-04-30T09:14:00.000-07:00

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

2011-04-23T07:09:00.000-07:00

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 :(

2011-04-21T14:42:00.001-07:00

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

2011-04-02T15:15:00.000-07:00

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..