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Friday, August 10, 2007

Well we are in Omaha at Childrens right now. Hannah had her peg tube placement surgery wednesday. Had a rough time but today is looking much better. It's hard to see her in so much pain. But on the bright side it is so nice to see her lil face again w/out the tube in her nose. here are some pictures I have been taking. love you all!

Wednesday, July 18, 2007

Entry for July 18, 2007~ another update on my banana

Was in Omaha again Monday and then Grand Island yesterday. I've put 400 miles on my little car so far this week. Hannah and I both feel like we have walked 400 miles. She is passed out on the couch for the 2nd time today,and I am just mentally fried.
In Omaha we seen the feeding and growth team, includes 5 different doctors. She is 6yrs and 1 month, she weighs 14.2 kilos and is 100.5 cm tall(that is 3'3" and about 31 pounds) so she has maintained but not thrived at all. she is eating a very well balanced diet and on the pump 24 hrs a day. her formula alone is giving her 80 calories per ml and she gets 1400 ml a day, plus what she eats. They still cannot find any answers. She is going to have surgery on the 8th of August, they are going to put a button in her stomach for the feeding pump, so no more tubes up her nose. We will be there for about 2 or 3 days. Dr. Attard also talked about sending her to children's in Colorado. Do not know exactly when this will happen but it is in the planning stage now. They drew another 5 vials of blood and then we were on the road for our 3 hour drive home.
Yesterday I took all 4 kids in for their checkup and cleaning at the dentist. all went well. Hannah has gotten in a couple of her 6 year molars and it is causing some problems, Her little baby teeth are so crammed in there they are cricked. there is just no room. so we got some work to do there too.
Only 1 more month till school starts so getting all ready for that Anthony will be attending preschool this year at the public school, where does the time go...

Wednesday, July 11, 2007

July 11, 2007~ update on Hannah

Was back in Omaha yesterday. She had a MRI done ( It's amazing how strong she is, She is the size of a 3 year old. with her head all taped down and caged up, with her headphones on singing her heart out to Hannah Montana, I was in a rocking chair with earplugs and crying my eyes out, lol) Then we had an appt. with her neurosurgeon. She has a benign astrocytoma tumor. For treatment they will observe it closely and remove it when it when it gets bigger. He doesn't want to remove it now because of her other unrelated health problems, she is tiny and not strong enough physically. But praise God it is benign. she doesn't need radiation! We go back to Omaha next week to see the G.I. doctors.

Monday, June 18, 2007

a day at Brickyard Park

Mom's Day

Awana awards night

please keep Hannah in your prayers. We still have no answers from the doctors. We have been able to maintain her 28 pounds and keep her out of the hospital. But she has started to lose her hair again. Her next trip to Omaha is in July, at which time she will have some more scans done on her tumor. The neurosurgeon's don't think it has anything to do with her Failure to thrive, but at this point Her other doctors say it is all that is left, The millions of blood, genetic,biopsy, and other tests they have done have given us nothing. and yes they even checked for parasites/worms...
Her birthday is Thursday, she will be 6 years old. She is the strongest and smartest little lady I have ever met. It has been a rough 5 years for her, and you can see that in her eyes now. This picture is a "self portrait". lol. She brought me my camera the other day and said so confidently, " Mama, someone stole your camera, and I found it . After about 50 pictures of pictures and toys I found this one. I showed it to her and asked her if she could remember who took my camera now. She giggled and said. " oh yeah, Mama. I took it so I could have pictures of my things next time we went to the hospital. such a lil stinker.

Thursday, January 18, 2007

Hello world!.... Our prayers were answered and Hannah was released to be home for Christmas. Thank God for so many wonderful people who have come into our lives. I have been very humbled by humanity at a time when I really had given up on it.
Hannah has not made any changes. We now have a home health nurse coming to our home. I learned how to insert an NG tube. (I think dental was the wrong field!) She gets tube feed during the night. We are trying everything to get her to gain. and then an intestinal virus went through our house at Christmas.(She went from 31 to 28 lbs) They sent what seemed like at least a gallon of blood to mayo. I just wish we could find an answer. I want to treat the problem instead of just the symptoms.
We set up an IEP at school with her just today. The public school system here is just astonishing. I am absolute love with all of these people. Hannah has missed alot of school but she is terribly smart and has managed to keep up. Her pediatrician last year said I should hold her back a year because she was so small. I defiantly did not choose to do that, why should she, she was ready for school.
We made it through the ice storm w/out losing our electricity (JUST BARELY) I am still unpacking and organizing. So my time has ...well what time? I have to get up 2 -3 times a night to run the pump, so when I do get a moment I usually pass out. I dont know what I would do w/out my cell. the multiple alarms, the calender. I cant think anymore lol.