Gianna and Santa

Gianna and Abby Cadabby!!!

Gianna getting mugged by Matthew:)

Gianna and her new friend, Danny.

Long Time No Blog!

We have been so busy with work, school, therapies, Christmas shopping,etc..... I also discovered Facebook and have been neglecting Gianna's Blog. We went to a wonderful party on Sunday sponsored by Variety. This is our 3rd year going and I cannot say enough about how wonderful they treated Gianna and the other children who attended. They bring so much happiness to children with all sorts of disabilities. We even met another girl named Rachel who also has WS. I got the time to chat with her mom which was wonderful. Unfortunately, we lost track of each other and never exchanged info:( But hopefully we will see each other at the CHOP conference this summer. Here are a few pictures.... By the way, yes, the curls are still there;I just straightened her hair for a change. Happy Holidays to everyone!

YES!!!!!!!!!!!!!!!!!!!!!!

Victory For Our Baby!!!
We just received word last Thursday that Gianna will receive TSS services:) We are so relieved. We started this process in late March and finally after going through the appeal process Gianna will get the help she needs. I am so glad we fought back and advocated for her. So if you are going through this, be persistent and be a voice for your child! Services started today and I am meeting her TSS worker tomorrow. She will recieve 34 hours at school and 6 hours at home. I'll keep you all posted. Gianna went to her first Halloween Party Saturday and had a blast. Here she is as "Little Miss Dorothy" She just loves Halloween and was not the slightest bit afraid of the costumes. It is one of my favorite celebrations too! I am looking forward to doing some Trick-or-Treating this Friday!
GO PHILLIES!!!!!!!!!

MY FIRST HAIR CUT !!!
Yes, I know, about 4 years too late but hey, she's my only girl and I love long hair on little girls. When I was younger (about 6) my mom told my dad to take me to the barber shop with my 2 older brothers to get a haircut.Well, you could imagine what I looked like when I got home.... a boy! Yes, my dad told the barber to cut my hair like my brothers. Needless to say my mom was beyond pissed and I was traumatized. To this day I have always kept my hair length past my shoulders. So, I always vowed that if I had a daughter, she would have long, beautiful hair. But as those of you with naturally curly hair know it is not easy to keep it under control. So it was time to get a cut. Not much, just 2 inches. Gianna even got a certificate and some souvenir curls in a little baggie to take home. And she does not look at all like a boy!

I am a Holy Terror!!!!

One of our local recreation centers has a youth sports organization called the Holy Terrors. A parent of a child with special needs decided to create "The Holy Terror Stars" which is just for children with special needs.(http://holyterrorstars.webs.com/aboutstars.htm )Aside from giving the children the opportunity to play basketball, baseball, and other organized sports, it gives the parents the time to get together to socialize and support each other. The group meets every Friday from 6-8pm in the gym of the rec center. I finally decided to give it a try and I am so glad I did! Gianna had a blast and I met some really great people-including a local boy named Ricky with WS and his dad. We live so close and never met before. Gianna and Ricky hit it off and I was so interested in talking to his dad, Rick. We shared so many stories about our kids. It was so nice to talk to someone who just "knew what I was going through".The organization even gives the children uniforms for free and has various parties and fundraisers throughout the year. We are already looking forward to the Halloween Party on 10/25!!! Here is Gianna in her uniform. Go Gianna!!!

Just too cute

Gianna has been sick the past few days with a sore throat/cough. She has had me up for the past few nights so I have been a little groggy lately. This morning she cried with her little "raspy" voice asking for me to stay home with her. It broke my heart to leave her but I knew she was in good hands with my mom. I thought about her off and on all day and kept second guessing if I should have just stayed home. She ended up doing fine and the antibiotics are finally kicking in.

After a long, stressful day at work, Gianna gives a me a huge hug and says, "Mommy, you make my heart feel super happy!" That's all I needed to cheer me up. I love you, Peanut and I am so proud to be your mommy! Even when you keep me up at night;)

Down.....But not out! The battle continues....

We received a letter a week and a half ago turning down TSS services for Gianna. Guess who was on the phone filing a grievance the second I opened up the letter ?????????? That's right, yours truly. As I read the reasons I chuckled to myself. The first was that the psychologist that tested our daughter did not turn in all the necessary paperwork and tests. Second, they said that a BSC(Behavior Specialist Consultant) has to observe Gianna in school and complete an FBA and implement a behavior plan that is appropriate for "a child diagnosed with Pervasive Developmental Disorder" WHAT!?! I have never heard that diagnosis for Gianna before. They just pulled that one out of a hat. So I get a copy of the psychological evaluation that was completed in July and it was a complete mess full of misspellings and bad grammar. I look where it says child's strengths and guess what it says??? "Her cute, elfin-like facial quality"?!? Ok, so yeah, Gianna has the typical WS facial features and yes, we think she is cute but in terms of strengths on a psychological exam that is ridiculous. What about her endearing personality, willingness to please, eagerness to learn,strong language skills.... So I enlisted the help of Dr. Kaplan at the WS Clinic at CHOP who immediately faxed a letter in support of Gianna receiving a TSS and also explaining about WS and some of the deficits that individuals with WS have. Within two days we received a phone call requesting a re-evaluation by a different psychologist. So last Tuesday we took Gianna down town to be tested once again. We should be hearing within the next few weeks if she will be given a TSS. Meanwhile, she kind of just does her own thing at school. Her teacher has expressed concerns about her distractability and that she does not focus for very long(no shit). She has also lost weight as she is having difficulty feeding herself at breakfast and lunch(provided by the school). The aide cannot sit with just her as there are 19 other children in the room. So more food ends up on her and the floor than in her mouth. I just picture my poor little baby sitting there trying to feed herself. It breaks my heart.Plus she has been wetting herself frequently. Last week my husband picked her up and she was soaked. He took her home to change her and she was all irritated and red from being wet for so long. Her teacher is absolutely wonderful so I do not fault her. She has her hands full with the other kids. One part of me wishes she were back at SPIN where there were 8 kids and 3 adults but even her former teacher said she needed to be with typical peers and was ready to move on. We are not saying that this is the perfect environment for Gianna but we want her at least to have the chance. With a TSS we think she will be able to do it. Please send some good vibes our way..... I'll keep you posted.

5 Already ?!?! Where has the time gone???

Birthday Pictures from Kiddie Kandids

Gianna turned 5 on September 10th! In the blink of an eye our little baby has grown up. We went to Nifty Fifties to celebrate and Gia and Erik bought her a big girl bike for her birthday. She began school last week and is doing great!She looks so cute in her little school uniform. We are still waiting for a TSS worker but so far she is doing great in a class with typical peers. Her teacher is wonderful and Gianna likes her a lot. Frankie started 9th grade and Tommy started 2nd. There seems to be no time to blog:( Here are some pictures from the last few weeks.

Last Day at SPIN:(

Gianna has attended SPIN(Special People In The Northeast) since she turned 3. Friday was her last day. In September, she will begin Bright Futures, a full day program run by our school district. I am a bit nervous about her transition from EI to a regular ed setting but we know Gianna is ready. We all agreed at her IEP meeting that Gianna needed the change. We are waiting to hear if she qualifies for an aide to help her stay on task, assist her at lunch, and keep her in the classroom(lol). I know Gianna will miss her teachers and friends at SPIN-they had such a hard time letting her go. I will miss them also as they were the most loving, caring and overall, most accepting teachers I have ever met. They truly loved G as much as we do! Here are a few pictures.

Gianna's MRI results showed no evidence of a Chiari Malformation-we are so thankful and relieved. Thanks for everyone's thoughts and prayers. We have been having a wonderful summer. Daddy put up our pool which has kept everyone nice and cool. We went on a picnic and played mini golf with cousin Gia last week and enjoyed a 4th of July barbecue at my mom's on Friday. Next week we are doing day trips in and around the city and in August we are heading down the shore for a week-can't wait! Gianna goes back to school tomorrow so I can hopefully get some things accomplished-she keeps me very busy. For all of you going to the WS Convention out in sunny California, have a great time and take lots of pictures! Maybe we will make the next one. Unfortunately we will be unable to attend due to Tom's work schedule. Have fun!

MRI/MRA Update!!!

Gianna did very well. She only told one nurse, "I don't like you!" which was pretty good since she has no problem telling people how she feels. There were minor blood pressure issues when she first came out of the procedure but overall she did really well. Tom had to wear a pair of "borrowed" scrubs home because after they filled Gianna with IV fluids well, let's just say that all that liquid had to come out somehow:) She was so out of it she had absolutely no idea she was going.Poor Daddy looked like he peed himself:) The nurse had a real good laugh.Gianna was so excited to ride in a wheelchair on the way out! So we are all very exhausted and Gianna is thankfully sound asleep. We did not get the results yet but will update when we know-we are keeping our fingers crossed!!!

PS-Sorry for the bad quality pictures. They are from my cell phone camera.

Anne Frank Elementary School-Kindergarten 2007-2008

This was one of my best teaching years ever. I am so thankful to have had the best group of kids my first year.It made my first year at a new school so much easier. The school year went by so fast. Here we are outside when we released our butterflies back in May. The kids were so excited. Mandy, also in the picture, is the best teacher's aide ever. We hit it off from day one and have become great friends. I will miss this bunch.... Good luck and much success next year and beyond.

Gianna did GREAT!! Here are a few pictures. The wedding was so much fun. Maria was the most beautiful bride I have ever seen. And Jon, the groom looked so handsome. Gianna had a blast dancing and was her normal social self working the crowd. Here she is with Daniela,the other adorable flower girl and with Nicholas as they walked down the isle. The last picture is of my husband's niece, Hannah-isn't she just gorgeous!?!? To my little peanut:You did a great job and mommy is so proud of you.

Out for the count........ Last Thursday, Gianna and Sammy were playing and Sammy scratched her eye with his little sharp nail. Needless to say, she was in a lot of pain. After being up all night with her, I left work early and headed to the pediatrician. After waiting an hour and a half in the waiting room, her doctor immediately sent her to a specialist. It turns out she had a very bad abrasion on her cornea. So for 3 days she was laying on he couch and getting more attention than any four-year-old should. We applied the drops and ointment every hour despite her screaming and crying. What a trooper! Unfortunately, we had to miss the WS Get Together in Strasburg:(
We will meet some day, ladies. But by Monday, she was feeling much better.
Big brother, Frankie, graduated last weekend from eighth grade-Wow, where has the time gone? Pretty soon I'll be saying I have a son in high school-that's depressing! Here are a few pictures from Matthew's birthday party at Kix and Giggles. Gianna loved seeing her school friends outside of school. Tomorrow is the big day!
She gets her hair done at 9:45 and then we are off for pre-wedding pictures at Maria's(the bride) house. We went to the rehearsal last night and Gianna did a great job. Let's hope she does just as well tomorrow. I'll post pictures soon... Take care.

Sammy,Carnivals, and Blue Ribbons......

Sammy is 3 months old and doing great. He is adjusting nicely and really seems to like it here. I think we'll keep him ;)

We went to our local church carnival and had a great time. I always loved carnivals when I was a kid ,especially the fun food-we had burgers,fries,cotton candy, and fried Oreos-YUM!! Erik and Gia joined us-Erik is one of Gianna's favorite people in the whole wide world(see picture). On Sunday we all went to watch GiGi in her first ever horse show at Pegasus. She did a great job.Here she is with her beautiful blue ribbon! Have a great weekend, everyone. For those of you attending The Strasburg Railroad Get-Together- I can't wait to meet all of you on the 7th!!!!