Lillie's in the show!

Lillie found out today that she did get a part in the play. It is called Acorn to Oaks. It looks like it will be a very fun presentation. In the past her school has done shows but nothing like this. They will have three show dates between December 10th and 11th if you want to mark it ahead of time. Lillie choose not to try for a speaking role but will be in several songs. The one she likes the most is called "The RUMOR Weed" A classic Veggietales song. She has several practice dates ahead so she is keeping very busy.

Tomorrow Noah is going for his 4 month well check. We have been concerned about getting his shots. After being so concerned that Lillie had autism and knowing the rates are so much higher for boys it is definitly on our minds. Noah has a runny nose right now too so it may just not be the right time. I am excited to see how much he weighs. I have been struggling with nursing. I had breast surgery after a lump was found two years ago. I was told it would not compromise nursing but I am only making about 5% of my milk from that breast. I question at times if Noah is getting enough. Well his weight will tell us alot. He also may be ready to start some cereal which will help things. He does not sleep at night and boy am I tired. I think he may just be too hungry but I can't be sure. I will let you all know soon how we make out tomorrow.

Noah's Portraits

On Tuesday we took Noah to have his pictures taken at Sears. He did a great job posing for the photographer. We had no worries about getting him to smile. If you would like to take a look click this link http://www.SearsPhotos.com/ViewSharedAlbum.aspx?ShareID=3bd2e232-18a9-4a88-9ab2-cd6f41ec9a34

Life has been a bit more hectic than usual. Tonight Dave and I are running another 8 week sign language class at Own J Roberts High. Its so much fun and we both love teaching its just that I am not feeling ready to have a babysitter. I guess I will be ready though in a couple of short hours.

Lillie is now doing swimming, Awana and girl scouts and today may decide to audition for a part in her school Christmas musical (she was undecided this morning). Dave is still working alot, I am currently involved in two moms groups and now offered to also be the class mom at Lillie's school. and now we are teaching the signing class.

I often feel overwhelmed but I like to keep busy because a idle mind is the devils playground. Being busy occupies my time and then I do not sit and ponder over things.

I am looking forward to seeing how Lillie makes out if she does audition. I am sure she would do great as a dramatic actess! So check out Noah's photos if you have time they are very cute.

Girl Scout's

We took Lillie ot her very first Girl Scout meeting yesterday. Lillie was not sure if she wanted to go but decided to give it a try. Several of her freinds from school were there making it easy for Lillie to settle in. She made some cool crafts and learned the Girl Scout motto. She told us she liked it and wants to join. She is what they call a Daisy. She will get a vest to show her badges etc in a couple of weeks. She will look so cute. Just to prepare you. Lillie will be selling GS cookies sometime in January!

Lillie already belongs to a club like girl scouts called Awana. It is run at our church on Sunday nights. She does games, stories, crafts etc. There she also has a vest and receives merit badges and such but it is all based on her bible memorization. She did an amazing job last year and won many awards so she is already geared up to start her third year with the group. Each year they have a pine wood derby and Lillie has won a trophy two years in a row. I'll tell you for a little girl who they feel is not very social she has a very busy schedule!

Lab Results Are In

I spoke with Lillie's doctor yesterday after all the lab test came back. I have not seen the actual numbers myself. The doctor said all the test were totally normal and we have nothing to worry about. Of course I am shocked but grateful that Lillie has no medical issues as a result of her poor eating. We still plan to pursue CHOP though to help us work on the behaviors associated with feeding in our home. We had so many great prayer warriors lifting Lillie up this entire time and God heard everyone of them. Its a great feeling to know that Lillie is so healthy

Results

Dave and I went for our follow up appointment today at Dupont. They do a very thorough review and for that reason I will need to briefly sum up what they said because their report is 18 pages.

Lillie scores great on all her test. Her cognitive and language score were above age for her and she only showed stress when trying to memorize and repeat back things in order such as...20,40,60,60,40,20. So this could be tough with phone number and such.

The test we did for Lillie her teacher also did and our results were very much in line with each other which is great. Lillie shows alot of struggles with social interaction. This has been a concern for years which is what prompted us to enroll her in so many activities with her peers. It still seems she has alot of struggle with being age appropriate in play and letting others direct the play. Lillie likes to be in charge!

Lillie also shows difficulty with transitions and following orders or directions when it does not go according to the plan she has already set for everyone which can lead to defiance. Lillie also shows anxiety in many ways but does not show it in any one specific way.

They told us that although many of Lillie's symptoms are autism related they would not classify her as being autistic. She does not have the language issue that is related to that disorder. She does show the sensory, feeding and social concerns.

They did suggest that Lillie be given a feeding eval to determine if a feeding clinic would be appropriate for her. We already have this set up in November at CHOP.

They feel Lillie has a generalized anxiety disorder and they do recommend that she receive therapy for it. They beleive it is related to the social situations she is in and seperation anxiety.

The main diagnosis that they came up with was disruptive defiant disorder. This is a disorder basically where kids want to be in control of situations and when they cant thay take extreme measures to get their way. I think this sounds like most kids today. However in this case it is almost like Lillie is unable to stop herself and does not pre-think it or want to do it but she feels so out of control otherwise and then it leads to the anxiety.

They are concerned about Lillie's lack of social cues and functioning with her peers which can get worse as she matures with older groups etc. They suggested a play therapy group that will teach her ways to interact and play with others in a manner more in line with kids her age.

We have a few things to look over and consider. We need some time to think about it. Also Lillie had the labs done today and her eating can contribute to defiant behavior. We need to see how those numbers play out to determine if that piece of the puzzle can answer any thing more for us.

She Did It!

Lillie had her blood test done this morning! I have to be honest and tell you it did hurt her and she did cry and scream alot, but they got the vein on the first try and they got enough to run all the required test. God shined his light and this too may now pass.

Swimming and life

Noah's first time in Exersaucer
Noah's first time in high chair

Lillie swimming with a noodle

Lillie has been in the water since she was a baby. She always loved going to the YMCA to play in the water. She always had a fear of gettimg her head wet or being splashed so she never really learned how to swim or got wet in those splash pad areas. Over the summer Lillie tried some swimming at camp and enjoyed it till she was splashed. She then decided to no longer go in the water. We have her signed up now at the YMCA for a special needs swim class. This enables her one-on-one lessons with very small goals rather than the long term one of learning to swim. Instead they will work on just getting her head wet or putting her face in the water.......or even getting splashed. She had her first lesson Saturday. At first she was reluctant to even get in the water and cried alot. Once she was in she had a great time and even swam with the boogie board which she thought was pretty cool. Way to go Lillie!

This week brings some difficult events for us. After much research and speaking with some people we discovered some blood work for Lillie could answer alot of questions for us in regards to her behaviors and eating concerns. We can look to see if she has had any metal poisoning, is deficiant in minerals or vitamins, check for allergins and look at sugars and thyroid.

We had blood work done for Lillie once two years ago. She had to go to two different labs. One stuck her four times with nothing and then the other got it on the second try. She was so upset beyond description. She does not remember all the details but knows she never wants to have it done again. Dave and I have tried our best to never have it done again but feel at this point the benefit may outweigh anything else.

We are taking her to Quest in the morning before school and plan to tell her tonight about it, so if you are reading this before do not say anything about it please. We will be honest with her and pray for the best response. If all goes well she will still make it to school and maybe even on time.

Tomorrow afternoon dave and I need to go back to Dupont for the results of her eval a month ago. We are not sure at this point what to expect but continue to pray and plan for open hearst and lots of understanding. We know no matter what they tell us Lillie is a wonderful little girl who has been enriching our lives since day one. God entrusted us with parenting her and if we do not find out as much as we can to help her we would have failed at our jobs. We never wish to make Lillie endure more than she needs and hope that after these few things Lillie will be able to breath a sigh of releif (or should I say mom and dad) and live life to the fullest!

Lillie rides the bus

Lillie started asking to ride the bus last year but we just were not ready to let her. She started asking again right away this year. Of course we snuck up to the bus on the first day to meet the driver and check out the other kids on the bus and then we still had to ponder it over for two days!

Today we let Lillie ride the bus home. She was so excited that she was going to get to ride the bus and without us! We waited for her at the designated corner. When she came off the bus she was smiling so big and looked so proud of herself. Dave and I were so proud as well. What a big girl we have.

She did much better the past two days at school. She received marbles from her pricipal for doing such a great job. She has made some friends and seems to be ok.

How Sweet

Noah in his outside swing for the first time.

Lillie is telling Noah what shapes the clouds are forming.

First Day Of School

Today Lillie started first grade. Of course I questioned all summer how i would make it through and now I wonder what my hurry was. I miss her already. The morning did not go how I wished though.

Dave took the day off so we were able to both take her on her first day. When we arrived at school all the other kids were already at their desk listening to the teacher. We were on time they just started doing things already. Lillie gave us each a hug but then ran out of the class crying begging us not to leave her there. She said she would miss us and especially Noah. In the past Lillie has dealt with seperation anxiety but last year in school she was fine till the last three weeks and that was when Noah had been born. She kept saying all summer she did not want to go. I started thinking maybe homeschool was a good idea. I had that plan last year but then opted out. I hated seeing her so distressed. It got worse so the principle had to come and take Lillie so we could walk out without her following. It was not an easy situation to walk away from and not the one you want to have when leaving for the next 7 hours.

I am hoping Lillie enjoyed her day and wants to go back tomorrow. Lat year Lillie had 13 kids in her class and this year there are 23. The class looked very full.....too full. I am concerend that she may not thrive well with that many children. Dave beleives with a little time she will be fine. We continue to pray about it as we want the best for her and want her to enjoy these experiences of life. Hopefully tomorrow will be a better day for her:)

Last Days Of Summer

I think this was the summer of "Phineas and Ferb" at our house. In case your not aware this is a cartoon on Disney that Lillie and Dave have come to enjoy alot! I think we watch them at least once a day. With 3 Disney channels the show is on anytime of day. I even drew a picture of the characters yesterday for Lillie. I thought she could put them in her locker at school. Maybe she will come to think I am cool, haha.

Last night we went to CCS for orientation. Lillie is all set to start first grade. Last year the school let several teachers go to cut costs. There is now just one first grade class with 23 students. Lillie knows all but 2 new ones. It is a large class compared to just the 13 she had in class last year. I am a bit nervous because she easily gets lost in a crowd. I am sure God has a plan and maybe this is the year she will find her voice amongst her fellow classmates.

I can't beleive summer is at its end. Lillie's first day is Tuesday. Dave took the day off so we can share in it together. It was just a short time ago I questioned how I would survive the summer. We did it! Lillie has read lots of books and even won a prize at the library!

Next Saturday Lillie starts a swimming team at the YMCA. It is for kids with special needs. She qualified for the program due to her many struggles so far with learning to swim. They meet once per week and she has one-on-one traing. She is very excited about it and so are we.

This morning when I opened my eyes Noah was staring at me with a huge grin on his face. He just loves to smile and giggle all the time. He is so sweet and pleasant. He has not been sleeping much at night leaving me with just an hour or two of rest. He does nap during the day so Lillie and I get our time too.

Today we took Noah for a walk in his stroller. He did not need the infant seat in it. I was glad because it still makes him cry some. He loved looking up at the trees and cooing at the birds. It is such a wonderful sound.