Another Angel

Another MPS Angel found her wings....

http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=cadencerigden


Please say a prayer for her family

Day +138 Ortho Visit

There are Missy Misses X-Rays from today. Her spine looks great!!!! We are so happy about that. They confirmed her Hip Dsyplasia. They are really only going to keep an eye on her until she seems to be having issues with it. It is not slowing her down currently. She will go back for a evaluation in August and then monthly visits after that. The eval will be with the surgeon, OT, and PT.

I will let you know on Friday how the hearing test goes.

Day +137 Clinic Day

WBC - 3.6
Hemo - 9.7
Platelets - 251
ANC - 1767
Weight 24 lbs 6 ozs
Length 32 inches

Hi All,

Well I was not happy to see her numbers down but they said they will flucuate as any normal persons does but I want them to go up up up within reason. She is 100% engrafted with her donor's cell still ... yippee!!!! She is doing well overall and keeping us busy chasing her. She has an orthopedic appt tomorrow and hearing test on Friday so I will update with those through the week.

Our weekend was beautiful and it was nice to be able to get outside with the boys. They have new bikes and Miss Dani received a little Barbie power wheel ATV. She is not sure of that yet. I will take pictures and post them ... I promise.

The Circle of Life

Introducing my newest great nephew Grayson Alexander Dunn. 7lbs 1 oz

Another Angel

Nick passed away this morning ... say a prayer for the family.

http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=nicholaslancaster

Day +130

I was going to say all is quiet but ummmmmm all the children are vocal enough that it would not be true ... hahaha. The boys are on spring break this week. Gabe is spending it with Grandma Bullock and we took him yesterday to a half way point between us and them. Dani was really done with the car by the time we got home. It was a three hour round trip.

Ethan is with his Dad this week but will come to our house today and tomorrow to be watched with Dani. So I got to see him this morning and he is all excited about going fishing with his Dad later in the week.

Dani's steri strips came off yesterday so she got to take her first regular bath today. She was kicking and splashing and having a grand ole time. She is still really clinging with Jason and I .. more so Jason (She's a daddy's girl). She saw her pediatrician on Saturday and Dr. Kruesser said her ears look wonderful. So we will go ahead with her hearing test on the 30th. She will have clinic on the 26th and I rescheduled her Ortho visit for the 27th.

Aunt Janet and Uncle Darren are putting together a Golf Tournament. They have it every year but this year the proceeds will go to Dani!!! I will attach the poster and the deadline for registration is April 15th. We attended the after party last year and it was wonderful. I hope some of you can make it.

Day +119

WBC 4.7
Hemoglobin 9.7
Platelets 303
ANC 2773
Weight 24 lbs 7ozs
Height 32"

Dani did wonderful again with her procedure. You can now tickle her belly with no obsticles. Clinic went well. She is scheduled to see the Orthopedic Surgeon next Thursday (3/15). Her hearing test is scheduled for March 30th. She does not go back to clinic until March 26th.

Dad is home and doing pretty well. Mom is trying to figure out how to be a good nurse. She will have lots of practice. The boys are doing pretty well ... definitely pushing the boundaries to see what they can get away with. I can not wait for warm weather.

Day +118

Just a quick picture to share of Dani wearing her pink MPS Society shirt that Kris gave her at the Bowl. I love this picture. She looks sooo big. Her central line comes out tomorrow .... we are soooo excited. I will update more tomorrow.

Say A Prayer

Nick was one of Dani's roommates when she received her transplant and did not get to take his Make-A-Wish trip. Send thoughts and prayers to his family. He has been given a month.

http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=nicholaslancaster

Day +116

Dani is doing well. She is really walking around now. She is also getting really good at stacking and put shapes in correct holes. She says Mama, Dada, Play, Butt, BaBa and tries Night Night. She is waving Hi and Bye and does both arms over her head for "so big" and one arm over her head for "all gone or done".

I am sick currently as is all of my babysitters so this should be an interesting week. My Dad is in the hospital and has been since last Wednesday with Kidney Failure. He is doing a lot better now and would be discharged but he is still weak and having trouble walking. They will try to rehab him at the hospital and if not he will go to a rehab center for a bit.

Jason took Dani for her appointments today (Clinic and Hearing) He does not have the routine down so he took her to outpatient for the lab work but forgot to go see the doctor afterwards so I do not know her weight and stuff. He said she was not cooperative during the hearing test so they might have to be redone. The results they have are she has mild hearing loss and possibly some fluid in behind her ear. As I find out more I will let you all know.

She is scheduled to get her Central Line out Thursday and I will post more then. I also have some new pictures if my camera cooperates this evening. It did not last night. With everyone sick around her please send positive vibes her way for her to stay healthy!!!! I can not wait till we are done with flu and cold season. I hope you all have a good week.