Day +108

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

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

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

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

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

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

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

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.