Three Year Old Lily!!

In a blink of an eye - our baby is now three years old. She is no longer a baby but a Toddler!
Being 3 changes so many things in our world.

Most Recent News!
Our biggest news today is that Lily took her first two steps yesterday at Hippo therapy!!!!!! We are thrilled! All the hard work and therapy is really paying off! What a great gift from God!


Lily goes to Preschool!!
Lily started preschool last week! After 2 IEP meetings and much discussion, we were able to get her into a Developmental Preschool that is designed for kids who have been in First Steps and have different developmental delays. She is absolutely LOVING riding the Bus that picks her up at our house each day and brings her home. Lily goes to school 4 days a week from 8-11am. She receives OT, PT and Speech each week at school. Her teachers are wonderful. They are great with communication! The class size is very small right now - only 4 children. It will grow as the year progresses. Right now Lily does not have an aid. We will see as the class grows if she will need one. All of the children in her class are walking and talking - which is awesome for Lily. The main reason we wanted her in this class was so that she could be around children that can model skills for her.


School Background
We had Lily's IEP 1 week before her 3rd birthday in May. It was a 3 hour meeting that did not reach a conclusion. As another 1p36 mom put it so perfectly - our kids are in the "middle place". In our school district there are basically two options for Lily: Developmental Preschool through a local elementary school or a developmental preschool for more severely affected children that serves 3 different counties - called Tri-County. Lily's test scores of course are very low - she is non-verbal and not walking unassisted. However - as all of her therapists have seen - she understands a lot cognitively....you just have to give her time. We fought for the local elementary school developmental preschool. After the 1st IEP meeting we had not gotten what we wanted.

Lily turned three 2 weeks before the school year was over in May. They placed her at Tri-County for the last 2 weeks and then suggested we have her do the summer school program there as well - which was for 3 weeks in the month of June. This turned out to be a very good plan for Lily because Tri-County was able to get to know her and see all of her abilities. She also got to ride the bus to summer school. This was a great test for the bus and for me. I was a little nervous about the whole concept. Lily LOVED it! I only signed her initial IEP for the summer so that we would have to have another meeting for her Fall placement. The Tri-County principal came to the 2nd IEP meeting and spoke on Lily's behalf. She was GREAT! She stated that Lily was a model to the other kids there and that she really belonged at the Developmental Preschool at the elementary school!!!

Lily's FIRST WORD!
Lily has been playing around with the "B" sound a lot recently. We say it all of the time and she mimics us. In school last week the speech therapist played with bubbles. Our private speech therapist also was playing with bubbles and Lily said "Bubba" for Bubbles. It was the BEST!! Both Jason and I were home and we almost fell over. It was on Friday. It was a great end to a very busy and amazing week. Here is the video:





Lily made huge strides in her walker this summer. Our new PT has really been strengthening Lily and helping her motor skills. She is teaching her to get in the walker by herself and turn around in it. She has helped Lily learn to steer better and go backwards! At Hippo therapy one day the PT there put Lily in a hula hoop and let her walk that way after getting off of the horse.






The Bed
Last week was a BIG week for Lily. In addition to starting school and saying her first word ...Lily also got her new bed!! We have been working on this since March!

Lily started pulling up to stand in her crib in January. Lily continues to have night time sleep problems. She throws huge crying fits and throws herself all around her bed. Eventually she calms down and goes back to sleep. Some nights this happens 1x. Others up to 4x. In February Lily somehow threw herself out of her crib at about 1 am. That was it for the crib. We brought out the pack n play and she has been sleeping in it ever since. The pack n play was actually a much safer bed for Lily as it has soft sides. She stood up and walked around and leaned over to look at the ground. It was a great temporary solution.

In March at our last developmental pediatrician appt. we told Dr. Escobar all about the sleeping situation. We had been struggling to locate a suitable bed for all of Lily's needs. He had the PERFECT solution. A bed company - actually from central Indiana - called Noah's World Beds. http://www.noahsworldllc.com This company was started by a dad with an autistic son. He needed a bed solution for his son and working with a neighbor developed a bed that is perfect for children with sleep issues. It is like one big giant pack n play! It has mesh sides with a zipper and a top. It has a twin size mattress and will grow with her.

The bed should be covered by most DME plans on most insurance. Of course - our plan denied it. They said they don't cover beds with "safety equipment"...which is very weird since they cover hospital beds that I am sure have safety equipment. We have become accustom to our insurance finding all sorts of ways to make things difficult for us. Luckily, we have secondary Medicaid insurance for Lily through the Aged & Disabled waiver. This Medicaid has been a life saver for us. They approved the bed!!

Lily LOVES her new bed. She started sleeping in it Tuesday night. She is taking naps in it wonderfully. She still wakes up most nights. BUT she has been calming herself quicker and we haven't had to go into her room as much. We feel very safe with her sleeping in this awesome bed. If anyone has any questions about the Noah's World Bed please let us know. We worked very closely with the owners and they are awesome. Check out the web site too - they ship the bed all over the country. (http://www.noahsworldllc.com)


Happy Birthday Lily!
Lily actually turned 3 on May 14. Unfortunately she had a horrible flu - vomiting, diarrhea - the works. It lasted over a week and she lost over 2 lbs. We learned that we most definitely still need our g-tube. Without it we would have been in hospital for sure. Lily stopped eating and drinking. Even with the tube she was getting dehydrated. She had something called starvation diarrhea. When I was just giving her Pedialyte and clear liquids her intestines rejected everything. Once we started giving her nutrition via a very diluted form of formula she slowly began to get better.

We celebrated her birthday on May 23 and had a great party! She is doing so many new and amazing things! At her party she ate birthday cake for the first time! It gave me such joy to take those traditional pictures! She loved it! She played at the sand and water table with all of the big kids. She drank the water and ate the sand...but had a ball with everyone!

It was a birthday worth waiting for.

Transition
Turning 3 was a big transition for us. I really didn't think it was going to be. I was wrong. I am now 100% in charge of her "plan". I no longer have all of these therapists checking in with me. It seems that I am always fighting someone for what I want. The school system started it, then the insurance for outside therapies, etc. May and June were pretty rough. Dealing with insurance companies is enough to make anyone crazy. Every person you talk to gives you a different answer. It is extraordinarily frustration. In addition to all of the fights - both Lily and I were pretty sick throughout those months.

By July we came up with a good plan. Supposedly, Lily has unlimited therapies through our primary insurance. Medicaid backs up whatever they don't pay. So- in addition to school therapies Lily is still getting 2PT, 1 OT , 1 Speech and a Hippo Therapy a week. It is a lot - but this is what Lily needs to continue her progress. We decided to go Private on a few of these therapies. They come to our home which is nice. Our primary insurance is supposed to be paying a % of this. Since May, I have not seen 1 cent.... more phone calls...more fights...

We continue to feel all of the prayers coming our way. Thank you so much to everyone who thinks of our little Lily and prays for our family. We couldn't do it without you! Now that I have a "little extra" time on my hands...maybe I will update the blog more often! It doesn't hurt to have goals! :) Take care!

A new post for a New Year!

Happy New Year! We cannot believe it is 2010! It has been entirely too long since we posted..I think almost 6 months. We hope everyone is doing well.

The last 6 months for Lily have been full of busy days, many accomplishments and some setbacks. The most consistent theme of the last 6 months has been - Sleepless Nights.

First I want to go back and talk about the 2009 1p36 Conference here in Indianapolis. It was awesome! Thirty-four families came from all over the world to attend! In addition to families from all over the U.S. as far as Washington State and California we had several Canadian families and one family that traveled from the UK!! We enjoyed seeing all of our old friends that we met at the conference in Boston. We met many new friends this year. Jason and I want to thank everyone that helped us put the conference together. It was an enormously rewarding experience.

We were also completely overwhelmed at our community's generosity. We received over $4000 in donations from our family, friends and co-workers. We could not have put on this conference without your help. Thank You! 2009 ended on a great note for the 1p36 Deletion Support & Awareness organization (1p36 DSA) that puts on the conferences for our families. We received our tax exempt status in December! So all donations are now tax deductible. If you are interested in donating to this wonderful organization or your company has a matching program - please go to www.1p36dsa.org under Donations for more information.

Sleepless Nights Galore

Right after the conference in August - Lily started having a ton of trouble sleeping. The sleep issues started with what we thought were night terrors. She would go down fine at bedtime. Then at about 11:30-Midnight she would wake up screaming and thrashing with her eyes open but not alert. It started out lasting 15 minutes. She would scream and thrash and then pass out asleep when it was over. Each night it got longer and longer and maxed out at 90 minutes. This lasted about 6-8 weeks. We had an EEG done. We went to the Pediatrician. Nothing was found. We saw our Genetic Pediatrician and he thought it was behavioral. So - we started letting her cry it out. It got better in October for a couple of weeks.

Throughout all of this she was having some other crazy behavioral things. She went through a stint of hating her high chair and refusing to eat in it. She would sit and just cry and cry and put her head down. She went through a biting phase where she would bite my shoulder any chance she got. Some days she would just cry alot, thrashing her head back and hurting herself. We started chalking most of this up to behavioral issues, lack of sleep, etc. We thought maybe she was getting her 2 year molars and started medicating her often with Tylenol/Ibuprofin. That seemed to help.

We also came up with a safe place for Lily...An old Toddler Car Seat. We would strap her into the car seat on the floor during the middle of the night because she was hurling herself into her crib and it was just not safe. Holding her did not help. During the day when she would have an episdode we did the same thing. Often this helped calm her down quickly and made her feel safe. She liked sleeping there too. The developmental pediatrician thought this was a great idea. In a way it was like a time out - but in a safe place for all of us.

Then in November - her right ear started oozing this black goo. I called the ENT and went in right after Thanksgiving. They did a procedure in the office and sucked out a ton of black wax, etc. They thought that maybe Lily's ear had been filling up with liquid and then bursting from the pressure, healing and doing it all over again. Poor baby. No wonder she had been screaming...she was in pain. This would also explain why the car seat helped too.

We had ear tube surgery on December 15. When they went in - they found that she had negative pressure in her right ear and that her ear drum had been moved a bit because of it. Basically, she felt pressure like she was coming down in an airplane without being able to pop her ears. How awful! Her only way of communicating all of this to us was by crying. I hate that I didn't take her to the ENT earlier and have some serious guilt about it.

I wish I could say the sleeping has miracuosly gotten better. Unfortunately it has not. It is some better. We have started using Melatonin - a natural sleep aid. We will see if this helps. It has been shown to help kids with Autism. I know many of the 1p36 kids have tried it and it has not helped. Recently she has been having more trouble actually getting to sleep than waking up and not being able to go back to sleep. But one thing we can count on is ...things will never stay the same!

Therapy, therapy and more therapy!

We are up to 9 therapies a week now. 2 PT, 1 OT, 1 Vision, 1 PT Hippo, 1 Nutrition (every other week), 2 Speech, 1 Developmental. We added the Developmental in October. This will help Lily learn to play better in a school setting. Lily loves her new Developmental therapist and is starting to settle into a routine with her. Most of the therapy is still taking place in our home through First Steps.

Lily is consistently inconsistant....especially with her Gross Motor skills and PT. She has moments where she loves to walk in her walker. The week before Christmas we had her walking all the way across the room behind a typical push walker toy. She loved it! But as of today - she is not even wanting to stand up...let alone walk...that stinker! We have taken a week off of therapy between Christmas and New Year's and I think we are paying for it.

Preschool Preparation

Lily will roll out of First Steps (our Early Intervention therapy program) on May 13 - the day before her 3rd birthday. Life as we currently know it will completely change....we will be getting new therapists and Lily will start some sort of school. We had our first meeting in December to discuss the solutions. If Lily is not walking by May she will probably start something called the MOVE program. This program is an intense state funded program that helps kids to walk. I believe this would be for May and maybe some of June. Then there will be a gap before Developmental preschool starts in the Fall. We haven't figured everything out yet - but what we do know is that Lily cannot have a break from therapy....especially PT.

Aged and Disabled Medicaid Waiver

Our biggest news is that Lily qualified for Indiana's Aged &Disabled Medicaid waiver program this fall. I started this process last Spring because I knew we would need help when Lily turned 3. Lily qualifies for this program because she has a g-tube. Most waiver programs have a waiting list of over 10 years. This waiver program is currently open. It was supposed to take about 6 weeks to get through the process. It ended up taking about 5 months. We are extraordinarily blessed to have this assistance. It pays for all of Lily's medical bills and it provides us with a respite care nurse 60 hours per month. It will help us pay for any extra therapy outside of what Lily will receive at Developmental Preschool. This is the biggest plus for us. The nursing started in November right when we were having all of Lily's ear/sleeping problems. It has been great to have an extra set of hands 2 days a week...especially when Jason is traveling. If your child has a g-tube, I highly recommend looking into your state's programs to see if they have a program similar to this. I found out about it through an organization called ASK (About Special Kids)- they helped me fill out the other waiver applications and told us we qualified for this one because of the g-tube.

Speaking of the g-tube...Lily is eating very well by mouth during the day. She is now picking up her food and self-feeding! However, we are still tube feeding her in the morning and evening via the tube. I am still very grateful that we have the g-tube. There have been several times over the course of the last few months with her ears that we probably would have ended up in the hospital had we not had it. Lily still goes through spurts where she refuses to eat or drink...especially when she is sick or in pain. The g-tube has continued to be a blessing for us.

Well - that is about it for now. One of my New Year's resolutions is to be better about updating the blog!

God Bless You in 2010!

Here are a few pictures from the last few months! Lily got to visit her great-grandmother in Alabama over Thanksgiving and she saw many cousins! We also had a great time visiting Santa at the Children's Museum.

Big Girl Lily..Almost Two!

The last few months have flown by for us! Many "Lily anniversaries" have come and gone since the last time we posted. The anniversary of our 1st hospital stay came on Valentine's Day. The anniversary of our 2nd hospital stay and her g-tube procedure came in March. Lastly, the anniversary of Lily's diagnosis came on April 7. It is hard to believe it has been a entire year since we found out that Lily had 1p36. It has been a very fast and event filled year.

In the year since Lily's diagnosis we have seen amazing progress in Lily's abilities. Lily's most recent accomplishment is her vision. In December 2007 Lily stopped looking at us. She had trouble focusing on things other than flashing light toys. It was devastating to us as parents. We wanted our baby girl to see us, smile at us, respond to us. In February of this year we were blessed with an amazing therapist who specializes in Vision Therapy. This therapy has changed our little girl. She is now looking at her brother and sisters. She smiles at us often. She follows toys more readily. She is focusing on the sign language we are trying to teach her so that we can communicate. She still has a long way to go as these moments of vision are brief...but they are there and we are thrilled!

Lily's gross motor skills have definitely taken a backseat to all of her eating, speech and vision accomplishments. In March/April Lily decided that she no longer wanted to stand. She no longer was interested in climbing up the step from the family room to the kitchen. She started throwing her head back violently each time we would put her in a position she did not like. She threw a HUGE temper tantrum at the place that fitted her for a gait trainer. (a special durable walker).

It only took me a month to figure out the problem...Lily's shoes were too small. Yes- it seems like a simple solution - but Lily's feet are really little. She had been wearing a size 4. When you press down on the shoe it seemed like they still fit. But with her orthodics...it must have been too tight. We got some new shoes a couple of weeks ago. She only increased to 4 1/2...but that was enough! She is much happier and our PT is relieved! We hope to have Lily using her gait trainer by this summer!

We are back to teething again - 2 year molars. These teeth seem to grow in the middle of the night...like 4am. Tylenol is once again our close friend. I make sure to give Lily her favorite blanket as often as possible - so that she can chew on it instead of her hands.

Also- this spring Lily went on several new adventures. I have been keeping her close to home this winter trying to avoid the nasty germs. But on Spring Break I took a leap of faith and took her out! We experienced all sorts of new things. We took Lily and her siblings to the Indianapolis Children's Museum, Monkey Joes (bounce house place) and Great Wolf Lodge in Ohio. Lily had a blast and handled all of the noise and over-stimulation very well.

Next Thursday our baby Lily turns TWO! What a wild ride these last two years have been! God has taken care of us thus far...so we are going to continue to put our faith in HIM and see what the next adventure will be!

***Jason and I continue to work on this year's 1p36 Deletion Conference. We are currently raising as many funds as possible for the conference. For more information about the conference or to register please visit http://1p36conference.blogspot.com.

***Lastly, I would like to ask for prayers for all those 1p36 families who have lost their children this past year. These are amazing families dealing with great pain and sadness.

Lily Starts Hippo Therapy!

Lily started a new therapy on Wednesday - Hippo Therapy! Hippo stands for "Horse" in Greek. Lily will be receiving PT and riding a horse each Wednesday morning bright and early at 8am! We are very fortunate to have one of the largest Hippo Therapy facilities in the country near our house. We are also very fortunate that they offer a fee assistance program where we only have to pay a small portion of the cost.

Lily absolutely LOVED it! The arena where they have the horses is heated to about 40-50degrees in the winter. Of course our very first therapy was on the day of a big snow storm - and I bundled Lily up in about 3 layers.

Hippo Therapy is supposed to help with both walking and speech. They are not sure why it helps with speech. They think the part of the brain that is stimulated by the horse is near the "speech cortex" and it gets stimulated as well.

Lily spent about 15 minutes on the horse doing 2 different positions. Straddle and Side Sitting. She was babbling and making sounds the whole time! Afterward she got to play in the PT room and she rode a big green horse like swing. She laughed hysterically and signed more each time it stopped. It was very fun.

We are up to 2 PTs, 1 Hippo, 2 Speech and 1OT per week and 1 Nutrition every other week. A Vision Specialist came out to our house and evaluated Lily this week as well. She will most likely qualify for this service as Lily is still having a lot of trouble with eye contact. 2009 is the year for intense therapy for Lily. Our early intervention program ends at 3 and we want to make the most of it while we have it and while she is approved.

Lily's Busy Fall

Hi Everyone! Merry Christmas! I cannot believe we have not posted since September. We are so sorry. There is not enough time in the day to do all that needs to be done...so the blog has suffered. Many wonderful things have happened in the last 3 months - we have lots to tell about our Miss Lily!

Crawling!- October
Our biggest news is that Lily is now crawling! It is amazing how her motor-planning works. We show her the same positions over and over and over. Then all of a sudden something clicks. Once she figures something out - there is no stopping her! Jason caught her one day secretly moving in her crib - getting on her hands and knees and trying to go forward. But on Monday, October 13 - she moved on her floor in her bedroom - 3 crawls forward. I was there with the girls and we were all jumping up down screaming "She's doing it...she's doing it! ". Within two weeks she had put it all together and she was all over the floor discovering toys, cabinets, magazines, etc. She moves from room to room getting into all sorts of mischielf! I love it!!!!


Tall Kneeling - November/December

Lily is now tall kneeling (on her knees) all on her own. She started in her bed - reaching for the buttons on her mobile. Now she will get as tall as she can to get what she wants. It is awesome!. With her orthodics on her feet she can stand against a bench/table for a long period of time. A few weeks ago we took our PT down to our "scary" basement full of the older kids toys. The PT loves the train table for Lily. It is the perfect height for working on cruising. She puts a toy at one end and then moves Lily's feet for her to show her how to cruise.

We are also working on getting Lily to go up steps. She is having trouble getting from the kneeling position to standing and then putting her knees up. We just have to keep showing her over and over. She has the strength...just not the motor planning.

The Motherload of Teeth - October/November
Lily is getting 8 teeth all at once...yes...8. 4 molars and all 4 incisers! Needless to say it has been a very sleepless month. She has been sleeping a lot in our bed at night. We don't care where she sleeps as long as she sleeps. One week we were up 2-3 hours a night in the middle of the night. Lily never really cries unless there is something very wrong. She must be in a ton of pain. There are huge tears often.

Eating! - September/October/November/December
We started a new speech therapist at the end of September. She is awesome! She is so good with Lily. She is very focused on the eating portion of speech therapy. In the last 2.5 months she has gotten Lily from eating 1/2 jar of #1 baby food to eating small pieces of Cheerios, bananas, oatmeal, avocado and shredded cheese! Over the years our therapist has gotten 21 kids off g-tubes. I am confident that with time she will be able to do the same with Lily. We just were approved at our last big First Steps meeting to get an additional speech a week. So now we can focus one session on eating and one on speech! Lily is signing a few signs inconsistently - "more", "bye, bye", clapping. But she is doing a lot of mimicking- sounds we make with our mouths. She will say"ma" when repeating me and will make the same inflections as we do when we say "byiiiii". We also got a different high chair and it has made a HUGE difference in the way Lily eats. The chair fits her much better. A big thanks goes to Nana Cherryl for shipping the chair from Florida to Indiana.

Ear Infection - December
We are back to having crazy ear infections. The same ear that bothered her this summer is at it again. Lily has tubes. This kind of stuff should not be happening. There is no drainage from the tubes. She is currently on Omnicef. She is taking this one pretty hard and is in our bed now almost every night at some point. I am starting to think she really just wants to be close to me - which I cannot complain about. All last year she didn't even act like she knew me...so I really do like it. She goes to bed well for babysitters and my sister. But when it is my turn...nothing will do but me holding her! The doctor thinks maybe the tube is not in the right place. Once the infection goes away we are going to go get it checked again.

G-tube - September/October
When we were at the conference I mentioned to everyone that we were thinking about having a procedure done for Lily's g-tube granulation. After talking to several people at the conference including a developmental geneticist - we decided against the procedure. Instead someone from the Yahoo user group pointed me towards a newsletter than highlights articles about special needs kids. One of the articles discussed this compound of Chloestramyne (sp?) and Aquaphor mixed together. I called my GI doc about it and showed them the web site. They called it in to a special compounding pharmacy. This compound is amazing!! You should see her tube now. There is virtually no granulation at all. Goodbye horrid silver nitrate sticks!
First Haircut - November
Before Thanksgiving Lily got her first haircut. She was awesome! My hairstylist Lisa - who has a child with Down Syndrome came to our house to give Lily her first cut. Lisa was so patient and gave Lily a great cut! All of Lily's curls are coming out now...so cute!

Overall we are doing really well right now. This has been a really fun time for us with Lily. She is interacting with Nathan, Ella and Ava. They love to play with her all of the time. Ella thinks she is a little Mommy and would carry Lily all around the house if we would let her! Keeping Lily well has been our biggest challenge. She seems to pick up bugs so easily. We have her on Probiotics all of the time. We do not take her to any kind of daycares (gym/church). We have to be very careful where we do take her. Washing hands has become a full time job around here! We are keeping the soap companies in business!

We want to thank all of our family and friends for all of the amazing love and support you have given us this year. You all have carried us through this difficult and confusing year. Your prayers have enabled us to get through even the hardest of days. We love you and thank God for you every day.

We are looking forward to 2009 and the many surprises that await us. We feel that it will be a great year for our Lily.

Take care and God Bless! Merry Christmas!!

What a Month!!

The last month has been a series of ups and downs. We feel like we have been on quite a roller coaster with Miss Lily Marie. The fabulous news is that she is doing GREAT right now!! On our last post we were very perplexed by the enormous amount of pain she was experiencing. Finally after 2 ENT visits, 1 GI Nurse Practitioner and 1 Pediatrician we had a breakthrough. I have learned through this whole experience to not be afraid to be a pain in the rear to the doctors! I call them all the time! The GI nurses and doctors know us very very well! I called the GI nurse and told her that Lily was in pain and on Tylenol 24 hours a day. The GI doctor heard that message and he finally made the decision to put her on Keflex. Within 24 hours Lily was a completely different baby. Praise God!

We think whatever infection that had invaded her body had been manifesting for longer than we realized..probably about 6 weeks. Lily had not gained weight in 6 weeks and over the coarse of that time she had stopped wanting to sit, put pressure on her legs, put pressure on her arms. Once on the antibiotic she gained 1 lb in 2 weeks, grew 1/2 inch and her head grew! After gettting off the Keflex - within 3 days it looked like her g-tube was having problems again. So she is back on Keflex for another course. This time we have been using some probiotics in her formula with the hopes of not killing off all of the good bacteria from the antibiotics. We have also changed brands of tubes for the second time. We are currently using a Nutraport tube. The tube is much flatter and fits snuggly against her skin. We are hoping this will help with all of her granulation that forms under the tube. We don't like the extensions that go with it - they are hard to pop in..but if the tube is better...we can deal!

Lots of other wonderful things are happening now that Lily is feeling better. She got her orthodics and when in PT she is standing (while assisted) and doing all sorts of fun things. Lily has to wear shoes with the orthodics. Her feet are still so small. We had a pair of Ava's old baby shoes that fit perfectly with the orthodics and socks. Seeing her with shoes on makes her look so much older than before.

Lily is consistently signing "more" and we are working on Mommy, Daddy, Eat, Drink and All done. She really doesn't seem too interested in signing..but we do it anyway. She loves to clap and is putting things in her mouth a lot. Both our OT and PT are working on Motor Planning and Fine Motor skills. Last week out of no where she started to pivot while sitting! She did it all on her own. We were thrilled! Lily is also trying to stack blocks and manipulate toys. We really feel like cognitively she knows what she is supposed to do with a lot of her toys!

Lily is also starting to be more affectionate with us. She cuddled with me at bedtime and I thought I was going to burst into tears! It was such a wonderful moment. Those small moments of wonderfulness makes all of the bad stuff go away.

We are very excited for the month of September. Jason, Lily and I are going to Boston for the 2nd annual 1p36 Deletion Conference. We cannot wait to meet the other families and other children and to hear the speakers. This trip has been made possible by all of the generosity of our amazing family and friends. Their support both financially and emotionally helps us each and every day.

Lastly - today something very exciting happened! A few weeks ago two of our therapists told me about some $$ that the state had available for people who attend conferences regarding their child's special need. They strongly encouraged us to apply for this grant. So- I applied for a fund called the Family Involvement Fund. It comes out of the Indiana Institute on Disability and Community. I found out this morning that we were given a nice grant to assist us toward the expenses of our trip! This will help so much! Now some of the money that we were going to be using for the trip can go towards additional services for Lily such as Hippo therapy(Physical Therapy with the use of a horse) and/or the purchase of equipment for Lily such as a new stroller, etc.

The older kids are going back to school. Ella started kindergarten and Nathan is in 2nd grade. Ava goes back to preschool in September. Lily has been so patient going from one back to school event to another. She sits for short times in her umbrella stroller which really makes quick trips much easier for Mommy! All the kids love pushing Lily which is also a big help!