Day +202 Our Agenda

I hope everyone enjoyed their Memorial Day weekend (here in the US :) ). We did for the most part. Dani and I laid low and spent the weekend at home. She finally cut two molars and is working on a third. She had a fever overnight Sunday night into Monday. I was hoping it was just the teething and I think it was. You could tell she did not feel good though. Poor baby. She has created some new words, but we are not sure what they mean. But at least she is trying. I made her watch racing all day Sunday (instead of dancing to music). I am hoping to convert her early. hehehe

Jason and the boys went camping overnight Sunday into Monday. They fished and caught tabpoles and such. They love going and sitting around the campfire. Ethan was attacked by every bug known to man so he enjoyed himself immensely. We BBQed on Monday and just took it easy. It was fun. Jason and I have really been working on the house inside and out. I will post pictures of all the flowers we have planted and the bar downstairs that he has remodeled soon.

I did not mention it before but we went to "The Angelman Syndrome" walk-a-thon a couple of weeks ago. Website http://www.angelman.org/angel/ . Our really good friends Rick and Suzanne's oldest baby boy has this. It was an awesome event. It was held at Jefferson Barracks State Park and we all enjoyed ourselves. Us five went and then a friend from work, Jenny and her son Jack met us there. The boys and Jack had a blast following the trial and enjoying each other. We met up with a few friends we had not seen in awhile (Trevor and his new wife Kim) and then Ricky's parents. We will definitely be going from now on.


Well today we were going to go to the Zoo but it was rained out. Tomorrow Dani is scheduled for an MRI (under anesthesia) and then Friday we have the IVIG (Immune Boost) infusions and the eye doctor appointment. I will let you know how it goes.


Vibeke is getting ready to start infusions and it is very exciting that she finally got approval. Thanks for all the love and thoughts.


Erin ..... I will try the teddy grahams next but I am really working on veggies right now. I did buy baby goldfish but have not opened them yet. She is still more picky then I am used to. The boys use to just shovel everything in. She is more stubborn than Gabe which amazes me.

She is definitely a smart one and knows what we are talking about and the schedule for the day. She tells me what is next in the morning when getting ready. She will tell me when it is time to brush her teeth and when it is time to clean her ears. She now will not keep socks on her feet.

Please do not forget the Golf Tournament on Saturday June 23rd. It should be a lot of fun and there is always prizes to win.

Day +197

WBC 5.1
Hemoglobins 14
Platelets 382
ANC 3315
Retic 5.3

Well this morning Dani decided to worry us because she had a rash under her chin. This afternoon it is better so we will keep an eye on it. Her numbers are good. We are waiting for her Retic number to see about weaning her steriods so more.

She is now on a sippy cup and is tap dancing. She loves her dancing. I will try to take a video of it. She is still not the happiest about table food. She is starting to eat Honey Nut cheerios.

The boys are out of school and are very happy about it. Grandma Dunn is getting her other hand done on the 6th of June so more happy thoughts her way. PJ (my nephew that was in the accident at the end of last year) is back on a Naval Carrier and outside of Iran. Send positive thoughts his way also to come home safely. He is on the USS Nimitz (sp?).

I hope everyone enjoys their long holiday weekend (US bound anyway) and all have a nice weekend!!!!! Send a special prayer that Vibeke in Norway will be started on Enzyme Replacement Therapy soon. She has been fighting so hard to get it and she is getting some positive comments back now.

http://www.caringbridge.org/europe/vibeke/

Updating:

Yvonne, Dani's nurse practioner, called back and she is going to get IVIG (Immune System Booster) next Friday. It is a four hour infusion so I hope we make our 1:00 appointment with the eye doctor to talk about the lens implant. They lowered her steriods from 3.0 daily to 2.8 ml daily. The rash we will keep an eye on and see if it gets any worse.

Day +190

WBC 6.8
Hemoglobins 12.8
Platelets 289
ANC 5644
Weight 28 lbs 14 ozs
Retic - 5.4

It was a good visit. All the numbers are going in the right direction. We are back to going to clinc every two weeks ... very exciting!!! They lowered her steriod dose. We will go to a local Quest Lab next week just to get numbers. They were talking earlier about starting IVIG (which boost the immune system) but that is not definite and I think the numbers might be good enough this week not to have too.

I hope everyone had a wonderful mother's day. We laid low and relaxed the entire day. We are getting a lot done around the house which is nice and so ready for the boys to be out of school. The next clinic visit is the same day as the prep session for Dani's eye surgery. It will be an interesting day.

Dani was tap dancing in clinic today and it was too cute. She is figuring out a lot around the house. Which means we have stepped up on child safety gadgets. She wants to go outside all the time now and we are still scared. But she has been out and not sure about her bare feet in the grass. Jason bought her a blow up pool so I will take pictures when she (and her brothers) get in.

Mom did well with her surgery and her next one is scheduled for June 6th. Keep the good thoughts rolling!!!

Do not forget about the golf tournament June 23rd. Jason is playing and I will be a beer girl. It should be a lot of fun. Shoot me an email for details rdhdtrue@yahoo.com

Day +183 Last Infusion ... We hope

WBC 13.8
Hemoglobins 11.5
Platelets 352
ANC 12,834
Weight 28 lbs 4 ozs
Retic 9.32

Dani started the day of in a mood. She was not happy with anything on the drive into the hospital. I warned them when we got there and they pushed things along. It could of be worst or better but we were very happy it is hopefully the last infusion forever. Her counts are pretty good. Her ANC is high because her immune systems has been suppressed from these infusions and the calculation they use to get this number is errored (sp?).

She has a clear runny nose that we are hoping does not get any worse. She is kind of back to ground zero with her immune system so we have to continue to be careful with cleanliness and such. We have not really relaxed in that department so no big deal.

She loves her music and her gerber graduate crackers. I have a video I will download her in a bit of her dancing. She will grab the remote for the TV or just stand in front of any TV and start bobbing up and down to dance. She loves watching videos.

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

May 15th

This is MPS Awareness Day around the world. NASDAQ will ring the opening bell in acknowledgment of it. I have been trying to get work to do a casual day for it but I think they are tired of us. Here is an independpent movie about MPS II.

http://www.jonathanformica.com/portfolio/courage.php

This is an article on a wonderful group of girls and their Mom and Dad's daily struggle.

http://www.mycommunity.com/town/Teaneck/Details_story/Three_beautiful_girls%2C_one_deadly_disease/view.php?action=Detail&type=story&sub_id=18705&area=&category=1

Please consider being a bone marrow donor. It is free to apply online until May 21st. Go to http://www.marrow.org to find out more information.

Day +180 - 6 Months Post Transplant

WBC 8.6
Hgb 10.7
Platelets 403
ANC 7396
Retic 14.44 (Normal .50 - 1.50)
Weight 28lbs 14 ozs (But it was a new nurse and she let her keep her clothes and diaper on)


Sunday was the big day!!!! Dani is 6 months post transplant. We did go to clinic yesterday (Monday) to make up for missing Friday. As you can see the numbers slipped a little but are still ok. The Retic is showing, because it is high, that she is still chewing up Red Blood Cells. So we want to see that come down. She will get her last infusion this Friday and hopefully her body will balance out. She is now being weaned off of the steriods. She went from 7ml to 4ml in the last week. Hopefully she will lose some weight so she can wear some of her new outfits she just got. She is a buddha baby right now.

I received an email from another Mom of a Hurler's patient (which I need to call ;) ) and her daughter is 10 years post transplant. She has Cardiomyothopy and had this particular Anemia ... amazing how similar they are. She said that she is free of the Anemia now but it took years to wean her off meds. So that kind of puts this in perspective. She also said she is a normal and social 10 year old with no orthopedic issues. I can not wait to talk to her more.

Last but not least to mention is the "Thanks Mom" Marrow Donor Drive through the National Marrow Donor Program is going on now till May 21st. That means that it is free to become a donor right now (even online!!!! ). If you have not done this yet please consider it and I will post the link below. Save a life!!!!

http://www.marrow.org/NEWS/Events/Thanks_Mom/index.html

Day +176

WBC 9.6

Platelets 509

Hemoglobins 12.2

ANC 6144

We did not go to clinic today. I have been sick all week and did not want to spread my germs nor sit with Dani in a small room to chance getting her sick. Dr. Hayashi is not there this week so they talked to Dr. Shenoy and she said we could wait till next Friday for her next infusion. I asked Dani's nurse Carrie to follow up with Dr. Hayashi on Monday to make sure that was ok. We went to Quest this morning for a blood draw to make sure her hemoglobins were ok and as you can tell all her numbers are really good!!!!

She has been doing well. The pictures above were taken by Grandma Dunn when she was watching Dani on Thursday. It was labeled Dani's new trick. This was the first time she climbed up. Her hips do not seem to be holding her back at all. Grandma Dunn gets her surgery next Wednesday so everyone keep her in your thoughts that all goes well!!!

Day +173 - 2nd Opinion

2nd Opinion on her vision

I LOVED this doctor. He knew we were coming for a second opinion. He took a lot of time explaining things and gave us as much information as he had.

To catch everyone up. Dani is VERY near-sighted. She also hates her glasses and patching. I mean she will keep her glasses on for an hour or so because she knows she will be in trouble if she does not but she still hates them. We thought that if the glasses where really helping her she would get use to them. That has not been the issue. She was diagnosised in July of last year -14 in one eye and -17 in the other. That doctor (Dr. Tychsen) was very abrupt and did not seem like a people person (I know when you get to a specialist that might be the case). He wants to do a lens implant at the same time as the muscle correction for her crossed eye. When I googled that or talked to our insurance I could not find out much information. So I wanted a second opinion to make sure the direction he wanted to go was the right one.

Dr. Goodrich actually said he has referred some patients to Dr. Tychsen. Dr. Tychsen and another doctor (hospital) in Texas are the only ones doing lens implants. So he did not have a lot of information on the lens implant on children himself. He did try to figure out her refraction while we were in the clinic and he came close enough to Dr. Tychsen's that he had no issues with it. He said a few items he would not be able to determine unless he put Dani under like Dr. Tychsen did.

He also told us that this is a step above an experimental procedure. He said maybe 10-100 children nationwide have had this done. He said if we asked the clinic we can get the info of success rate and complications. He was not sure insurance would cover it. But he said it was appropriate for Dr. Tychsen to want to do this.

He mentioned another procedure which would be put a corrective lens on top of her pupil and get her to an almost zero for now. The downfall on that is cataracts getting worse (she already has corneal clouding) and glaucoma. But that would be later on down the line. Also her vision could continue to get worse so she would still need glasses later on down the road.

It just seems like Jason and I have to keep making these HUGE decisions and it will impact her life to a huge degree. I am selfish enough to want things to get easier at some point. It just does not seem to be in the cards right now. We will talk to the main nurse the first friday in June and make a decision then.