Dupont

I have still been waiting for follow up from Dupont about Lillie's evaluation. At first they said we would know everything at the appointment, then they said follow up would be within 2-3 weeks. Today is two weeks. I finally heard from them today and we go back on September 14th at 1pm. So we must wait two more weeks.

In the meantime I have all the paperwork here for Hersheys feeding program and already have an appointment for CHOP. It turns out CHOP has an outpatient program that we may be able to try right in King Of Prussia. We go the week before Thanksgiving for a two hour eval. There they will determine if an op program would work or if it indeed must be inpatient. Still hoping Dupont will shed some light on things.

Noah Gets Dedicated

The Dedication Ceremony

Our Family Before Church

Pop-Pop and Ms. Dottie with Lillie and Noah at Church

Pastor Ralph with Noah During the Dedication

Sunday was a wonderful day for us at church. Noah was dedicated. We have primised to God and our church family to raise Noah with the direction and understanding of the Lord. It is not an easy thing always in todays society but we have managed very well with Lillie with lots of help from our church and her school. I am sure Noah will learn alot from his big sister.

Happy Anniversary!

Today Dave and I celebrate seventeen years together. It is so amazing to us at age 36 and 38 we have been able to have such a long standing relationship. We started our day with a surprise from Lillie. She baked us muffins and made us coffee. She had been planning it for days and was so proud of her accomplishment. She has such a wonderful heart. We are so grateful that she even cares about our special day let alone wants to do things to honor it. She took us out Thursday night to Rita's to cash in some coupons she won and got us each a water ice. How lucky are we!

Yesterday we spent the day at Marsh Creek. Our neighbor told us about the beach there so we went to try it out. Lillie's BF came with us. We found it to be a bit of work to get ourselves together and out the door but once we arrived it was a fun day. We enjoyed swimming in the water and making sand castles in the sand. We had some lunch. The girls even enjoyed rolling down a hill (even dad got in on that!). It has been a great vacation for us all.

Vacation

I spotted a beautiful butterfly at the Hands On Museum.
Yes, this is dad trying to have a two month old walk!

We are finally enjoying some family time. Wednesday we went to the Hands On Museum in Lancaster. Lillie's best friend spent the night and then we all went for a day trip. It was a neat place with lots for the girls to do. Noah enjoyed all there was to see and the outdoors.

Vacation

It is finally time for us to have a vacation. I am not sure though if a stay at home mom really has a vacation, but Dave is on vacation which means he can play some while I relax, so I suppose it is a vacation for all.

Dave has a long to-do-list. The car still is needing repair and we started to rip apart our bathroom. We have been wanting a new floor for sometime and one day just decided to rip out the old one. Sometimes when your in a situation where you have to fix something you will compared to just deciding to change it one day.

We have all been doing well. I received all the paperwork back from Lillie's school and mailed it to Dupont. I now just need to wait for the call to go back and hear the thoughts of all the medical professionals. I am very anxious and once again God is giving me a chance to learn patience. Not an easy task for me. In the meantime I have researched more on the feeding clinics. CHOP has one here in King Of Prussia. It is an out patient program. I called and took the intake over the phone and Lillie was qualified to go see the team. They do a two hour eval with a feeding specialist, speech therapist, occupational therapist and GI doctor. They decide if Lillie would do well on the outpatient program or if inpatient is really the only way to go. I am just setting them all up for now so when we go to Dupont I have not lost any time. These doctors have long waiting list so its best to get in as soon as you can.

For now we will enjoy a few days as a family. We hope to get many things done but then just have some time to STOP! Lillie's best friend will be coming for a sleepover and we hope to go to the beach also.

Dupont

Well life is still a bit crazy here for us. I am trying to stay positive in light of it all. This is not such an easy task for me. We are hoping to fix the car one day next week and I think the computer is fixed.

Yesterday we spent the day in Delaware at Dupont Hospital. Noah did great on the drive. He barely cried at all and seems to be doing better in the car. We made it there by 8:15 but were taken late at 9am. The eval was over at 2:30pm. They asked us alot of questions, had us fill out alot of forms and questionaires. Lillie answered some questions and then did several test to rate her cognition, listening skills, math skills, language and other age appropriate things.

By the end of the day we were told that they need to review everything and have us come back for a follow up and then and only then would we receive a diagnosis and treatment plan. The one thing they did offer was an option for feeding. We had been told once about a feeding program at CHOP that last one month M-F from 8-4. You drive down, stay all day in a feeding clinic where your child receives all their meals in a controlled environment and eats nothing outside of that time. We thought it a bit much and not needed, plus it sounded like an ordeal to get to the city each day etc. Well here we are two years late with only worse news to report. Now they are telling us Hershey Medical offers the same program except the family lives in the Ronald McDonald house for a month so you do not need to travel. It still seems like such an extreme option and I question if its the best option. No other options are being offered because we already tried them all and things only became worse. We have heard the expression so many times that Lillie must be a picky eater but that is by no means a proper explanation of what our little girl deals with when it comes to food.I rather not go into all the details but trust me when I say she has some very serious beliefs, rituals, and fears when it comes to food.

We continue to pray that we will receive the help we need for Lillie and that Dave and I can stay on the same team and not allow this to strain our marriage anymore. It is not easy when your child struggles and you feel helpless to "fix" it.

Friday the 13th!

Normally I would tell you that I do not beleive in bad luck or the concept of Friday the 13th and I suppose overall I still don't. This past Friday though was definitly one that would make you wonder. Dave called me at 3am to tell me had just hit a deer. He was on his way to work and all of a sudden a buck was in the road and he hit it. He did nt even bother to stop. It was dark, the road was lonely, he was already running late, and he was in shock. The car appears to be ok other than a very dented hood and two broken headlight casings. We should be able to get it fixed soon. Later that day as I was on the internet suddetly I was locked off my e-mail. It was not long before I realized I was hi-acked as friends started to call meto see if they could help. A mass spam e-mail went out to all of my contacts saying I was in Madrid, Spain and needed money due to being robbed and broke. To make a long sdtory short I lost all e-mail accounts. I am now set up with aol. The new address is thepascales@aol.com I only remeber a few e-mails by heart so if your reading this please send a e-mail my way so I can get you back in my address book. I am trying to stay positive despite it all and focus on Tuesdays visit at Dupont. In the meantime I appologize to all of you for the crazy e-mail and confusion. I am hoping it does not happen again and my computer is not better protected!

How fast they grow.

Lillie loves the picture of Noah crying.

Noah lives flying in for kisses!

Watching the birds is so much fun.

Siblings. How sweet they are.

Look how much I have grown.

Days go so fast sometimes. Enjoy every moment.

Kimberton Fair

We had an awesome weekend. We went to the Kimberton Fair. Dave and I use to go many years ago but have only taken Lillie once. She did not remeber being there before and of course it was Noah's first time. Lillie and Dave went on lots of rides while Noah and I hung out watching all the lights and people go by. Dave's mom joined us for a few hours which was also nice.


Lillie had an appointment set up for Dupont in September but was moved up. She now goes on August 17th. It is a psychological eval that last about 5 hours. She was diagnosed about 2 years ago under the Autsim umbrella but we feel it was not an accurate diagnosis. It was done by a smaller local office. We see many areas of concern with Lillie and feel there is something more than just our parenting and her personality that may be of concern. We are hoping Dupont can help us dtermine what that may be. Since she had several developmental delays it may be a carry over and we just need some help.

Please keep this appointment in your prayers. Not only that it will go smoothly and that Lillie will be comfortable, but also that the staff will be able to offer us the help we need. We also need prayer that Noah will be able to handle the car ride down and back and the 5 hour visit. He still HATES the car!