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

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!!!

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!!!

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!!!

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

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

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

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

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)

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

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

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

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

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

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

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

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

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

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

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

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