Trinity is ON THE MOVE!!!

Trinity has decided that she is going to get around one way or another. She, with the help of her Physical Therapist, is butt scooting. Every single day that passes she gets faster and faster. She was doing laps around the living room last night and loving it!. Every time I looked up, she was somewhere different getting into something she should not be. We were not prepared for this. The house is NOT baby proofed at all. Last weekend, Matt got our special gate that we bought out and up. It is made out of mesh and all the metal poles are somewhat padded and covered in fabric. I am so glad I picked this gate. It works great and is somewhat safe for Trinity. (Falling onto it won't hurt as much.) She is still not interested in getting on her hands and knees. I'm sure it has something to do with pain. Although her PT disagrees. Who knows her better? Ummmmm, me!


We are getting close to our second home infusion. Which will be in two weeks from today. The pain that associates with the treatment's wearing off is starting to show. She is started to sleep poorly and not wanting to move much. Her butt scooting is actually starting to get slower and less of it. Plus, it is rainy today. I have noticed that the weather plays a big part in her pain. We will medicate for pain and keep doing what we can until we can get our miracle drug as they call it.

Tysen's 9th birthday is in 2 days. He is very excited and keeps asking if he can get presents early. NO WAY JOSE!!!!! He is having a bowling birthday party this coming up weekend. It shall be fun.

Last week, we all ventured to Sandusky, Ohio for a mini vacation. We were suppose to go see our dearest friends, The Busby's, who live in Alabama. Due to numerous circumstances, we just couldn't do it. I was really bummed out! I personally was really looking forward to actually meeting them face-to-face. And having the privilege to play with Rhae, a one year old little girl that has stolen my heart. Oh well, maybe this summer. Anyway, we went to the Cedar Point's indoor waterpark. Mainly for Tysen, but I knew once Trinity got in the water somehow, she would enjoy herself too. I was a little worried about it being less "OI baby friendly" but was actually very surprised. The toddler area actually had foam on the floor in different places around the whole pool. It shored so Trinity actually got to sit by herself on this foam and play in an inch or so of water. SHE LOVED IT!!!! I had such a hard time getting her out. She was literally blue in the lips and shivering but still kind of fought me when I took her out. Tysen had a great time. He did everything they had to offer and I got some great pics. All in all it was a great time.

We did get a great visit from my aunt Janet who lives 20 minutes away. Although the circumstances were not that great, we still had a great time with her. She has this way about herself that just brings a smile to your face. I have some great memories from my childhood about Aunt Janet. Always smiling and always FUNNY!!! I love her and I love the fact that she drove 20 minutes out of her way just to make sure we were ok. I had a great time even though we were in the Emergency room. Now I got you wondering, don't I?

Well Trinity couldn't help herself and decided to roll off the bed at the hotel. I was by myself, while the boys were still in the waterpark, and trying to get her down for a nap. LUCKILY, God has her in His hands. She feel between the playpen and the bed (8 inch gap) so the playpen must have slowed her down. She fell onto the waded up hotel comforter which I must say was kind of nice. After assessing her, I noticed her neck was a little sore. I felt that for some reason, I needed to take her in. She wasn't moving her right arm that well either. But after a couple of hours that seemed to be ok. At least not a BAD break. After a CAT scan, (try holding down a screaming baby with OI while trying to keep her completely still...impossible) which took an hour, but finally I got the staff to not touch her at all and let her be unstrapped while I talked and sang to her, we finally got some kind of a decent picture. From what the ER doctor was saying there was no spinal injury. With a tip from my fellow OI mamalion, I am going to send the CAT scan and the radiology report to Dr. Esposito in Omaha. (The Greatest OI orthopedic doctor in the world.) Just to have him look at it again and get a second opinion. Just to make sure that experienced eyes look her over. We will see.

So, all-in-all, it was a great time. Even with the 4 hour visit to the ER, we woke up the next day and spent 7 hours in the waterpark. Trinity had a BLAST and so did Ty. By the end, we were all tired and ready to go home. I am so glad we were only 3 hours away from home. It is nice for a change not having to drive so much!!!