Danica Boni - An Adventure with Hurler's Syndrome

2010-08-09T05:30:00.002-05:00

Gabe, Ethan, and Dani are enjoying their last week of Freedom before school starts. Missy Miss is still receiving her IVIG infusions. We have appointments for the eye doctor and dentist. Her eye is turning in again. We notice it when she is tired. And her front tooth is turning colors. Nothing seems to bother her so all is good at the moment. We are going to start working on Halloween costumes as soon as we get school settled.

Gabe is starting 8th grade, Ethan 6th, and Dani is in her last year at Pre-School. Next year we will have every school covered.

Spring is here!

2010-05-05T10:34:00.003-05:00

Sorry all for the long time away. The kids are keeping me busy. We now have a teenager in the house. Gabe turned 13 in March. Here we go .....

Ethan is busy with band and student council. They are both ready for school to be out. Which I can not believe is coming so soon.

Dani is doing well. She is still getting monthly infusions (although she got to skip February). Her left eye is starting to wander again so patching needs to ramp up. Wish us luck with that since she still wont wear her glasses. She is still enjoying preschool and daycare. All of her teachers tell me how motherly she is with the younger kids. She learns something new everyday and her vocabulary is amazing. I wish I could take videos still. She LOVES to dance still and Glee is her favorite show right now. Her favorite movies currently are Shrek 3 and Alice In Wonderland. She can work the DSI like you would not believe. She loves to draw, color, and paint. She bosses her brothers around daily.

I have a TON of pictures on my camera but I have lost the cable to download them so until I get that settled the two of her from above are from the cell phones.

Jason has done wonders with the garden. We should have a good supply of veggies this year. I need to get to planting. Hopefully this weekend. I just had my gallbladder out so I am trying to take it easy for a bit.

That is all I can think of right now. Hope you all are doing well.

Halloween 2009

2009-11-05T17:32:00.003-06:00

I hope everyone enjoyed their Halloween. We had a Skull Master, Ninja, and a Chicken in our fold. We also enjoyed the Klenke MPS Bowl. Everyone had a blast and won some nice gifts in the silent auction.

The boys are doing well in school and Dani is already looking forward to her birthday.

She is going for another infusion on the 12th and will be seeing the PT/OT to look at her fingers. We have a tenative date of 12/08 for her ear tubes and vision test. We also have a date of 11/17 to go over her IEP.

School is in session

2009-08-20T08:06:00.003-05:00

School has started and she is loving it. We also get to skip an infusion this month which is awesome. Not much else is going on. We are working on potty training still and it is coming along. She will be going to see an ENT in September because she continues to have ear infections.

I don't believe I put anything on her about her getting three staples in her forehead. She decided to climb her dresser and that was not the best idea. We tried glue first and that was off before we got home from the ER so we had to go back. They put in three staples and by the next morning she had one out. Imagine that. She will have a nice scar but her hair will definitely cover it up.

Above is some more pictures from San Diego and then Dad and Dani chilling playing guitars. Also her first school photo (with the hat).

2009-07-30T18:18:00.002-05:00

We can not say how much fun it was to visit with everyone in San Diego. We stalked Guy's show "Diners, Drive-Ins, and Dives" with PJ and it was a blast. Then we got a tour of the military base and saw subs, carriers, and lots of different aircraft. Can not even tell you how much fun all of us had with the first day. Pie Eye you are awesome! It would take a full page to fill in the rest and maybe I will as the time goes on (don't hold your breath). We visited Sea World, Disneyland (for about ummmmm an hour, the most expensive hour of our existence) and Hollywood. The boys got a tour of an aircraft carrier. They LOVED it. The condo was beautiful and I think we had the most enjoyable time there. We met up with Matthew, Michelle, Brittney, Lynette, Larry, and Romel. Did I mention it was sooo much fun? I just keep thinking back and smiling.

... wish I was there right now. We have done continual IVIG infusions so we just had another one last week Daycare called today and Miss Dani had bleeding out her ear. Yeah ... So I took her to the ped. She is acting fine and no fever so we will see an ENT soon. I already have a call in to get us bumped up to the ENT at Children's Hospital. The ped says she has an ear infection in one ear and fluid in the other. They were suppose to call in an antibiotic for pickup but I had to call the emergency line because ummm someone forgot (six hours later). They will be getting a call in the morning.

Overall I can not complain. Bumps in the road are going to happen. San Diego and all the family ( Romel, Lynette, and Larry your included) help make the world a better place! Dumb Blogger will only let me download sooo many pictures.

Enjoy your summer! I can not believe it is almost August.

Vacation and More

2009-07-30T17:21:00.002-05:00

Dad

2009-07-03T09:36:00.008-05:00

A lot has occurred in the last few weeks. Dani had to have another infusion and on the same day my Dad passed away.

For those that do not know my Dad has been dealing with health issue since my high school graduation (1991) I just dated myself didn't I?

My Dad was an amazing man. He was filled with jokes and laughter. He was easy going, easy to talk to, and would help anyone. He was so knowledgable and was the go to man for help. Any household issue you could ask him and he would give you the solution or point you in the right direction. He helped his family and friends (his kids friends too) any way he could. He LOVED his grandkids.

He had a stroke in 1999 and was not himself after that although still had his moments. I talked to him a few different times about household issues and he would tell me exactly the problem. I am very sadden that Ethan and Dani never knew him as he was. Gabe can remember him somewhat but most of the other Grandkids, I believe, realize and appreciate who he was before his ailments.

He was my best friend and helped Mom and I make it through her menopause (sorry Mom) and my pre teen and teenage years. They coincided ... he had it rough. I can not say enough to show how wonderful he was.

He will be greatly missed and very appreciated. I will update another day on our trip to San Diego which occurred during this time.

Sorry it has been so long

2009-04-19T19:27:00.007-05:00

I have been told by many this past week that I am lacking in my updates. Sorry to you all. I was waiting for new photos and also there is alot going on. I am sure that is true with the majority. Dani is still having to get infusions. She has had one each month so far this year. I need to get her blood work done this month to see if she will need one again but we are assuming she will. Missy Miss has had double ear infections the past week and a little bout of pneumonia. She is doing some breathing treatments.

She still loves daycare and her early childhood classes. Ms Macy and Ms Betsy are her favorite. She loves painting and reading. Oh and bossing her brothers around.

Great Grandma Boni past away this last week and we will miss her. She was a wonderful person and so supportive of Dani and all of us. She was always there for Missy Miss and sent so much love through all the trial. I can see how Dani gets her stubborness. There is way to much irish on both sides.

Dani started Early Childhood Classes

2009-01-14T08:22:00.003-06:00

Sorry it has been so long since I last posted. I am sure everyone understand how hectic the holidays are. So what all has been going on since our last update. Dani did get her infusion last month and it was a nightmare. There were lots of problems with her IV and at one point she was almost hysterical because she did not want them to touch her anymore. She lost her first IV so they had to poke both arms. The nurse actually had to stand over her the last thirty minutes and watch over the pump. It was a VERY long day but she did get the full infusion. Luckily Jason had gone with us so he was a big help. Oh and on that same day we had to put down our pug Belle. We put down our older dog Andi two months prior. Andi was somewhat expected and had lived a full life but Belle was a shock. We did get a new puppy Doc (Lab/Beagle Mix) right after Christmas and he has been fun.

Christmas was good. The kids of course are spoiled and Dani has sooo many Princesses it is amazing. She is so into all the Disney Princesses and Barbie. The boys got their fill of PSP and XBox games. They also just started getting interested in Legos so they got quite a few sets of those also.

Dani started her Early Childhood Development classes this week. She rides the school bus to the school and back to the daycare everyday but Friday. Monday was a bit of a shock for her. I met her at the school and she was definitely stunned by the entire bus and new school event. She was fine by the time I left to go back to work and LOVED the paints (that is the picture above) they had in the classroom. Her teacher Ms. Betsy said she did really well the first day and the daycare said she did fine on Tuesday so hopefully she will adjust well to the new routine.

I will take her for another round of blood test this week sometime. Hopefully she will not need an infusion. I can not think of anything else going on. I hope everyone enjoyed their holiday and are keeping warm.

Good and Bad News

2008-12-12T16:05:00.004-06:00

IgA 12
IgG 319 (Normal 345-1213)
IgM 56

Dani's number were not the best. She will get a transfusion on Thursday. We went into her IEP meeting today. She is going to get 4 days (3 hours each day) of developmental help. I am sooo excited about it. They also will provide transportation from daycare to the school. Betsy (her main teacher) seems really nice and good with kids. The whole staff (Linda, Nancy, Joanne, and Roxanne) was wonderful and seems really interested in keeping Missy Miss up to par. I am VERY excited to get everything started although I will really miss Stacy, Kathy, and Stephanie at First Steps. I fully expect us to keep in touch.

Just to note for those Mom's that are reading this with MPS kids or for future references. If you saw Dani you would not know she has anything at all wrong with her. She definitely has some issues but for a person to look at her you would not know it. We want to stay on top of everything to make sure she is the best she can be. Our goal is to make her life as normal as possible (as is many parents goal) and we will stop at nothing to get there.

For those non MPS families her diagnosis says she will slow down in all regards after the age of three. We are going to fight this as much as we can and hope that she is the best person she can be. And hope that the medical advances that have occurred the last ten to twenty years will help with that.

I just want to say to Erica who is a WONDERFUL role model and an adult Hurler's friend that does so much for everyone and such an inspiration. You ARE wonderful and I can not thank you enough for your support and help with research, support, and leadership.

I broke down briefly (no need for a tissue :) ) today talking about the future and where/what we are aiming for. Jason and I don't know and don't talk about it, although ironically today he mentioned something about that very subject in a conversation (first time ever). It is just always there in the back of your mind. We are very positive with her and generally it is one day at a time but there are certain instances that you have to think about the future and this was one of them.

Happy 3rd Birthday Missy Miss!!!

2008-12-09T12:16:00.005-06:00

9.9 WBC
13.8 HG

240 Platelets

4158 ANC

I thought for old times sake I would put her counts up. We are still waiting to here back on her IGG results so we still do not know if she will need another IVIG infusion or not.

We all survived Chuck E Cheese on Sunday. Dani was not sure whether she liked Chuck E or not. She gave him a high five and followed him during the Birthday parade but that was about it. Otherwise she had a blast as did everyone I believe. She loves the slide they have there and of course the rides. She received quite a few Barbies and princesses.

We did do Dani's assessment through the school district for services and she qualified. She is going to be receiving Speech, Physical, and Developmental Therapy. We are going to set up her IEP on Friday.

We hope you all have a very wonderful holiday season!!!

Cardiology

2008-11-13T18:38:00.003-06:00

Dani's appointment went well. Her ejection fraction is between 60-63 (better then last time) and they only increased one med this time. They tried to do a 3D echo but she was done after the regular so we did not get that done nor the EKG.

Her mitral valves are a bit worse but he does not seem to mind. She is back to needing a antibiotic before a dentist appointment.

Baby steps is what we do as many of you know. She is sooooo enjoyable and has such a good time with her brothers. I am hoping Santa brings me a new digital camera for Christmas (Hint Hint Jason ... :) ) Mine has been gone since June. I want some new videos of their cute interactions.

Happy 2 Year Anniversary

2008-11-09T09:43:00.013-06:00

Today is Dani's 2 year post transplant. We can not believe it is two years past. I wanted to post these pics. They are Dani and her Cousin Kendyl on Halloween. Then a few are at my sister's housewarming and the kids LOVED the horseback riding (Thanks Jerry). The group one is some of the girls at our family reunion.

She has some appointments coming up. This Tuesday she goes to the cardiologist to see how her heart function is. Then the next week she gets tested by the Ferguson/Florissant school district to see if she qualifies for services and gets another round of immunizations. I will update you as I get results.

Happy Halloween

2008-10-29T08:03:00.003-05:00

Everything is fine here. Her infusion last week went very well. They said next month we will just check her blood work and go from there so hopefully we will not need anymore. She also goes to the Cardiologist next month. I can not believe we are coming up on 2 years post transplant. Time has flown. I am not sure what all she will need to get done as far as testing goes. I know they want her to have a hearing test and eye test soon. I might call and get that scheduled at the same time.

Dani is loving daycare now. It seems like all the kids get along pretty well. She really loves Ms. Macy (her teacher). They are having a pajama party for Halloween. I am sure she will have a blast especially since they are ordering Pizza (her favorite).

She did get assessed last week for special services through the school district. They seemed to doubt she would qualify for much of anything. It is a bit frustrating because I want to keep her on track for school and they are only looking at current abilities. Anyway that was just an initial visit. She will be evaluated fully in November.

The Kids Pics

2008-10-06T17:15:00.006-05:00

We got their pictures done on Saturday and they turned out really well. General update on Dani is she is holding her own. You can still tell she is not up to par with feeling good but really only when she is tired and bed time. I don't remember if I posted this last time but her next infusion is Oct 20th. She is also getting evaluated tomorrow for special services through the school district. Hopefully they take into consideration that with Hurler's you do not see a regression until after age three and her services through first steps stop at three. We will see how this goes.

Here they are ...

2nd Infusion

2008-09-22T17:53:00.004-05:00

Hi All

Missy Miss had her second IVIG infusion. Today was a bit more stressful then last time but it could of been worse. All her numbers were good.

The clinic rearranged nurses today so we did not have Kari. I am paticular enough to enjoy having the same nurse each time. We had Cheryl then Kari and now Angie. I might have to say something next time if it is another different nurse. It is one thing if you are an adult and dealing with this but with a toddler/baby (which she is to us) familiarity is the key. I give HUGE thanks to Kari because she came over at least four times so Dani had a friend there. I have no issues with Angie ... she was good but not familiar.

Dani just woke up and is very aggravated. It gets harder the older she is. I am hoping it does not make her resentful toward us for putting her through this. We have not had that issue up to this point.

First Infusion Complete

2008-08-26T11:17:00.003-05:00

I was waiting to get pics to post but I have not made it to Walgreens yet. Dani had her first of at least three infusions two Fridays ago. She did well and it took about 2 1/2 hours. We always know how the day is going to go on how quickly we can get the IV going. Fortunately they got it on the first try this time. She still had an off day last Friday (droppy at daycare) but when she got home she took a bath (she LOVES them) and seemed fine the rest of the night. They will recheck numbers after the third infusion to see if we need to keep going. Her next appointment is Sept 8th. I hope everyone enjoys their long weekend!!!

A small step back

2008-08-13T18:08:00.002-05:00

Hi All,

Above are some pictures that Dani's donor sent from our visit. She is getting sooo big. We have had a little set back. She started daycare part time in March. She has had mutiple ear infections, multiple pink eye, and Hands, Foot, and Mouth Disease. Also if she gets bit by a bug it seems to get infected easily. So after this last bout of double ear infections, both eyes having pink eye, three bacterial infections from bug bites, and a nail on each hand peeling from the bottom up, Jason said call HemOnc and asked them. So we called and her IgG (part of her immune system) was low in November (187 and the norm is 500-1000). I am not sure still at this point why it was not rechecked this spring but we ran blood work yesterday and her IgG is at 54. So we are going to start a monthly infusion for the next six months.

Keep her in your thoughts and hope this is just a minor stumbling block.

A Wonderful Introduction

2008-07-25T13:59:00.000-05:00

It is with great joy and with a revived belief in the greatness of a stranger’s heart, that I get to report that God blessed us with the event we had been longing for. Last evening we were blessed to be able to meet Danica’s bone marrow donor. We were able to share stories about the situation with each other, our collective struggles, and we were able to connect as people and now great friends. I don’t think that Kelli and I can ever fully express our gratitude for the sacrifice made for the benefit of our Dani or that we will ever be able to repay them for it either. But I hope they know how much we love them for this wonderful gift and that we will continue to try as hard as possible to pay it forward for the remainder of our lives with their example as our guide. Thank you J, S, J, and M!!!

Dani's First Beach Vacation!

2008-06-06T13:53:00.009-05:00

Well we took our big vacation for 2008 early this summer. We traveled by RV from St. Louis to Navarre Beach, Florida. It was a 14 hour drive one way and that part was long and tiring. However once we arrived, I think it was a great success for all of us. The kids had a wonderful time swimming, catching crabs and fish, playing at the arcade, etc. The weather was beautiful. Dani had such a great time at the beach and at the pool. The boys and I got a little sunburnt much to Kelli's dismay! No whining she exclaims! hehe. Gotta Love her. All in all, again it being Dani's first real road trip and beach experience I think she had a great deal of fun. The boys I know had fun and were very sad to go home. Probably cause they didnt want to do chores, but more probably cause they had a blast! Its these times that I truly cherish with my family. And think about how truly blessed that Kelli and I are to have such great kids and how blessed we are for as well as Dani is doing. Hope everyone has a great summer!

18 Months Post Transplant

2008-05-08T12:56:00.005-05:00

WBC - 6.9
Hemoglobins - 13/4
ANC - 4278
Weight - 35 lbs
Height - 37 inches

It's that time. We had two doctor visits. One was the cardiologist. We went in thinking we would start weaning her off her meds but she had other thoughts. Her heart function was down slightly. Her ejection fraction was 51 (Was 55 at last visit) and her shortening fraction was 25 (Was 32 at last visit). So that was a little frustrating. We increased one of her meds and she will go back in November for another echo.

Her clinic visit was wonderful. All her numbers are good and Dr. Hayashi was very happy with everything. She will go back in October for another followup.

I will post pictures of her later of her in her big girl bed. I need to download them. She is doing really well adjusting to it. We just set it up a week ago. She is saying soooo many words it is amazing. She picks things up very quickly. She calls a cookie a tookie. She loves Dora, Blue's Clues, Franklin, and Little Bear. She can sing all the songs in the show plus many more. She is counting up to twenty (although 13 through 19 sounds the same "intteen"). She knows the alphabet song and we are working on her colors.

The pictures up above are from Grandma Dunn's house. She is getting into everything!!! And using whatever is available to stand on to reach stuff.

Hope all is well with everyone. OHHHHH and if anyone is interested the Thanks Mom Bone Marrow Drive is going on from May 5th - 19th. It is free to join the registry (normally $60) during this time. You can go to http://www.marrow.org/ to find out more about it and order a kit.

Easter and MPS Bowl

2008-04-13T16:48:00.007-05:00

Missy Miss had an ear infection a couple of weeks back and all is good. She was on antibotics for a week and had to deal with diaper rash but all is fine now.

The pictures above are from Easter and the MPS Bowl that the Klenke's put together. It was wonderful and we had such a good time. Dani was bowling her heart out. Gabe (and Ethan) won a big Ram's football player for the front yard and Missy Miss won a wagon full of fun stuff in the silent auction. I have two other pics I want to post but they are kind of dark so I will see if I can get them lightened up.

I PROMISE we will get family pics done this spring. I keep waiting for the rash around her mouth to go away and then I will schedule it.

Update

2008-03-16T11:19:00.004-05:00

Hi All!!!

Sorry for the lack of updates. All is well with Missy Miss. The first pic is her in her Olivia Newton John phase ... oh and she LOVES taking off her diaper also ... lovely!!! She has a rash around her mouth but it is due to us using steriod cream for her other bumps. We stopped using it and it should go away soon.

She received her first set of shots two weeks ago. For those that do not know, when she received her chemo that erased any inoculations she received previously. So she is starting over on her immunizations. She has a runny nose but I think that is from them and she actually got a few of us sick ... oh well.

We are in contact with her donor and sooo excited about it. Hopefully we will meet up this summer and be able to enjoy meeting the person that gave Dani a chance at a normal life.

We cancelled her eye doctor appointment because we had winter weather that day but I did not think they would get much out of her anyway since she is still not wearing her glasses. We will reschedule for later on in the year.

She is still having a helper come every other week to make sure she is on track and we are starting speech therapy. She will get these services until December and then we will decide if she needs to continue. Personally we are very happy with her progress and her development but the three year mark is kind of a stutter stop with Hurler's patients so we shall see how all goes. We would rather her have extra benefits then let anything slide.

Next appointments are very early in May. She will go to clinic for her 18 months post transplant visit and her cardiologist. I will update after Easter (cause you know you want to see her in her easter dress ....) and after those visits.

Final note ... there is a MPS Bowl going on at the beginning of April. All proceeds will go to the MPS Society. If ANYONE wants to attend please let me know. Jason, Gabe, Ethan, and I went last year and had a WONDERFUL time. Dani will attend this year. April 6th is the date and it is $25 to register. With that you get an MPS T-shirt. Please shoot me an email at rdhdtrue@yahoo.com if you want to come. It will help with research and families in need.

We all are ready for spring and summer!!!!!

A Huge Lost in the MPS (Dani's) World

2008-01-27T11:34:00.000-06:00

When Dani was first diagnosised there were a few families that stuck out as Jason and I researched this "disease". One of those was the Holland's. They have three children and all have MPS I. They are a wonderful family and Friday night Spencer (the oldest) passed away. I personally feel that if it was not for them and one other family we would not have the enzyme infusion today that gives our kids back the enzyme they are missing.

They have done additional studies to try to improve our kids outcomes and they feel that might of been the cause of Spencer's death. I know that without their efforts in the research we would not have progressed as fair as we have in solutions to a cure.

If it was not for the pioneers we would not get anywhere and I want them to know that I appreciate everything they have done to get us this far in the fight to cure MPS.

Their web page is .... http://www.caringbridge.org/visit/hollandkids Please send a thought and prayer to them ....

Happy New Year!!!

2008-01-15T18:12:00.001-06:00

Hi All!!!!

Christmas was wonderful. I hope you all had a wonderful holiday also. We accomplished quite a bit around the house. And I, for one, am very happy the holidays are over.

We did hear from the hospital that the donor is very interested in meeting us but I have not heard anything from the donor yet. We are hoping for a much calmer year this go around and for the kids to enjoy it.

Gabe and Ethan are doing wonderful at school and Dani is above her age level in skills. Her next appointments are not until March but we are going to start looking into Daycare for her. She needs to be around other children and both Grandma's have done far above what is expected from them. I am hoping to hold it off until she has at least her first immunization shots but we will see.

I hope everyone has a wonderful year!!!!

Merry Christmas!!!

2007-12-13T20:58:00.000-06:00

We just got the news that Dani is 100% donor cells. It is wonderful and an awesome Christmas gift!!! She does not have to go back to clinic for six months. She will start her immunizations in April and go to the eye doctor in March but Clinic and Cardiology she will not have to do until May. Yeah!!!!

We started the process today to find out who her donor is. I am hoping we will be able to thank them for all they have done for Missy Miss.

We are ready for Christmas and hoping everyone has a wonderful holiday!!!! Dani LOVED the first snow of the season as you can see from the pics.

Happy Birthday Dani!!!

2007-12-06T17:54:00.000-06:00

Hi All!!!

Well Miss Dani is two today. She is doing really well. So far her test have come back very well. We are still waiting on her Bone Marrow Aspiration test. That will show us if she still is 100% donor in her Marrow. I am posting some pics. This is the first big function at our house and it went really well. I thank all that came and enjoyed Missy Miss.

On another note ... There is a little girl, Jillian, that is needing a Bone Marrow Transplant. Her Grandparents are local to us. She is two and has Leukemia. She is having a Bone Marrow Drive here in St. Charles MO this Sunday December 9th. I will post her link below. I know a lot of you have already gotten on the registry so if you either want to send prayers and thoughts her way or make a monetary donation.

Her website is http://www.jillianupdates.blogspot.com/ ... Her Grandpa is from St. Charles MO.

Day +360

2007-11-05T12:21:00.000-06:00

Hi All!!!

Sorry I did not update last week but it was hectic. All of Dani's counts came back fine on Monday so we are just going to keep an eye on her and see how this virus plays out. We went on a family vacation to Las Vegas. We left on Wednesday (Halloween) and got back very eary in the morning on Sunday. The boys had a lot of fun. We went to Red Rock, Valley of Fire, Hoover Dam, Circus Circus, and the Shark Reef at Mandalay Bay.

I can not believe we are coming up on a year already. It will be a year on Friday. Wow ... We are so thankful for all of your support!!! We could not have made it through these last two years without all of you.

Dani is scheduled for testing for her one year review

Nov 12th - Bone Marrow Aspiriation
Nov 13th - Audiology and Clinic Visit
Nov 27th - Cardiologist

I will let you all know the results when I have them.

Catching Everyone Up

2007-10-28T18:35:00.000-05:00

Hi All,

Well Dani broke out in a rash last weekend. Grandma Boni took her into the clinic on Monday and they did some lab work. They concluded it was viral and said it would be gone in awhile. Dani has been acting fine since the week before when she got sick at Grandma Dunn's.

Her rash was better (I was putting steriod cream on it three times a day) by Wednesday. So all was good. When I got off work on Friday Kari, our nurse at clinic, called my cell phone. She said she had been trying to get a hold of us since Wednesday (good start to a conversation). With all the turmoil and new phone numbers not all the charts got updated. So she said that Dani's test for HHV6 came back positive. That is a form of Herpes. So they want to see her tomorrow. I googled it and did not like what I googled but all the negative was if she got it a couple weeks after transplant.

So I will let you all know what is going on tomorrow. She is still acting fine and as demanding as ever.

As a side note ... On Discovery Health there was a show about Mystery Diagnosises. The first half is about a wonderful little boy, Zach, that has MPS II (Hunter's Syndrome). It goes a bit in depth about MPS in general. Here is the download ... http://showroom.multivisioninc.com/share.do?id=63968&key=xk1RTHvcQiFE9C9ocU37FmfYI1MOz2WT&email=genessap@waggeneredstrom.com

I will be on tomorrow.

Update

2007-10-22T19:33:00.000-05:00

Dani broke out in a rash this weekend. All over her body. We were all very concerned and I did more research this weekend then I have in a few months. She always acted fine but the rash was not pretty. Grandma Boni took her to clinic today to get it checked out and her WBC where back up to 4.2. They think it is still viral. That is wonderful news because we were all worrying it was GVHD.

She is still acting fine and we actually ordered her new glasses today. I will take pictures when we get them in and post them. Thanks everyone for all the thoughts, help, and prayers!!!

Mason and Sara passed away last week ... On top of all that was going on it was overwhelming.

Mason's journal is at http://www.%20meetmason.com/

and Sara's from what I know did not have a website but was a beautiful girl with a wonderful Mom. Our thoughts and prayers are with both of your families!!!

A stumbling block

2007-10-18T18:56:00.000-05:00

The above pics are from this weekend and Dani in her Halloween shirt.

Dani has not been feeling good this week. She was actually sick at Grandma's on Tuesday and very cranky all week. She does not have a fever so that is good. Anyway we were concerned so we took her to do lab work today and everything is normal except her WBC are at 2.0. Very Low. We are not happy.

So we will be keeping an eye on her and taking her back for labs next week. The good news is today she seemed to be feeling better so hopefully we are on the upswing.

Dani and Papa (and Papa's chair)

2007-10-06T21:06:00.001-05:00

Dani is really enjoying her time at Grandma's house. She really enjoys Papa's chair. It is one that has the massager and such in it. So when ever Papa gets up she runs over and climbs up. Then Grandma turns on all the gizmos. Mom said when Dani hears Papa coming back toward the chair she starts yelling but gets down. Yeah ... she is a bit spoiled. Go figure.

She is doing well. She says soo many words I can not even list them all. We are working on potty training still and using utensils. We are going to San Diego on Halloween to visit PJ (you might all remember him). The boys are especially excited to get a tour of the base and a naval carrier. We will also being going to the Zoo while we are there. We can not wait!!!

Day +324

2007-09-29T22:30:00.000-05:00

Hi All!!!

Well Dani went to clinic last Monday and all was well. She will be off Cyclosporine (sp?) (anti-rejection) on Monday. Her next step on meds is getting off of her antibotics six months from now. She will have a cardiology appointment in December and she will have her year post transplant testing in November. This past clinic appointment was awesome and Grandma Boni and Sami handled it wonderfully. Dani does not have to go back until November (year post transplant) and she only has to go to Quest once a month.

Jobs are going well. Jason had a hiccup the last couple days and was in the hospital but all the results came up fine and he is gonna start focusing on his health. We have had too much drama these last few years and with Missy Miss doing so well we are gonna try to get back to normal. I think we have forgotten how it is not to have drama in our lives and to be bored ... I want to be bored.

Hugs to everyone that has helped Dani through her life and we can not ever express how much we appreciate and love all of you!!!! I am not done with her blog in the least but I will not be updating it as frequently as I was. We are going to San Diego at the end of October and I will be posting pictures after we get back.

Day +309

2007-09-14T14:38:00.000-05:00

WBC 6.4

Hemo 13

Platelets 311

ANC 3392

Retic 1.2

Well ... Dani's numbers are wonderful . We are soo happy they are continuing to go up. Missy Miss is learning more signs and words. She know the signs for "More" and "Please. And she is saying a ton of words. We are working on fine motor skills and she is picking up on that also. She has puzzles, shape sorters, and has a Mrs. Potatoe Head. She is also eating a ton of new things. She says Done, Hello, Mom, Morning, Please, Thank You, More, and a few more I am sure I am forgetting.

The boys are doing really well in school also. Gabe is going to start in band and Ethan is playng soccer.

Jason started a new job this past Monday and I will be starting a new job this next Monday. As it always is stated things happen for a reason and we will be in a MUCH better place and position with these new jobs then we were before. There is a reason for everything.

Thanks everyone for the support and concern and we keep trudging along...

Day +293

2007-08-29T10:13:00.000-05:00

Labs from Monday:

WBC 4.8
Hemoglobins 13.3
Platelets 240
ANC 1776
Height 33 inches
Weight 30 lbs 3 ounces

I will try to take some new pictures today. Her ANC is back up so that is good. They think maybe the eye surgery stressed her body out and that was why it was low. We had a long visit Monday but they said she is doing great. The next month or so will be the test. The Rituximed (sp?) will start to wear off and she is weaning off the Cyclosporine and will be done with that Oct 1st. So if things are going to change it will show this fall. Fingers Crossed.

We had our follow up visit for the eye doctor today. He said everything looks fine from the recovery standpoint but her left eye is still a little crossed. She will go back at the beginning of December for a second follow up. At that point we will talk about possibly having to redo the surgery on her left eye. The doctor did say if we wanted to we could try the patch and glasses again and see if she is a little more cooperative. So we will give that a try.

The therapist from First Steps is coming today and I am hoping Missy Miss will be cooperative with her. She is still learning new things everyday and saying more words. Daddy bought her a working (but play) microphone and she sings the beginning of Fergie's song "Big Girl's Don't Cry" (La la la la) and "Brella" from Rhianna's song Umbrella. Daddy also made up new words to Amy Whinehouse's song "Rehab" and he sings "They try to make me go to preschool and I said No No No" and she will sing the No No No part. It is cute.

Anyway ... I had to edit the blog the last entry because we were told if I did not then we would not get our final paychecks. They said I had inaccurate information on there. This was all by email. So Jason asked for the accurate information so we could be "Truthful" but did not get a reply back. Go Figure.

We are both sending out resumes and Jason has been on a couple interviews so hopefully things will get back to normal soon on that front. If anyone missed it Jason and I were both fired from our job on August 10th. The day after Dani's surgery. I did not go into work because Dani has been sick the night before and they told Jason when he walked in. I still have never be told why I was fired. My termination letter says per our conversation with your husband. Five years and that is what I get. Nice!!! Talk about lack of loyalty. Which was the reason they fired Jason. He put his resume on Monster. ANYWAY ... we are trudging along. Everything happens for a reason and I am sure things will end up better in the long run.

I hope everyone has a wonderful Labor Day Weekend!!!

Day +281

2007-08-17T15:59:00.000-05:00

Counts from last Thursday 8/9/07

WBC 3.7
Hemoglobins 11.5
Platelets 236
ANC 1073
Retic 1.15

Today's Count
WBC 3.5
Hemoglobins 12.9
Platelets 300
ANC 805
Retic 0.9

We are a bit concerned with her ANC being below 1000 and continuing to go down. We will keep an eye on it and see. She has been acting fine. She has somehow learned the sign for "more" and it is soo cute. She also nows sings "Brella, Brella, Brella" which is from that Rihanna song "Umbrella".

Her eyes are doing fine and the blood is about gone around them. I will update with a picture soon.

All Things Happen For A Reason

2007-08-11T23:17:00.000-05:00

Most importantly Dani is doing wonderfully. I have some pics I am posting from the boys getting home yesterday. I still do not have her numbers from Thursday but I will call Monday to get them. She was sick Thursday night all over me and our bed so we took a late bath and Jason cleaned up the mess. Fun Fun. Her eyes are bloodshot in the corners and to the pupils, but she is acting ok. Maybe a bit more whiney then normal.

The boys are starting school tomorrow. I am not sure what the heat will play into that but they are ready to get back and see their friends.

EDITED

Day +273

2007-08-09T14:09:00.001-05:00

I will add her labs when I get them.

Dani is ok and sleeping right now. This was probably the hardest recovery room visit we had. She was sooo woozy that she clung to the nurse for a minute or five, and did not recognize us. The insides of her eyes (toward her nose) is red and swollen and that could last a few weeks. She will be hazy in her eyes from the drops and such until tomorrow morning. She was still, right before nap, still acting like she had a good night at the bar (stumbling and such). Yet, as Missy Miss always does, she was smiling and wanting to dance after we got home.

The best news out of this surgery is her eye sight has not gotten worse over the year. Dr. Tysen said we would wait a few months and see about the lens implant surgery. Right now developmentally she is doing fine and if she starts struggling we will pursue the other surgery. His concer is that she has corneal clouding and that will not stop after the lens implant. So it is a wait and see type of thing

Day +260

2007-07-27T15:24:00.000-05:00

WBC 3.8
Hemoglobins 13.2
Platelets 284
ANC 1900
Retic .93
Weight 29 lbs 5 ozs
Height 33 inches

Sorry for no update last week but my computer crashed and I lost all the data. All is well though. Dani has a slight rash under her neck but we all think it is just heat rash. She did go to clinic today and received IVIG but they ran a blood test to check if she still needed it and she does not ... she is normal in that regard. She is off of steriods and we are going to start weaning her Cyclosporine (sp?) again. She will be completely off of it by October 1st if all goes well.

I am going to try to go back to work full time. We really need to increase income so we are going to try a home daycare situation. Her cousin Kendall (Erin is gonna shoot me because I am pretty sure I spelt her name wrong) will be there and they are only 1 month apart so Dani will get to spend time with other kids. Wish us luck!!!!

Dani is talking more and more everyday. She mimics a lot of words but clearly says Mom, Bye, Hi, Dad, and Einstein (Baby Einstein). She will be having eye surgery August 9th. It is an outpatient procedure and hopefully will help with keeping her glasses on.

Day +246 Good News Bad News

2007-07-13T14:22:00.000-05:00

WBC 3.6

Hemoglobin 13.9

Platelets 271

ANC 2304

Dani's numbers are a bit improved and we will take it. We went to the cardiologist today to check how her heart was doing after weaning off two of her four meds.

The good news is her heart is functioning normally. Her Ejection Fraction was 60. 55 is the low end of normal and it was 47 in June. When she was a newbie it was 36. Her shortening fraction was 32 . Less then 25 is very bad. When she was a newbie it was 18 and the last visit it was 28 (in June).

The bad news is her heart valves are thickening and leaking. This will be a wait and see scenario and right not he is not overly concerned about it. I will be doing research from post transplant Hurler kids and see if I can find anything. Jason and I thought as did Dani's cardiologist that we would not have this issue post transplant. Maybe it was missed because it was so slight and her heart was so small when she was born but we do not know.

The pics our in our backyard with the kids enjoying the pool. We have had it for a few months but I just got up the energy to blow it up. Hehehe. All of the kids had a blast. Dad was a bit of a worrywart about Dani being in it by herself with the brothers so I unfortunately had to get in too. We had fun.

Day +242

2007-07-09T10:47:00.000-05:00

WBC 3.2
Hemoglobins 13.7
Platelets 281
ANC 1472
Retic .8
Weight 29 lbs 4 ozs
Height 33 inches

I wish Dani's WBC count was higher but she has been acting fine. We are slowing weaning off meds. She officially down to two heart meds and we will go on Friday for an Echo to see how her heart is dealing with it. She has learn the fine art of taking her diaper off. So she has mooned us a few times in the morning when we go to get her out of bed. She is doing really well with the sippy cup and regular food.

We went to our local civic center for fireworks on the 4th and Dani did not enjoy them. She did not cry but clamped on to Jason and I and did not want to look at them. You could definitely tell she was scared so Jason walked her home while I stayed with Gabe and some friends of ours. They were really pretty and only about 4 blocks away from the house.

Ethan came back home on Friday and it was a hot weekend. We vegged on Saturday and went to a pool party for my Great Nephew Mason on Sunday. The boys had a blast with swimming and playing games. They are now staying at Grandma's for a couple days.

Day +234

2007-06-29T21:33:00.000-05:00

WBC 6.1
Platelets 266
Hemoglobins 13.7
ANC 5490
Retic 1.08
Weight 29.4
Height 33"

Dani's numbers where wonderful today. She did get her IVIG, which will boost her immune systems. She does not have to go back for four weeks. She is definitely coming to her "terrible two" stage, but we are fine with that. She really amazes us with her natural dancing skills.

Send A Prayer

2007-06-27T09:51:00.000-05:00

Kallie is a little girl with Hurler's that had her transplant 2 1/2 months before Dani. She is not doing well and in PICU.

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

Danica's Charity Golf Tourney 2007

2007-06-25T21:08:00.000-05:00

Here is a little view of the fun we had!

Day +228 (I think)

2007-06-24T22:53:00.000-05:00

I just wanted to post some pictures from the golf tournament. We can not thank everyone enough for coming out and showing support and of course having fun. We had a few bouts of rain and some of us received more moisture than others (Love you Michelle!!!). I do think we all had a fun time and I heard no complaints. Janet and Darren put together an awesome event and there were so many others that helped make it a success.

Dani is an amazing little girl and she blows us away daily on how much she accomplishes and her wonderful personality. She still amazes me with not crying at all when they draw blood or even being afraid when we go into the labs. We go in on Friday for her next dose of IVIG.

Day +226 A Day at the Zoo

2007-06-22T15:43:00.001-05:00

WBC 5.0

Hemo 13.8

Platelets 310

ANC 3200

Retic - Do not have yet

We went to the Zoo yesterday. It was really hot but overall it was a fun time. We met our friends Jenny, Chase, Olivia, and Jack. We went through the Children's Zoo, rode on the train, and saw many different animals. The first three photos are from there. The second one, Dani has a cookie in her mouth.

The last photo is Dani sitting in her basket in the dining room. She thinks that is her chair. All is fine here and Grandma Dunn is doing well with her surgery. My Aunt Dorothy passed away this week and I send out prayers for her family.

The golf tournment is tomorrow and should be pretty hot but a lot of fun. I will try to take lots of pictures to show all. A good friend passed away two weeks ago and I miss her advice and guidance. Please visit www.savesweetpea.com and take in what a wonderful Mom she was and how much she will be missed. Amy was amazing and so proactive on finding out how to take care of her little ones. Hugs to her husband and babies and I know they will use Amy's strength to get through.

Day +220

2007-06-16T12:56:00.000-05:00

WBC - 7.1

Hemo - 13.9

Platelets 380

ANC - 6461

Retic - 1.2

It might come off as a shock to some, but today me, Daddy is writing in my baby's blog. Its Fathers Day and I wanted to post today. I so much appreciate my children. Gabe and Ethan are the best stepsons a Dad could have. I enjoy and believe that I am very lucky to have them in my life and I wanted to say that out loud today. And as far as Dani goes, I am the luckiest Dad in the whole world to have such a wonderful and special young lady as my daughter. For all that she has endured up to this point and the way she is still amazes me daily. I pray that she continues to move in the right direction past all of the doctors and needles and medicines and that she begins to live life free of all of this at some point. I have big dreams for her. I dream about her first days of school, and playing with all of the other kids. Going to her plays or games. Dances, dresses, driving lessons, college, marriage, and grandkids. In a Perfect World!
But as long as we continue to take this day by day, minute by minute I am happy. Because I dont want to miss a thing. Not a single thing. I love you Dani, more than life itself baby. You are my sunshine and my star. Kissess and Hugs.

I wanted to also let the world know how much I love my wife today as well. See I got so lucky that Fathers Day this year happens to be Kelli and my 2nd Wedding Anniversary. We had a great dinner last night and I really enjoyed spending time out with her just the two of us. Kelli is a very special woman and I am a very lucky husband. She is exactly what Dani and the boys need and she does so much to impact all of our lives daily. She may never really know how much we really count on her, she deserves so much more gratitude and appreciation and I hope that all of us can live up to the task of repaying her for all that she does.

Well you may have noticed all of Dani's counts look better, and lets keep them getting better! She was taken off her Dijoxin for her heart this week and starting tomorrow she will be weened off of her Lasix for her heart too. And the steriods are continuing to being weened too so very happy for that too. She has lost her Predisone belly and chubby cheeks now and she is looking more like herself. She gets around much better too without all of the extra stuff. She is being very vocal these days and its only a matter of time before she is talking IN ENGLISH..haha. I am scared.

Well I will let Mom post more if she likes and I am going to finish watching the Nascar race now. Happy Fathers Day Daddy Boni and Daddy Dunn!

Day +212

2007-06-09T13:38:00.000-05:00

WBC 4.4
Hemo 13.4
Platelets 393
ANC 2464
Retic - Did not get yet

Dani is doing well. She is still trying to cut molars and has a runny nose but otherwise all is fine. She is showing her stubborness and temper which is good (in most cases ;) ) She went to her cardiologist visit yesterday morning. Her heart is pretty much the same. We are probably going to put off her heart surgery until next summer because of new findings with the American Heart Association. We are leary of her being put under 3 times in such a short time and we can not do the eye and heart surgery at the same time now. We are going to start weaning her off of some of her heart meds next weekend and see how that goes. She will go back in about a month for another echo. She will also continue to wean off of her steriods.

We are very excited to have Ethan back home after being at his Dad's for two weeks. Dani has been chuckling a ton today with him.

In our small world Innis, our guniea pig, passed away yesterday. I think I was more effected then the others. He was my first pet that I personally have lost. I feel guilty because I have been waiting for his demise just for the fact that there is so much to take care of around here. We have the 3 kids, 2 dogs, 2 cats, and at the time Innis. Plus of course the house and job (what limited time I get to go there). He was having issues last weekend and I thought he was getting better but yesterday he could not even move. I gave him a bath and cuddled him in a towel for a bit. Gabe and I had to watch him slowly pass on and it was hard. Gabe, being 10, seemed less effected than I, he was asking about getting a mouse already. There will be none of that.

Day +204

2007-06-01T17:15:00.000-05:00

Thursday's MRI went well. It was not the funniest time either I or Dani have had but it could of been worse. Dani was a trooper and never griped about not eating. The worst part for me was walking into the MRI room and her being happy as a lark about sitting on the table in the bright light and then watching her eyes roll back in her head after they gave her the drugs. I really would prefer not going through that again but if it helps her to be comfortable than I will of course.

WBC 5.8
Hemoglobin 14.5
Platlets 373
ANC 4466
Weight 29 lbs 1 oz
Height 33 inches
Retic 1.44

Her numbers were awesome this morning. She got her IVIG so that hopefully will help her WBC go up. She does not have to go back to clinic for 4 weeks. We are very excited. We just have to go to the local Quest labs to give blood on Fridays. She did well today for not having a nap and all.

We saw the eye doctor and they are scheduling the muscle correction surgery now. We are hoping to get this surgery and fixing the hole in her heart at the same time. We shall see. We go back to the cardiologist next Friday. They will measure her eyes while she is under and figure out exactly what she needs for the Lens Inplant surgery.

The videos below are her tap dancing and her telling you what a Cow says. She just learned that yesterday while waiting at the hospital.

http://s5.photobucket.com/albums/y199/rdhdtrue/?action=view&current=tapdancing.flv
http://s5.photobucket.com/albums/y199/rdhdtrue/?action=view&current=mooooo.flv

Day +202 Our Agenda

2007-05-30T11:17:00.000-05:00

I hope everyone enjoyed their Memorial Day weekend (here in the US :) ). We did for the most part. Dani and I laid low and spent the weekend at home. She finally cut two molars and is working on a third. She had a fever overnight Sunday night into Monday. I was hoping it was just the teething and I think it was. You could tell she did not feel good though. Poor baby. She has created some new words, but we are not sure what they mean. But at least she is trying. I made her watch racing all day Sunday (instead of dancing to music). I am hoping to convert her early. hehehe

Jason and the boys went camping overnight Sunday into Monday. They fished and caught tabpoles and such. They love going and sitting around the campfire. Ethan was attacked by every bug known to man so he enjoyed himself immensely. We BBQed on Monday and just took it easy. It was fun. Jason and I have really been working on the house inside and out. I will post pictures of all the flowers we have planted and the bar downstairs that he has remodeled soon.

I did not mention it before but we went to "The Angelman Syndrome" walk-a-thon a couple of weeks ago. Website http://www.angelman.org/angel/ . Our really good friends Rick and Suzanne's oldest baby boy has this. It was an awesome event. It was held at Jefferson Barracks State Park and we all enjoyed ourselves. Us five went and then a friend from work, Jenny and her son Jack met us there. The boys and Jack had a blast following the trial and enjoying each other. We met up with a few friends we had not seen in awhile (Trevor and his new wife Kim) and then Ricky's parents. We will definitely be going from now on.

Well today we were going to go to the Zoo but it was rained out. Tomorrow Dani is scheduled for an MRI (under anesthesia) and then Friday we have the IVIG (Immune Boost) infusions and the eye doctor appointment. I will let you know how it goes.

Vibeke is getting ready to start infusions and it is very exciting that she finally got approval. Thanks for all the love and thoughts.

Erin ..... I will try the teddy grahams next but I am really working on veggies right now. I did buy baby goldfish but have not opened them yet. She is still more picky then I am used to. The boys use to just shovel everything in. She is more stubborn than Gabe which amazes me.

She is definitely a smart one and knows what we are talking about and the schedule for the day. She tells me what is next in the morning when getting ready. She will tell me when it is time to brush her teeth and when it is time to clean her ears. She now will not keep socks on her feet.

Please do not forget the Golf Tournament on Saturday June 23rd. It should be a lot of fun and there is always prizes to win.

Day +197

2007-05-25T14:25:00.000-05:00

WBC 5.1
Hemoglobins 14
Platelets 382
ANC 3315
Retic 5.3

Well this morning Dani decided to worry us because she had a rash under her chin. This afternoon it is better so we will keep an eye on it. Her numbers are good. We are waiting for her Retic number to see about weaning her steriods so more.

She is now on a sippy cup and is tap dancing. She loves her dancing. I will try to take a video of it. She is still not the happiest about table food. She is starting to eat Honey Nut cheerios.

The boys are out of school and are very happy about it. Grandma Dunn is getting her other hand done on the 6th of June so more happy thoughts her way. PJ (my nephew that was in the accident at the end of last year) is back on a Naval Carrier and outside of Iran. Send positive thoughts his way also to come home safely. He is on the USS Nimitz (sp?).

I hope everyone enjoys their long holiday weekend (US bound anyway) and all have a nice weekend!!!!! Send a special prayer that Vibeke in Norway will be started on Enzyme Replacement Therapy soon. She has been fighting so hard to get it and she is getting some positive comments back now.

http://www.caringbridge.org/europe/vibeke/

Updating:

Yvonne, Dani's nurse practioner, called back and she is going to get IVIG (Immune System Booster) next Friday. It is a four hour infusion so I hope we make our 1:00 appointment with the eye doctor to talk about the lens implant. They lowered her steriods from 3.0 daily to 2.8 ml daily. The rash we will keep an eye on and see if it gets any worse.

Day +190

2007-05-18T12:57:00.000-05:00

WBC 6.8
Hemoglobins 12.8
Platelets 289
ANC 5644
Weight 28 lbs 14 ozs
Retic - 5.4

It was a good visit. All the numbers are going in the right direction. We are back to going to clinc every two weeks ... very exciting!!! They lowered her steriod dose. We will go to a local Quest Lab next week just to get numbers. They were talking earlier about starting IVIG (which boost the immune system) but that is not definite and I think the numbers might be good enough this week not to have too.

I hope everyone had a wonderful mother's day. We laid low and relaxed the entire day. We are getting a lot done around the house which is nice and so ready for the boys to be out of school. The next clinic visit is the same day as the prep session for Dani's eye surgery. It will be an interesting day.

Dani was tap dancing in clinic today and it was too cute. She is figuring out a lot around the house. Which means we have stepped up on child safety gadgets. She wants to go outside all the time now and we are still scared. But she has been out and not sure about her bare feet in the grass. Jason bought her a blow up pool so I will take pictures when she (and her brothers) get in.

Mom did well with her surgery and her next one is scheduled for June 6th. Keep the good thoughts rolling!!!

Do not forget about the golf tournament June 23rd. Jason is playing and I will be a beer girl. It should be a lot of fun. Shoot me an email for details rdhdtrue@yahoo.com

Day +183 Last Infusion ... We hope

2007-05-11T15:01:00.000-05:00

WBC 13.8
Hemoglobins 11.5
Platelets 352
ANC 12,834
Weight 28 lbs 4 ozs
Retic 9.32

Dani started the day of in a mood. She was not happy with anything on the drive into the hospital. I warned them when we got there and they pushed things along. It could of be worst or better but we were very happy it is hopefully the last infusion forever. Her counts are pretty good. Her ANC is high because her immune systems has been suppressed from these infusions and the calculation they use to get this number is errored (sp?).

She has a clear runny nose that we are hoping does not get any worse. She is kind of back to ground zero with her immune system so we have to continue to be careful with cleanliness and such. We have not really relaxed in that department so no big deal.

She loves her music and her gerber graduate crackers. I have a video I will download her in a bit of her dancing. She will grab the remote for the TV or just stand in front of any TV and start bobbing up and down to dance. She loves watching videos.

http://s5.photobucket.com/albums/y199/rdhdtrue/?action=view&current=DaniDancing.flv

May 15th

2007-05-10T19:38:00.000-05:00

This is MPS Awareness Day around the world. NASDAQ will ring the opening bell in acknowledgment of it. I have been trying to get work to do a casual day for it but I think they are tired of us. Here is an independpent movie about MPS II.

http://www.jonathanformica.com/portfolio/courage.php

This is an article on a wonderful group of girls and their Mom and Dad's daily struggle.

http://www.mycommunity.com/town/Teaneck/Details_story/Three_beautiful_girls%2C_one_deadly_disease/view.php?action=Detail&type=story&sub_id=18705&area=&category=1

Please consider being a bone marrow donor. It is free to apply online until May 21st. Go to http://www.marrow.org to find out more information.

Day +180 - 6 Months Post Transplant

2007-05-08T09:16:00.000-05:00

WBC 8.6
Hgb 10.7
Platelets 403
ANC 7396
Retic 14.44 (Normal .50 - 1.50)
Weight 28lbs 14 ozs (But it was a new nurse and she let her keep her clothes and diaper on)

Sunday was the big day!!!! Dani is 6 months post transplant. We did go to clinic yesterday (Monday) to make up for missing Friday. As you can see the numbers slipped a little but are still ok. The Retic is showing, because it is high, that she is still chewing up Red Blood Cells. So we want to see that come down. She will get her last infusion this Friday and hopefully her body will balance out. She is now being weaned off of the steriods. She went from 7ml to 4ml in the last week. Hopefully she will lose some weight so she can wear some of her new outfits she just got. She is a buddha baby right now.

I received an email from another Mom of a Hurler's patient (which I need to call ;) ) and her daughter is 10 years post transplant. She has Cardiomyothopy and had this particular Anemia ... amazing how similar they are. She said that she is free of the Anemia now but it took years to wean her off meds. So that kind of puts this in perspective. She also said she is a normal and social 10 year old with no orthopedic issues. I can not wait to talk to her more.

Last but not least to mention is the "Thanks Mom" Marrow Donor Drive through the National Marrow Donor Program is going on now till May 21st. That means that it is free to become a donor right now (even online!!!! ). If you have not done this yet please consider it and I will post the link below. Save a life!!!!

http://www.marrow.org/NEWS/Events/Thanks_Mom/index.html

Day +176

2007-05-04T11:31:00.000-05:00

WBC 9.6

Platelets 509

Hemoglobins 12.2

ANC 6144

We did not go to clinic today. I have been sick all week and did not want to spread my germs nor sit with Dani in a small room to chance getting her sick. Dr. Hayashi is not there this week so they talked to Dr. Shenoy and she said we could wait till next Friday for her next infusion. I asked Dani's nurse Carrie to follow up with Dr. Hayashi on Monday to make sure that was ok. We went to Quest this morning for a blood draw to make sure her hemoglobins were ok and as you can tell all her numbers are really good!!!!

She has been doing well. The pictures above were taken by Grandma Dunn when she was watching Dani on Thursday. It was labeled Dani's new trick. This was the first time she climbed up. Her hips do not seem to be holding her back at all. Grandma Dunn gets her surgery next Wednesday so everyone keep her in your thoughts that all goes well!!!

Day +173 - 2nd Opinion

2007-05-01T17:07:00.000-05:00

2nd Opinion on her vision

I LOVED this doctor. He knew we were coming for a second opinion. He took a lot of time explaining things and gave us as much information as he had.

To catch everyone up. Dani is VERY near-sighted. She also hates her glasses and patching. I mean she will keep her glasses on for an hour or so because she knows she will be in trouble if she does not but she still hates them. We thought that if the glasses where really helping her she would get use to them. That has not been the issue. She was diagnosised in July of last year -14 in one eye and -17 in the other. That doctor (Dr. Tychsen) was very abrupt and did not seem like a people person (I know when you get to a specialist that might be the case). He wants to do a lens implant at the same time as the muscle correction for her crossed eye. When I googled that or talked to our insurance I could not find out much information. So I wanted a second opinion to make sure the direction he wanted to go was the right one.

Dr. Goodrich actually said he has referred some patients to Dr. Tychsen. Dr. Tychsen and another doctor (hospital) in Texas are the only ones doing lens implants. So he did not have a lot of information on the lens implant on children himself. He did try to figure out her refraction while we were in the clinic and he came close enough to Dr. Tychsen's that he had no issues with it. He said a few items he would not be able to determine unless he put Dani under like Dr. Tychsen did.

He also told us that this is a step above an experimental procedure. He said maybe 10-100 children nationwide have had this done. He said if we asked the clinic we can get the info of success rate and complications. He was not sure insurance would cover it. But he said it was appropriate for Dr. Tychsen to want to do this.

He mentioned another procedure which would be put a corrective lens on top of her pupil and get her to an almost zero for now. The downfall on that is cataracts getting worse (she already has corneal clouding) and glaucoma. But that would be later on down the line. Also her vision could continue to get worse so she would still need glasses later on down the road.

It just seems like Jason and I have to keep making these HUGE decisions and it will impact her life to a huge degree. I am selfish enough to want things to get easier at some point. It just does not seem to be in the cards right now. We will talk to the main nurse the first friday in June and make a decision then.

Day +172

2007-04-30T10:23:00.000-05:00

Hi All,

I had a few people have been questioning the patch on Dani's eye. Sorry I should of commented on it when I put them up. Dani has Strabismus (one eye crossed) and they have been wanting me to patch her good eye to see if the muscles would strengthen on their own. I did not do it too much during transplant because she was going through enough and she hated it being on. We started again the last couple of weeks and she seems to tolerate it better.

She goes to the eye doctor for her second opinion tomorrow on the lens implant surgery. I am hoping she will cooperate with the exam so they can get an accurate reading. Wish us luck!!!

Day +169 Sixth time is the charm

2007-04-27T18:52:00.000-05:00

WBC 16.3

Hgb 10.6

Platelets 306

ANC 15,332

Weight and Height were not taken this time. Ummmm we were there at 8:45 and did not get started with the infusion until 1:30. The nurses in the clinic tried both arms and blew them. Then an hour or so later a outpatient lab tech came in and tried her feet (never again). She screamed blood murder and the lab tech stuck her three times on her feet. She was sooo upset she had the blown veins swollen and they looked scary. So then 2 hours later the paramedic crew came in and choose her hand to try. They took a few moving the needle around and Dani did not like that but got a return so we where all relieved.

They started the hydrocortison and then the flush. When they slow the flush it started beeping. We looked at her hand and it was soaked with fluid (blood and clear). So they opened up the bandages and looked. They flushed it and all and it seemed to be fine. They then regave her the hydrocortisone and it seem to work fine. So we completed the infusion and it was 3:15 when we got out of there. That is amazing because this is a two hour infusion.
Anyway we are a little concerned over her high WBC and hope that settles again. Overall Dani was in pretty good spirits and doing fine right now.

Day +167

2007-04-25T15:10:00.000-05:00

WBC 7.8
Hemoglobins 10.9
Platlets 286
ANC 5694

The numbers are good!!!! Nothing really more to report. We will be going to clinic on Friday for her 2nd infusion.

Day +166 Rituximab Infusion

2007-04-24T08:18:00.000-05:00

WBC 7.4
Hemoglobins 11
Weight 26 lbs 6 ozs
Height 32 3/4 inches

I forgot her paperwork at home so I do not have all her numbers. But they all looked good. We started Rituximab yesterday. We got there at 8:30 and the infusion did not start until 11:00. She had tylenol, benadryl (both oral), and then hydracortison through her IV prior to the infusion. They hooked her up to a heart monitor (3 leads), a post ox on her toe, and then her IV in her arm. So there was no putting her down to walk. They also did not have a room so we where back in the infusion center. By 11:00 Dani is very done with the whole situation especially after she realizes she can not get done and be free. So she screamed for a half hour or so until she passed out from exhaustion. Not a fun moment in time. She slept for an hour and a half which was almost the whole infusion time which was nice. I laid on a recliner and she laid on top of me.

They originally said it would take 5 hours but only took half that amount which was nice. Next time it actually should be quicker than that. She had no reaction and was very stable through it all. I will take her into Quest by the house Wednesday morning for a finger prick to make sure her hemoglobins are staying up. Hopefully we will not have to go back until next week.

I feel like I am forgetting to include something so I might be back later.... I hope you all have a nice week.

Update*

I did find out they are only planning on giving Dani 4 infusions. I also asked them to change clinic days from Monday's to Friday's. Primarily because my mom (who watches Dani three days a week) is getting Carpal Tunnel Surgery on May 4th. Grandma Boni is available to watch her on Monday's and my niece Trish watches her on Tuesday and will help me with a couple of Wednesdays so I am trying to be able to get in as many hours as I can. I think my sister Vicki is going to work with Mom to help her take care of Dani too somewhat. Are you keeping up? Dani can not go to daycare until she is 2 years post transplant so that is not an option. Fun as always!!!

Day +161 Transfusion

2007-04-19T18:53:00.000-05:00

WBC 12.4

Hemoglobin 7.6

Platelets 343

ANC 8928

Weight 26 lbs 9 ozs

Did not get a Bilirubin count

It was a long day but things went fine on Dani's end. Just in case there are newbies, if you are at the hospital and the say 15 minutes it really means an hour to an hour and a half. She was lower on her red blood cell count so received a transfusion. She will start the medicated infusions on Monday.

Miss Dani has started a new trend of rolling her R's when mad. With steriod she seems to be mad quite a bit. So when she is learning spanish in high school she should have a step ahead of everyone.

We arrived at the hospital around 8:30 and left at 2:30. Dani actually cut it short by pulling out the IV line from the blood warmer. Luckily we only had probably ten more minutes to go on the flush so she received everything she needed. With the warmer on there we are not given a very big leash so she actually tripped on the wheels of the IV pole and when she went down it pulled it out of the warmer. I guess they were not thinking of little ones when they invented that.

She is totally in love with the Gerber Graduate Veggie Crackers. I think we went through half a box just today. She did not sleep much so she wore both of us out. They actually did not pre-med her before the transfusion nor did they start low and ramp her up on her infusion rate. She did really good with neither being done.

It is still unclear where our journey will lead us and so far none (knocking on wood) of this is effecting Dani besides the steriods. They did say they will wean her off the steriods while doing this medicated infusion so hopefully all will work and we will be moving forward. Please keep her in your thoughts and prayers.

Day +158

2007-04-16T14:32:00.000-05:00

WBC 10.0
Hemoglobins 8
Platelets 352
ANC 7500
Bilirubin - 2.1 (Normal .1 - .3)
Weight 26 lbs 1 ounce
Height 32 1/2

Ok ... Another interesting day. So as you can tell her Hemoglobins are going back down. The steriods are obvioulsy not helping. They took blood to start screening for a blood transfusion on Thursday. They will look at her counts then and decide the next course of action. Dr. Hayashi is talking about starting her on a drug called Rituximab. This would be a weekly infusion. It will help destroy the B Cells. The B Cells are what are attacking her red blood cells.

I put the Bilirubin count up there because it is high and we need to keep an eye on it. They said when Red Blood cells are broken down it lets out Bilirubins. We were concerned about her liver function because normally high bilirubin means her liver function is not good but they said that they can also monitor liver function by the AST and ALT level. I am not sure what they stand for but they are both fine.

She is still acting fine but of course we are on edge with all of this. She was a trooper when they were trying to stick her for blood today. She got poked three times. Her arms have track marks on them. Right now they are not considering putting the central line back in, but if her viens get too chewed up that might have to be considered.

Day +157

2007-04-15T20:40:00.000-05:00

All is well but I do believe the steriods are starting to show. Missy Miss has been really cranky today. I will take that as opposed to the alternative. We are hoping for good news tomorrow at Clinic.

The pictures are from at least a week ago with Dani enjoying her brothers and her bath. The middle one is Jason and I going to a 70's party. It was a lot of fun dressing up.

Day +156

2007-04-14T12:14:00.000-05:00

WBC 10.4
Hemo 9.4
Platelets 3920

Well I took Dani for a blood draw this morning. They said we would not have results until later this afternoon. I talked to her Cardiologist yesterday to see what he was thinking. He was not aware of her hospital stay so I filled him in. He said we would wait to see what her labs show on Monday and go from there. He said the bright side of this whole thing is with her hemoglobins down so low that if her Cardiomyothopy was bad she would of went into heart failure. Since she was non symptomatic that show her heart is pretty strong. So a bright side to the last week.

Very good results!!! We are relieved that the steriods seem to be helping. I will update after clinic on Monday. I hope you all have a nice weekend!!!

Day +154

2007-04-12T19:27:00.000-05:00

Dani slept over 12 hours from last night to this morning. She has been in a pretty good mood. I was astounded by the amount of steriod she is to receive everyday. I believe she is already getting her football shoulders. They also put her back on her anti-fungal which I am not sure why. I will ask on Monday. Above are some pictures from our hospital stay. You can see her IV arm on the first two days and she is lounging and watching Baby Einsten with Dad the last day while she was getting her second blood infusion.

I can not find my Kodak Camera's cable to download those so all I have is my cell phone pics. Hopefully the cable shows up soon. I have some cute bath time pictures.

We Are Home

2007-04-11T19:50:00.000-05:00

WBC - 15.1
Hemoglobin - 9.3
Platelets - 338
ANC - 1102

We just got home an hour ago (6:30ish). They gave Dani the 2nd half of the blood and waited an hour and took her blood and let us go. We did not have the best experience today and I will not go into details but we are sooooooooooo happy to be home!!!!

We never did get to talk to a doctor today but the rumor was we would have Home Health Care come out Saturday to take blood for a count but that was not on the discharge papers so I am not sure. I know we have an appointment at clinic on Monday.

Dani is doing well. She is really tired as am I and we are hoping she will catch up on her sleep tonight. With her being back on steriods we assume her attitude will show and she will get her football shoulders back but whatever it takes to get her better.

I took some cute pictures with the cell phone at the hospital but do not have enough energy to download them right now. I will tomorrow. Thank you all for the thoughts and prayers and hopefully we are on an upswing.

Day +153 The Long Night

2007-04-11T09:38:00.000-05:00

WBC 14.0
Hgb 8.3
Platelets 344
ANC 1134

First off everything is fine and Dani did really well last night.

They finally got the blood upstairs around 10:30 last night. They had to have a blood warmer on the IV pole because they had to keep the blood at Dani's internal temp. They hooked her up and ran it very slow for the first hour and took vitals all the time. Her blood pressure was showing slightly low but stable and no other appearance of a problem. After the hour they started cranking up the rate and Dani was sleeping so I snoozed for an hour or so. Dani woke up around 12:30 and then the IV started beeping that there was an occlusion. The two night nurses worked with her IV for a bit but we were running out of time because all the blood had to be given by 2:00 or it would have to be thrown away. They concluded that the IV originally given was so tiny it clotted with the blood.

They called in a Paramedic team to run a new IV in her other arm ... more fun!!!! Dani did really well and they had it in pretty quickly. Fortunately they could put in a larger tube and now we can get blood drawn out of it as well so no more poking. They finished a little bit after 1:00 and then we got the rest of her blood in by 2:10 am. I had to hold her for that hour because the lead from the warmer was not long enough for her to be very active. We finished the blood and then gave her her steriod and we were asleep around 2:45 to be waken a little after 4:00 am to get a new blood draw for counts. After that we slept until around 7:20am. When I asked about counts they said the labs had to be done a special way so they needed to redraw blood to get an accurate read. The last I heard (not officially) was her hemoglobins were at 8.3 (better).

The docs have not made rounds yet but the word on the street is they will give her the second half of the blood and she will be discharged today. Fingers Crossed!!!! I will update when I get more official word. Thanks for all the prayers!!!

Day +152

2007-04-10T07:56:00.000-05:00

We have not gotten a full report yet from blood work but Hemoglobins are up to 6.0 ... normal is 10.5 to 13.5. She has gotten 3 doses of steriods so far. They still have not gotten any blood to give her. They are hoping they will get it this morning. She slept fairly well considering better than Jason and I. Her blood pressure is a little low ... bottom number 30 or 33 depending but that is also them taking it with the automatic machine that does not like Dani. I have not heard that they are concerned about that yet.

I will update again when I know more.

3:07 pm ... We are still waiting for blood. We found out she has both cold and warm antibodies. With this anemia it is normally one or the other. They had to take a fresh sample of blood and measure the temperature of it to get the transfusion to match. We will hopefully be getting things going soon.

5:37 pm ... Frustration setting in. Well a half hour ago they had two samples they matched (although not perfect ones) and they were going to let Dr. Wilson decided which one to try. He did not like how "reactive" they were and decided to confer with Dr. Hayashi and run another set of counts and decide if they would just let her bounce back on her own. Of course this means she got stuck again. Her poor arms looks like target practice. Although she is being a trooper and did not cry at all with this last one. So we are still waiting ....

7:43 pm ...

Hemoglobins 5.2
WBC 11.6
ANC 1730

Ok well something is not right but we are not clear on what it is. We just got the lab results back but have not talked to the doctors again. I will let you know when I find out. Obviously her Hemoglobins are even lower than yesterday and her WBC are much higher. Maybe this will end up being viral ... not sure.

9:46 pm ...

At some point we are going to do a blood transfusion but I am not sure when. We are apprehensize about reactions and such but they said if anything goes wrong we will head straight to ICU.

Day +151 Inpatient

2007-04-09T17:34:00.000-05:00

WBC 7.5

Platelets - 291
Hemoglobins - 5.7 (VERY LOW)

ANC - 4875
Weight 25 lbs 7 ozs
Height 32 inches

We got to hospital as usual this morning and had labs drawn then headed up to the HemOnc Clinic. The first doctor we saw was a Med Student. He was asking the usual questions which I said all is well and then he simply said I see she is jaundice. And I said "She is?" She does not look any different to me. Later on Dr. Wilson said that because we see her everyday and are use to her coloring we did not notice it but she did look a slight bit jaundice. Well after the med student left another doctor came in and asked how she was acting and checked out her vitals and said her Hemoglobins (Red Blood Cells) where very low. So they drew more blood and decided to do a blood transfusion.

This ended up being a very long day. They ended up (since her central line is out) having to stick her twice to get an IV in. Then we waited. They were looking for either signs of Graph Vs Host disease, her anti-rejection medicine attacking her red blood cells, or autoimmune hemolytic anemia. All her other numbers looked good except a slight raise in billirubins (sp?) which can be caused just by the destruction of the red blood cells.

Finally around 1:00pm they came in and told me she had the anemia. They said this is very treatable but that they needed to get on it quickly. So since they already had the IV in they decided that inpatient was the best route to go.

So we got to go home and grab some stuff and headed back up here around 3:00. It is 6:15 now and they just started her on steriods (Methylprednisol) and will take it every six hours. They are having to specially screen the blood to find some that she can not break down as easily. They said we might not have any until tomorrow. The doctors where just in and said this probably going to be an issue for awhile. They will try weaning her off steriods but they said alot of times as soon as they start that her body will start attacking the red blood cells again. So this will be another day by day adventure.

Gabe and Ethan are with their dad for the next two days at least depending on when we are released. Say a prayer and we hopefully will be back home Wednesday.

Day +145

2007-04-03T10:49:00.000-05:00

Sorry about the long wait for the results on the hearing test. We had an interesting weekend. Dani is definitely not a happy camper with the animals that are in the boxes during the test. So they actually used her crying as a measurement on what she could hear because she would not look in that direction. Fun huh? Anyway they said she is still show very mild high pitch hearing loss but nothing severe enough to effect speech or development. They also said there could be fluid in the inner ear that the naked eye can not see. So she needs to go back in six months to recheck.

The orthopedic office also left a voicemail and the surgeon said she did not have to go back for a year. So maybe we can space out some appointments.

In other news .... Missy Miss is showing temper. I think she might be teething and she definitely is spoiled. She lets you know as soon as you do something she does not like ... for instance if you do not give her all of your attention. She also looks like she is going to have curly hair so we are gonna keep our fingers crossed on that. She goes to clinic next Monday so I will update then with results.

She loves her books and especially the kitten and bears in them. She is saying a lot more words. She also is now helping more with task. She will try to put her seatbelt on in the car and if you say bath she will start trying to take her clothes off. She is getting so big!!!

Another Angel

2007-03-31T19:50:00.000-05:00

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

2007-03-27T13:03:00.000-05:00

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

2007-03-26T13:59:00.000-05:00

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

2007-03-21T08:57:00.000-05:00

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

Another Angel

2007-03-21T08:46:00.001-05:00

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

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

Day +130

2007-03-19T08:42:00.000-05:00

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

2007-03-08T11:30:00.000-06:00

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

2007-03-07T10:19:00.000-06:00

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

2007-03-05T19:24:00.000-06:00

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

2007-03-05T11:16:00.000-06:00

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.

Day +108

2007-02-25T20:47:00.000-06:00

We had a wonderful time today at the Klenke Bowl, in honor of Kraig, and for the MPS Society. Dani did not attend but Jason, Gabe, Ethan, and I did. I hope more of you will be able to attend next year. We saw a few different MPS families and it was wonderful to see them. I won a wonderful basket of MPS logoed items. Dani is modeling one of the hats in the pictures. Gabe won a volcano lamp and Jason won some Bandana's BBQ sauces and spatula.

I will post more pictures of the bowl when I see them. I, of course, forgot our camera. Dani went to her first family function yesterday. My nephew P.J. (who I wrote about in November) is in town for his sister Erin's wedding. Dani did well and everyone was happy to see her but of course today she has a runny (clear) nose and a little bit of a fever. This could be due to her trying to break a molar through but it has put us on edge. I am hoping we did not push to soon. She has no appointments this week. The boys go to the dentist on Tuesday and then Jason is out of town Tuesday to Wednesday. I am hoping for a normal ... no appointment week soon. Dani goes back to the clinic on the 5th and gets her Central Line out the 9th. I will update again as things occur. Hope you all have a wonderful and uneventful week.

Day +102

2007-02-19T14:37:00.000-06:00

WBC 3.6
Hemoglobins 10.2
Platelets 263
ANC 1656
Weight 24 lbs 15 ozs
Height 32"

Hi All,

All is well here. I am back at work and Dani is with Grandma. It will take me a little while to get in the swing of things. My nephew PJ is coming home this weekend and I can not wait to see him!!! Also we are going to Klenke Bowl on Sunday for MPS honoring Kraig. Should be a fun weekend. We do not have another appt for Dani until the 5th of March. I will update before then.

Day +99

2007-02-16T12:54:00.000-06:00

Tomorrow is the big day!!!! I can not believe how quickly this has gone. Dani had her Bone Marrow Biopsy this morning and all went well. We will not know results on it for a couple of weeks. I am starting back to work on Monday. It will be nice to get back to a normal routine.

She has clinic Monday morning and when I know results I will update. I hope you all have a good weekend.

Day +96

2007-02-13T19:54:00.000-06:00

The boys school was cancelled and ice started before snow so I cancelled her surgery today. I am not sure when it will be rescheduled. Her hearing test will be on March 5th.

She is taking a lot more steps today .... probably because I am pushing her a little more since no infusions.

Day +95

2007-02-12T12:59:00.000-06:00

WBC 3.6
Hemoglobin 10.8
Platelets 319
ANC 1440
Weight 24 lbs 15 ozs
Height 31 1/2"

As usual these days I do not have any numbers yet and will update again when I do. Dani no longer has to do ANY infusions!!!! Yippeeee!!!!!! She is on all orals meds now. She will only be doing two test for her 100 days. She will be put under tomorrow to do another Bone Marrow Biopsy and then some point this week she will have a hearing test. They will be doing an MRI and X-Rays at 6 months out. I cancelled her eye exam because I am getting a second opinion May 1st and she will go back to Dr. Tyson June 1st so there is no point in doing one right now.

She will have clinic again next Monday and then start going every other Monday. She will have her central line taken out 2 visits from today. That is sooo exciting also. I asked about doing an eat study on Dani and Dr. Wilson said he would check into it. I would really like to get her eating table food at some point and then switch over to whole milk.

She only has to wear a mask going to the hospital and doctor's offices now. Although we are still not taking her out in public places but we do not have to worry as much as we did. I am trying to think of what else I asked today. She is currently taking 7 medicines (four of those being her heart meds). We will hopefully be weaning those down as the days progress.

I should start back to work next Monday and am ready to go. It will be nice to have two paychecks again. I know Grandma Dunn can not wait to get her hands on Dani. She has not been able to spend as much time as she was use to with her. I can not thank my bosses and friends at work enough for being so wonderful during this entire situation. I could not have asked for a better work environment and so much understanding. Everyone has been so supportive through this and it has helped tremendously.

We are thinking about having a party in the summer so Dani can meet all her family and friends. I will let you all know when I have more details about it.

Please keep Nick and his family in your prayers and hug your love ones.

Send some love

2007-02-11T20:06:00.000-06:00

One of Dani's roommates during her transplant received some awful news. His transplant did not take. Please send some love his way!!! He is only 4 1/2 years old and so full of energy.

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

Day +88

2007-02-05T11:46:00.000-06:00

WBC 3.4
Hemoglobin 11.4
Platelets 318
ANC 1836
Weight 24 lbs 8ozs

Well today went ok. I do not have numbers yet and will edit this when I get them. They were very busy so it took awhile to get in and then we were in a regular room and not an isolation room. I talked to them about when we would be able to take out her central line and they said a month. They also said we would be starting oral cyclosporine next week ... which will be wonderful!!!

The only test date I got back was Feb 13th at 12:30 they will be doing another Bone Marrow Biopsy. I asked about another MRI and they said one was not requested but that occurred with the original testing before her transplant and when I questioned them they had not realized she should get one so I left a voicemail about it today. I would like them to do it at the same time as her Biopsy so she only has to be put under once.

She took quite a few steps yesterday so it will not be long until she is on the loose. I am in no hurry ... lol. I hope you all have a good week and I will post more when I know more.

Day +85 Cardiology Appt

2007-02-02T10:43:00.000-06:00

Well there was good news and new news. At the last Echo in October Dani's shortening fraction was 26% last time and this time was 29%. Her ejection fraction was 52% and now is 53%. Both of these numbers are in the normal range (YEAH!!!). Dr. Goel left the medicine all the same but said he will review her chart more closely later on today and would let us know if he changed his mind. He also is talking about her weaning completely off which was exciting to here. I can not imagine not having to give her any meds ... that would be wonderful.

She still has the PDA (hole in her heart) so he wants to close that this summer. He said its a pretty minor procedure but would require an overnight stay. He said we could possibly do the eye surgery at the same time so she will not need to be put under twice this summer. I am going to get a second opinion on her eyes in May and her appt with the original eye doctor is the first Friday in June. So I will know more then. He wants to wait until summer because she will obviously be further along in her transplant and the less likely she can catch a cold or flu then.

He wants the central line out as soon as possible because of the risk of infection especially with the hole in her heart. So I will talk to Dr. Hayashi and Yvonne Monday to see when that will be.

Ok so the new news is she has fluid around her heart. (Hi Kallie) He said that the GVHD (Graph Vs Host Disease) could be causing it and it might go away on its own. The problem is that we have NOT had an echo since October so we do not know if it has been there or just appeared or is getting better or worse. So she will go back next week for a quick check on it to see if it is getting worse, better, or staying the same. He is not concerned with it if it stays the same but we will keep an eye on it. It seems it is always something.

Dani is teething and has been pretty fussy this week in general. I had her in a pretty good routine last week and that went by the wayside after the weekend. She is not sleeping as good as she had been but after tylenol and numbing medicine she is not as cranky.

She has lots of hair on her back and shoulders. She also has pretty good side burns, mustache, and hair on her forehead.

One day at a time is all we can ask for. Her 100 day testing will be coming up the 2nd week in February I believe. I have not gotten a schedule yet but when I do I will post it.

Day +81

2007-01-29T14:33:00.000-06:00

WBC 2.5
Platelets 287
Hemoglobin 11.0
ANC 1100
Weight 25 lbs 40zs
Height 31 inches

This is just a really quick update because Dani is awake. When she lays down I will post more.

As you can see her counts are a little lower than last week. She still is acting fine and the rash is pretty much gone. Her Phospherus (sp?) level has been a little high at least the last two weeks and the nurse was going to let Yvonne know. I am not sure what that means and will let you know when I find out.

I received an email from Tom that the Dart Tournament went wonderfully. He sent pictures also. Thanks to everyone that came and participated and especially to Tom for putting the event together.

Day +77

2007-01-25T16:44:00.000-06:00

Dani's rash is almost gone .... Thank you all for your prayers!!!! She just learned today how to get on to her toy zebra (Video below). That is an awesome accomplishment because of her being diagnosed with Hip Dysplasia. She is also learning Lion and how to roar. It is so fun to see. I will add more in a bit but Grandma wants to see the video so here it is.

http://s5.photobucket.com/albums/y199/rdhdtrue/?action=view&current=Pictures12606003.flv

Day +74 The numbers are in

2007-01-22T13:43:00.000-06:00

WBC 2.8 (Yeah!!!)

Hemoglobin 11.0

Platelets 267

ANC 1288 (We will take it)

Weight 25 lbs 6 ozs

Well it was a much better day at clinic. First off we only where there for maybe an hour and a half. What a difference that was. It was wonderful!!!! The doctor looked at her rash and just said that she could have it for as long as a month. We just do not want it to get worse and we want her internal counts to stay positive (they are watching gut, liver, and kidneys). I did not get those today but she said she would call if there was something up and I could get a copy next week.

There is going to be a Dart Tournament this Saturday and I hopefully will be able to post the flyer soon. It is being held for Dani by a Friend of a Friend. He runs this every year and picked Dani for this years event. He just gave me the information today so sorry for the late notice. Sounds like a lot of fun. Below is just the text from the flyer.

4TH ANNUAL TOYBOX CHARITY DART TOURNAMENT

Saturday January 27th, 2007

A Darts for Kids Charity Event

PRIZES

Raffles

50/50

Tom’s Toybox

*Food*

Parker BTG Challenge

S C H E DUL E D EV E N T S

$ 10 EN TR Y

Time Event

12:00 PM BLIND DRA W -CHICA GO

2:00 PM O P E N SI NG LE S-B A SE BA L L

4:00 PM DRA W TRIPLES-SPE C IAL X’ S

7: 00 PM OPE N DOUBLE S -501

9:30 PM BLIND DRA W -FLA T EARTH

100% PAYBACK ON ALL EVENTS

SCREAMER’S
6109 Gravois Ave St. Louis, MO
(314) 353-2020

For additional Information Contact: Tom Antoni

Cell: 314-565-4746

E-mail: antonit@netzero.com

Day +72

2007-01-20T21:26:00.000-06:00

WBC 2.4
ANC 1245

Sorry this is late but it has been a little busy here. Dani is maintaining on the rash. It is not getting worse or better. Obviously her numbers were a little better on Friday. She is still acting fine. She just this week started saying Mama, Night Night, and trying Puppy. She gets the Pu out and acts like she knows there is more to it. No luck on fingers foods though. She stubbornly sticks to 2nd stage baby food.

Jason and I got a night out last night thanks to my niece Trish. We met up with another couple and had a wonderful time!!! It was nice to have some adult conversation and let loose.

My niece Erin's bridal shower was today and it was fun. Jason was home with the kids and survived well. We are waiting to see what the weather is going to bring tonight. I hope you all have a wonderful weekend. Dani goes back to clinic Monday and we are hoping for higher numbers again.

Day +69 Frustration

2007-01-17T18:14:00.000-06:00

WBC 2.2
Hemoglobin 10.8
Platelets 236
ANC 858
Weight 25 lbs 3 ozs

Today was a day I will gladly put behind me. I will start from the beginning and include every moment so sorry but it is going to be long.

I was very much hoping that we would have the results back from her enzyme test by today so we did not have to spend 6 1/2 hours at clinic. We got there right at 8:40 am. My niece watched the boys for me before school and they only had a 1/2 day so she stayed for them to walk home ... Thank You Trish!!!!!

When we arrived I knew it was going to be an off day because we did not have our regular nurse Cheryl. We normally get out at 2:00 but we did not end up leaving today until 3:15. The nurse practioner came in and said her enzyme level on her blood test came back as normal level. WONDERFUL NEWS!!!! So I said we did not have to do her enzyme treatment today? She said she still wanted to do it because her urine test has not come back yet. Her level was at 77. To begin with it was 0. But Yvonne could not tell me what normal level was so I called Jason to try to google it. He could not find anything and ended up calling the genectist (sp?). They said they are happy with kids with Hurler's having a level of 17 so for her to be at 77 was awesome.

I was not happy with having to sit there for that amount of time if she had a normal level of Enzymes but I did it anyway.

They also said that her rash could be Graph Vs Host Disease. They volleyed back and forth all day with it could be GVHD or it could be viral. So we still do not know. They went ahead and prescribed steriod cream for her and she already has had one rubbing down with it.

The next hit was her WBC and ANC levels. They were REALLY low. Jason was very concerned about going until Monday without rechecking it so the home nurse is suppose to be coming Friday. All her internal levels for her liver, kidney, and such are fine. They all reassured us this was normal for it to go down this low because of her being weaned off the steriods and with the rash. They also said it might not start going up again for a month because her body will take awhile to fight off whatever she has.

Jason and I just have an uneasy feeling about this whole thing and there was a lot of changed story between Saturday and Wednesday. Please keep good thoughts for Dani and that she is just going over a bump in the road.

Day +66

2007-01-14T17:25:00.000-06:00

Well to top off yesterday's activities we lost power at 10:00 pm. It was quite nuts around here. Gabe was trying so hard to help out and doing what he could to help and it was much appreciated. We ended up starting up the generator and getting the heater going in the living room and Dani's room. It actually could of been a lot worse but it was a long night.

The boys fell asleep on the couch and the electric came back on at 1:40am. So I carried them to bed and what a feat that was. Jason was getting the generator turned off and things organized. Of course Dani decides to wake up at 4:00 am so I got up with her and tried to get her comfortable.

Now we are bracing for another round tonight and I am soooo hoping we stay online. My mom and niece's family are still out and at my sister's in O'Fallon. I am sooo getting to hate the word Ameren (Our Electric Company). I hope all make it through the weekend warm.

Dani is doing well. She showed a little sign of itching this morning so we gave her Benadryl and that seem to help. Her appetite and disposition have been fine.

Jason went out to buy more provisions for the evening and we hopefully will not have to use them. I am going to cancel the cardiologist appt tomorrow because of the viral infection and we are both disappointed with that. We want to see how her heart is doing. I will let you know what I reschedule it for.

Day +65

2007-01-13T16:21:00.000-06:00

Well we have been watching a small rash on Dani's face since Thursday. It was noticeable on one side of her cheek yesterday. Last night Jason noticed it was on both sides. I called Amy (Our Coordinator) and she said keep an eye on it and if it gets worse call the hospital.

This morning it was on her legs and arms so we called and went into the hospital. We were there for three hours. Jason won a PSP game from work yesterday and that came in very handy with keeping the boys entertained. Which Gabe is proudly displaying in the picture.

They are thinking right now she has fifth disease. It will not be confirmed until they get labs back. This is a common childhood viral infection but of course with her immune system it's not the best news. Although we were scared of Graph vs Host Disease so at least it is not that. There is nothing we can do but keep an eye on her and luckily she is acting fine. I talked to Amy and she did not seem concerned so that was nice to hear. She said Dani is far enough along in the process that she should be able to handle it.

The problem will be that it will take awhile to get out of her system and her counts will be low. Today her WBC was 2.7 and her ANC was 1700. We are to call if she gets worse otherwise.

Day +63

2007-01-11T17:04:00.000-06:00

Hi All,

All is fine here but I wanted to send out a prayer for Cadence. She is further along then Dani in the process and having complications.

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

Dani has learned the art of yelling ... or so she thinks and is trying to make good use of it. She still is not walking but can make it anywhere so the baby gates have been up for a month or so now. She will even coast down the hall just using the walls. She also is now fasinated with closing her bedroom door. She is still not saying anything more than dada and baba but she is starting to have a full conversation using baby babble. All sorts of different sounds are coming out of her mouth which is good to hear.

She is doing better with keeping her glasses on but it is still a bit of a struggle. She definitely knows right and wrong with what she is suppose to touch or not touch. She also loves to dance.

We started her on some table food and she is doing well with them. Carrots, Vienna Sausages, Spaghetti, Strawberry Yogurt, and some others. She is not into picking them up and putting them in her mouth by herself but if we give them to her she chews and swallows without gagging anymore. Her appetite is still way down from where it was but she is eating enough not to worry about it.

I am hoping the bad weather this weekend will not keep us from the doctor Monday morning because I really want to see how her heart is doing. I think I have said this before but I am printing all of her blog out for her baby book so that is why I am putting so much detail into it.

We also want to thank everyone that has contributed to Dani's Medical Fund. We have had quite a few in the last month and we can not tell you how much we appreciate it. We have a long road ahead of us and with myself being on nonpaid leave it has helped alot.

Day +60

2007-01-08T16:54:00.000-06:00

WBC 3.6
Hemoglobin 11.0
Platelets 243
ANC 3024
Weight 25 lbs
Height 31"
Head Circumference 17.75"

All is well. Hopefully today was Dani's last Enzyme Replacement Therapy. We will see if we get the results back before next Wednesday. She is doing wonderfully and we are looking foward to her heart appt next Monday and her 100 day test the second week in February. I do not want to jinx anything but I am hoping to be back to work by the last of February.

The boys are back home!!! We are complete with chaos now and love every minute of it. If you are wondering, PJ is doing really well. He has been through a lot in a short amount of time and has some adjustments to make so please keep both him and Dani in your prayers!!!!

Day +57

2007-01-05T16:33:00.000-06:00

Ok Boys and Girls,

This is a benefit that goes right to finding a cure for MPS. It will be held on February 25th in Collinsville and it is a Bowl-A-Thon. We hope to see you there. The information is at http://www.bowl4kraig.com/ .

All is fine with Dani and she is so close to walking it is scary. Look down below I added cute pics today of her to the previous entry.

Day +55 Drum Roll Please

2007-01-03T18:18:00.000-06:00

Miss Dani is 100% Engrafted

I was so excited yesterday I forgot to update her numbers ... here they are
WBC 3.6 (They said these will continue to decrease as she is weaning off of the steriods. Once that is done they will start going up again)
Hemoglobin 11.1
Platelets 254
ANC 2196
Weight 24 lbs 14 ozs

They gave us the results today from the biposy and Dani has 100% of her donor's cells. That is wonderful!!! I was not expecting that at this point. They took samples today to find out if she needs to continue her enzyme therapy. We will know in two weeks and she will be getting an echo on her heart on Jan 15th. So more results to come. You can definitely tell a difference in her appetite as we wean her off of the steriods. She is not eating nearly as much as she was. She is also getting better with table food.

It has been pretty calm "knock on wood" this week. The boys went to their Dad's until next Monday when school starts.