Lilly's World: September 2011

Omaha=Success!!!

We flew in Tuesday late night. Flight went okay other than my mother and I not sitting together but Delta gave us $100 towards our next flight because of this so I can’t complain!

Wednesday morning Lilly got a DEXA (bone density) scan. We didn’t need to get additional x-rays because she just saw the ortho doctor in Pittsburgh for a follow up and got a copy of the x-rays there. Afterwards we decided to check out the Old Market. Not sure what all the hype about it was. It was NOT stroller friendly. There were some nice shops but overall not worth our time. Then we decided to be stalkers and look for Warren Buffet’s house- there’s not a whole lot in Nebraska, haha!

Thursday was clinic. Lilly is a movie star! They were filming a piece for Dr. Esposito to use during conferences and things and they filmed Lilly for a while. PT/OT met with us then. They asked what all Lilly could do. Really she can do everything she should be at this point except holding herself up while on her belly and rolling over. I think Lilly heard me and thought “I’ll show you” because as soon as we got home she did both perfectly like she had been doing it for weeks, ha.

We then met with Dr. Esposito. Found out he is originally from Punxsutawney, what a small world. He went over all the X-rays and DEXA with us. Lilly had another fracture in her right femur that we didn’t know about. The only thing I can think of was about 2 months ago she was pretty fussy. We thought she was starting to get colic but then it went away after a week. I don’t know how we missed it but it healed well. The DEXA was more of a baseline for next year. Her femurs are bowed 60*, they want them under 30* so that means she will get rods in them. Based on how she moves & is doing he thinks she will be an early walker so we need to call as soon as we see signs of her wanting to walk. If she puts much weight on her femurs they will probably snap so we want to avoid that.

We met with a nutritionist. She suggested that we start Lilly on Vitamin D. Neosure doesn’t provide enough VitD for her age. She also said we could introduce Stage 1 foods. I did some apples and bananas. She loves it but I don’t give it to her every day.

Dr. Lutz and his group came in next. They are starting her on Pamidronate every 2 months. Her first dose will be over 2 days. They said she can have flulike symptoms the first time but that is it. Each dose after will only take a few hours in an outpatient setting. They contacted our pediatrician and are setting everything up. Hopefully we can just get it done in Indiana.

A dentist met with us. There wasn’t much she could do at this point other than talk to us. Babies with OI typically have dentinogenesis imperfecta (abnormal dentin formation) so we need to make sure we take really good care of her teeth.

Lastly we saw a social worker. We pretty much have everything we need right now except for early intervention. Someone will come to our house and evaluate her to see what services they can provide. I’m not really sure what is all involved in that. She also mentioned that our transportation can be reimbursed for going out there but I have no clue how to go about that.

Friday we just drove around. We were going to go to the botanical gardens but it was a really cold/rainy day. We went shopping & to Cabelas. They have an aquarium there and Lilly loved looking at the fish.

We had a great trip and will be going back once a year and then for surgeries. I was really happy with the care that she got there and how great the doctors were with her! I can tell that she is in good hands finally. The insurance battle was well worth it!

We did have a scare this past Friday night. Lilly found her toes and loves to pull on them. It makes me nervous but I can’t really stop her. Well she was on Skype with her nanna and I heard a snap and she froze and started to scream. We went to the hospital and thankfully there was no break! She probably just popped her hip out and it really hurt or her growth plates shifted and it hurt. She’s fine now thankfully!

Well that’s the latest on Lilly!

I Love Airplanes!

All Dressed Up For Clinic

This Is Exhausting!

ZzzzZzzz

Representing Pittsburgh

Mommy Had To Buy Me A Hat. Brrrrrrr

Ready To Go Home With My New Toy

Newest Family Pic: With Mommy and Daddy At Uncle Zach & Aunt Elicia's Wedding

It’s been a while since I have updated. So much has happened and thankfully it’s all good news!

Aug 19- We went to see her orthopedic doctor at Children’s Hospital for a checkup. There were no fractures that we missed! I said from the beginning that I was going to prove him wrong with his “I won’t be surprised to see you before your check up” comment. Although that usually would be true with an OI baby, I didn’t feel that was appropriate to say to a new mother. From the x-rays he said it looks like her legs are straightening out a little and the bone density looks a little better. Finally a happy appointment!

Lilly is about to go on her first airplane! Lilly’s Nana and I are taking her to the OI clinic at Children’s in Omaha, NE. She will get testing done on September 14 and then go to clinic on the 15. She will see several doctors, nurses, physical therapists, occupational therapists, and nutritionists. I am so happy that she is going to get proper medical attention. Children’s Hospital in Pittsburgh is fantastic, one of the best in the country actually, but not for OI treatment. A hospital can’t specialize in everything even though her doctors won’t admit to that.

Aug 22- My last first day of school. Only a few more months and I’ll have my Bachelors of Nursing! There were a lot of tears shed. I just spend every day for the last 3.5 months with Lilly and now I can’t do that. I have to keep telling myself that she is with the best daycare possible. Monday, Tuesday, & Friday= Grandma & Grandpa. Wednesday & Thursday= Nana & Pap. I’m glad that Lilly is going to get to spend so much time with her grandparents. It’s also a lot less stressful to think about how a daycare would handle her.

Lilly just had her 4 month checkup and vaccines. She is 9lbs and 21.5in. Her head circumference finally made it into the “average range” so the pediatrician said that the rest of the body follows right after. My little 4lb3oz baby is growing! I was told to start her on cereal. I read a lot of info about rice cereal causing constipation so it’s not good for babies who are already constipated. I decided to start with oatmeal and she loves it and seems to tolerate it ok. They say that cereal doesn’t help babies sleep at night, I disagree. Mysteriously she slept all night and she certainly wasn’t sleeping all night before. Yes, every baby is different but it definitely made a difference with Lilly.

That’s pretty much everything for now! I will of course update about our Omaha trip. Thanks to everyone who has been so supportive of us and a special thank you to my professors who are giving me the time off to take Lilly to Omaha and even my friends/professors who are organizing a fundraiser to help!!! You guys are amazing and we appreciate it more than you will ever know.

Here is the link about the OI Clinic she is going to.

http://childrensomaha.org/body.cfm?id=1926