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.