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
Thursday, February 19, 2009
Saturday, February 7, 2009
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
Friday, January 30, 2009
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
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
Thursday, January 29, 2009
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
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
Sunday, January 18, 2009
My new favorite store!!
Well, there is a lot I could write about, but words can not express the joy and the sorrow I have been faced with this week. My friends and family have had many ups and many downs this week, and at some point I will share more but I need to process it all before writing. Just pray for peace for all!
Anyway, Emma is much better! Thank you God! So, yesterday we left her with her Nana and Daddy and mommy went to town to run errands. My family goes to this bookstore in town to trade out books for store credit and then buy new/used books. The place is called McKay and it is crammed full of books, dvds, cds and much more. It is great and cheap. I have been with my mom a few times, but have not traded in my own stuff yet. So, we headed there first, and i made over $20 bucks to spend on some items. That might not sound like alot, but I bought Emma five new books,a new craft book for toddlers, a new movie, and myself a book too, and I still have ten bucks left for next time. I love when you spend a little and get a lot!
What a great deal I found. I basically use items I would have donated to goodwill or somewhere and turned into money to buy new books for Emma and I to enjoy. I bought her some used Barney books, since it is our new passion in life! Then, when she gets tired of them, I can take them back and buy her whatever is her new passion. I loved the time looking around and exploring all the used books and dvds. It is so much fun for me to be around all of it. I love to read and so does Emma.
I can not wait to go back and find some new/ used treasures.
Go and read a new book today!
Rachel
Anyway, Emma is much better! Thank you God! So, yesterday we left her with her Nana and Daddy and mommy went to town to run errands. My family goes to this bookstore in town to trade out books for store credit and then buy new/used books. The place is called McKay and it is crammed full of books, dvds, cds and much more. It is great and cheap. I have been with my mom a few times, but have not traded in my own stuff yet. So, we headed there first, and i made over $20 bucks to spend on some items. That might not sound like alot, but I bought Emma five new books,a new craft book for toddlers, a new movie, and myself a book too, and I still have ten bucks left for next time. I love when you spend a little and get a lot!
What a great deal I found. I basically use items I would have donated to goodwill or somewhere and turned into money to buy new books for Emma and I to enjoy. I bought her some used Barney books, since it is our new passion in life! Then, when she gets tired of them, I can take them back and buy her whatever is her new passion. I loved the time looking around and exploring all the used books and dvds. It is so much fun for me to be around all of it. I love to read and so does Emma.
I can not wait to go back and find some new/ used treasures.
Go and read a new book today!
Rachel
Monday, January 12, 2009
Sick Baby
Life is never calm at our house. Emma has the cold that will not go away. She actually has gotten quit worse instead of better. So, we are doing a lot of holding and movie time right now, till she is better and wants to play.
So, I am getting a lot of quality time with my little toddler and lots of snuggles, but not a lot of sleep due to her bad cough. She is not sleeping well at all which means neither are her parents. We are just hanging in. I feel bad for daddy who goes to work for a long ten hour day after little sleep. I am however, happy that he helps me out at night with her. Thanks daddy!
I did get the phone call today to set up her IEP meeting and testing to start in Metro schools. It makes me really sad to realize that she is about to be to old to be in TEIS anymore and that she will be a part of Metro Schools. Scary thought for sure! I use to be a teacher in metro and I never thought I would worry about her being in the system, but at her age and her limit mobility I am weary of what or where they will want to put her. There are many options and till they talk to us I guess I can not worry to much. We do know what we would like to see happen, which would be to put her in a preschool a few days a week, not a school five days a week. I am not ready for her to be gone all week long, but she will need to be in some type of program to get the therapies she will still need. I am worried though due to her not being able to communicate with us, at this point, what is going on when she is not with us. Not to mention her not being able to run and play like all the other kids. We have so many worries about her being away from us and I am so scared. But I have a few months to get use to the idea. Not that it will make it any easier. So, for now I worry and wonder till she turns three in April. Till then she is my baby and my baby only:)
Love and prayers to you and your family
Rachel
So, I am getting a lot of quality time with my little toddler and lots of snuggles, but not a lot of sleep due to her bad cough. She is not sleeping well at all which means neither are her parents. We are just hanging in. I feel bad for daddy who goes to work for a long ten hour day after little sleep. I am however, happy that he helps me out at night with her. Thanks daddy!
I did get the phone call today to set up her IEP meeting and testing to start in Metro schools. It makes me really sad to realize that she is about to be to old to be in TEIS anymore and that she will be a part of Metro Schools. Scary thought for sure! I use to be a teacher in metro and I never thought I would worry about her being in the system, but at her age and her limit mobility I am weary of what or where they will want to put her. There are many options and till they talk to us I guess I can not worry to much. We do know what we would like to see happen, which would be to put her in a preschool a few days a week, not a school five days a week. I am not ready for her to be gone all week long, but she will need to be in some type of program to get the therapies she will still need. I am worried though due to her not being able to communicate with us, at this point, what is going on when she is not with us. Not to mention her not being able to run and play like all the other kids. We have so many worries about her being away from us and I am so scared. But I have a few months to get use to the idea. Not that it will make it any easier. So, for now I worry and wonder till she turns three in April. Till then she is my baby and my baby only:)
Love and prayers to you and your family
Rachel
Friday, January 9, 2009
Weird Comments!!
Last weekend my little family meet Daniel's parents, sister and nephew at Red Lobster to celebrate my birthday. We sat down at the table to eat and the waitress asked us if Emma had nose surgery? Well, at first I was so confused about what she was talking about and then, she said I see the scare on her nose. Then, the light bulb came on and I realized that she was talking about the line down her nose that is part of her skin condition (it is a really long name, but basically Emma has two tones of skin and she is what we call swirly).
It was funny to have someone ask us about it. I forget that she has two tones of skin, to me it is normal for her and I do not see it anymore. So, it took me a moment to remember that it does not look normal to others. So, we told the lady that no she has not have nose surgery, but that she has a funny birthmark. Then, she went on to tell us about her daughter who has a weird birthmark too. Then, we went on with our dinner.
Later that night we laughed about the fact someone actually asked us about it, even though at the time it made me annoyed. However, I would rather have someone ask us about Emma then sit and whisper about or speculate about her.
This was not the first or the weirdest comment we have had told to us or overheard. We got a lot of comments when she wore her cranial helmet when she was younger. We got a lot of comments then and some not so nice. I guess I should be use to it, but every now and then it bothers me. I hate that someday she will not have us to shield her from the comments that might be harsh or unkind. But till that day my job is to shield her from comments from people who should think before they speak.
Love till Later
RZ
It was funny to have someone ask us about it. I forget that she has two tones of skin, to me it is normal for her and I do not see it anymore. So, it took me a moment to remember that it does not look normal to others. So, we told the lady that no she has not have nose surgery, but that she has a funny birthmark. Then, she went on to tell us about her daughter who has a weird birthmark too. Then, we went on with our dinner.
Later that night we laughed about the fact someone actually asked us about it, even though at the time it made me annoyed. However, I would rather have someone ask us about Emma then sit and whisper about or speculate about her.
This was not the first or the weirdest comment we have had told to us or overheard. We got a lot of comments when she wore her cranial helmet when she was younger. We got a lot of comments then and some not so nice. I guess I should be use to it, but every now and then it bothers me. I hate that someday she will not have us to shield her from the comments that might be harsh or unkind. But till that day my job is to shield her from comments from people who should think before they speak.
Love till Later
RZ
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