I have not forgotten

I will post soon about all that is going on, but I really do not have the time currently to do so. I promise things are a little bit better. I am doing my best to focus on the good and ignore the rest as much as I can.

A new day will dawn and it will better I pray!!

Peace, love and library books:)
Rachel

Bring on the Rain

I love this photo of Emma,it is from her friends Kadence's birthday party. She loved hiding out in the "tent". I can not say I blame her right now, since we are spending more and more time at the doctors.

The other night, while starting to clean out what is suppose to be our office/art room, I heard a song that really fit my current life. It was "Bring on the Rain" by Jo Dee Mesina. The part I really loved was: The battle lost but not the war, so bring on the rain"

WOW !! That is my life to a tee right now. So, much is going with Emma, but we are not really getting any real answers or solutions. We just keep finding out new things about her or something new to try to make it better, but no real explanations as to why or how to fix it all for good. You can read all about what is going on with her on her website , but I do not feel like going into it all here.

So, anyway, I feel that I am fighting a battle that is never going to be won. We make advances and we get kicked back but the war is still going on and the war will never end. We will fight till my girl is well. However, the rain is falling on our family hard and fast. We are not sure where to hide, but we are hiding together (her daddy and me that is) We spent the weekend trying to not drown, but it is really hard. We are not sure where to go or what to do next. We are constantly having to either give her medicine or do her treatment for her belly. We are seeing so many doctors right now it is making us all crazy, Emma included.

So, where do we find shelter from this rainstorm? I am not sure, but someday the rain either has to stop or at least slow done right??

Rachel

I might run away:)

Life is such madness right now, I can not possible write about it all. Let's just say we are in doctor craziness. We have either seen or will see almost everyone of her doctors this month. Which has brought up a lot of new and stressful matters.

When I have some answers I will write all about it, till then pray we are able to find out answers to many unanswered questions we have. Also, pray that the stress of so many doctor's visits will not affect Emma to much. She does okay but it is still scary for her.

Daddy and me are really tired from the stress and the no sleep (Emma is having night terrors at night). We are so worried and confused right now with what is best for her health and her education as well (that is a whole other battle we are in). She is a very complicated girl and it seems to always get all crazy at the same time.

This is making all of us worry a lot and really hope that we soon no something to do to help her. I am so worried about her, but I really wish I could just take her away and hide at the beach. Or as her daddy said last night, "I wish I had a magic wand to fix it all right now"

I really wish we could make it all disappear even for a day or two and live in a world not full of doctors and pain. Like I said I might run away! A mom friend of mine said she would gladly help me escape even it was for an hour:) I might have to do it! I really need a moment to relax and refocus. My brain is all jumbled and crazy right now! This mom and me took a mommy break a few weeks ago and it did a world of good for us both. We both have children who have unique traits and we are able to share many of the same frustrations and fears, it is always nice to share with someone who is able to understand what you are saying. Even if it is only an hour, it will still be nice to run away! I swear I will return. I love my family to much to run away for good.



Love and craziness
Rachel

Life is Crazy

Things have been really busy and weird at the Zook household. Emma has been off and on very ill lately. So, we are making the rounds with a few of her specialist to try to get to the bottom of all of this before we all go crazy. Her not being well has really made making plans hard. We are basically having to wait to see how she is doing in the morning to plan anything. So, play dates are not really happening right now, which is sad for Emma and me! We really miss our friends.

I am trying hard to adjust to my new schedule at the library. But trying to find time to work on crafts, book choices, and so on, is really hard. I am still trying to fit it all in, but mostly I am staying up late to get it all done after she goes to sleep. I love my work, but it has been a really long time since I did it, and I am a lot slower then I use to be:) Call it age or extreme exhaustion (Emma still wakes up at night) :)

Anyway, we have a lot going on in the coming weeks. We see a lot of doctors and we have her big dates with Metro. March 3rd is her testing date, and then the 24th is her big meeting:( I am still sad that she is about to be added to the Metro schools system. She is so young, but I guess I am going to have to learn to let go a little bit! I am not happy about it though. She needs so much help, and I do not want her ignored.

Emma is learning so much right now! She is starting to sort by color and like items too. She is learning more of her letters every week. She already knows that M is for mommy, d is for daddy, o is for Owen, e is for Emma, and b is for ball. WE are working on a few others but she is still not getting them. She has learned to say hooray when we sing "If you are Happy and you Know it" which is so cute! She just screams it so loud and clear.

She makes me smile and brings me so much joy. I am really feeling better mentally, but very tired right now. I really wish she would sleep better and let me and daddy sleep too. She is trying to give up her nap, but mommy says no!!!!!!!!!!! NOT YET!

I hope all is well in your life. May God bring you rest and peace!

Rachel

craft time and mom's new job

The photos above are of Emma standing at the window waiting on daddy. This is her new favorite thing to do. I like it since she is using her legs and standing on her own. She loves to look for daddy and wave when he gets home. The other photo is of her hand after a painting session! She loves to do crafts and express her creative side.

This week has been okay. Emma is still trying to get her stomach empty from being stopped up. So, we are changing a lot of diapers! We got her braces, and we have wore them once with no tears! They really stretch her out and make her work, so she is not to happy about them, but she is getting use to them little by little.

I am mentally doing a little better. I am just trying to focus on how funny and loving my sweet girl is. I am spending a lot of time just hugging her, loving on her, and spending quality time with her and the family. We have been working on lots of Valentine's crafts and she is loving to be painting and coloring. She makes me laugh so much when we do crafts. She gets so excited but hates to touch the paint. I tried finger painting with her the other day and we had to use brushes. Then she went wild. She really has a real artist side, and I love to bring it out and let her explore it. We keep coloring books and crayons at her little desk all day long and she sits there for hours doodling and coloring. (she gets it from me, I love to do crafts)

I am proud to announce that I will be taking on all the story times at the library I work at. I am so happy. Now I will be working two weekends a month and every Thursday. It is not a lot of money but it will help a little. Plus, Emma can go with me and be with me the whole time. I am still hoping to gain a few hours working the desk, but I am still being trained. It is fun work and I love it. I love books and kids so it is perfect for me to work there.


I better go, Emma is about to wake up and I need a snack first.

Rachel

never boring

A few weeks ago we went to see the surgeon that did Emma's spinal surgery before her first birthday. We meet with him to discuss her MRI and if he could tell us why she is not walking still. He is a great surgeon, but not the best person to talk to (that is putting it mildly). Well, he told us that according to her MRI's she should be walking and he see's nothing to stop it, but that there could be underlying nerve damage that would not have showed up on the test he did. Then, he told us she could or could not walk he did not know.

This was a hard thing to be told. We have known that it is a reality that she might not walk, but we have really never been told by a doctor that. So, where do we go now is the big question. After talking with a few of her therapist and friends we are pursuing a new doctor that deals with motor delays. He has been told about us and thought he could offer some help. We are waiting now to get an appointment. We hope that he will want to do some testing on her nerves to see if they are all working right. We really believe that she has some nerve damage, and we just need to know where or if to make sure we are doing the best therapy methods.

So on the medical front, we continue to look for answers and we do not give up on her walking. On the emotional front we have had a rough few weeks. It really hit me hard that my sweet angel my never walk or run. I have cried many tears over the thought that she might never have dance recitals, play soccer, or run to hug me. All things I have been dreaming of for so long. I also do not want her to have to struggle for the rest of her life with her mobility. Yes, most places you can get around in a wheelchair, but not places like the beach or skiing:) Plus, I do not want her to be made fun of or looked at funny. I want her to have it all! My heart is just so sadden and broken for my sweet Emma who wants so badly to run and play like her friends. She does not know that she can't, which is good for now. We treat her like nothing is different about her way to get around and most of her friends accept it as normal. We have worked hard to make it all normal for her and it seems to be working.

Mommy might be sad but life has to go on and we have to much going right to stay down for long. I know that I will continue to grieve what might not every happen, and I know that grieving is okay. I just have to deal with it the best I can. Which, is normally to not sleep, cry late at night, and love on my Emma.

I am emotional still running a little high, but getting better everyday. It is really hard to stay upset when Emma is so funny and full of life. Yes, it is sad to think your baby my never walk, but she does great in her walker and wheelchair. So, we wait on more news and never give up hope.

That is part of what has been going on in my life lately. It has really been weighing on me and I just was not ready to write about it till tonight.


Love and tears
Rachel

long time no writing

So sorry that I have not posted lately. My emotions are currently running quit high and ragged. A lot has been going on with my family and friends and I just do not have words to put with my feelings. But wanted to let everyone know that I was still around.

Emma is doing okay. She is not liking all the cold and icy weather we are getting currently. We are staying in a whole bunch and Emma really wants to "bye, bye, go" We had no PT this week due to the weather, so Emma is off the hook for another week on her new braces:)

That is about all I can say for now. I will write soon, about everything else going on. Till then, please pray for peace and understanding for my family.

Rachel