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 GaloreRight 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 PreparationLily 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 WaiverOur 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.
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!
