An Early Christmas Present! - Lily Walking

Lily has been making tremendous progress on the walking front over the past month. Her PT Polly has done a fantastic job and Lily seems to absolutely love being able to walk and explore new places.

As any home, we don't have long stretches of areas where Lily can do a bunch of walking without having to turn around and start heading back. This Saturday, we visited the Children's Museum to see Santa. At that visit, Lily really got to take advantage of lots of open spaces... she walked and walked and walked.

We were blessed to have our whole family with us as well as Nana and Papaw Friedman. It was a neat experience for all of us to share together with Lily-cakes! She is our angel.

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!

Registration Underway - 2nd Annual 1p36 Scrapbook Fundraiser

We are currently taking Registrations for the 2nd Annual 1p36 Deletion Scrapbook Extravaganza Fundraiser! Last year we raised almost $2000 for the annual 1p36 Deletion Conference. We would love to match or exceed that again this year!

To Register for the 2010 1p36 Scrapbook Fundraiser - please send Julie an email at hungrydawg@gmail.com You will receive a Registration Form with more information.

2010 1p36 Scrapbook Fundraiser Details:

Date: February 20, 2010
Time: 9am-6pm

Where: Carmel Lions Club - Carmel, IN
141 E. Main Street

Cost: $45 per person ($35 if you register by February 13th)


Food:
**Starbucks is donating Coffee and Pastries!
**A McAlisters Deli Lunch will be provided (including Sweet Tea!) !
**Drinks and Snacks will be provided throughout the day!

Two Creative Memories consultants will be available all day. They will bring their tools that will be free to use including a Sizzix. All profits made from product purchased and ordered the day of the event will go to 1p36 DSA!

There will be a Digital workshop during the day to help teach people about digital scrapbooking. Even if you are not interested in traditional scrapbooking - you have pictures on your computer and need to do something with them!

For those who cannot attend the event but would like to donate to 1p36 DSA please go to: www.1p36dsa.org Donations are tax deductible.

1p36DSA has their 501c3 status and can take company matching donations. If this is your situation - please make sure you contact someone off of the 1p36DSA web site for more information.

The 2010 1p36 Conference will be in Salt Lake City, Utah July 29-August 1. For more details visit http://1p36conference.blogspot.com

A walkin' Girl!

This past Tuesday morning, after a week and a half of Lily refusing to walk at all, she proceeded to the basement and cruised all over the place in her walker with PT Amy. We were so thrilled!

Check out the quick video clips below.

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.