HAPPY HALLOWEEN!!!!

Things have been going fine at the home front. We are enjoying our last few days at home. Dani will be going back into the Hospital Wednesday to start Chemo. She is on the verge of walking .. it wont be much longer. She has been in a great mood the last few days.

WAY TO GO CARDS!!!!

Better and Better

Dani was a little off Monday but today was much better. She is getting back to her old self. I believe the weight gain was due to the steriods they had her on. She leaked quite a bit yesterday and looks a lot less bolated today. She is now on 8 medicines during the day which is quite a bit to keep track of but it helps that we where use to her heart meds before this.

We all got our flu shots this weekend and Monday. Of course the boys started sniffling and coughing yesterday and today. But I am armed with Lysol and Clorox wipes and went to town this morning on everything. I am hoping that is enough to keep baby girl well. Besides that we are just enjoying the time at home.

Special Special Thanks to Scotsman Jewelers on Olive for everything they have done!!!! They have not only donated personally to help Dani but they have created promotions to help raise money. It still amazes us the generiosity of people. I also want to thank my girls from Justmommies for their gift for Dani during her stay in the hospital.

Sunday Sunday Sunday

The first picture is Dani pretending her ring is a phone and the second is her hives on Thursday.

Dani is home !!!! She is doing good. She gained 2 pounds in 4 days during the hospital visit. I believe the reason on that is because all she could do was play in her crib, play on the bench in the room, and eat... NO EXCERCISE ALLOWED!!!! I know during her 4 week or longer stay therapist will come in to help her work out but not during this 4 day stint. ANYWAY we are so glad she is home and she has been sleeping since we have been home. I picked up all her meds except one from Walgreens and we will enjoy our week and a half reprieve.

Ummmm Did I mention GO CARDS!!!!!

From Daddy

First night at the hospital with Dani, and I am in complete awe of my daughter. I got there around 6pm and her hives on her face were hard to stomach, just as the first time I watched her get sick yesterday, but as time progressed they started to subside. And all of that seemed to phase me more than her. She is such a strong person at such a young age and there has never been anyone more inspirational in my life until now. I am so thankful that she is still eating healthy and full on energy. You can definitely tell that she just wants to be home with her bed, her walker, her toys, and family. She didn't sleep too much last night and the times that she was able to stop crying long enough to fall asleep the nurses came back in to take her vitals and wake her up again. With all of that throughout the night she got up this morning in a cheerful and playful mood and her smiles were all I needed to shake off the sleep deprivation, concerns, and anxieties. I love her so much and I long for the days that we can look back on her struggle with the distance of time and a greater fondness for life and to live it they way that makes us happy. I know this is all so hard on Kelli too, and she is an absolute rock. Frankly I knew my wife was a strong person, as I have seen her swim in the sea of discontent surrounding custody and ex-husband issues that would have made a lesser person crack. But she is absolutely amazing and I now know where Dani gets her persistence and smile in the face of it all. I am so lucky to have the both of them in my life. I sure missed the boys last night too. Its a much different life when we all are not together in our home and having to be with the boys separated from each other is hard too. But right now its necessary to move us all forward. They have been very strong as well and I hope that all of this doesn't make them grow up any faster that they should. I love those two so much. I spent most of the night thinking about the big picture and I can say that there is no place that I would rather be than with my family, even if we have some bumps in the road. When Kelli came in this morning to relieve me to go to work, Dani 's face lit up like a Christmas tree, she loves her mommy. I hope see has a good day today. Love Daddy.

Dani did better today. They kept her on two different nausea medicine for the rest of the time and that seemed to help. She slept pretty well last night and she did not sleep (maybe an hour total) today. She was 10 minutes from being done with the 6 hour infusion and broke out in hives. They did not bother her too much but her face was all broke out. She did a lot better today than yesterday. Jason is staying with her tonight and when I left her face looked pretty good. Each day they will up the concentration of Campath so we will see how she does tomorrow. She is not impressed with the toy arrangement or her crib.... this could be a LLLLOOONNNNGGG Hospital stay the next go. It will be worse then. Can not wait till Sunday and then X-mas ... sorry to make your guys year go quickly.

Quick Update

We really did not get things going today until 2:50 pm. We sat around most of the morning waiting. She is sleeping right now but had a fever and nausea and was really hurting for awhile. They are still trying to get medicine for the nausea from the pharmacy (Its 6:40) but she finally calmed down and is sleeping right now and groans every once in awhile. It is hard to watch her like that, but hopefully they now know how she is gonna react and will pretreat it tomorrow. We will see how tomorrow goes.

Well we got to the hospital to do the viral swab and they needed more blood. Her clotting factor (my medical jargon lol) is high so they needed blood drawn from her arm rather than her line to make sure the heparin was not giving it a false reading. So she got a need in the arm and was not happy about it.

We also did the dentist visit today. We waited an hour in the waiting room so he could look at her for a minute and say she was fine and she had no infections in her mouth. They were nice enough to only charge us $10.00 though since she has no dental insurance. So all that is done.

On to the next step ... will let you know how things go tomorrow. Thanks for all the prayers!!!! Please continue ....

Another Long Day

The pictures above are Dani with her Cousin Kendyl who is exactly 1 month younger than Dani .. although she was born 6 weeks early (if I remember correctly) Arent they cute????

It was a dreary rainy day today. We got to the hospital around 10:30 for our 11:00 appt. We got in around 11:20 and actually it went pretty quick. Her left eye is turning in so we have to put a patch on her right eye for 2 hours each day. We have to come back the 27th of December to discuss surgery. They are not only talking about doing a lens transplant but they have to work on her eye muscle also. I was suprised they were talking about doing it so quickly but he did not seem like it would be an issue. We will talk to HEMOC about it also.

We then went to talk to the pediatric pyschologist. She just wanted to see how I was dealing with everything. As I have said before just one day at a time.

Well we were on our way to take my mom home ... about 30 minutes from the hospital and Amy called. She was hoping we were still there because they forgot to do the viral check on Friday and it has to be done before Wednesday. So I get the pleasure of going back to the hospital tomorrow morning by 9:30. She then informed me that I had to pick up an antiobotic for Dani today for her to take before her dentist appointment tomorrow. So we dropped Mom off and headed home.

Carpet installation was today and when I got home all I could do was drop Dani off with Jason because I had to be at school to talk to Ethan's teacher at 3:30. I hit Walgreens before it because the line into the school was so long .. grabbed her patches while I was there. I then talked to his teacher, grabbed the boys from latch key and headed home. What a mess !!!! I wont even go into all the details with that but they will finish up tomorrow and hopefully I can get the house back in shape before Wednesday. Anyway had to meet with Gabe's teacher at 6:30 so I am finally home!!!! Dani has been sleeping for a couple hours now. She was as tired as I was.

Long Day

Dani is so strong and such a trooper. The day started at 4:30 this morning. I got up to give her apple juice because she could have clear liquids up till 5:00am. We all got ready and Grandma Boni came over to stay with the Boys until she could drop them off at 7:00 at YCare. We were suppose to be at the hospital at 7:00 but ran a few minutes late. When we were registering they called down looking for Dani ...oops.

We got into the Patient Treatment Center. We are there to have Dani put under and get an MRI and Bone Marrow Aspiriation and Biopsy. They tell us how concerned they are because they are dealing with a Hurler's baby and they are fully aware of the narrow airways and complications that can arise. This is both a positive and a negative. We are VERY happy that they are aware of her being a special case but of course hate to hear the list of things that could go wrong. And of course they have to point out that it is Friday the 13th.

Both Grandmas and Aunt Jackie make it in time to give her a kiss. I get to go with her and hold her until they put her to sleep. This is the first time I had the chance to do that and it was hard to watch her get groggy and sleepy. Jason and I leave to wait in the waiting room until they call. She was gone for a hour and a half before they come to tell us all went ok. They actually did not have to incubate her and just let her sleep peacifully and breathing on her own. We go back to see her and it was of course wierd to see her sleeping on her back hooked up to machines with the oxygen around her nose but she looked good.

She woke up about a half hour later and did it smiling ... groggy but smiling. Did I mention she is awesome? We then stay down there a half hour or so to see if she will keep liquids down and wake up a bit more before heading up to HEMOC. There we are greeted by Cheryl (Dani's nurse) .. she was impatient for some smiles from Dani. The ball gets rolling quickly on her ERT and just as we settle down and try to get her back asleep Dr. Hyashi comes over with Amy (Dani's coordinator). We all listen to Dr. Hyashi going step by step through the transplant process. Right in the middle of it he asked Amy if she told us the recent update on the donor.

Come to find out they got a call late yesterday ... (ummm my last day of work, should I mention?) that the donor's physical picked up something wierd on his/her heart and they have ordered an EKG/ECHO to make sure everything is all right. OKAY .... My heart hit the ground. Everything I was going to ask went right out of my head. Talk about a low blow. I knew everything relied on the donor but we had gotten an all clear on Tuesday so I thought everything was taken care of. So we go through the rest of the material and they tell us all the different medications she will be given and complications that could arise. We sign consent forms and everyone ask some questions. They big thing right now is making sure Dani DOES NOT get a virus. Since we are gettin into the big virus season we have to be extra careful. They will test her twice to make sure she does not have one but if we start the process and she has one it will be critical. They have no way to fight a virus.

Ok ... so after the doctor leaves and we are by ourselves I need to get away and think for a bit so Mom, Jackie, and I go for some food. When I get back Jason and his mom got down for a bite and Dani (who the nurse said would be very very tired after the procedure this morning) still has not slept. So I walk her a little bit and she starts to drop off and I just lay her down and a gentleman comes to give her an ECHO/EKG ... lovely. lol. So we go off to a private room and try to get in a comfortable position to get this done as quickly as possible. For those of you that do not know Dani personally, she hates laying on her back. She always has. We believe it has to do with her eyes but are not sure about that. She actually did really well until they wanted to stick the wand in her neck ... ummm no. So the gentleman called back up and an hour maybe an hour and a half later we were done and so was her ERT. We left the hospital around 3:00 pm.

The bright part of the day was on the way home when Amy called and said she got word that the donor passed the ECHO/EKG and the dates were still on... Thank God

My To Do List does not seem to get smaller but we are doing pretty well. All three of us took naps when we got home and are now getting ready to watch the Cardinals beat those Mets ... hehehe.

The goal in this whole process is to obviously get Dani well but in easier definitions is to get to day +100 (Transplant Day being Day 0) and see that the donor cells are taking over at that time. Dani has an eye doctor appointment Monday and we are meeting with a Pediatric Pyschologist after that. I will let you know how it goes.

Dani's Appts 10/10/06

Well up till a half hour ago I was going to report all went well and relatively smoothly. We got there at 8:30 and left about 1:30. They did test on her kidneys to make sure they are functioning correctly. They gave her a dose of radioactive iodine (less than an x-ray) and drew blood in different intervals. Then they took sinus, chest, and hip x-rays. She behaved wonderfully except when they were holding her head down and shining a bright light in her eyes to get the sinus xrays but who can blame her for that?

The peditrician called a half hour ago and said that Dani has hip dysplasia and other stuff. She faxed me the report and it says:

Pelvis: There is marked dysplasia of the acetabuli bilaterally. There is severe bilateral coax valga. There is mild flaring of the iliac wings.

Update before I even posted this ... She is going to see the Ortho doctor next Wednesday when she is admitted. He will come by her room. Also the hospital just called and are emergency scheduling an MRI at some point before Wednesday ... where is that gonna fit in? AND I have to meet with both of the boys teachers for conferences on Monday after the Eye Doctor appts....

We did learn today that another little girl right about the same age is going to be getting her transplant at the same time. She has anemia. So we will have company and be able to compare progress. Her name is Jennifer. As I learn more about her I will let you know. And dates are final so she WILL be getting her transplant on the 9th of Nov.

We are trying our best to keep a positive attitude and doing pretty well at it I think but it just seems like it is one thing after another and it seems that there is no end in sight. grrrrr Just again want to thank you all for all your support, prayers, and thoughts. It has amazed us over and over again and we are so thankful for it. Words are not enough to express how we feel.

Next Two Weeks Agenda

Miss Dani is doing well. She really good at pulling up in her crib now. And she has found her temper so if you are not doing it right she will definitely let you know... lol. She is cutting 4 teeth at the same time (2 on top and 2 on bottom) so not in the best of mood yesterday.

The boys helped me a lot this weekend (they still do not have tv & game although I gave in and let them watch Star Wars). We cleaned out all of their toys in their room. Well actually I took all of their different storage bins and dump them in the middle of the floor and let them resort. I gave them a weeks notice so they did not grumble too much. Although by the end I think they were not as picky on what they were throwing away. I had to go back through the bag and check that.

We got the duct work cleaned Saturday morning. Which was interesting and of course expensive. Then we got family pictures taken Saturday afternoon. They turned out really well. I will post them when Grandma Dunn has time to scan them in. We took the Mini Van in this morning to get regular maint and some recall stuff taken care of.

So I am working three days this week and then off until next year. Very scary to think of us having one paycheck coming in, but we will manage. Dani's schedule goes like this

Tuesday 10/10 - 4 hour Kidney function test and Body X-Rays
Friday 10/13 - She will be put under and do a Bone Marrow test and Biopsy, her ERT, bloodwork, and talk to Dr. Hiyashi about the final steps.
Monday 10/16 - Eye Doctor
Tuesday 10/17 - Dentist Appt
Wednesday 10/18 - Dani goes in for her Campath and stays until Sunday

More updates later .....

On A Happier Note

Hope this works... How cute is she??? lol

Click on the link

http://s5.photobucket.com/albums/y199/rdhdtrue/?action=view&current=Movies100206003.flv

Tentative Date

First off .... Dani's Cardiologist visit did not go as I was hoping. Her heart is not doing as well as the last time we were there. I was hoping that the Enzyme Replacement Therapy would help her heart keep improving. I in general am scared about her Transplant but I am especially worried because her heart is not in tip top shape. Her heart is still doing better than when she was born. The doctor also brought up again about her PDA (which is a heart defect..please google). He mentioned it two appointments ago and said if it did not correct itself she would have to have surgery and it has not. So on top of her heart not improving she will probably have to have heart surgery in the future.

Can you tell today was not a good day?

The hospital called tonight. The donor has gone in for the physical and as long as everything goes well there we are looking at Dani having her transplant on November 9th. So she will go into the hospital Oct. 19th for her first round of treatment.

They let me know tonight that I need to get her to a Dentist before all of this happens (2 weeks) to make sure she has no infections in her mouth. I guess there was miscommunication in the department about whether or not that was needed. All I know is that when I make the boy's appointments we are usually looking at 4 months to get in. I will start that mission in the morning.

I am sure I am forgetting something but I really do not feel like writing anymore. Please keep Dani in your prayers!!!!

New Pics

Pictures above are Dani Patty Caking and lounging around the house.

Well its been pretty quiet around here which we are enjoying. Dani did well at ERT this week. They did repair her C-Line. It had a very small crack in it. She is going like gang busters. All over the house and just pulled up in her crib yesterday for the first time.

We have been cleaning the house inside and out. We have gotten a lot accomplished which is nice. We have decided to get new carpet before the transplant. Seems they did not want us to steam clean it because of the mold/mildew issue and we thought with Dani coming home and crawling it would probably be beneficial to get new rather than mess with the old anyway. We are also looking into air cleaners for her room and the living room. We could not afford the unit you put on the air conditioner but hopefully this will work.

We are getting the ducts cleaned next Saturday. After that I believe we are done. Last thing I want to do is get a family photo done. Maybe next weekend ....

We still have not gotten an official date which I was hoping we would have by now. I am going to call Monday and see if I can find anything out. Dani has a cardio visit Tuesday. Keep your fingers crossed that her heart is even better than last time. I would love to be able to cut down on her meds before going in the hospital and adding more.