Monthly Archives: March 2015

The moment when someone else notices your child’s disabilities

I take Colbey Raye out in public A LOT! I always have, it’s always been extra hard for me to leave her with anyone (even my husband). This has gotten better, MUCH better and I have left her with a baby sitter once or twice and my parents, inlaws and aunts a few times too. But I like her with me, incase of that dreaded “what if?” Anyways back to what I was trying to say, I take her out and about a lot! Between therapies, doctor visits, store runs and so on! And I’m usually holding her because she can’t walk, or she’s in a stroller, shopping cart, front pack etc… But today we went to the children’s museum, and she was free to roam around without being held, tied down or strapped into something! She had a blast I have to say! And this is her 3rd time there, but today someone noticed her, and said something. Colbey Rayes inability to walk has been noticed, and as soon as a person realizes how “old” Colbey Is they say “she doesn’t walk?” So I explain. Or they try to hand her something and she reaches all around twisting trying to grab it and they say “why doesn’t she use her right arm?” Those types of questions I’ve gotten, here and there. But yesterday the conversation I had was different than any other. The question this lady asked, and the statement she made was a first for me, but probably not the last time it will happen. Our conversation:

Lady: you have three? Three (pointing at Austyn Jayne)?

Me: yes, three, and yes she’s three almost four.

Lady: two (pointing at Colbey Raye) and ? (Pointing at Beaden).

Me: she’s almost two and he is 4 months.

Lady: what school does she go to?

Me: (thinking she is talking about Austyn Jayne) I explain that we do preschool at home, and haven’t decided what route we want to take yet when she is “school age.”

Lady: Olympia?

Me: no lacey. 

And then I realized, she was not talking about Austyn Jayne. She was talking about Colbey Raye! So

Me: are you talking about her (pointing at Colbey Raye)?

Lady: yes. Is she getting support? She needs some vision assistance.

Me: well yes, she does OT and Pt twice a week and has Speech once a week at St. Peter’s pediatric therapy center.

Lady: so she doesn’t get any help at home? Because she clearly needs support. Is she part of the birth to three program in your school?

Me: she is part of the program, and she has a cognitive teacher and vision teacher that comes to the house once to twice a month. But we have had a lot going on and her teacher is on maternity leave so we haven’t seen anyone from the program in a while. But she is getting a lot of outpatient therapy.

Lady: okay, good. So she is getting some type of support. That is good.

I explain that she had a hemispherectomy almost a year ago, and she went on to ask why. Come to find out she worked with visually impaired children as well as a psychologist for rare mental disabilities. I know she was probably trying to help, but does she think I’m oblivious to her needs? I know she needs extra help, support and assistance, and I bend backwards to get her all of the help I can get her. no one has ever told me my child needs assistance before now. It’s never come from someone as “a matter of fact” statement. I get questions like why she doesn’t walk or talk at 2! But no, “your child needs more support.” I knew it would happen one day, when Colbey Rayes set backs were more noticeable, but it was a lot harder for me than I thought. Yes, I know she has some delays and no she can’t see well, but I’m doing the very best I can for her! And she’s doing GREAT for all she’s been through. No she doesn’t walk, she doesn’t say many words, her favorite game is sit “I throw it and you pick it up for me and repeat.” But she’s come so very far. For having 2 brain surgeries, countless seizures, being on so many meds, I think it’s fair to say that Colbey Raye has overcome and accomplished so so much!! We know she “needs assistance” and with therapy 5 times a week, spending weeks in rehab and going to weekly appointments in Seattle I think (not to pat my own back) we are getting her the support she needs!

Colbey Raye is doing so well! She’s standing better each day, pulling her self to her knees and even trying to pull herself all the way up to standing! She has been having some different issues, some facial weakness again continued minor staring spells and circulation problems but all in all she is doing really good. She has begun to play more “appropriate” with toys and loves baby dolls. She’s always on the go, trying to keep up with big sister and she’s very busy learning! We are so proud of how far she has come, and we can’t wait to see how far she will go! She will run far this girl, my sweet tough little girl! 



 3 weeks back home

Colbey Raye has been home for a little over 3 weeks now. After 3 weeks in intensive therapy what I difference we see in her behaviors at home. I cannot begin to express how happy I am that she was able to receive such great rehabilitation therapies while at Seattle Childrens! The improvements are grand and she has come so far. A little part of me (okay a big part of me!) would love for her to be able to have another 3 weeks of rehab! But for now I am very happy with how things are going and I am SO HAPPY to be home in my house  with my family again. I think Colbey Raye is very happy too 😊.

In the last three weeks Colbey Raye has been a very very busy little girl! Not a single day has gone by since we have been home that Colbey Raye has not had some type of outpatient therapy,  doctor visit or evaluation. She now goes to outpatient therapy Monday’s, Tuesday’s, Thursday’s and Fridays! She has a cognitive development teacher come and asses her twice a month as well as a vision teacher twice a month. She had splint fittings, and a trip back to Seattle (just for medication) and there is a long slew of upcoming appointments at Childrens soon too! She has one tuff schedule to keep up with but she is a trooper! And so are her siblings. Beau, always along for the ride and a chance to flirt with everyone! And Austyn Jayne does not mind spending extra time with aunts, uncles and grandparents! She also enjoys coming to an appointment time to time when I let her 😋. Feeling so blessed and thankful that God has granted me the opportunity to be able to be home with my children, and for a supportive encouraging husband who makes it possible for me to do so. Otherwise I don’t know how I would keep up with it all. And believe me I still have trouble! The laundry piled high, toys a muck all over and nothing can ever seem to find a place. But one thing is for sure we are busy!! We have a lot of fun together, we play learn and get to enjoy the simple things in life and there is always tomorrow to fold those clothes and vaccume the floors!

Colbey Raye, what a tough little thing she is! And have I mentioned one stubborn little girl?! Rehab gave her a little more confidence in her skills and now she thinks she can refuse to participate in activities she does not care for, to say the least! She’s taken up shaking her head no, and although it is quite adorable and very funny at times I still have to make her do these things! Walking in her new gait trainer is one of those head shaking no events! Most of the time she’s okay with it, but some days she will flat out refuse! Oh, yes Colbey Raye now has a gait trainer at home to use! It’s being loaned to us by her therapists and eventually we will be able to get Colbey Raye her very own! She just needs to use it more independently first. She’s taken a few steps all by herself with it (video on Instagram & Facebook) but we need to help her become more consistent and stronger with it. Since we have been home Colbey Raye has also begun to pull herself up to her knees very consistently now! Heaven forbid I sit to hold her brother or sister and not include her! She scoots her little self right over, pulls her self up (usually to her knees but sometime even to standing) and yells “UP UP!”

Also, Colbey Raye has finally found interest in a specific toy! Other than her love of throwing balls, rolling monster trucks around at my parents and dancing to music, Colbey Raye has never been that interested in toys. Honestly she usually could care less about them! But as of a few days ago Colbey Raye has found a toy that she can sit and play with for more that 30 seconds! Her little people’s princes castle and all the little people that go with it! She will ask me to get it down for her by pointing at the castle and then pointing back at herself. She will ask for all the little people too, by handing me a little person, pointing at the bin of little pleople and saying “MORE!” I love it, I love that she actually wants to play, and that she can communicate to me what It is she wants! And she wants to play with Austyn Jayne too! Light has once again shed on my dream of them being best friends one day. 😍

Colbey Raye’s love of people and outgoing personality is still as huge as ever! She always wants to be on the go, asking to leave the house for a car ride, loves trips to the store and is excited for the daily trips to therapy. It is an amazing trait to have when you spend 4+ days a week working with other people, meeting new doctors and running form appointment to apointment. Her smile charms all and she has a way with people I’ve never seen from someone so young. Don’t let her charm fool you though, she is almost 2 and it’s beginning to show!! She has a very care free personality, and consequences don’t matter to her she’s gonna do what she wants regardless 😜. She knows we all love her so much, and can get away with a tude now and then!