Rileys First Boo Boo

So yesterday as i was trying to juggle riley and get out the door. I dropped her Pulse Ox on her. About a foot. It left a dent on the side of her face. I felt so bad. once she calmed down and i calmed down i decided to call her pcp to see if i should take her in just to take a look at the bump...This is the best part. I call and tell the on call nurse what had happen and she asked well did it hit her hard? Really? are you serous right now? Of course it hit her hard. Hard enough to leave a freaking dent on the side of her face like i just got done explaining to her. So she decided to squeeze me in just to take a look. About 5 min later i get a call back from them and it was my favorite nurse there ( saying this sarcastically) He thinks he is the shit, since he has "some" ER experience. So he is asking how she is doing then asked what kind of monitor it was that fell on her and if it was this kind...Im like who the hell cares what kind of monitor it was.... Well how high did it fall....well let me go get a tape measure so i can find out the estimate it was...this guy drives me nuts!!! Then i asked well should i bring her in...she looks fine and the bump on her head has gone down. Ohh yes!! we need to see her. With all her skeleton dysplasia issues im worried about her neck! HER NECK!!!! This has nothing to do with her flippin neck!!!! OMG i swear....I wanted to tell him Ive been working in the health care career for 4 years now, my mother is a nurse all my friends are mostly nurses. I know what kind of stuff to look out for. Plus i know my daughter better then anyone else. I cant deal with stupid people anymore. Im sure, im going to come a crossed many of these in my near future... But riley is all well. you cant even tell what had happen today....

7 Months update

So Riley is 7 Months today!!! We finally have a diagnosis. Well sorta they still need to do blood work to confirm but they think Riley has Larsens Syndrome. This is what i thought she has since birth. Good think i joined the Facebook Larsens goup and been getting advice from them :D Her breathing issues are starting to get better and she still has mild reflex issues. Shriners still want to give her knees a break. They are looking at doing surgery when she is a year. I asked them about her head to see if they think she has craniosynostosis, but they dont think she has this at all. they do want to get her in for a ct and mri done but once her ent think she is okay to do that. Took the kids to our first LPA meeting :) and guess where we went???? Yup Roloff Farms :) For those who don't know who the Roloffs are. They have there own tv show on TLC called little people big world. Got to meet and chat with Amy Roloff and got to see Matt as well. Got to meet with some awesome families with kids with dwarfism. Its nice to know these people live close by and have been through what we are going through :) Nice support group. The kids had a good time as well. Nothing new here. Riley is getting more active and interested in things. She is teething and they are trying to break through but nothing yet!!!! She loves Tummy time and She is trying to roll over and is making a lot more noises....We also dont use the car bed any more..she now sits in a big girl car seat :)over all she has changed so much and i look forward on many more good changes that are about to come :) Dad is coming out this week to visit!!! We are taking maddie to Disney on Ice which she is going to die when she gets there :) im so excited for her :) hope everyone is doing good! love you all Happy Fall :)

Just a lil somethin somethin

Its been a while since my last update so i thought i would get on here and update you all :) So I took Miss Riley to her 6 month shriners app. and they said they really want to get a MRI done on her to see whats going on with her bones. The only problem is she will have to be asleep. He Ent doesnt want to do this right now...bc she has a difficult airway. So i will see them again in 3 months. Has of last week Riley has upgraded to a normal infant car seat...YAY we are sooo excited for her!!!!! bye bye Bentley :D Some also exciting news lil missy rolled over from belly to side...she just didnt know what to do with her other arm hahah I cant believe all her mile stones she has gotten this past month...She is also talking more and smiles at everything!!!! she is just my cutie pie!!! We should also know her diagnosis this month or maybe closer to next month. They wanna get blood work bc her gentetic doctor thinks her may know what it is she has...so we have been patiently waiting :D Got approved for SSI last month. Waiting to see how we will get so i can decided if im going to quit or work part time, or on call. Going to my first LPA group thing this sunday. We are going to the Roloff farm to visit the roloffs and there pumpkin patch!!!! :D im really excited!!!! Got my girls didicated to the lord last month :) Dads coming out next week :) havnt seen him since riley was born. Planning for the holidays... :) cant believe its almost the end of the year already...it has flew bye us... Maddie and Caleb are enjoying School and so is there mommy :) gives me some time with Riley in the mornings :) That about it! Love you all pumpkin patch photos soon to come!!!! Happy Fall :D

6 Month Update!!!

So took Miss Riley to see a pediatric neurologist on wed, about her scoliosis. Ive been really worried about her back and per cations i should be making. They said there isn't anything i should be doing differently with her then i would with a normal baby who doesn't have scoliosis. They then were asking me about her head and if anyone has told me her head as been measuring different and i said no...Then she said she is really worried that she might have this thing called Craniosynostosis. & that she is looking like she is starting to show sings of this. So she brought another doc in and he said the same thing and how they wanna do a CT scan. She tried explaining it to me but me what Craniosynostosis is but all i could thing of was Great another thing to add to her list of problems. I cried all the way home and was thinking the worst but once i read up on it its not as bad as i ws thinking...and early intervention will help! Plus im not sure if she even has it or not. So i just gotta keep faith with me and see what the CT scan says first before freaking out. Also I spoke with her ENT doc about this and he doesn't want to do any ct scans yet until he speaks with them bc he doesn't want her to be exposed to too much radiation. He is out of town all next week but we will be doing another sleep study the first week of October and this will also let us know if she is in need of a trach. Im glad they are doing the sleep study at the hospital. He said once they get the test results then they will either send us home or do the trach. I called Cedar Sinai the skeleton displysha where they are going to determine her diagnosis. They said they are almost done they are getting ready to send it all out and to call them Tuesday. I'm hoping they have a diagnosis. I cant wait much longer!!!! Ive been researching and researching since i was pergo lol I always think of what happens if she dies. So many thoughts run through my mind... Like How will i move on? Or How do those other parents who've lost a loved one move on? What will we do with her body? Barrie or Cremate? I'm a little selfish went it comes to this. I have to keep telling myself it just doesn't effect me it will effect everyone who has Riley in there life. Including Billy, Maddie, and Caleb. I have to keep strong for them. I tell myself everyday im doing all I can & my best for her right now. All that i can do to help her. When its her time to go which no one knows when its there time to go. I cant be sad and dwell on it. Just gotta sit back and look at everything myself and her dad has done to keep her moving forward. I hate hate hate talking about this but you cant keep it all in. You have to talk about it. Because we all go when its time. We just dont no when that day is. We just have to be thankful each day that we have her and enjoy the times we share with her. I just want to thank everyone for your support and your help getting us through this. If it wasn't for the internet, amazing doctors, family & friends and Facebook support groups I would be lost!! thank you all! Love ya xoxo 6 month photos coming soon :)

ENT update

Took miss Riley to her ENT doctor yesterday because i have been considered about her breathing issues and why she cant sit in a infant car seat yet. She still sits in her Car bed seat. He said he is really worried about her breathing and wants to do the sleep study next week. He said if the sleep study results are bad then they will send her directly to the hospital and do a tracheostomy. For how much im terrified for her to get this. Im thinking deep down she may really need this. I have a appointment with SSI next week as well. Hoping they decided to give it to me. Working and trying to juggle miss riley and maddie is getting hard. Thank god for preschool, and my family for paying for it. I wouldn't know what to do if i didn't have it. I will let you all know once this sleep study is done! Love you all xoxo Ash

Crazy Pergo Lady!!!!

Okay i just need to vent! Was in Ross the other day and maddie had to go to the bathroom. So I take her in and there and this pergo lady who is in her late 30's and asked how old riley was and i said oh almost 6months and her response was, " Oh she is really small!" and i say YES She is all proud and all :) then she goes on asking if she is on oxygen i say only at night. I told her she has PRS and she has a Nasal Trumpit in her nose to push everything forward and help her breath better. She was still confuse. Then she had the nerve to say, "Is that thing in her nose because her nose is deformed? Im thinking did this bitch just say that? First off who is she asking all these questions. Im nice enough to explain everything to this person i have never meet. second Her nose isnt deformed and it look alot cutier then your Big ass nose! Then she wishes me good luck and walks out! Really??? Ahhh people make me soo bad! Yes my daughter is different and alot of people notice and i just keep smiling and think I couldn't be more proud to have her has my daughter. Sometimes when i go to the park i think i wish i had a normal baby. But when i think about it my daughter is normal. she just is more talented then other babies and learns how to do things in a different unique way. God has put her here for a reason and has a plan for her. I just couldn't be more blessed to call her mine!

Dear mom who feels like she is failing

I love this! enjoy.... You're not. If you and I were sitting in Starbucks and you had your fave drink and I had my Caramel Macchiato I'd look at you, and I'd tell you the truth - you're not failing. I know. I'm guessing, you'd wipe away the tears, and look up, and try to nod your head, but inside, inside well, you'd think that those are nice words but seriously she has no idea. You know why I know? Because I've sat in a coffee shop, across from a friend, a friend who looked me smack in the face and told me that I wasn't failing and that I was doing a great job. I wanted to tell her about the dishes from yesterday sitting on my counter. And how the pile of storybooks wasn't read again. And that I'm a week behind in laundry. And that I got really really irritated at the mixture of 13 toys all dumped in a pile that two days ago was sorted into 13 labeled boxes. I wondered if she knew that some days, some days I get up and just go through the mom motions without even really finding much joy. It felt like drudgery. How could she tell me I wasn't failing? Yet, I wasn't. Somehow in the mixed up media world we've got these thoughts of moms being perfect. Society doesn't give us a break. I mean read this article in the New York Times about the pressure on moms to look a certain way after they give birth. And then? Then we're to be ultra creative, crafty, humorous, happy, chipper, up before dawn, to sleep after dark, with our sinks shined, and the laundry folded, and tomorrow's breakfast in the crockpot, with tomorrow's dinner - pulled from our once-a-month cooking thawing in the fridge, while we work out for 20 minutes on odd days and 40 minutes on even days, and our hair is always done, we're makeup ready, our fridges are stocked, and the craft closet bursting with ideas for that quick perfect afternoon art project that we'll place on our recycled wood and mod podged adorned hand painted chalkboard. And, in reality, it's 8am and we're just getting up. The baby was up all night, or the toddler sick, or honestly, we were just tired. We get our coffee and flip on facebook and our stream is flooded with stuff people have already done {I always tell myself -- different time zones} and we're racing to catch up with this never before except for the last hundred years perfect never feel like you're failing mom ideal that is exhausting. You know what my friend told me? She told me to slow down. Slow down? How in the world when I felt like I was failing was I to slow down? I had way way way too much to do and I needed to read that parenting book to work on my attitude and and and...and. And she told me enough. And that I was a good mom. You know, you're not failing. You need to start to see all you do accomplish in a day. All the smiles of encouragement, meals made, clothes changed, books read, and more. Just like I wrote yesterday - we make mistakes {ten things moms need to remember} - we just need to learn from them. We're out of breath, racing, and exhausted, but truly not failing. Failing means stopping. Not getting up, not trying, not giving. That's not you. I want you to stop telling yourself you're failing. Instead I want you to replace it with I can do this. You can do this. Those soundtrack words and feeling about failing are just feelings. Don't let them define you anymore. If you hear I'm failing replace it immediately with I can do this. If you were across the table from me that is what I would tell you. And, of course, I'd tell you do one thing. I'm going to write and say it again and again and again. Write your list of things you want to do, need to do, and would love to do today with your family. And then, do one thing from each list. If you stumble, brush yourself off, and start again. Don't worry that the neighbor across the street seems to be doing twenty or the pinterest pin tells you that the perfect home can be achieved in 6 Easy Steps. This is your life - and you - you are the perfect mother for those children. God knew when he blessed those kids to you. Remember that. You are a good mom. You matter. You are making a difference. You can do this. One step, one day, at a time. From me, one mom in the midst of motherhood, to you.

Gtube Buddies

http://www.kidshopechest.com Heres a cool website where you can buy gtube buddies. Instead of using gauze to help with the leaking you can buy these cool lil fabric things to put around instead. The neat thing with them too is they are machine washable too. They also have other cool things on here IV pole pals and tons more!