CNN about Dr. Kozin

This is the link to see Dr. Kozin on CNN. He's on of the doctors in the United States who deals with Brachial Plexus Injuries.

CNN Dr. Kozin

Kiniseo tape

Meal Planning

I've been thinking a lot lately about starting to meal plan so food doesn't go to waste. Now that I'm returning to work and will have to take Camryn to therapy after work twice a week, time is going to be limited for me to cook meals. Does menu planning save time? I'm all about crock pot cooking but I've found that when cooking with the crock pot it seems like the texture of food is always the same. I love cooking so I don't want to necessarily get lazy and just order in or pick up food those days but I need to do something to make things a bit easier, while still saving money. What do you all do?  Does anyone have any meal plan ideas? I've seen some websites that you can pay for that have meal planning they do for you! Is the subscription worth it? What do you all do to get dinner on the table?

I would love suggestions!

Gravity?

So when dealing with Erb's Palsy you'll hear therapists and specialists talk about Gravity assisted, gravity unassisted, etc. It's all so confusing. Right now Camryn is lifting overhead with gravity eliminated but we want her to be able to do it against gravity which will take time. Is there an easier way to explain this concept and to understand it. Sometimes, I really have to think about it to understand it!

Would love to hear from you!?

Anxiety

Since having Camryn I've had a terrible time with anxiety. I don't know if it was the traumatic experience of everything or just becoming a parent but it's an awful feeling. On more than one occasion I've felt like I was going to die. I would have trouble breathing, see spots, my heart would race, and it would be awful. Thank goodness my family is understanding and I was able to call my husband to stay on the phone with me while it was happening. Now, I know the signs and am better at controlling it or I know when to take something to take the edge off.  I'm not sure what triggers it either. I think it's when I start thinking about everything and my thoughts just carry me away, or when I think of the what ifs.

Do you get anxiety? What do you do to cope with it? 

Grabbing at Her Arm

Have any of you noticed that your child grabs at her or his arm? I've noticed it more and more recently lately that Camryn will start grabbing her arm. Is she feeling pain? Is she getting more feeling in her arm? (It has been 6 months since her surgery) I'm just don't want her to be feeling any pain.

Hot Mess

I've been an emotional mess today. I don't know if it's me being scared about returning to work and putting Camryn in daycare. Or me just having a bad day dealing with things. I've noticed as Cam's been cruising she is having a hard time balancing and she can't catch herself the right way! She either falls on her head or slides down her left side. Sooo frustrating . On a better note George and I went out last night and saw World War z. It was a good movie but we went to the IPic and got premium plus seats and it was awesome!  That's it for now! Just trying to get through a bad day with a ton of emotions.

Going Back to Work

After thinking, talking, crying and basically asking someone to tell me what to do, I've decided to go back to work. I'm excited at the opportunity I've been given but nervous about how I'll be able to juggle everything. I've talked with Camryn's therapists about rescheduling her therapy and they are able to do it. One day a week my father will take her and I'll meet him there. Thank goodness my new job is willing to work with me on my schedule so I'm able to accommodate Camryn's schedule. I also signed Camryn up for daycare near my house. I'm on the waitlist for the daycare near work. I'm terrified of putting Camryn in daycare but I know she will be fine. How did you all handle putting a child in daycare?  My biggest fear is her hurting her left arm, or the teacher not being aware enough that Camryn doesn't use her left arm as well and can't break a fall. I'm going to print out a bunch of stuff I can find on the Internet for the teacher and make sure I talk to her all the time about Camryn's arm and always remind her. Should Camryn wear a medical bracelet? So many things running through my head!

To Go Back to Work?

The question of whether or not to go back to work is eating me alive! I’ve spent Camryn’s entire first year taking care of her and bonding with her. I’ve taken her to every doctor’s appointment, specialist and therapy session she’s ever had. How do I separate myself from her, for me? Is it me being selfish? When is it ok to be selfish and take a little piece of me back too? I’ve had an amazing job opportunity thrown at me with room to grow. It just almost seems too good to be true. I know me working would take a lot of stress off my husband and the finances. I can pay my student loans; car payment and I’d have health insurance and be off of cobra. Money has been a huge stressor this past year due to all the mounting medical expenses.  The thought of putting Camryn in daycare terrifies me. How will I get all of her therapy done in a day? Will they stretch her and keep her loose like I would at home? What are the precautions I have to take because of Camryn’s arm? These are all the questions that are running through my head as I’m typing this and trying to make my decision. I have anxiety just thinking about this all and don’t know if I’ll even be able to sleep tonight. How do you all handle putting your child in daycare? What are some suggestions to make it easier?  What did you tell the teachers at daycare about your child’s arm?

What Does Camryn's Arm Feel Like?

I've always wandered throughout the year what Camryn's arm feels like to her. The therapists say it feels tingly to most children. But does she feel pain? I've read a lot about never using the Erb's arm for anything like blood work, blood pressure, etc. Should she be wearing a medical bracelet? Next month when we go back to the specialist I'm going to make sure to ask him all these questions. A parent once told me that when her daughter had strep that her Erb's arm always hurt. Has anyone else had their child experience this? 

6/19/13

Two Awesome websites made by kids with Erb's Palsy!

Ellie Erbs

Brachial Plexus Fighter

Successful Day

Pretty successful day! Therapy, nap, park, worked out and cooked dinner!

My Daughter has had Botox Before Me

I like to joke with my family that my daughter has had botox before me:)  Camryn has now had botox injections twice. She had it at around 6 months to try and see if we could avoid major surgery but it just kept her loose instead of helping her get overhead. She also got it when she had her nerve graft and transfer surgery. I have a feeling she'll need it again as well. No matter how much we stretch her she still seems to tighten up. For botox they  treat it as if it were surgery since she has to be sedated, so it is a long day. She really is only under for 15 minutes or less. It really just takes much longer for prep. While she's under the doctor is able to manipulate her arm and shoulder the way he needs to so he can botox the correct muscles. It's really not a huge deal, but I hate that Camryn has been sedated so many times.  I never in my life thought my daughter would have botox for me!

Stem on the go!

Finding Enough Time in the Day

How do you find enough time in the day to get it all done?  I feel like I never have enough time in the day. I always stretch Camryn out after changing her diaper but that's getting more and more difficult because she's on the move. I put a fanny pack on her so that she can do her Stem treatments and be on the move. But how do you get all the other stuff that the therapists want you to work on during the day done, while still enjoying your child and letting her explore? I want to do everything they say to do but maybe I'm just putting too much on my plate and I should do a little bit each day and alternate days. How do you all do it? I honestly feel like every time we go to therapy they add something else to our list of things to work on.

Waiting for Daddy

Waiting for Daddy to wake up on Father's Day!

"The Big Secret No One Tells You" Maria Rodale

This was a really well written article that really hit home on a lot of things..

The Big Secret No One Tells You


I really find the Huffington Post has some well written articles.

Getting in Shape

As a new mom how do you get back into shape? I need to tone up and start working out again but how do you find time? Camryn doesn't nap for more than an hour and half (sometimes less ) a day and is up by 6:30. Does everyone wait til the baby is asleep and work out after? Do they go to the gym with day care?  How do you find the energy? After a long day with a toddler and doing therapy and running all over the place with Camryn I can't seem to find the energy to want to work out. 

Need Advice!

I don't know how many of you have experienced this but Camryn has started fighting therapy. Every time we go she starts crying during PT and OT. The therapists asked me to wait outside yesterday because she was so upset and kept trying to come get me to comfort her. It broke my heart listening to her cry from down the hallway. When I first started therapy I heard kids crying and I was so grateful Cam was so well behaved. But, she has become that kid. What are some tactics you use to make this better or easier? She's even started resisting while we are trying to stretch her out so we try and make a game of it or dance with her so she doesn't realize we are stretching her.

Getting Over it

As a new mom how do you not compare your child to all the other children you see. The hardest thing for me especially when trying to make new mom friends is comparing Camryn and what she is doing to the other children. Especially, knowing Camryn is delayed when it comes to certain things. It’s been hard for me to make new mom friends but even harder getting over the fact that Camryn is a little delayed. She doesn’t crawl the right way, she tripod crawls, she didn’t sit up on her own until the very last minute and she’s still not walking. She never really claps her hands either. When I see all the other babies doing what they are supposed to be doing at all the mommy and me classes and Camryn isn’t I just feel embarrassed inside. Even though, I know that no one even cares or notices, it’s something that I notice and I take it to heart.  How do I get over that? My husband and I were talking this weekend and he basically said it’s something I need to get over because what happens if it gets worse when she starts school and she doesn’t do things when she is supposed to do or is delayed because of the Erb’s. I get it and I see where he's coming from, but how do I do that? How do I move past this feeling and let Camryn just be who she is going to be?

Emailing

I got an email this morning from another mother who read my blog. It made me feel so good! First, that people are reading my blog and that she actually contacted me to tell me about her child. I'm so grateful to hear of success stories and other people's stories about what they are going through or what they have gone through. It puts things into perspective and helps me once again realize that we aren't alone in our fight for our daughter and that other people have had the same or similar experiences.

Back

I'm finally back. My husband and I had a great weekend even though we were rained out the entire time. I even got a massage. (Although during the massage I was thinking about if my Aunt was stretching Cam's arm to keep it loose.) I seriously need to learn how to relax and not worry so much. Now that I'm back I'm going to start finalizing times and platforms for the group support chat I'm planning for the end of the month. Now, off to go take care of my child who suddenly can't sit still at all!!!

Today is a Big Day for ME!!

Today is a big day! After over a year of being at Camryn's every whim, my husband and I are finally taking some time for ourselves and going away for a weekend. Thank you to my family for coming down from NJ to watch her! We are so grateful to have you!  I'm nervous and excited and have a little bit of anxiety. (I'll go into more depth about my anxiety in another post) I can't wait to wake up late, do nothing and most of all not do any type of therapy for a whole weekend!!

6/6/2013

Yesterday because of a scheduling issue we had therapy at a different time on a different day. I'm not one for ever missing therapy. She had an awesome time. She did OT first and crawled all on her own for a puff without anyone holding her hips. She just knew she had to do it! It was awesome. During PT for the first time ever the therapist asked me to wait outside and Camryn did great. She even took a step all by herself! We also taped her yesterday with Kinesio Tape. I've been slacking at home taping because for some reason when I do it it comes off much quicker than when the therapist does it..(same tape too)

This Piece Really Hit Home...

Click on the link to read this article..

Mistakes, They just happen, right?

Mixed Emotions

We just had our one year evaluation with early steps. It just stirred up so many emotions. Both my husband and I left feeling defeated. We've worked so hard this year and Camryn still didn't meet all her one year goals. I can't explain the thoughts that go through my head every time I hear what Camryn is not doing and what she should be doing. She should be doing a lot more than she is. She's also not communicating as much as I'd like her to. Is this because of the Erb's Palsy and injury? I just don't know. I know things were going to be difficult but meetings like this bring out so many emotions.

Love this..from Huffington Post

24 Reasons Little Children Make us Smile

Zulily SALE!!

This week through 6/7, zulily.com is having their Dance Week sales themed around the art of dance and will feature popular brands like Danskin, Capezio and many more! Only members can shop zulily events, but membership is free and signing up is quick and easy. Don't miss your chance to shop today!

Dance is a great form of therapy for kids with Erb's Palsy. It's definitely something I'll be having Camryn do when she's old enough. I can't wait to buy some cute little dance outfits for her!

You can find the link to Zulily right on the blog!!
Hope your enjoy some online window shopping!!

Monday, June 3rd

Ballet Apparel & Shoes

Lexi-Luu Designs

...and many more! Tuesday June 4th

Accessories

Modern Dance Apparel

Danskin & Ballerina Girl

...and many more! Wednesday June 5th

StreetWear

Capezio & Future Star by Capezio

...and many more! Thursday June 6th

Butterfly Treasures

Tap Apparel & Shoes

...and many more! Friday, June 7th

Hip Hop & Jazz

Ferreira & Body Wrappers

...and many more!

Is she still sleep trained?

Cam is maybe finally starting to feel better. It was a long weekend and Camryn definitely had trouble sleeping. I hope we didn't ruin all of our sleep training. Camryn used to be able to fall asleep almost right away with no crying but since she was sick she had major trouble. Of course, because she was sick we went up there to see what was going on and try and soothe her. I guess we'll find out!

DOUBLE EAR INFECTION!! DOUBLE THE TROUBLE

We finally took Camryn to the doctor yesterday as she seemed to be getting worse not better. My dad pretty much insisted we take her because she was starting to get a nasty cough and her fever was going up. Believe it or not she has double ear infection!! No signs like pulling at ear or having trouble sucking...I felt so bad for her. She had her first real sick day and now we are on amoxicillan. Yesterday she was super clingy and just couldn't get comfortable she was so antsy! Anyway, last night she was hysterical again and my husband and I knew she just really needed to sleep so she could recover so we gave her a dose of benadryl to help with her congestion and she finally slept through the night. This morning she was in a much better mood. (don't judge)

Have you noticed that when your child is sick their Erb's arm bothers them? I noticed she was pulling on it this morning and she never really does that. I know the weather here can't be helping either.

On a happy note I have the best husband ever!! He got us tickets to go see Michael Buble Nov 2nd!! I think he is an amazing singer and have been a fan forever...My mom and I used to listen to him all the time! I can't wait!! (He by accident got us club seats too!! What a treat!)

Here's a pick of her sitting for 5 minutes skimming through a magazine and watching General Hospital! It must run in the family because I've been told I watched it in the womb haha..(Btw love how she is using her left arm to pick through the pages!!)