Day +48

Please say a special prayer for Kallie. She also has Hurler's and is +132 days post transplant. She is having issues with her heart. Stop and leave a comment if you would like.

http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=kalliegirl


Also I forgot to mention but Ethan taught Dani a wonderful trick. How to blow really juicy raspberries. The nurses were cracking up yesterday.

Happy New Year to All and I am hoping we and everyone else find some peace and happiness this year with lots of good days!!!!

Day +47

WBC 4.9
Hemoglobin 11.1
Platelets 315
ANC 2842
Weight - 24lbs 13 ozs (Wowser!!!)



Hello All!!!

Clinic today was fine. I was a little concerned about her WBC count going down but Yvonne said she is very happy with Dani's progress. She also said she was sure Dani was going to be in this weekend after her Central Line Disaster but Miss Dani beat the odds again. There really is not too much new to report. The repair to her line worked wonderfully today. We got to visit with quite a few of our regular transplant nurses (Sue, Michelle, and Mary). The only one we missed was Tina and she was our night nurse so if things go well and she keeps her schedule we will not see her (but we miss you!!!!).

Our next clinic visit is next Wednesday. I am hoping for results from her Bone Marrow Biopsy then also. Oh and she will be taken down to steriods once a day tomorrow and once every two days next week. I am hoping this will put an end to her weight gain because I am really getting concerned with her weight gain, her heart meds, and the hospital not increasing them. Our normal cardiologist increased her meds with her weight but since she is gaining because of the steriods they do not want to increase them.

Worrying about stuff is just natural for my side of the family and as soon as I post this I know both Grandmas will call me because I told them all is fine. Dani's blood pressure seemed to be up today. The machine did not like her at all and Cheryl (our reg nurse) had to take her blood pressure manually a few times to prove it was ok. I would just like her to either lose the weight she has gained or for them to increase her meds so that her heart is not strained in anyway. I really am probably being a worry wart but her heart has been my main concern through all of this and I really do not like pushing it.

Day +45 Merry Christmas!!!

I just wanted to say a special thanks to Suzanne and Rick Barge and their Bowling League for the wonderful gifts they sent for Christmas. We loved all of them!!!! I tried to do a traditional Christmas eve and morning. We of course stayed home because Dani is still in solitary confinement.

Jason picked up the boys from their Dad's Saturday morning and we enjoyed a full day. Baking Ham and Cookies and watching Christmas shows on TV. They received probably more than they should of both Saturday and Sunday from Santa. They pictures above are of course just some of the moments from the two days. We get the boys back tomorrow to enjoy their toys some more.

Dani will go to clinic on Wednesday and I will update again then to let you know what we learn. She is still doing well and we have no complaints here. She will be walking soon and I am sure the talking will catch up after that. I hope everyone enjoyed their holiday weekend.

Pie Eye we love you and keep up the wonderful job you are doing!!!! Merry Christmas to all of our family we were unable to see and we hope you had a wonderful time!!!! We will make it up next Christmas we promise.

Well Blogger is not liking pictures this evening so I will try to upload them tomorrow.

Day +42

Just some cute pictures. Dani is doing well and her line seems like it is doing fine. Gabe had his X-Mas concert Monday night and it was wonderful. The boys last day of school is today and they are having their X-Mas parties so were very excited to get to school. Gotta love it. I took these pictures this morning and Dani has her pink nursing scrubs on. The back says "Nurse In Training". Too cute!!!

Day +40

Well obviously things have not gone smoothly or I would not be posting. I am going to give the full story and personally feel lots of blame on myself for the incident.

I know the majority already know this and now you all will find out how anal I am about getting things done and the price Miss Dani had to pay which will NOT happen again. Yesterday was a full day of activities again with Clinic all day for Dani and then Gabe had a X-Mas concert that we went to last night. Grandma Boni watched Dani and Ethan for us.

This morning I got up a little later (around 6:30) and got all of Dani's meds ready and then took a shower. I then woke her up and gave her her bottle and all her meds and started her Cyclosprine on her pump. Ethan had just woke up and I did not make it clear but assumed he would keep an eye on her for me. I wanted to run downstairs and start a load of laundry and clean the cat litter because we have had a few accidents with a sick cat lately and I was trying to curve that..... all my excuses on why this happened.

ANYWAY .... when I was coming back upstairs I heard Dani whimpering and she was starting to get really mad. I walked into the living room and saw that her pump was hooked on one of the legs of the chair and the tubing was taunt. Just as I was reaching down to get it to give her some slack she just got mad and yanked her chest and shoulders. The next thing I know and I am sure I yelled "No Dani" pretty loud I see her double lumen on the floor and her still standing.

I yelled quickly for Jason and told him to call 911 because I was sure she had pulled her central line completely out. The cental line enters through her chest and internally ends up in her heart to distribute medicine and draw blood. I laid her down and put pressure on her chest to stop the bleed and Gabe grabbed me a towel.

Jason and I were both in shock at this point and obviously thinking the worst. The boys still do not totally comprehend the extent of what Dani is going through (which is not a bad thing) and was complaining because I was making them do things .... (imagine that).

I kept looking down at her stomach and chest and there was blood but not what I was expecting. When I saw it was not that bad I lifted her up and started figuring out what I would need to take with us in the ambulance.

A officer got there first and was asking questions and said the ambulance was behind him. When the peramedics got there they seem pretty calm with the whole situation which helped me to stay calm. They went and got her carseat out of the van and Dani and I were on our way.

I forgot to mention that Ethan had a doctor's appointment this morning which was one of the reason I was trying to get more done than usual. I called my niece Trish (she was going to watch Dani anyway) and asked her to come over as soon as possible. I then called the Boy's Dad to see if he could handle the appointment for Ethan.

At no point beside when the initial event happened did Dani cry. She was mad about being restrained and scream at the moment of pulling but was laughing soon after, which was amazing. The paramedic was wonderful and sang with me "Itsy Bitsy Spider" to keep Dani entertained while the driver was trying to get around Rush Hour traffic.

We ended up in Emergency where Jason and Grandma Boni arrived and then went to get X-Rays to make sure internally all was well and then up to Hem/Onc to get the line repaired. All ended up fine. The line was fine internally and they repaired it ... which so far so good. I guess the true test will be tonight when we do the next infusion. She missed none of her meds and she is now napping. The issue now will be making sure she does not get an infection from having that line exposed.

I will tell you this. I will be spending the 2 hours twice a day during infusion with her unless she is sleeping. I will not be taking any more chances. I take full responsiblity for the episode and nothing is more important than keeping her safe and sound.

Day +39

WBC - 8.3
Hemoglobin - 11.0
Platelets - 273
ANC - 6474
Weight - 10.93 (24 lbs)

Dani continues to move forward and gain weight. We are now referring to her as our little linebacker. She has some shoulders on her now. She is also starting to grow the hair all over from the Cyclosprine which is normal. That will all fall out (hopefully) once we wean her off of the cyclosprine around the +100 day mark. Yvonne (our nurse practioner) said we might start as early as +80 days but we are in no hurry as long as she stays healthy.

The boys are excited for Christmas and school vacation. I hope you all enjoy your long weekend and holiday. Dani does not go back to clinic again until next Wednesday so hopefully you will not hear from us until then unless of course I have really cute Christmas pictures to share. I took cute pictures today but can not find my cable currently to link my phone to my computer so I might update with those later.

Day +38

Makayla passed today at 12:37pm. I actually wrote this on the MPS Forum but felt I needed to share it here also.

Makalya is my first baby that I have known from birth to death .... I believe the same with my husband. I can not imagine what Tisha, Steven, Mimi, and the rest of the family is going through or any of you that have already lost a child. I just put myself in her place and break down every time I do it. I send so many thoughts to them and hope they get through this as well as they can. I am sure the strength is there when the situation arises but I am so far from that point that it hurts so bad to think about it.

I have even taken it out on Jason in a inpersonal way because I do not know how to deal with this. I love every child that I come to know (even via internet) and I know as I deal with the MPS world I will have more of these episodes but I do not want to and get so "angry" that I have too. I know the Holiday's will never be the same and just enjoy the good ones when we can. Hugs to all.

Dani is doing well and actually had Christmas with her Grandma Dunn today as well as the boys. We had a wonderful time and it was a really good day but thoughts of Makayla were always in our heads.

As my oldest nephew always says hug your loved ones!!!!

Please Pray for Makalya and Her Family

Makalya is 4 months old and also has Hurler's Syndrome and had her transplant a couple of weeks before Dani. They are really needing prayers and thoughts to help them through the tough decision they have now made. I have been following the family and Hailey and Makalya since I found out about Dani's diagnosis. Please take a moment and visit her site.


http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=makaylachavers

Day +36

Dani did great!!!! We were there a total of four hours and she is a trooper. They took her back with her blanky and the nurses said when she woke up she smiled and starting stroking her blanky and all was well. She drank a ton of formula as soon as they let her and we were on our way home. She was not cranky at all before hand even though she had not had a bottle since 5 this morning.

Hope everyone has a wonderful weekend and gets their shopping done. The pictures are of Dani squashing Ethan when he envades her space and her today in one of her birthday outfits.

Day +35

Well Dani has been very cranky today. She woke up around 1:00pm and had a raspy sound in her throat. I am hoping it is nothing. She has a Bone Marrow Biopsy and Aspiration tomorrow to see how well she is engrafting. They called today and said that they are moving it from the Procedure room to Surgery. I am assuming because of the issue with putting Hurler's patients under and their narrowed airways. I can feed her up till 5:30 am tomorrow morning (early morning ... groan) and she can have clear liquids until 8:00am. We have to be there at 10:00am and the procedure is scheduled for 11:45. I have a feeling we are going to have a long day tomorrow. If she has any sort of cold issue I will call it off. Jason and I are not taking any risk with her.

I am very frustrated at the moment with individuals taking advantage of bad situations. This is not necessarily related to Dani. It aggravates me to think someone would milk a situation for their own benefits. I have to sound off somewhere and I choose here because I have had the situation with medical personnel trying to send claims in on Dani when it was not a legit billing. How can someone use a person's illness to try to benefit from it? I watch every EOB (Explanation of Benefits) to make sure no one is making an extra dollar off of Dani being sick. Her bravery and strength in having to deal with this situation should not benefit someone else's pocket or experiences. I wish everyone felt this way and I also hope that I will not have to point out anything in the near future.

Day + 33 Happy Holidays

WBC 6.8
Hemoglobin 11.5
Platelets 197
ANC 5508
Weight 10.5 kg (23.1 lbs)


Sorry it has taken me so long to update her journal. It has been hectic here with Clinic, Ethan's X-Mas Concert, and then a doctor appointment for Gabe today. Dani is doing great. She again needed no blood products which they told me yesterday meant that she was engrafted. She will have a Biopsy on her Bone Marrow Friday. They said it would take 2 to 3 weeks to get the results back.

Dani is still whiny and cranky but we will deal with it. We are now working on her knowing the parts of her face. We are also trying to get her to like 3rd stage baby food. She HATES it. Cries as soon as she sees it on the spoon. As you can see she has a double chin now. That is thanks to the steriods. We will see how big she gets. I am starting to see I will need to go up a size in her wardrobe soon. She seemed to skip 12 months all together.

I am trying to get Holiday shopping done and doing an ok job with it. I hope everyone is having a nice holiday so far.

Day +28

Here is a video of Dani yesterday with her Birthday card. She had a blast!!!

http://s5.photobucket.com/albums/y199/rdhdtrue/?action=view&current=Pictures120606019.flv

Day +27

IT'S HER BIRTHDAY!!!!

Miss Dani is 1 today. She so far has had a good day. Grandma Dunn and Trish came this afternoon and brought presents. Gabe and Ethan are home now and keeping us busy. She is waiting for Daddy and Grandma Boni to come for cake and more presents. Here are some pictures but I will have more to post tomorrow.

Thanks Grandma and Grandpa Bullock and Aunt Pam for the birthday cards and gifts!!!

Here is a link to Dani's Quilt of Love made especially for her by a wonderful group!!!

http://www.quiltsoflove.com/quilt_2006/danica_gb/danica.html

Day +25

WBC 4.6
Hemoglobin 11.1
Platelets 146
Weight 10.04 kg
ANC 3680

Ok ... The numbers disappointed me a little when I first saw them because they are down again. The doctor explained that she is right where she needs to be and is only going down because of the booster (GCF) is still getting out of her system. She is producing her own platelets and blood so that is AWESOME!!!! All her other counts are in the normal range.

They also sang Miss Dani Happy Birthday and gave her a present ... it was sooooo sweet!!!!

They suprised me today by starting her Enzyme Replacement Therapy again. They originially told me they would wait till her 30 day Bone Marrow Biopsy. I am glad it started up again. She is doing wonderfully and back to gaining weight.

We can not thank you enough for all your thoughs and prayers. They have helped anormously (sp?). I have pictures but in my lazy way I will post them a little later.

Day +22

The boys and Dani are bundled up. We have no electricity and it is sounding like we might not have for a few days. We were caught in the ice storm. We have a generator but limited resources besides that. Jason has been stocking up on space heaters and extension cords to try to keep a area warm enough overnight tonight.

I am concerned with Dani but hoping the house stays warm enough not to effect her. If nothing else I guess we will take the boys to Mom's and Dani to the hospital if need be.

Day +21

Miss Dani is doing well. Still clingy but overall very well. She is just learning her "N's" and I do not think I mentioned this before but will raise her hands over her head to say "So Big" when you ask how big she is. I am making sure to write everything down on her blog because I am printing each month out and keeping it in her baby book.

We have our first winter storm today. The boys and Jason all came home early (around 11:30 am) so I did not have to worry about them (which was wonderful). Jason went out and got Hot Chocolate and stuff for Smores so should be an enjoyable evening.

Pie Eye continues to improve so I will take today and the last few as good days and hope they continue. My Christmas wish is that everyone stays healthy (or gets healthier) and shows love and giving to others. There are so many people in need, please take a moment and help.

My niece Angie passed away between Christmas and New Year 1999. She was a young lady that knew the cards were stacked against her and took the risk for a long life. She was a "Blue Baby" that was not suppose to survive her first year but made it into her twenties and I believe enjoyed every moment of her life. She taught me to enjoy life and hope that the doctors really do not know what the future holds for Dani or anyone. One day at a time is my motto and to show the people you love, how much.

Day +18

WBC - 6.1
Hemo - 10.6
Platelets - 101
ANC - 4148
Weight - 9.745 kg

I king of vegged this weekend. Dani is still doing great. She is still clingy and not as happy as she use to be but they said the steriod would do that. We will gradually ween her off of it starting Dec 7th and she should be done with it the first week or so in January.

She has had a couple of juicy diapers but I have been trying to feed her higher starch foods and that seems to be helping. We have clinic today at 11:30 so I will update later with all the details.

We got most of our Christmas decorations up this weekend which Jason initiated on Saturday. So it is nice to see them. I still do not know where I am going to put the tree so I have not gotten to that yet.

PJ is still holding strong and there is small improvements each day it seems. Please keep him and Dani in your continued thoughts and prayers.

Updated 5:11 pm
They were all very happy with how Dani is doing. I am interested to see the trend in her numbers now that she is not getting the booster shot to help them grow. I was very suprised her Platelets have maintained as well as they did. Go Dani Go!!!

Day +15

WBC - 8.6
Hemoglobins - 10.1
Platelets - 30
ANC - 6394

She is home!!!! She is sleeping in her own bed at the moment. I am just sitting down after getting about half of her stuff unpacked. Her medicines look daunting but I think we will get a grip on it. I need to thank my mom, my sister sharon, and good friend Michelle for coming out this morning and helping me disinfect the house.

She did end up getting platelets today. They said it was expected that her numbers would go down a bit because they stopped the medicine that helped to boost them quickly yesterday. Now she is on her own to keep producing. The home nurse care will come tonight to show me how to do her IV infusions.

Day +14

HAPPY THANKSGIVING!!!

WBC - 10.7
Hemoglobin - 10.5
Platelets - 40 (Probably have to get them tomorrow)
ANC - 7704
Weight - 10.1 kg
Total Cell Diffed - 100
Metamyelocytes - 1
Neutrophilic Bands - 6
Neutrophils - 66
Monocytes - 27


They gave me all the instruction yesterday for home care. They also called in all the meds to Walgreens for pick up tomorrow. Still not packing until they say we can leave. She is getting her antirejection (Cyclosprine) right now and that should be done by 10am and they are unhooking her from the IV. She is on all oral meds now beside the Cyclosprine which will stay IV even at home. We still have a long road to go but she is sooooo strong and wonderful I can not get over it. I know she will be so excited to see her brothers Monday night. They are with their Dad for Thanksgiving.

Encased you missed my update on the last post you can check updates on PJ at http://pjmeyerpeter.blogspot.com . He is doing as expected and we are just hoping and praying that his lungs get better soon!!!

Day +13

Drum Roll Please!!!!

WBC - 4.2

Hemoglobins - 10.9

Platelets - 68

ANC - 1937

Weight - 10.0

Total Cells Diffed 100 (Yipee!!!!) That means there could of been more than 100 they just look at the first 100 they find.

Neutrophilic Bands 2 (These are baby cells ... that means she is producing!!!)

Neutrophils 44

Lymphocytes 5

Monocytes 49

The pictures are of her bath this morning. She is doing wonderful!!!! They reduced her pain meds and will take her to oral tomorrow. They reduced a few of her other meds to oral and the rest tomorrow. She may be able to be unhooked tomorrow so we do not have to worry about her lines anymore. She is still eating and drinking well and her blood pressure has been great. She is in a much better mood today and not whiny at all. She is napping right now. She is also off fluid restriction.

I cleaned up most of her room at home last night and disinfected it. I wash all the toys that I could in hot water and threw away the ones I could not wash. There is no way I am taking a chance of her getting sick. I sprayed down the furniture with Anti-bacterial Febreeze and bought the new clorox spray that is safe for kids.

They have already called Coram (Our home nursing agency) to have them come out to show me how to do the IV Infusions. She will be on a ton of meds when we get home. I will list them out when I have them. She will not be able to go out for the first 100 days except to the hospital. Visitors will be kept to a minimum and if you have been around anyone that is sick then you should not be around her. We have game plans for the boys if they get sick and we will see how that plays out. As I learn more I will let you know. Friends of Kids with Cancer are supplying Thanksgiving Dinner tonight at 5pm. Something to look forward too.

They created a journal for PJ. http://www.pjmeyerpeter.blogspot.com/ This will keep you up to date with his progress.

Day +12

Counts are in Counts are in!!!!

WBC 0.9 (WOW!!!)
Hemoglobins 9.9
Platelets 108
ANC 450!!!!
Weight 10.1
Total Cell Diffed 20
Neutrophils 50
Lymphocytes 5
Monocytes 45

Well it seems part of the reason Dani was not feeling well yesterday had to do with her stomach. She had a HUGE explosive diaper yesterday after lunch and seemed much better. She is still a little whiny and very clingy but you can tell she is feeling better than yesterday morning. She is still eating and drinking fine.

P.J. had some difficulties with his lungs yesterday. I am not sure of the details but please continue to keep Dani and P.J. in your prayers!!!!

10:37 am ... They are talking about her coming home Friday or Saturday!!! Keep those prayers coming.

Day +11

WBC - 0.3 (Yeah!!!)

Hemoglobins - 9.9

Platelets - 24 (She is getting some today)

ANC - 228

Weight 10.0 kg

Dani and Daddy had another rough night last night. She has not slept in quite a while. They upped her pain medication again this morning and she is napping right now. As you can see by her numbers she is showing cell growth. I am not getting my hopes up to high but the nurse said tomorrow we should really see them jump.

Nothing new to report on P.J. I will update again later. The picture is the Gabe, Ethan, Colin (My great-nephew), and I at Dave and Buster's yesterday. Everyone had a blast and when we left we went to Target so Ethan could spend his money and he bought a ton of Star Wars stuff.

I went to our friend Kraig's site and Kris choose this as the music and I to be perfectly honest am not a fan of either Whitney Houston or Mariah Carey so probably ignored it when it came out but it just is so right at this moment that it made me tear up (not that that is hard to do right now). I just wanted to share the lyrics and please go to his site http://www.caringbridge.org/il/kraig/ and learn about him and listen to the song.


Many nights we prayed
With no proof anyone could hear
In our hearts a hope for a song
We barely understood
Now we are not afraid
Although we know theres much to fear
We were moving mountains
Long before we knew we could

There can be miracles
When you believe
Though hope is frail
Its hard to kill
Who knows what miracles
You can achieve
When you believe somehow you will
You will when you believe

In this time of fear
When prayer so often proves in vain
Hope seems like the summer bird
Too swiftly flown away
Yet now Im standing here
My hearts so full, I cant explain
Seeking faith and speakin wordsI never thought Id say

There can be miracles
When you believe
Though hope is frail
Its hard to kill

Who knows what miracles
You can achieve
When you believe somehow you will
You will when you believe

They dont always happen when you ask
And its easy to give in to your fears
But when youre blinded by your pain
Cant see the way, get through the rain
A small but still, resilient voice
Says hope is very near

There can be miracles
When you believe
Though hope is frail
Its hard to kill
Who knows what miracles
You can achieve
When you believe somehow you will
Somehow you will
You will when you believe

Day +10

Happy Birthday Brother Ethan! I love you, your sister Dani.

ANC 46
WBC .1
Hemoglobin 9.6
Platletets 46
Cells on the Smear 11
Neutorphils 46%
Lymphocytes 27%
Monocytes 27%

The nursing staff indicated that today would be free from give Dani any platelets or blood. However they are continuing with the pain medication they put her on yesterday with the exception that it is now going to be on a continuous drip instead of an interval basis. Last night was a hard one. Neither of us sleep at all. Up every half hour or so the the nurses doing this and that, and the idiotic pump going off consistently with alarms about occlusions, but there wasnt any visable. Finally I decided to just turn it off. She got her meds this morning as normal and thank God she went to sleep. She has been up twice for a few moments this morning but went right back down after a few minutes of Daddy's shoulder. We will be letting her sleep as long as she wants this morning, then taking our bath and eating a good breakfast.

I am really upset that I am going to miss Ethan's birthday today, but happy that he, Gabe, and Mommy will be having some fun together at Dave and Busters. My poor mom has been fighting sickness this whole time Dani has been in and she was going to try to watch Dani today so all of us could be together, but she is taking a turn for the worse. God love her. She needs to just get some rest.

Sounded like news about PJ was more positive than before so that was great to hear. Please keep PJ in mind today in your prayers, as well as, his family. (Kelli: They took the bandages off of PJ last night to redo them and left them off of his face. My niece, Erin, called me and said he looked just like PJ and they were soooo happy!!! His ears, head, arms, and hands are still covered so they are not sure how bad they are but the plastic surgeon has had nothing but good things to say so far. His big question right now is his lungs and that is our wait and see. We are taking good moments as we get them)

Day +10: A milestone. Seems like we have been here forever on one hand, but it was just yesterday the product was delivered. I cant wait to have her home and be home with her.....this gets harder everyday being in here...just getting tired of it all. Anyways, love you all. Thanks for checking in and there may be more added later depending on the outcome of today's events. Love Daddy.

Day +9

WBC - 0.1
Hemoglobins - 9.9
Platelets - 11
ANC - 90
Weight - 10.0 kg (22.0 lbs)

Well we have a small sign of cells starting to grow today. I am going to try to explain to you how they get the ANC number. The nurses draw blood every morning at 4 am. The results comes back as the above counts plus a second page. The second page is the lab taking a smear of blood and counting up to 100 White Blood Cells. They then take those 100 (or how ever many they found) and give percentages of the types of WBC there are. There are many different types. Lately we have only see Neutrophils. The ANC number is the percent of Neutrophils times the WBC moving the decimal point to the right once. So as examples yesterday they found 2 cells on the smear and both with Neurtophils so that means they were at 100% and her WBC were .1 so if you multiply that you get 10 and then move the decimal point to the right one and you get a 100 so her ANC was 100.

Sorry if I am losing some of you just ignore me. Some people reading are trying to figure out where my numbers come from. Today they found 10 cells on the smear (9 Neutrophils and 1 Monocyte) so her ANC is 90. The good news is that the first cells that will start growing is Monocytes ... so YEAH stuff is happening even though it is a small thing.

Ok.... Anyway .... She received Platelets this morning. She was overall ok when she woke up but it seems like the 4 hours is to long an interval for her pain meds. About an hour in to taking the med she acts like she is really hurting (moaning in her sleep) so they are starting her on an IV pain med today at 10am. They are just going to try to run it 24 hours and then go back to oral. Hopefully this will help. She is still eating and drinking well. She is on one oral antibiotic that is a hit and miss when giving it to her. It is called Cipro and it is really grainy so twice since she has been in she has thrown up right after taking it and last night was the second time. She had just eaten bananas and veggies (baby food) and it all came up. I believe that is why her weight is down again today.

Daddy is coming in soon and I am heading home with the boys. Tomorrow is Ethan's birthday the boys and I are going to Dave and Buster's and meeting up with Grandma Dunn and Aunt Vicki at 1pm. Anyone that would like to come up is more than welcome.

P.J. is the same. They are now saying they will let him come out of the coma when his lungs are better. Keep those prayers going for both Dani and Pie-Eye!!!!

Day +8 Updated

WBC - 0.1

Hemoglobins - 10.1

Platelets - 35

ANC - 100

Weight 10.3 kg

BALD IS BEAUTIFUL!!!!!

The top three pics explain themselves but the bottom one we wanted to say thanks to Diane and Janice in Cincinatti for Dani's wonderful quilt!!! She obviously loves it. Also Shannon, Greg, and Charleigh for her big Elmo balloon. The one pictures you can obviously see how thin her hair was right before we shaved it. She hated being held still but was all smiles when we were done.

My breakdown is over. I do not have labs yet and wont for awhile. They wanted to draw blood from her arm this morning at 4 am but I asked them to put it off till 6am. The tech did not get here till closer to 7am so it will take awhile to get results back on them. Miss Dani is losing clumps of hair now. We will probably end up shaving it today. She is still doing ok. Definitely showing signs of not feeling well. They have her on pain medicine every four hours by mouth right now and its helping but I believe they will go to IV soon. She was wonderful when they drew the blood and patty caked right afterwards.

P.J. (or as I call him Pie-Eye) is going to be in a medically induced coma for 2-3 weeks. He was conscious when he got to the hospital and knew they were going to put him under. He is an officer in the Navy and was supervising some work. From the details I have the person in front of him got the blunt of the explosion and PJ pulled him back and then collapsed. They said he was working on pure adrenline (sp?). He has 2nd degree burns on his hands. And they are saying 3rd degree burns on the right side of his head, face, and neck. They are not sure if those burn are down to the bone or not. He has damaged to his Trachea and soot in his lungs. He is critical for the next 72 hours and will get pneumonia which he is on antibotics for and lots of fluid. He is very swollen. My sister and his dad are there with him now but only can go in for certain amount of time. His sisters are flying out today to see him. Below is a link to the article about the accident. There is not a lot of detail.

http://www.kfmb.com/stories/story.70454.html

Please keep both Dani and PJ in your prayers.

Prayers Needed .... Dani is fine

I just got a call a couple hours ago that my nephew P.J. is in critical condition with burn in a medically induced coma. He is 33 and in the Navy in San Diego. He is more my brother than nephew. They said it is not looking good but if you guys could send some prayers that he recovers. I really don't know how much more I can take here. This is too much to deal with. Please Please Pray for him. His family (Mom, Dad, Sisters, and Brother are flying out tonight and will call me with updates) If things werent going on with Dani I would be there in a heartbeat.

P.J. fight!!!!

Day +7

WBC - 0.2
Hemoglobins - 9.4
Platelets - 14
ANC - 100
Weight - 10.2 kg (22.44 lbs)


It seems like yesterday in some regards that Dani got her transplant and then it seems like a life time ago in others. She did ok overnight. She is definitely in some type of pain. But nothing too severe. She woke up at 3:30 crying (a couple times before that just restless) and we gave her some pain meds then. She slept soundly until 7:00 and I gave her the heart meds with a little formula and managed to get her back to sleep. I do not have labs back yet but they did say she would need platelets today which I kind of figured. The bonus is they said it would not count against her fluid restriction this time either ... YEAH!!! She is both eating and drinking really well. Not to the regard she was before this but she definitely has her appetite back to some degree.

The pictures above are Dani in one of her new nightgowns Grandma Boni bought her.

In case some of you are wondering her eyes are not getting better because Mommy and Daddy do not want to torture her with the eye patches through this process. Although Mommy tried the other day and even with mittens on she managed to get it off. We will work on that when we get home.

Update: 5:07 ... Dani is still doing well. Definitely not as happy as usual and starting to lose a lot of hair.

Day +6

WBC - 0.3
Hemaglobin - 10.7
Platelets - 42
ANC - 225
Weight 10.1 kg

Dani is still doing well. She will probably be getting platelets tomorrow. They are going to prick her arm again today. Dr. Hayashi wants to find out how her line got contaminated so they are drawing blood from both lines and her arm to compare. She has a very slight runny nose that we will keep an eye on (it is running clear). We got another batch of letters this morning!!! They are wonderful to get as are all your comments and prayers.

I will try to update again later....

7:51 pm

Well when drawing blood from her arm I did see a mouth sore. I did not think at the time it was any big deal because she has been really good but tonight she is definitely acting like she is in pain. While sleeping she will just start crying and moaning. They said if it gets too bad they can up the dose of pain medicine or even go to IV form. She is not that bad yet so I am waiting for her to wake up from her nap and we will see how she is then.

Down in room 2, Jordan, is looking like he will make his great escape tomorrow. That is fantastic as he just was admitted Oct 22nd. He has not been here four weeks yet. Please wish him luck and keep him in your thoughts and prayers.

Day +5

10:55 am

WBC - 0.3

Hemoglobin - 11.0

Platelets - 85

ANC - 300

Weight - 10.2 kg (22.44 lbs)

Dani had another good night. I will update labs when I get them. She had to have a regular blood draw today to make sure the levels of her anti rejection meds is accurate. They said the central lines can hold on to some medicines and be giving inacurate readings. She did wonderfully and mostly hated laying on her back with the bright light in her eyes. The time she did let us know her displeasure I got a good look in her mouth to see a back tooth coming in and another one coming in on the bottom and NO signs of mouth sores. YEAH!!!! She is still eating well and did gain a little weight today which is wonderful.

Dani got an amazing amount of letters yesterday and please keep them coming or sign her guestbook on her website. I plan on keeping everything and printing out her guestbook and journal to show her how many people rooted and cared about her when she is older.

3:42 pm

Well Miss Dani lost her lunch a couple hours ago. I personally think it was a combo of myself and one of the helpers. She got a little too much formula (more than she is use to) around 11:30 this morning and then around 1:30 or 2:00 I was going to feed her lunch (Green Beans and Hawiian Delight) and the first mouthful of Green Beans she gagged and it all came up. She has since taken 2 more ounces with no issues and I am trying to get her to nap for a bit.

They have concluded that the anti rejection medicine (Cyclosporine) has contimated her red line. That line is usually only used for drawing blood and getting blood products. This morning her line read 200 and the blood from her arm read 50. So I still need to talk to the nurse about what ramifications occur from her missing 3 doses of it. They will flush the red line with IV fluid to get it cleaned out but continue to draw from both her arm and line until they match up. That is all I have for now.

Day +4

WBC - 0.2
H - 11.5
P - 30
ANC - 200
These counts are still going down....

Dani is still going strong!!! She is starting to lose a little hair, although with as much as she has you can not tell yet. She was in some pain last night and we gave her Oxyicoden (sp?) and that did the trick. She slept from 9:45 pm to 8:00 am this morning. She was in a jolly mood this morning. She is still losing weight but does seem to be getting her appetite back so we are going to push solids so they do not have to intervene with TPN (Tube from nose to stomach). From everything I have heard it is very hard to wean them off of that. She will receive Platelets today and to keep that from interfering with her liquid she is allowed they are going to do one of the antiobotics orally again instead of through the IV.

I do not have her lab counts back yet so I will update that later when I get them along with some new pictures. I am going to start hanging her get well cards in her room so she can see them.

I am not sure how it works but if you go to http://www.stlouischildrens.org/Default.aspx?tabid=104 you can send her a note that we will receive and put up on her window.

9:49pm ... Still all is well here. She is hopefully down for the night and I am not far behind her. She still has high levels of her antirejection meds so they will not give her those again tonight and redo labs tomorrow. She is having some discomfort but not sure if that is just her teeting (2 bottom teeth trying to break through or something more. I will update again tomorrow.

Day +3

WBC - 0.2
H - 11.6
P - 46
ANC - 100

From Mommy: I just got here at 7:30pm and do not have too much to tell. I will see if Dad is going to update later on. Dani is still doing well and eating solid better today than before. She is also more tired which is normal. They had to rerun labs at 4:00pm today because her anti rejection med is high in her system. The night nurse said they would not be giving it to her this evening and rerun the labs in the morning. I am going to start putting her counts on here. Just to explain we will be watching her White Blood Cell Count (WBC), Hemoglobins (H), Platelets (P), and ANC. If the hemoglobins get below 7 or her Platelets get below 30 they will do transfusions on either of those. Her ANC is a calculation and can fluctuate but that is the number that needs to be at 500 or above 3 days in a row and rise each day. I believe her counts are still going down and they do not anticipate us seeing them go upward until 3 weeks from transplant. She is currently losing a little weight because of the fluid restriction. She weighed 22 lbs today (10.0 kg) she has been as high as 23.54 lbs (10.7kg).

I went home yesterday morning and cleaned the house and got laundry caught up. The yard is full of leaves and we do not know when we will get to them since by the time Jason gets home it is dark and he is up here on the weekends. I felt bad when all the neighbors where raking their's today and the wind was blowing ours into their yard. I did get a lot accomplished inside though and felt better after it was all done. I will post more tomorrow. I hope you all had a good weekend.

Day +2

From Mommy:

I stayed with Dani last night and she is still doing well. She does not have much of an appetite which is good because she is only allowed 8 ounces of formula a day. She can eat whatever she wants though. That is so her organs during this transition are not overworked. They will slow down getting use to the new donors cells. I am sure that is not the correct medical information but it is the only way I know how to explain it. Daddy is with her today and this evening so I am sure he will update later on.


From Daddy:

In taking over from mommy in the morning, Dani seemed to be doing well. As the day progressed, especially when just waking up, it is becoming apparent that she is feeling the effects of all of this. She seems achey, however, whenever we play or right after she eats its business as usual happy fun time. I will say that Dani is becoming a huge fan of iTunes. Hehe. We downloaded about 30 kids sing along songs the other day and she absolutely loves sitting on my lap listening and dancing to tunes and watching the "visualizer". The visualizer is a series of random pictures and colors, lines and squiggles that play over an over and she watches it like a hawk! She is definitely starting to miss home and being fed up with being here, but we have a little while yet to go. Dani's cell counts continue to fall, she was down to an ANC of just 33 and I expect that number to being half or at zero today. She is at her most vulnerable right now. And she is still handling it like a trooper. Amazing young lady. She has not lost any of her hair yet, and perhaps she wont which would be fine with me. She is only able to have 8 ounces of liquids per day, which most is taken with her oral medications. But she isnt really complaining yet. Our friends down the hall with their daughter that is going through the same thing at the same time as Dani is also on fluid restriction and they tell me she is up in arms about it. Dani has such a sweet disposition....that will come handy later in life too, especially around our house. Hehe. We had a new nurse last night and she was ok, but didnt do a bang up job like the others of keeping Dani asleep while adding medications or taking labs so we were up at 3:30am for a little while.We did have some very special visitors today which was great. Great Grandma Boni, Great Aunt Janet, Second Cousin Justin, and Great Aunt Laura all came up. It was really good to see them and I know they enjoyed seeing baby girl too. I have to thank them for the little gift basket of food and magazines.....daddy needs to feed his fat belly. Hehe. But more over I was so impressed and filled with joy with the cards that Dani's cousins, Jack and Megan's, classmates made for her. They were are all so sweet and touching. We are going to hang all of those up all over the room today. We have already put up the new pictures of Jack and Megan we have on her closet door which over looks her bed. So we have Jack and Megan watching over their baby cousin and I know Dani feels better because of that. Well there will be more to come for Day +3. Love you all.

Day +1

I have to agree with Caitlin's Dad (Another baby girl with Hurler's that got a transplant a week ago in Cincinnati) it is wonderful to be on the plus side.

7:22 am Dani did wonderfully through the night. Her vitals are stable. She needed nothing extra to help her and she pretty much slept all night. She is a little pink this morning but Yvonne (the nurse practioner) said that she might be because they gave her a little more donor cells then she needed. She took her morning meds no problem and 3 ounces of formula. She has lost most of her appetite since the throwing up period Monday night. Thank you guys for all your thoughts and prayers!!!! Dani is a fighter and a trooper and I will post pics (I promise) and more updates later on today.

1:45 pm Dani is still doing wonderfully!!! She is in a good mood and ate some greenbeans and peaches from Grandma. She was chuckling as hard as we have heard her because Grandma was trying to sneak greenbeans in around the peaches and making funny faces at her. Below is a video from last night of her getting the transplant.

http://s5.photobucket.com/albums/y199/rdhdtrue/?action=view&current=Pictures110906025.flv

Day 0

Today is the day!!!! Thanks everyone for your well wishes. They said she will have her transplant around 8 tonight. I will update again after that. Dani is in a wonderful mood today!!! Looking really good and keeping everything down so far.

Update again later

8:06 pm The product is in the building and they are going to split it in half and freeze part of it. They are now saying 8:30 or 9:00 pm .... to be continued

10:27pm Dani is 3/4 of a way through her tranplant and doing wonderfully. She is now sleeping although I anticipate it will not last long. They will be taking vitals every 15 minutes for the first hour and every half hour for the next 2 hours and then every hour for the next six .... which equals long sleepless night. Thanks for everyones prayer and please keep them coming!!! I will post pictures tomorrow.

Day -1

Well today started out rough. I went home last night and Jason stayed with Dani. I woke up with a runny nose. So I went ahead and went in and originally they said I could not come back for 48 hours and I had to get on antibotics. I was not taking that well. Anyway I went to the doctor and he prescribed an antibotic and I talked to the nurse practioner through our transplant coordinator. The game plan is I am taking both benadryl and the antibotic, getting rest, drinking fluids and if I am the same or better tomorrow I can go to the hospital. I am not thinking about the alternative.

Dani has done pretty well today. She threw up her heart medications this morning but we let her sleep for a bit and gave them to her again and she (as far as I have heard) have kept everything else down. My mom and niece are visiting with her today and giving Jason a break. Jason said she got a huge smile when she saw Grandma Dunn and Trish walk in.

Tomorrow is the big day!!! I am so ready to get this all behind us. Wish her luck and pray hard please!!!!

Day -2

Well I guess the rocky part starts. Since last night at 8:30 Dani has not kept anything down. They are going to put her on a steroid (Dexamethasone) to help with the nausea and they are changing two of her meds to IV because she has not kept any of her heart meds nor the new ones down that have been oral. If the steroid does not work they will move more meds to IV so that she is at least getting them.

The lack of communication with the doctors and nurses aggravated me a bit last night. They are watching her Ins and Outs to make sure she is not retaining fluid because of her heart and the cardiologist said if they get to a positive 500 ml (I think) that she should get extra lasix to get rid of the fluid. Well since she has been throwing everything she gets in her up obviously (or I would think it was) she is not going to pee as much as she should. But the nurse last night without telling me (I was sleeping) gave her an extra dose of lasix because her ins and outs where off. When she told me I was so bothered by it I could not go back to sleep (that was around 2 30 this morning and we did not go to bed till Midnight). I talk to Dani's pediatrician this morning and she talked to the nurses and I will also mention something to Dr. Hayashi (BMT Dr). Some common sense needs to be used to go along with doctor's orders. Not a big deal but I do not want her any more uncomfortable then she already is.

I will update again in a bit....

Day -3

Dani is 11 months today!!!

Well today is the last day of chemo and was a more heavy duty called Melphalan. She did pretty well with it. The only side effect, as is per Dani, no naps ... lovely. They even gave her something for naseau that had a side effect of making her sleepy, but that did not work. It might of mellowed her out a little bit. She is right now playing with her OT (Occupational Therapist) on her mat. Overall it has been a pretty good day. She got a visit from Grandma Boni today and had fun playing with her and of course showing her all the new tricks she has learned. She is now is shaking her head No and practicing her Bs.

We just got word that her transplant will be around 8 pm Thursday night. The donor cells will be at the airport at 5:45 and they will have to run them through the lab and then to Dani. Luckily the donor is the same blood type so the lab does not have to do that much with it. Thank you all for your prayers and wonderful words.

Day -4

From Daddy. The nurses decided at 6am they wanted to weight her, naked. So we had to wake her up, undress her, convience her to sit still, and then get her dressed again. Which see did with just a little fussing. If someone woke me up like that, I believe I would release my inner bear, but once again this kid shows her resiliency and sweet demeanor. She is unbelievable. She did fall right back to sleep so I decided to clean up the room a little bit, put away the sleeping materials and get her breakfast semi-ready, oh yeah and type this up too. Looking forward to another good day, God willing. I believe Kelli is going to sleep in, which is great to hear, and then I think she said she would be up early afternoon after petering around the house for a little. More to come.

Back to Mom. Dani did pretty well this afternoon. She got her bath and played on her mat for awhile with her toys. After nap she ate and took all her meds and then we went to play some more on her mat. Ummmm she does not seem to like boundaries ... imagine that. So when I told her she could not go off the mat she had a tizzy (picture above) she got over it when she discovered the tags on the pillows. She seems like she is ready for bed now but since it is only 8:00 we are gonna keep hacking away until at least 9:30.

Day -5

From Daddy. Dani did very good again today. Between really good restful naps, we played and laughed. Took many pictures. There were a few instances of small issues like leaky diapers, dropped medications, etc but all in all things went well. She is still eating great and often. I absolutely love watching her sleep as much as I do when she is awake. She makes the cutest noises all the time and just so sweet. I cant express in words how she makes me feel. Precious. All of the staff nurses are great, helpful, and respectful. Thank God for people like them. Although I am still learning at the tender young age of 32, at least until the 16th when I catch up to Kelli in age..hehehehe, I dont know if I will ever possess the patience these people bring to the table day in and day out. And as much as all of this is daunting, I feel that I am meant to be here. Right here, right now. I cant say whether or not the man upstairs has a plan or not, but I am where I am supposed to be. I feel it in my bones. Perhaps after some time and distance once Dani is home, I will understand why. I am hoping Kelli is getting some well deserved rest today and some quality time with Gabe and Ethan. Although rest doesn't come to mind when thinking about the boys, they are on the go 24/7 and I wish I had even an ounce of their energy. Love em. Hehe. Dani did not want to go to sleep this evening for anything. Finally around midnight she decided to give in to my will, hehe, only to be awakened less than an hour later for meds and vitals. She did go right back to sleep though and laying my head down on the pillow was all it took.

Day -6

We have not started the chemo yet but I thought I would post pictures of Dani's new bed. Jason said she slept really well last night and she is right now napping in it. It is much bigger than her old one.

Also here is a link to a video of her playing in it.

http://s5.photobucket.com/albums/y199/rdhdtrue/?action=view&current=Pictures103106048.flv

She did very well today. Maybe had a headache which Tylenol helped with. Still continues to sleep well in her new bed. Thanks for checking in.

Day -7

Today was a good day. Dani did well. She did not get a fever and was pretty happy. She actually took a decent nap this afternoon and we took a bath after that. She was not to happy with me until she was dried off and dressed and then she was her golly self. She got an upgrade in her bed after I left. Daddy said it was really nice, much softer and bigger then the old bed. I will take a picture tomorrow.

Day -8

Well we are in the room and everything is wiped down ... I not only disinfected all the toys but wiped down all the drawers, shelfs, and dressers. No point taking any unnecessary risk. She just got her anti nausea medicine and we are waiting on the chemo. They said it would only take a half hour to do and we actually should not see any negative effects for a few days (possibly a week). We will have to clean her mouth with special medicine 4 times a day to hopefully prevent mouth sores. It is going to be interesting keeping her entertained and contained all at the same time. She is just taking her first nap now and it is almost 2 pm. I will try to log back in tonight and update you again.

Update: It is 9pm and she is just getting to sleep. She really hates this bed and all the interruptions. She spike a little fever but other than that I think she is doing ok. It is hard to tell because of the lack of sleep and what exactly is making her crabby. Praying she settles in and figures out how to nap through all of this.

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!!!!!