We can not say how much fun it was to visit with everyone in San Diego. We stalked Guy's show "Diners, Drive-Ins, and Dives" with PJ and it was a blast. Then we got a tour of the military base and saw subs, carriers, and lots of different aircraft. Can not even tell you how much fun all of us had with the first day. Pie Eye you are awesome! It would take a full page to fill in the rest and maybe I will as the time goes on (don't hold your breath). We visited Sea World, Disneyland (for about ummmmm an hour, the most expensive hour of our existence) and Hollywood. The boys got a tour of an aircraft carrier. They LOVED it. The condo was beautiful and I think we had the most enjoyable time there. We met up with Matthew, Michelle, Brittney, Lynette, Larry, and Romel. Did I mention it was sooo much fun? I just keep thinking back and smiling.

... wish I was there right now. We have done continual IVIG infusions so we just had another one last week Daycare called today and Miss Dani had bleeding out her ear. Yeah ... So I took her to the ped. She is acting fine and no fever so we will see an ENT soon. I already have a call in to get us bumped up to the ENT at Children's Hospital. The ped says she has an ear infection in one ear and fluid in the other. They were suppose to call in an antibiotic for pickup but I had to call the emergency line because ummm someone forgot (six hours later). They will be getting a call in the morning.

Overall I can not complain. Bumps in the road are going to happen. San Diego and all the family ( Romel, Lynette, and Larry your included) help make the world a better place! Dumb Blogger will only let me download sooo many pictures.

Enjoy your summer! I can not believe it is almost August.

Vacation and More

Dad

A lot has occurred in the last few weeks. Dani had to have another infusion and on the same day my Dad passed away.

For those that do not know my Dad has been dealing with health issue since my high school graduation (1991) I just dated myself didn't I?

My Dad was an amazing man. He was filled with jokes and laughter. He was easy going, easy to talk to, and would help anyone. He was so knowledgable and was the go to man for help. Any household issue you could ask him and he would give you the solution or point you in the right direction. He helped his family and friends (his kids friends too) any way he could. He LOVED his grandkids.

He had a stroke in 1999 and was not himself after that although still had his moments. I talked to him a few different times about household issues and he would tell me exactly the problem. I am very sadden that Ethan and Dani never knew him as he was. Gabe can remember him somewhat but most of the other Grandkids, I believe, realize and appreciate who he was before his ailments.

He was my best friend and helped Mom and I make it through her menopause (sorry Mom) and my pre teen and teenage years. They coincided ... he had it rough. I can not say enough to show how wonderful he was.

He will be greatly missed and very appreciated. I will update another day on our trip to San Diego which occurred during this time.

Sorry it has been so long

I have been told by many this past week that I am lacking in my updates. Sorry to you all. I was waiting for new photos and also there is alot going on. I am sure that is true with the majority. Dani is still having to get infusions. She has had one each month so far this year. I need to get her blood work done this month to see if she will need one again but we are assuming she will. Missy Miss has had double ear infections the past week and a little bout of pneumonia. She is doing some breathing treatments.

She still loves daycare and her early childhood classes. Ms Macy and Ms Betsy are her favorite. She loves painting and reading. Oh and bossing her brothers around.

Great Grandma Boni past away this last week and we will miss her. She was a wonderful person and so supportive of Dani and all of us. She was always there for Missy Miss and sent so much love through all the trial. I can see how Dani gets her stubborness. There is way to much irish on both sides.

Dani started Early Childhood Classes

Sorry it has been so long since I last posted. I am sure everyone understand how hectic the holidays are. So what all has been going on since our last update. Dani did get her infusion last month and it was a nightmare. There were lots of problems with her IV and at one point she was almost hysterical because she did not want them to touch her anymore. She lost her first IV so they had to poke both arms. The nurse actually had to stand over her the last thirty minutes and watch over the pump. It was a VERY long day but she did get the full infusion. Luckily Jason had gone with us so he was a big help. Oh and on that same day we had to put down our pug Belle. We put down our older dog Andi two months prior. Andi was somewhat expected and had lived a full life but Belle was a shock. We did get a new puppy Doc (Lab/Beagle Mix) right after Christmas and he has been fun.

Christmas was good. The kids of course are spoiled and Dani has sooo many Princesses it is amazing. She is so into all the Disney Princesses and Barbie. The boys got their fill of PSP and XBox games. They also just started getting interested in Legos so they got quite a few sets of those also.

Dani started her Early Childhood Development classes this week. She rides the school bus to the school and back to the daycare everyday but Friday. Monday was a bit of a shock for her. I met her at the school and she was definitely stunned by the entire bus and new school event. She was fine by the time I left to go back to work and LOVED the paints (that is the picture above) they had in the classroom. Her teacher Ms. Betsy said she did really well the first day and the daycare said she did fine on Tuesday so hopefully she will adjust well to the new routine.

I will take her for another round of blood test this week sometime. Hopefully she will not need an infusion. I can not think of anything else going on. I hope everyone enjoyed their holiday and are keeping warm.

Good and Bad News

IgA 12
IgG 319 (Normal 345-1213)
IgM 56

Dani's number were not the best. She will get a transfusion on Thursday. We went into her IEP meeting today. She is going to get 4 days (3 hours each day) of developmental help. I am sooo excited about it. They also will provide transportation from daycare to the school. Betsy (her main teacher) seems really nice and good with kids. The whole staff (Linda, Nancy, Joanne, and Roxanne) was wonderful and seems really interested in keeping Missy Miss up to par. I am VERY excited to get everything started although I will really miss Stacy, Kathy, and Stephanie at First Steps. I fully expect us to keep in touch.

Just to note for those Mom's that are reading this with MPS kids or for future references. If you saw Dani you would not know she has anything at all wrong with her. She definitely has some issues but for a person to look at her you would not know it. We want to stay on top of everything to make sure she is the best she can be. Our goal is to make her life as normal as possible (as is many parents goal) and we will stop at nothing to get there.

For those non MPS families her diagnosis says she will slow down in all regards after the age of three. We are going to fight this as much as we can and hope that she is the best person she can be. And hope that the medical advances that have occurred the last ten to twenty years will help with that.

I just want to say to Erica who is a WONDERFUL role model and an adult Hurler's friend that does so much for everyone and such an inspiration. You ARE wonderful and I can not thank you enough for your support and help with research, support, and leadership.

I broke down briefly (no need for a tissue :) ) today talking about the future and where/what we are aiming for. Jason and I don't know and don't talk about it, although ironically today he mentioned something about that very subject in a conversation (first time ever). It is just always there in the back of your mind. We are very positive with her and generally it is one day at a time but there are certain instances that you have to think about the future and this was one of them.

Happy 3rd Birthday Missy Miss!!!

9.9 WBC
13.8 HG

240 Platelets

4158 ANC

I thought for old times sake I would put her counts up. We are still waiting to here back on her IGG results so we still do not know if she will need another IVIG infusion or not.

We all survived Chuck E Cheese on Sunday. Dani was not sure whether she liked Chuck E or not. She gave him a high five and followed him during the Birthday parade but that was about it. Otherwise she had a blast as did everyone I believe. She loves the slide they have there and of course the rides. She received quite a few Barbies and princesses.

We did do Dani's assessment through the school district for services and she qualified. She is going to be receiving Speech, Physical, and Developmental Therapy. We are going to set up her IEP on Friday.

We hope you all have a very wonderful holiday season!!!

Cardiology

Dani's appointment went well. Her ejection fraction is between 60-63 (better then last time) and they only increased one med this time. They tried to do a 3D echo but she was done after the regular so we did not get that done nor the EKG.

Her mitral valves are a bit worse but he does not seem to mind. She is back to needing a antibiotic before a dentist appointment.

Baby steps is what we do as many of you know. She is sooooo enjoyable and has such a good time with her brothers. I am hoping Santa brings me a new digital camera for Christmas (Hint Hint Jason ... :) ) Mine has been gone since June. I want some new videos of their cute interactions.

Happy 2 Year Anniversary

Today is Dani's 2 year post transplant. We can not believe it is two years past. I wanted to post these pics. They are Dani and her Cousin Kendyl on Halloween. Then a few are at my sister's housewarming and the kids LOVED the horseback riding (Thanks Jerry). The group one is some of the girls at our family reunion.

She has some appointments coming up. This Tuesday she goes to the cardiologist to see how her heart function is. Then the next week she gets tested by the Ferguson/Florissant school district to see if she qualifies for services and gets another round of immunizations. I will update you as I get results.

Happy Halloween

Everything is fine here. Her infusion last week went very well. They said next month we will just check her blood work and go from there so hopefully we will not need anymore. She also goes to the Cardiologist next month. I can not believe we are coming up on 2 years post transplant. Time has flown. I am not sure what all she will need to get done as far as testing goes. I know they want her to have a hearing test and eye test soon. I might call and get that scheduled at the same time.

Dani is loving daycare now. It seems like all the kids get along pretty well. She really loves Ms. Macy (her teacher). They are having a pajama party for Halloween. I am sure she will have a blast especially since they are ordering Pizza (her favorite).

She did get assessed last week for special services through the school district. They seemed to doubt she would qualify for much of anything. It is a bit frustrating because I want to keep her on track for school and they are only looking at current abilities. Anyway that was just an initial visit. She will be evaluated fully in November.

The Kids Pics

We got their pictures done on Saturday and they turned out really well. General update on Dani is she is holding her own. You can still tell she is not up to par with feeling good but really only when she is tired and bed time. I don't remember if I posted this last time but her next infusion is Oct 20th. She is also getting evaluated tomorrow for special services through the school district. Hopefully they take into consideration that with Hurler's you do not see a regression until after age three and her services through first steps stop at three. We will see how this goes.

Here they are ...

2nd Infusion

Hi All

Missy Miss had her second IVIG infusion. Today was a bit more stressful then last time but it could of been worse. All her numbers were good.

The clinic rearranged nurses today so we did not have Kari. I am paticular enough to enjoy having the same nurse each time. We had Cheryl then Kari and now Angie. I might have to say something next time if it is another different nurse. It is one thing if you are an adult and dealing with this but with a toddler/baby (which she is to us) familiarity is the key. I give HUGE thanks to Kari because she came over at least four times so Dani had a friend there. I have no issues with Angie ... she was good but not familiar.

Dani just woke up and is very aggravated. It gets harder the older she is. I am hoping it does not make her resentful toward us for putting her through this. We have not had that issue up to this point.

First Infusion Complete

I was waiting to get pics to post but I have not made it to Walgreens yet. Dani had her first of at least three infusions two Fridays ago. She did well and it took about 2 1/2 hours. We always know how the day is going to go on how quickly we can get the IV going. Fortunately they got it on the first try this time. She still had an off day last Friday (droppy at daycare) but when she got home she took a bath (she LOVES them) and seemed fine the rest of the night. They will recheck numbers after the third infusion to see if we need to keep going. Her next appointment is Sept 8th. I hope everyone enjoys their long weekend!!!

A small step back

Hi All,

Above are some pictures that Dani's donor sent from our visit. She is getting sooo big. We have had a little set back. She started daycare part time in March. She has had mutiple ear infections, multiple pink eye, and Hands, Foot, and Mouth Disease. Also if she gets bit by a bug it seems to get infected easily. So after this last bout of double ear infections, both eyes having pink eye, three bacterial infections from bug bites, and a nail on each hand peeling from the bottom up, Jason said call HemOnc and asked them. So we called and her IgG (part of her immune system) was low in November (187 and the norm is 500-1000). I am not sure still at this point why it was not rechecked this spring but we ran blood work yesterday and her IgG is at 54. So we are going to start a monthly infusion for the next six months.

Keep her in your thoughts and hope this is just a minor stumbling block.