Cast off!

What a week! 
As you probably saw, the cast came off last Friday. This was not exactly what the Dr wanted, but I fought to get it off since the X-rays do show that her bones are healing. The reason I fought for this was because in all my reading the most recent recommendations for kids with OI is to cast for the shortest amount of time possible. This is to preserve as much muscle as possible and thus reduce the risk of further fractures. This sounds great and makes sense, but also scary since her leg is not as protected as it was in the cast. We now have it in a splint which still offers some protection yet allows Suzie to have more movement. Taking the cast off was quite traumatic - I’m pretty sure she thought they were going to saw her leg off. There was lots of screaming & tears.

She now seems good during the day but has had some aches and pain at night, which I’m told is common after cast removal.

We had more appointments after she had her cast removed and were at Children’s Hospital for about 6 hours. The most interesting part was that we found out that our special girl with a rare disorder has a rare form of this disorder. She is Type 8, with two heterozygous P3H1 variants. This means she really is one in a million! It also means that it is very unlikely that she would pass this on to her kids if she ever has any. 

The other big update is that yesterday Suzie was at daycare ALL DAY!!!
Since I go back to work tomorrow, we made the jump from being there 3 hours to all day and she did great! She ate lunch and even napped. I was home awaiting a text to come get her and it never came. Both Brian & I were blown away. She’s there again today & we feel that our prayers have been heard. Amazing!

not excited about the doctor 

2 Months

Time is flying! I go back to work in one week from today and I will dearly miss my days with little miss Suzie! We’ve gotten on a good routine and have enjoyed the beautiful spring weather with walks almost every day. She’s spoiled me! 

We have continued to extend her time at daycare and she was there for 2.5 hours today! It’s going great and the other kiddos have been so welcoming and helpful with her. She still has ups and downs while there, but nothing extreme and she has been either happy or at least content every day when I pick her up.

She’s also getting more adventurous with her eating and has accepted some more American foods like garlic knots, any kind of chips, smoked chicken, lasagna, and cole slaw. When she’s really likes something, she says “momma thank you” after she takes a bite. 😆 Don’t worry, she already eats plenty of fruit and vegetables too.

Last week Addie had an appt to get a physical and her vaccinations for middle school. Suzie was with us and clearly thought we were at the Dr’s office for her. When we said it was time to leave, she perked up and happily told everyone goodbye! It was great for her to see that the doctor is not just for her.
This Friday she has her Osteogenesis Imperfecta clinic day at Children’s Hospital and her cast will come off, but we’ll see if it will need to be replaced or not. 🤞

That’s it for now!

bundled up for Addie's game

getting comfy waiting for momma

washing her hair

DAYCARE?!!?

Major update here: I am typing this in the car while Suzie is at daycare!!! 🙌PTL!!

This week I started dropping her off rather than just visiting and we are on day 3! We started with 15 minutes, then 30 and today it’s 45! Our daycare is THE BEST. It’s a husband & wife team (I just LOVE that!) and they are so patient, caring and organized. It’s so calm just walking into their home. Suzie knows their names and when I tell her we are going there, she calms down and seems to want to go. She still cries when I leave of course, but they are quick to distract and entertain her. She even texts me to know that it’s going fine! 💕

Also, this weekend we turned a corner. I’m not exactly sure what changed but Suzie started to be happy and show her fun, silly personality again. It also happens that I had a big change in my own mind set last week and made a mental decision to put on a happy face and be over the top fun each day with her no matter how I really felt. 

Whatever it was, Suzie is happier, eating better and is even moving around a bit despite her cast- crawling, scooting on her bottom and even rolling around. It’s pretty funny to watch her clunk around with the cast! I’m so tempted to help her more but this girl thrives on independence and is loving having some mobility again. It’s obvious that she’s feeling better and it’s helping our outlook too! 
Thanks again for being our cheerleaders!

not wanting mommy to leave

at Addie's volleyball game

really not wanting mommy to leave

6 Weeks Home!

Time for another update! It’s been 8 weeks as a family, 6 weeks home and 2 weeks in the cast. Ugh, that stupid cast!! 

Things are...ok. I have not taken many pictures since the last update because I am holding or wearing Suzie at almost all times. Since her fracture she has been even more attached to me and wants me to hold her all the time. Even while I am holding her she will cry and keep asking me to hold her! This has been my exercise and my front and back are bruised and sore from the cast digging into me. Thankfully she fits in the carrier and it has a little pad that she sits on relieving some of the pressure.
We’ve had several more appointments and had her cast adjusted to line up her bones a little better. This added a pretty pink stripe to the cast. 

We have been visiting daycare for weeks and it was going really well. I go back to work in 3 weeks so we need to get her comfortable without me. I left her twice this week for 10 and 15 minutes and she cried the whole time. We will keep going for short periods but I can only ask so much of our daycare provider! Brian is our back up plan so our attention has turned to forcing her to be with him. Yesterday Brian had me take the big kids to a movie while he watched her. She cried almost the whole 3 hours. She only stopped while on a walk (until it rained) and when Brian started to put the carrier on, she stopped just enough to tell him “No.” However as soon as I got home she was fine- didn’t need any recovery time and was eating and happy. She doesn’t know it yet but she will have time alone with Daddy everyday and hopefully will learn to love it!

first night away from Suzie 

worn out from cast adjustment