Day +116

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

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

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

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

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.

Day +81

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

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

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

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

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

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

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

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

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

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

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.