Donate Now for the Sponsor a Child for a Cure Run!

The MPS Society has put together a run in New York that all the families can participate in simply by donating as little as $5.00 and as much as you would like. It is tax deductible. The runner that is selected will have a shirt with Dani's picture on it. Please consider donating to raise money for research and a better life for our MPS kids. More info below

For those that wish to donate via paypal can do so below!

School Has Begun

Dani has recovered nicely from her hip reconstruction surgery.  We go for a follow up on Sept 24th to make sure the bone grafts are still looking good.  She has woke up upset the last three nights.  This morning she said her arms, legs, head, and belly hurt.  Once she got up she was acting ok though.  I'll be keeping an eye on that.

She is getting another IVIG infusion tomorrow with Daddy.  I knew we were pushing it hoping to skip two months in a row.  Oh well ... we will keep trying.

She has a cardiology appt in October.  We might be discussing heart surgery if her valves are leaking more.  There was quite a jump with our February visit from the previous one.

As many of you know she started Kindergarten a few weeks ago.  I have been very impressed with the school district's handling of this process.  She is in a regular classroom and has different therapist/teachers/aides helping her through out the day/week when needed through what they have labeled as "The Special School District".  SSD was who we went through for her two years of preschool.  The IEP meeting went wonderfully and thanks to the boys I know the principal/staff quite well. 

Gabe is now in High School and doing really well and likes it.  He did his first powerpoint presentation this week and everyone was impressed.  Ethan started Middle School and loves how big the library is.  It didn't open right away and he was very impatient waiting to see all of it.

Pictures ... last few months

Missy Miss is doing well.  We just found out yesterday from the orthopedic doctor's assistant that she can walk on her own if she wants.  We are going to gradually introduce her to school the next two days and then hopefully she will be back to full schedule at daycare next week.  Stairs and the pebbled playground are the obstacles we are hesitant about.

She is also now registered for Kindergarten.  We now officially have a elementary schooler, middle schooler, and high schooler.  I would say next year will be interesting but Gabe is already asking to take gym in summer school so he does not have to next year.  So it begins.....

She had an infusion two weeks ago and did really well. 

The pictures above are of Dani at preschool.  She missed her friends and they missed her also.  The second to last picture is her with Grandmas on Monday.  The last picture is from yesterday staying home with Dad.

Updates - Date for cast to come off

All is well with Missy Miss.  She got wonderful news last Friday that her cast will be removed next Tuesday April 26th.  We are all very excited.  She has not taken pain medicine in four days and is down to an antibiotic for her ears and her heart medicine.  Her classmates and teachers at both daycare and preschool have been amazing.  She has had projects, cards, and presents sent home all through out.  We could not ask for better. 

They boys are doing good.  Gabe had State testing all week but they are both off tomorrow and happy for a three day weekend. 

The puppy above is the new addition to our household.  He is a rescue Pekinese named Max.  He seems to be fitting in well. 

One Day at a Time

"One Day At A Time" pops in my head mutliple times a day. 

Missy Miss is doing really well and we go for both Orthopedic and Opthamology appts on Friday so I will have more updates then.

She is now on additional antiobiotics because she had issues with her ears last weekend and she also pulled off her Steri-Strips on her hips but we saw the peditrician on Monday and her incisions look great.  Her peditrician also suggested getting a handicap sign (although Grandmas and I were already talking about it) so I picked that up today.

We started out this morning rough with Dani complaining about her ears.  She is already on antibiotics which should take care of ear infections.  Grandma Boni came over to help with washing her hair and then we visited Ms Betsy and Mr Matt (Preschool).  Our neighbor Sally brought a pink Easter Bunny over for Missy Miss.  Then we received a cookie basket (with balloons) from my work.  Thanks to all! 

New Addition - Day out for Missy Miss

There was quite a bit going on yesterday.  I started spring cleaning (cleaning carpets).  Dani was able to visit with her classmates for a bit.  We plan to go back tomorrow to see Mr. Matt (Occupational Therapist). 

We also welcomed a new addition to the household.  Our next door neighbor (Sally) ended up naming him Maximilian (Max).  Love it! 

Missy Miss goes back on the 15th for an Ortho follow up and I scheduled an eye exam to get her new glasses that day also. 

2nd Day home

We were chillin yesterday and trying to get the house in order.  We also were possibly rooting for  Dale Jr.... just sayin. 

Today both Grandmas came over and Aunt Vicki.  Dani was in a pretty good mood and received more presents ... imagine lol.  She colored and played with her new barbies.  She also received a new dress for her and a matching one for her baby doll.  She loved it!  Grandma Boni helped me wash her hair at the kitchen sink.  She wants to go visit her school friends so we might be suprising them this week. 

She goes back to see her Ortho doctor on the 15th.  My niece Michelle and Brittney sent Dani some princess stickers and all of us a card.  Dani LOVED them and I started missing the beach (they live in San Diego).

Day 5 - Hospital (Hip Surgery)

Missy Miss goes to the OR around 7:30 this morning to remove the piece of tubing from the drain that did not come out and possibly to be recast (it is amazing how many different stories we get). - 7:00 am

Missy Miss is back in her room.  They ended up make a square on her leg and cutting an small incision to extract the tubing.  They sealed it with fiberglass and then put pink stipes on her red cast so now she looks like a candy cane.  She was not the happiest in recovery or when she first got in her room but she is sleeping now.  The doctor took another full X-Ray of her hips while she was in the OR and said her hips look great! - 10:30 am

We are home!!!   I have ran errands and picked up meds.  Missy Miss is sleeping on the couch and the boys have helped with picking up the house and putting away everything from the hospital and from my errand run.  Chillin for now and getting ready for the recovery process.  Below is the picture of Dani in her new wheel chair and her redesigned cast. 

Day 4 - Hospital (Hip Surgery) Happy April Fool's Day

Last night was pretty good.  The machines woke me up more then Missy Miss she slept fairly well.  We had a little scare around 12:30 am.  Two machines were going off at the same time and it was time for her medicine.  She had been sleeping and possibly dreaming and when she "woke" up she had her arm frailing and crying.  It almost looked like a seizure but she could of been caught up in the dream.  She kept saying "I can't do this".  She came out of it fine and took her medicine and went back to sleep. 

We just did another blood draw (5:45 am) and her heart rate was at 116 around 4 am so that is good. We will be washing her hair today. She is acting fine right now and has not cried at all since she was woke up for the blood, medicines, and turning her.  She is watching TV currently.  The night nurse just asked if they talked to us about discharging today and I said No but at least it was brought up by someone. - 6:00 am

Well two steps forward and one step back as they were pulling the three drains out from under her cast the last one broke. The doctor does not think it is inside but he is not positive of that. So he is going to talk to her doctor and they might have to take her back to OR and recast her under sedation... unfortunately this is not an April Fool's joke.  I also talk to her ped about her episode last night and she believes it was night terrors with being woke up abruptly and all the medicatioin - 8:15am

Well we are here for at least another day. They want to keep her 24 hours after fever to make sure it does not come back. They will take her to OR early tomorrow morning and lightly sedate her. The first step will be cutting a whole in the cast to see if they can get to the tube that broke.  If they can not they will cut the cast off and hopefully get it then.  If it is still in the skin then they will make a slight cut to extract it.  Not a happy camper in sight at the moment. 8:30 am

Dani got to escape her room today and try out a wheel chair like the one we are going to have.  We took a two laps around the floor and a trip to the Garden. Pictures below

The X-Rays revealed that the tubing is still in her soooooo she will have this cast removed, they will do a small incision to get the tubing out and then get a new cast. We are so excited about her being put under again ... NOT! Continued prayers that tomorrow goes smoothly and she can sleep in her own bed tomorrow night.  On a bright note this is the wheel chair we will be taking home and she LOVED it and did not want to get out.  She also ate chicken nuggets, fries, and 2 apple juice for dinner tonight.  Since she is an add we will not know when she is going into surgery until they come get us in the morning. - 6:15 pm

Day 3 - Hospital (Hip Surgery)

I really don't enjoy all the machines and their beeping continually off and on all night long. She did pretty good last night. She woke up for a bit awhile ago and I asked if she wanted anything and she said to go back to sleep. - 6:30 am

I keep trying to upload pictures but my phone does not like this room. 

The orthopedic nurse Amy and the anesthesia team have been in this morning.  Dani's temp is 100.9 and she looks a bit pale so they are checking her blood draw from last night and we possibly could have to do another one this morning.  Her epidural will come out today and also her catheter.  They are going to start her on two oral pain medications.  I will fill in the names when I get them.  She is acting find and wanted cheese bread (grilled cheese) so I ordered it and hopefully we can get something substantial in her stomach.  She had a cherry popsicle, chocolate milk, and a few animal crackers yesterday.   Just so I get as much information on here as possible last night her heart rate got as high as 164 and this morning it is still in the mid 150s - 8:45 am

Missy Miss is going to be receiving blood shortly and she did eat 1/4 of quite a big hot dog. She just received her second dose of pain medicine. - 2:15 pm

Her blood transfusion is done and the majority of her meds for a bit also.  She asked for sausage pizza and hopefully she eats it. - 6:45 pm

http://www.facebook.com/video/video.php?v=10150475933335372  This is a video of Dani singing this evening after eating a chocolate chip cookie.  She only ate a small slice of the pizza because it was too spicy but that is still an achievement. - 9:38pm

Day 2 - Hospital Visit

They are rolliing her from side to side every two hours and she just got sick again so we had to change bed pads. She slept for quite awhile though. - 1:15 am

Around 2:45 am I woke up to Dani saying "Kelli, Kelli, Kelli,  Wake up it is morning. "  lol luckily she went back to sleep.  She was up and crying that she wanted the cast off and her belly hurt.  The nurse gave her more anti-naseous medicine and I turned on a Strawberry Shortcake movie and gave her some ice water and that seemed to help. - 5:30 am

Also it is my baby's 14th birthday ... Happy Birthday Gabe!

Dani and I just woke up from a nap (2:45pm).  She seems in good spirits but wants to go home (without) the cast.  They had us lift her out of bed and put in her in a wheelchair to make sure we knew how to do it.  That should be interesting.  I am not sure the Grandma's are going to be able to handle that.  She is really heavy although it will help when she does not have on the tubes and wires to mess with also.  She still complains about her belly hurting but we think that is a combo of her meds and her not having anything to eat for a day and a half.  She did have a couple of Peeps before her nap and kept those down.  They are going to give her Zofran every six hours to help. 

My nephew Steven came by to visit for a little bit.  He had a doctors appt at the hospital next store.  Jason is here now.  I believe both Grandma's are coming later and Aunt Jackie.

Missy Miss has a temperture of 101.2 so her heart rate is on the high side.  She just took her heart medicine and some tylenol. - 7:45pm

Hip Surgery Day

We had to be at the hospital at 5:45.  She went into surgery at 7:15. There was a little confusion on whether they were going to do an epidural or not. They said it would take an hour to get her all hooked up and they would call every 1 - 1 1/2 hours with updates. I am still waiting on the first one. - 8:15 am

They started the procedure at 8:45 and they did get the epidural in. - 9;00 am

They called for permission to use a bone graft.  That is going to be used at least on one side to help recostruct her hip socket - 11:00 am

They started on the other side thirty minutes ago. They said she is still doing good. - 12:00pm

Thanks to the Boni Aunts and Uncle and The Downey for the Dr. Bear and balloons - 12:30pm

They're starting on her cast now - 1:30pm

She is in recovery and the doctor said he was very pleased with the operation. - 2:37pm

We are in 10W Room 20.  Dani is groggy and they are taping up the edges to prevent it from getting wet.  She has been able to have ice water but she is demanding milk! - ph# 314 454 2324 straight to the room 5:04pm

We are going to be at the hospital at 5:45 tomorrow morning.  I am still packing!  I actually got quite a few things accomplished today.  Gabe has his new glasses and Grandma Boni found peasant skirts for Missy Miss to wear over her cast.  I had to leave my work laptop at work because they knew I would be checking emails and such and I DO need to focus on Dani during this time. 

Here is Missy Miss enjoying her new DS1 that Grandma Boni and Grandma Dunn got for her.

Pre-Op Visit to Same Day Surgery and Anesthesia

Today's visit consisted of taking weight/height measurements and checking out her heart.  They also took a glance at her throat because of the continual cough and runny nose.  All looked good.

I am taking her back Monday morning for a blood draw to type her because of the transfusions she had with her anemia.  They said sometimes that can change her blood type ever so slightly and they want to make sure they have additional blood on hand if needed.

They will give her a knock out drug in her room and then intubate her when they get her in the OR.  They will then place an epidural  for pain management before starting surgery to help after surgery.  She is estimated to be in the hospital up to six days after that.

Our Next Journey

Missy Miss was born with Hip Dysplasia.  We knew we would have to do something about it at some point.  She has been in both daycare and preschool.  At preschool she receives multiple services and one is physical therapy.  The physical therapist and her teacher became concerned last fall because Dani said it hurt both to sit crosslegged and to sit in a regular seat with her legs dangling so they gave her a special seat lower to the ground.  Also at the time she was waking up in the middle of the night complaining either about her legs hurting or just being in pain.  So we started the process of finding out what we needed to do about her hips. 

She will start kindergarten next fall.  We wanted to get it done so she could still enjoy summer. 

So we have had numerous appointments with cardiology, orthopedics (3x), HemOnc for another infusion, This Friday March 25th we have a PreOp with Same Day Surgery for Anesthesia and more.  Her surgery will be on the 29th.  She will be under for an estimated five hours.  They are reconstructing her hip sockets and then straightening her legs but cutting them in two sections.  She will be put into a Spica Cast and be in it for five weeks and then put in a brace (which I have a picture of) for six weeks.  Fortunately they said she can go to school with the brace on and daycare is willing to work with it. 

The procedures name is Pemberton Osteotomy if anyone would like to look it up.  Jason and I will be updating as we continue this new journey.