3 Months in the Making - Lily Climbs a Step!

Yehaaa! Another milestone met!

For the past three months Lily has been trying to scale the single step from our family room up to the kitchen area. What seems like such an easy task for the rest of us, was, and still is, a big challenge for Lily. She kept working at it and finally did it on Thursday of this week!

Many people have asked about Hippo therapy and how it is helpful. This milestone was met the day after we had Hippo. Our PT feels like Hippo has been very helpful and we have only been 3 times! With Hippo Therapy we have PT 3x per week and it has been wonderful for Lily's gross motor skills. On Wednesday in Hippo, the therapist had Lily standing on her horse! It is was like watching a circus act! Also at Hippo they had Lily climbing up onto mats and walking in a special walker. We are thrilled with this therapy and recommend it to everyone.

We are also adding another therapy to our case load. We just got approved through our early intervention program for a Vision Specialist. She will work with Lily on her visual tracking and attention. Lily still does not look at us very well and uses alot of peripheral vision. We are struggling getting her to sign and hope this may help. Our OT and ST were instrumental in getting this needed therapy. We start it next week!

Here is a video of Lily going up the step!

2009 1p36 Deletion Support & Awareness Annual Conference

The 1p36 Deletion Support & Awareness organization will be holding it's 3rd Annual Conference on July 31 - August 2, 2009 at the Embassy Suites in downtown Indianapolis, IN.

This is a wonderful opportunity to meet other 1p36 families and develop friendships that are sure to last a lifetime. Julie and I attended last year's conference was simply wonderful for us as we got to meet so many families that are just like us... with little angels sent to us from heaven. We are so excited about this year's conference, not only because it is in our back yard, but because we look forward to seeing our friends again and meeting even more!

See below the post the planning committee published on the Yahoo! Forum about the conference.

http://health.groups.yahoo.com/group/1p36_Deletion_Syndrome/message/17230

See below the link to the files regarding the conference.

http://health.groups.yahoo.com/group/1p36_Deletion_Syndrome/files/1p36%20Conference%20Information/2009%20Conference/

We encourage all 1p36 families to attend the event this summer. Lily cannot wait to see her friends!

Peace, J&J

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!!