Almost done!

A little over a week and I will be a college graduate! It has been a long road but I feel so accomplished. The only thing between now and then is about 400 nclex questions, 3 days of nclex prep, and a 12 hour clinical day tomorrow. I will be running down the aisle to get my diploma and then running to the airport to catch our flight to Paris! I cannot wait to spend 2 weeks away. France and Italy, here we come!

As for Lilly news… She is officially high speed crawling and pulling up on everything to stand. I am thinking no rods at this point. Dr. Esposito agrees but wanted x-rays to confirm. Still waiting to hear back. Lilly amazes me every day with her abilities. I truly think the swimming every Friday night makes a huge difference as well as her infusions. She is so strong. Her PAM infusion was scheduled for today but I guess the medicine was backordered so we have to wait until next week.

After a month and a half I finally heard back from the insurance company. She was approved… at tier 4. Their reasoning was the OI, infusions, and low weight. The first two, fine but low weight!?! Are you kidding me? Had I quit school or not gone at all, we would be screwed as far as insurance goes. Group insurance is our only hope at this point.

We are officially going to the OI Convention in Washington DC this year. I am so excited to learn and meet all of our friends from across the US. I am also excited to start becoming a stronger voice in the community for OI. There are a lot of great projects that are in the works. I am shocked by the amount of medical professionals who look at me funny when I say Osteogenesis Imperfecta and even brittle bone disease. Hopefully that will change as we begin educating and advocating more.

Speaking of advocating: What are you wearing on May 6 for Wishbone Day? I can only hope my friends and family help us advocate by wearing yellow. It’s one day of the year and I’m sure you have something yellow in your closet. Show your support by wearing yellow! 

Surgery Update!

As we were getting ready to walk out the door last night the phone rang. It was the doctor calling about Lilly’s surgery. It may not happen, at least not yet!!! She is breaking far less than expected. He is ordering certain x-rays to check her legs but as of now-no surgery.  He suggested that we get a second opinion from Dr. Sangimino at West Penn but I’m still fighting insurance. Today I am going to apply for Highmark even though I was told I would likely be rejected. It’s worth a shot! It’s a shame that I am begging someone to accept her but am being told to freeload off the government. Welcome to America.  

We are still going to Omaha for clinic on June 28. Since Justin is taking 2 weeks off for vacation in May, my dad is going to drive out with me. Driving is much cheaper! It’s about 17 hours but we will leave at night and Lilly will sleep most of it, hopefully… 

Well I am going to fill out this insurance application. Fingers crossed!

9 Month Check Up

Just when you think everything is under control, everything changes! Well as many of you already know, CHP has terrible OI care. Wait let me rephrase that, they have no OI care. This is the reason we get our major treatment from Omaha. Dr. E wants to rod Lilly’s femurs sometime around May-June but I am a little uneasy. I know he is world class and an OI expert. Maybe I am being paranoid because it is surgery and my baby will only be 1. The biggest doubt was put in my head by CHP. He basically told me I am crazy if I allow them to rod Lilly which I know isn’t true but that stuck with me. I am just so bothered by his arrogance but then again it made me feel like I should get a second opinion regarding the rods. 

Today was Lilly’s 9 month check up. I told her pediatrician about it and she thought it was a good idea to get a second opinion. So that leaves me searching for another doctor. She suggested Shriners in Erie but I feel like I should make the drive to Montreal. I will have better peace of mind. I am also back to looking for local ortho doctor. I just do not see the point in going to CHP. We agree on nothing so it’s a waste of time, money, and radiation. The one thing I am thankful for is having the most amazing pediatrician in the world! I literally could not ask for a more humble, nice, awesome doctor. 

Lilly got a shot and her iron and lead tested. Iron looked great! Her stats were 26.5 inches and 14 lbs.

I don’t think I have posted since but… we have 2 bottom teeth!!! One right after the other.  So far she said they look great. We aren’t 100% sure but we don’t think the OI has affected her teeth. That was music to my ears. 

Lilly is napping so mommy is going to clean! 

Another visit to CHP

So I am thinking that I’ve gone into the wrong profession (nursing) because I strongly dislike hospitals and most doctors. I am tired of being told that I’m an idiot and I’m wrong. I think my first question from now on will be, “how many OI children have you seen in your lifetime”.  Every time we have seen a resident, they have been great but as soon as the attending comes in, completely different story. I have been told that it is impossible that anything is broken because she is so happy. Um, yes. My child is one of the happiest babies you will ever meet and does not cry much even when in pain. The past two breaks the attending didn’t even come back because once again, I proved them wrong. I cannot stand being made to feel like I’m an idiot about my own child. I live with her, you don’t so PLEASE do not tell me something is wrong and impossible. Just because you have MD by your name does not make you smarter than me when it comes to Lilly. Also, if I am bringing my child in for a fracture, why isn’t she given any pain medication at all? We arrived at 1:20pm. Finally after 6 hours, they bring in a prescription for ibuprofen.  No… I want the medication NOW. I am getting beyond frustrated with Children’s.

Well that was my vent but the story is….

Lilly was super fussy the past few days which is not like her at all. Certain ways that we would move her, putting her in her car seat, or lifting her butt to change her diaper made her really uncomfortable. She wants to stand and sit lately so I was thinking possibly a compression fracture or something in her hips. Instead of just doing an x-ray on what we suggested, they did the full body which was actually okay because it’s time for her check up with her local doctor. The said everything looked great except a possible fracture in the right femur. They wanted another x-ray to double check. They weren’t positive but put a harness on her to be safe until her doctor came back from vacation. I wasn’t a fan of it because it’s so restrictive but it was only for a few days. 

Monday morning we woke up and she had the straps off and they were digging into her skin leaving red marks. Called the ortho on call who happened to be the doctor who saw her Sunday night. He said the second set of x-rays are questionable so I should take off the harness completely and see how she does but to come back with any sign of discomfort. It’s been 24 hours and she is okay. I am still thinking there may be a small fracture especially since it’s the right femur which is the worst bone in her body. If so, hopefully it’s a quick recovery. 

I did call Omaha and they said rod surgery between 11-13 months meaning April-June. We are going on vacation in May so I am probably going to schedule end May-beginning of June. 

Well that’s all for now. Friday is her appointment with her local ortho so we will see what he has to say! 

We Have A Talker!!

I set two goals for winter break.
1. Lilly could crawl
2. Lilly would say "ma ma"

The crawling didn't go so well. She gets so mad and keeps trying but just can't do it. I don't really want to force her legs into position and break anything so I didn't push it. She'll get it someday! As for goal #2...

 

She found her voice a few days before my break was over! Mission accomplished!

Positive Spirits!

This past Saturday I got to spend the day with someone who also has a child with special needs. It felt GREAT! I love all my mommy friends but sometimes it’s nice to talk with someone who truly knows and understands what you’re going through. I’ve realized that my baby may not qualify for the basketball team or never be able to play contact sports but that’s OK! I look at it this way- how many people get to go swimming every week with their kids and watch them have a blast in the pool and it be called “therapy”.  STAY POSITIVE! That’s what I need to keep telling myself.

I’ve been on break for the past few weeks and it has been great! She isn’t sleeping past 6 but I wouldn’t trade it for anything. I’ve been working so hard trying to get her to crawl or say mamma but I don’t think it’s going to happen before I go back to school. She is waving hi now though! Any OI moms have suggestions on crawling- let me know!

Also, not sure if anyone remembers me talking about From Z With Love but what an amazing family! They sent us a huge care package full of things for Lilly after we found out about her OI.  The Mendez family welcomed Zayana Grace into the world on December 23 of last year. They only got to spend 16 weeks with their little girl. Since her passing, they send care packages to new OI families of some of Z’s favorite things. On December 23 of this year, they delivered a cartload of items to the hospital that Z was in.  Here was the news story on them: From Z With Love It’s a shame that more people in the world aren’t like that!

Well that’s the latest on us! I must go wake Lilly from her nap otherwise she’ll wake me at 5am!

Quick Update

It’s been a while since I’ve updated.  Being a full time nursing student and mommy means no free time! Thankfully I only have one semester left and I will have my BSN!

Lilly is doing great. Only 1 rib facture since my last update. She got a really mild cold and it was bothering her way more than it should have. That was how we discovered the rib fracture.  

She started doing Aqua Therapy every Friday night through Early Intervention. That girl is a fish! She LOVES the pool. She kicks and splashes the entire hour. The pool has some jets and a current that she swims against. We can already tell a huge difference in just a few weeks. She started sitting on her own more and wanting to stand on our legs. The increase in muscle strength is incredible. Not to mention it’s a good exercise for mommy and daddy!

We are still working on crawling. She knows how, she just can’t do it and get frustrated. Instead she rolls all over the house to get where she wants. Hopefully by Christmas she will figure it out.  Enough with the update, here is the best part: pictures!

Also here are her proofs from her 6 month pics: Click On Expressions Photography

Old Pic I Just Found... He fought a hard 9 months to meet Lilly. Miss you every day Grandpa.



Look At Me Swim!!!