Monday, January 29, 2007

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.

Thursday, January 25, 2007

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.

Monday, January 22, 2007

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.
Saturday January 27th, 2007
A Darts for Kids Charity Event
Tom’s Toybox
Parker BTG Challenge
$ 10 EN TR Y
Time Event
7: 00 PM OPE N DOUBLE S -501

6109 Gravois Ave St. Louis, MO
(314) 353-2020
For additional Information Contact: Tom Antoni
Cell: 314-565-4746

Saturday, January 20, 2007

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.

Wednesday, January 17, 2007

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.

Sunday, January 14, 2007

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.

Saturday, January 13, 2007

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.

Thursday, January 11, 2007

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.

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.

Monday, January 08, 2007

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!!!!

Friday, January 05, 2007

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 .

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.

Wednesday, January 03, 2007

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.