Chronicles of our 1p36 Deletion Angel - Sharing the life of our sweet baby sent to us directly from Heaven.
Friday, September 3, 2010
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!