Orthopedic's Appt 08/29/2012 -  The pictures above are a combination of MPS Awareness Day 2012, Dani wearing her glasses,  and first day of school

After a week and a half at school Dani managed to lose her glasses.  I had asked the teacher to keep them in her cubie in the classroom so she could just use them when either reading or seeing the white board.  The teacher let her wear them to the bathroom and "majically" they did not return.  Well we tried AGAIN.

Her orthopedic appt went somewhat like I was thinking it would.  Dani has knock knees and will need to have something done within the next couple of years because as she gets bigger they will have more weight applied and get worse.  We are holding off on that for now.  She also has tight heelcords.  They wrote a Rx for PT twice a week for six weeks and then we have the option of having her wear splints at night or put permaneant cast on for awhile to stretch the tendons.  We are still talking about what we need to do.  They said that all of that would just help prolong needing surgery to elongate her tendons. 

I am working with school to get her IEP reestablished to possibly get PT through the school district but they have changed since her initial one and we have to prove educational vs medical.  So even though she can not see the white board, nor hear well out of one ear, and is stiff when getting up off the floor that does not quailfy because she is awesome and smart and keeping up with her class.  We will be seeing about that.

Funny Note:  We were there for 3 hours and to help pass the time Dani and I were painting our nails.  The doctor came in and was in shock.  He obviously does not know how princesses can be.  Then when he was showing us the second round of X-Rays all Dani could concentrate on was that they had a picture of her butt.  I think she mentioned it five times while we were discussing stuff.

Spring is coming!

All is well at the Boni/Bullock house.  I would apologize for the late update but there are other things more important then a blog.  Like Sanity!  Missy Miss had her adenoids and new ear tubes placed in December.  She also continues with her IVIG although we were able to skip January.  Late January she had surgery to correct her eye muscle and to get data on possible Lens Implants. 

We go back to the cardiologist and Opthamologist in April to see were we are in in both of those. 

She did break a tooth last night (baby tooth) and I am trying to get her into the St. Louis Children's Dental to see about that.  Overall she is doing awesome in all regards.

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.