Walking Tall and a Birthday!

Romy received her super awesome, hot pink gait trainer not too long ago. The first time she was strapped in was pretty traumatic for her. She cried and cried and cried. For the next few days after that she would cry whenever she even laid eyes on it. I was beginning to think it was a lost cause but with the help of her therapists, we got her to try it out sans tears. She needed a LOT of help to walk in it, meaning somebody had to be behind her and forcefully make her legs take steps (this kid's muscles are RIGID) but, she dealt with that pretty well. Tonight I strapped her in expecting more of the same but willing to just let her get used to it more. However, Romy decided tonight would be the night she would take many steps all by herself. As in 14 steps. My baby is REALLY learning to walk! Her steps are very small and she's very timid, but I can see it in her eyes that she's so proud of herself. She still doesn't have much control as she hasn't figured out how to steer, but it's a really wonderful start. My Mother flew in last night and I really think that Romy was trying to impress her by taking steps in her trainer. Mission accomplished, Romy, Grandma was very impressed. We all are!

Last week Romy's future school held what I thought was going to be an IEP, but it turns out it was kind of a pre-IEP to even see if we needed an actual IEP. Romy recently had an IFSP done through Early Intervention so PT and OT decided to just go off of that report. (Sorry if this is gibberish, other special needs Mom's know what the hell I'm talking about) I've still got speech and a few other people to meet with but she's been approved to receive the same amount of PT and OT that she's currently receiving. I was a bit worried that they would try to decrease the amount as I've heard many horror stories, but i guess we got lucky. I'll keep everyone posted on the final therapy tally.

Today is also Raymond's 29th birthday! Happy Birthday Daddy-o! We really do miss you and wish we could be with you today! I hope your day is a great as it can be. We love you very much and can't wait to have you home! Be safe out there, Love.

Where'd My Baby Go?

 

That's a picture of Romy a day or two before we brought her home from the hospital. She was around 3 months old. I'm in such awe of how far she's come. She's a soon to be preschooler! I can't really wrap my head around it.

We met her future teacher last week. She seemed nice and very well versed in the special needs department. So far I'm pretty impressed with the program. Romy will be in a developmental preschool class. Her classmates will all be other kiddo's with varying special needs. Some might only have a mild speech delay or some might have CP like Romy. The really great thing is that each class only has 6 kids so they'll get lots of individual attention. She will have 1 full time teacher, 1 assistant teacher and 1 'floating' teacher who just goes around and helps out with all the developmental preschoolers. There's a nurse aid that will be there too. She'll be in school from I believe 8-2:15 Monday through Friday except for a half day on Wednesday. I was kind of surprised that it's an all day program, but I think once Romy gets used to being away from me, she'll really love it.

Her teacher said that they work a lot on potty training, which I think is fantastic! For a while now, Romy has been letting me know when she has a poopy diaper so hopefully she'll be receptive to the whole potty training thing.

Next week she'll be evaluated up at the school by all the different specialists to see what kind of therapy plan she'll be on. After that it's official. Romy is going to school! Whoa.

Ro Ro

My poor neglected blog. I'm not sure why I don't update as much, I just run out of stuff to say sometimes but, I guess that's kind of a good thing. No news is good news, right?

However, the Grandma's get a bit antsy when they don't get their fix of Romy pictures so, here you go ladies!




Romy is doing fantastic. She's been talking a lot more and repeating pretty much everything she hears. I was feeding her some mushroom risotto the other day and she said "Mama ssss goo." Which I think might translate to "Mama, it's good." I haven't heard it since but I was still pretty impressed.  She also got new AFO's! I think they're a much better fit than the last ones were. She tolerates them much better and rarely kicks out of them at all.


As many of you know, Romy will be starting school in January. Therefore, Romy needs her very first wheelchair. I've known this for some time but it didn't really hit me until one of her physical therapist's handed me a pediatric wheelchair catalog. It was kind of like a punch in the gut coupled with a mild case of vertigo and a bit of a cold sweat. "I'm picking out my child's wheelchair." I thought. "A WHEELCHAIR!"

Romy cannot walk. Will she ever walk? I think so. God, I hope so. Will she walk without the use of an aid? I don't know. Maybe. Hopefully. I thought I had come to terms with it, but at that moment I realized I had not. Boo.

Just to clarify, this doesn't mean we will stop trying to teach her to walk, we will still push her as much as she'll let us. She just needs something to get to and from the classroom, playground or cafeteria. Her teachers can't carry her everywhere. Not to mention that this kid WANTS to walk. She's determined and I think that's what will get her there. Determination, that's what my little girl is made of.

Anyway, if there are any special needs Moms/Dads out there who can recommend an awesome first time wheelchair, that would be awesome. We're looking for something manual and appropriate for a very tiny toddler. Thank you.

Now for the real reason you're here......pictures!

What? Can't a girl watch some SpongeBob in the buff

Romy, modeling the new line of denim print diapers.

The sweetest face I know.