Sunday, September 15, 2013
Slowin Down
Now that our weeks are so busy, it's great to slow down on a Sunday morning and have time for the three of us to just play for hours. Shhhh. Don't tell Nana we were playing in her windows. Riley wouldn't squeeze herself back out for almost a full half an hour!
Friday, September 13, 2013
Freaky Friday
This is how our day started out...
With a couple of crazy goof balls runnin the show! As always.
Well actually my day started out 4 .5 hours earlier when I woke up at 1:45 AM and no matter what I tried I couldn't go back to sleep! So pretty much this Friday the 13th started out crazy and stayed that way all the long day!
Riley and I spent half the day at TCH. Not to my surprise she refused to sit in her wheelchair. So today marked her first time actually walking through these very familiar halls. In the waiting room she walked up and down this little ramp for a full 30 minutes and drew in the whole room with her proud smile!
She had to have some lab work done first. She is getting so much better at it, but I'm not! It still stinks! And then we had a Neurology appointment with the wonderful Dr Clark. He takes his time, answers all my questions, is great at celebrating Riley's achievements and sincerely cares despite being a very busy head of neurology at a prestigious hospital.
Riley's neuro check up was pretty good but then he says "so have you had her scoliosis officially diagnosed yet?" Ummmmm. Say what?!? So now we have an appointment to see Orthopedics. Fantastic! Lets just add another specialist to our long list. But please let's not add any more challenges for this sweet girl!! If I just ignore it then will the possibly new diagnosis, the symptoms, the treatment plan and visit schedule just go away? Please say yes! Cause I'm not sure I can add another issue!
And the stress mounts.
And speaking of new diagnosis, we got a crazy one today! Sialorrhea. That's a real thing! It sounds similar to diarrhea and saliva because its the medical term for excessive drooling! We have alot of diagnosis but that's got to be the craziest! We are gonna try those ear patches you wear on a cruise for motion sickness to see if they help the drool, otherwise known as "Riley juice."
After we finally left the hospital I fed Riley lunch and took her to school. Only to be further frustrated on an already stressful day. I happened to meet a new member of Riley's team, one of her therapists at school. Unfortunately it really didn't go well. It is extremely difficult to rub me the wrong way as I generally get along with almost anyone. But when you just met my sweet girl you are not suddenly an expert on all things Riley. So please don't tell me I'm doing things wrong!! I'm not clear yet on what I need to do about that situation but I can't think of a scenario where I'm not going to have to ruffle some feathers to get what's best for my baby. So be it.
And the stress mounts.
After stewing over all the events of the day and making phone calls to Miss M and TCH to schedule new appointments, we ended up actually having a great dinner and night at Sa's. However on the way home Riley was screaming at Keagan and I. She was really, really telling us something as she looked back and forth between her sister and I. It was fantastic that she could use her voice like that! And I was thrilled she was talking so much. But it absolutely broke my heart. I can't even express how deeply I wish I could understand all that my baby has to say!
And the stress mounts.
It was a freaky Friday. One leaving me exhausted, physically and emotionally. I just don't know how much more my sweet Riley can take. Actually lets be honest, she is the strong one that will face any challenge head on and conquer it! It's me that I'm worried about. I don't know how much longer I can watch as more and more challenges are thrown at my girl! Maybe I'll be a little tougher once I get some sleep. I sure hope so!
With a couple of crazy goof balls runnin the show! As always.
Well actually my day started out 4 .5 hours earlier when I woke up at 1:45 AM and no matter what I tried I couldn't go back to sleep! So pretty much this Friday the 13th started out crazy and stayed that way all the long day!
Riley and I spent half the day at TCH. Not to my surprise she refused to sit in her wheelchair. So today marked her first time actually walking through these very familiar halls. In the waiting room she walked up and down this little ramp for a full 30 minutes and drew in the whole room with her proud smile!
She had to have some lab work done first. She is getting so much better at it, but I'm not! It still stinks! And then we had a Neurology appointment with the wonderful Dr Clark. He takes his time, answers all my questions, is great at celebrating Riley's achievements and sincerely cares despite being a very busy head of neurology at a prestigious hospital.
Riley's neuro check up was pretty good but then he says "so have you had her scoliosis officially diagnosed yet?" Ummmmm. Say what?!? So now we have an appointment to see Orthopedics. Fantastic! Lets just add another specialist to our long list. But please let's not add any more challenges for this sweet girl!! If I just ignore it then will the possibly new diagnosis, the symptoms, the treatment plan and visit schedule just go away? Please say yes! Cause I'm not sure I can add another issue!
And the stress mounts.
And speaking of new diagnosis, we got a crazy one today! Sialorrhea. That's a real thing! It sounds similar to diarrhea and saliva because its the medical term for excessive drooling! We have alot of diagnosis but that's got to be the craziest! We are gonna try those ear patches you wear on a cruise for motion sickness to see if they help the drool, otherwise known as "Riley juice."
After we finally left the hospital I fed Riley lunch and took her to school. Only to be further frustrated on an already stressful day. I happened to meet a new member of Riley's team, one of her therapists at school. Unfortunately it really didn't go well. It is extremely difficult to rub me the wrong way as I generally get along with almost anyone. But when you just met my sweet girl you are not suddenly an expert on all things Riley. So please don't tell me I'm doing things wrong!! I'm not clear yet on what I need to do about that situation but I can't think of a scenario where I'm not going to have to ruffle some feathers to get what's best for my baby. So be it.
And the stress mounts.
After stewing over all the events of the day and making phone calls to Miss M and TCH to schedule new appointments, we ended up actually having a great dinner and night at Sa's. However on the way home Riley was screaming at Keagan and I. She was really, really telling us something as she looked back and forth between her sister and I. It was fantastic that she could use her voice like that! And I was thrilled she was talking so much. But it absolutely broke my heart. I can't even express how deeply I wish I could understand all that my baby has to say!
And the stress mounts.
It was a freaky Friday. One leaving me exhausted, physically and emotionally. I just don't know how much more my sweet Riley can take. Actually lets be honest, she is the strong one that will face any challenge head on and conquer it! It's me that I'm worried about. I don't know how much longer I can watch as more and more challenges are thrown at my girl! Maybe I'll be a little tougher once I get some sleep. I sure hope so!
Wednesday, September 11, 2013
A Whole New World
Being able to walk has really opened up a whole new world to my Riley girl! Now when I get her out of the car she is immediately squirming to get down and walk. And it is such a battle to get her in a wheelchair if we are walking longer distances. But I really can't blame her! The world must look so different to her now, and she's ready to explore it.
She loves to walk by the fridge and push the lever to make the water come out. She knows she's not supposed to, but she likes being able to be naughty like this! Her favorite thing to do now is "run" with her sister. Its such a cute quickened stomp that isn't nearly as fast as Keagans regular walk. But it makes me so happy that they both get such a kick out of being able to do something so simple together! FINALLY!
This morning after therapy she was trying to run away from me in the parking lot so she didn't have to get in the car. Of course she did it all while giggling! And this afternoon she walked in and out of the playroom to bring me fake food as a waitress over and over.
I'm still not used to her being a walker yet so she takes my breath away several times a day. She falls alot less now but she has horrible bruises on her knees and one on her hiney that make me so sad. I guess they are just battle wounds from the fight of her life! At least it's a fight she is definitely winning!
Keagan is also moving right along as my babies get closer to the big five! Last night she insisted upon loading the dishwasher all by herself and today in the car she BURPED a song for me! I mean seriously! What more could I ask for? Makes my heart swell!
She loves to walk by the fridge and push the lever to make the water come out. She knows she's not supposed to, but she likes being able to be naughty like this! Her favorite thing to do now is "run" with her sister. Its such a cute quickened stomp that isn't nearly as fast as Keagans regular walk. But it makes me so happy that they both get such a kick out of being able to do something so simple together! FINALLY!
This morning after therapy she was trying to run away from me in the parking lot so she didn't have to get in the car. Of course she did it all while giggling! And this afternoon she walked in and out of the playroom to bring me fake food as a waitress over and over.
I'm still not used to her being a walker yet so she takes my breath away several times a day. She falls alot less now but she has horrible bruises on her knees and one on her hiney that make me so sad. I guess they are just battle wounds from the fight of her life! At least it's a fight she is definitely winning!
Keagan is also moving right along as my babies get closer to the big five! Last night she insisted upon loading the dishwasher all by herself and today in the car she BURPED a song for me! I mean seriously! What more could I ask for? Makes my heart swell!
Tuesday, September 10, 2013
Somersaults, Cartwheels and Beams, Oh My!
Today was Keagans first day of gymnastics! She's only been asking me about it for a year. She is taking at Bannons with 6 other cute little girls in her class including Holland from school and Rachel and Zaliah from church. There also happens to be a homeschool class at the same time so a whole bunch of our friends from church are there too. Sure makes the waiting room a lot more fun!
But I just had a blast watching Keagan go! After all the flipping and twisting she does at home everyday, Im not at all surprised that she loved it! And by the end of the class she was already doing a perfect cartwheel from square to square! This is gonna be fun!
But I just had a blast watching Keagan go! After all the flipping and twisting she does at home everyday, Im not at all surprised that she loved it! And by the end of the class she was already doing a perfect cartwheel from square to square! This is gonna be fun!
Monday, September 9, 2013
Workin Hard!
Keagan had homework this weekend. Very crucial and challenging Pre School homework. She had to bring 5 small things to school that represented her to tell her class about just who Keagan is. With some direction (she wanted to bring her favorite jammies) she picked 5 things that represent her well. A baby picture of her and Riley to explain she is a twin, a drawing she made of all her cousins to explain how much she loves her family, the book titled "Good Night Hawaii" to explain she was born in Hawaii, her harmonica to explain she loves music and dancing and finally, a plastic piece of chicken, her favorite food. That pretty much sums that cute little girl right up!
Riley has been working hard too lately! We are back up to a full therapy schedule. That means 6 hours a week in the mornings before speech. Two physical therapies, two occupational, a speech and a feeding therapy. That is one busy girl! Her favorite OT Miss Joan was mentioning today that alot of her kids have to be motivated often to work. But Riley faces every challenge head on and is one of her hardest workers! I am so proud of her for that attitude and for how far that has gotten her in progressing so much!
Riley has been working hard too lately! We are back up to a full therapy schedule. That means 6 hours a week in the mornings before speech. Two physical therapies, two occupational, a speech and a feeding therapy. That is one busy girl! Her favorite OT Miss Joan was mentioning today that alot of her kids have to be motivated often to work. But Riley faces every challenge head on and is one of her hardest workers! I am so proud of her for that attitude and for how far that has gotten her in progressing so much!
Saturday, September 7, 2013
Feelin Fall
I'm so ready for cooler weather! This happens to me every September. I'm ready to break out the long sleeves and the heat index is still 105!
Today we made pumpkin muffins to take to friends. Maybe if we pretend it is fall then it might come sooner!
Today we made pumpkin muffins to take to friends. Maybe if we pretend it is fall then it might come sooner!
Friday, September 6, 2013
That's My Jam!
Keagan cracks me up SO much! Tonight we were pulling out of a friends driveway and the ice cream truck was driving by. She rolled down her window to listen to the music and said "that's my JAM!!" What a goof!
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