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!!

1p36 2008 Conference

We are exhausted from a wonderful day at the 1p36 Deletion Conference 2008 in Boston. It was a great experience and we met alot of amazing people and even more amazing kiddos! They were all so sweet.

The day started with breakfast and showcased 3 great speakers throughout the day. To see some notes on each speaker, visit Nate and Melanie's blog. The conference ended with discussion about the date and location of next year's conference. Indianpolis, Utah and Oklahoma City were the final candidates for 1p36 2009.

We capped a wonderful day with a great Italian meal with our new friends Stephen, Karen and Aiden (1p36) from New York.

More to come tomorrow. For now... some pics from the conference today...

A True Blessing!

It's Friday evening and Julie, Lily and I are winding down from our day of traveling to Boston. We had the opportunity to have a brief Meet-n-Greet with a bunch of the other 1p36 families and kiddos. Wow!... we are so blessed to have this amazing group of people!

While we are still letting it soak in... we are humbled by the sense of peace and comfort we have for the folks we met tonight. We are not alone. The 1p36 families we are meeting this weekend are special people who know exactly what we are going through and will support us along our journey. Of course our family and friends will support us as well, and we love and cherish them for that support, but there is no substitute for people who are caregivers of children with 1p36 Deletions. Each and every one of them is raising a sweet little angel just like Lily.

We did not quite know what to expect as we walked into the room at the Meet-n-Greet. We were so eager to hear about everyone's experiences with their 1p36 angels. It was great! It was also kind of funny in that we were meeting people we have read about and chatted with via the Yahoo Support Group or their Blogs for the past 5 months. We felt like we were backstage at some rock concert getting to meet the performers.

"Look Julie, over there, it's Nate, Melanie and Whitney!... he's like the Founding Father of 1p36 Blogging... and he's 15 feet way from me!" I felt like walking over to Nate and asking him for his autograph!

The power of the Internet is really remarkable. Going back to that day in April when we got the call about Lily's diagnosis, I pulled up Google and typed in 1p36 Deletion. One of the first pages I found (after all the scary stuff that told us how bad off Lily was going to be) was Nate and Melanie's page about Whitney. Here was a real family who has already gone through what we are going through. They were telling their story openly, posting it on the Internet for others to share and providing a quick glimpse as to what we might expect. Through their posts, we realized it was going to be OK. How cool is that?!

It was a real treat to meet Nate tonight, shake his hand and thank him for the comfort he provided us in our difficult time. Pretty special. Looking forward to tomorrow.

As for the travel, Lily did great! No problems on the plane whatsoever. Julie bought her this $5 toy that lights up and makes noise. It fascinated her the entire trip. Best $5 we ever spent. Smart Mom. More to come on Saturday.

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!