The Kids Pics

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

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

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

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

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!

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

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

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

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

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...