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

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.


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!


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

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

Saturday, January 3, 2009

Happy Birthday to Me

Today I am another year older. Yes that makes me 28. Wow I am getting old! My husband loves it, because for the next six months I am older then he is. I married a baby:)

So far it has been a good day. We went to lunch at Ruby's and went shopping at the Goody's in Dickson too, my parents took us to lunch. I am not feeling great but trying to enjoy the day regardless. Not sure what the rest of the day will bring, but I am sure it will be great. Just chilling with the family and enjoying being alive. 28 years ago my mom went into labor with me and 12 hours later they took me via c-section at a little after 8 pm. I was stubborn and did not want to come out!! What is funny is that Emma was also born via c-section at 8:16 pm too. Funny how that happens!

I am not were I thought I would be at this age, but I am happy were life has decided to lead me. I never imagined being a stay-at-home mom, but I am and love taking care of my little angel. I always thought I would have at least two kids by this age, but God had another plan for sure. My little one needs the all my attention and that is okay. I like being a family of three!! I love were I am in my life right now. It took me a while to become content but I am there. I am currently starting to work on a book about Emma in her wheelchair, and I hope to even try to get it published if it turns out good. My goal for my 28th year is to find a why to use being a special needs mom as a ministry of some sorts to help other families and to write children's book that showcase special needs children. There really is not a lot of books out there that have special needs kids as the stars.

So happy birthday to me and thanks mom for trying so hard to get pregnant with me and so sorry I made you get a c-section:) I like being difficult.

Here is to being another year older!


Thursday, January 1, 2009

Here is to a Happy 2009

I sat last night reflecting on 2008, and there was a lot of wonderful things and some not so wonderful things too. Emma has changed so much this year and she has had some ups and downs too.

The worst part of this year has to have been when I watched Emma almost code after her last major surgery. Her pulse dropped to zero. The crash cart was brought in and I was moved to another area as I sobbed very loudly. Luckily she came back very quickly. That happened a few times before she finally stopped. I on the other hand took a few days to recover from the whole episode. To watch your child almost code is a very scary thing.

The best part of this year, has had to been watching Disney on Ice with her. It was a fun day as a family to take her to her first stage show. She was so in awe.

Or maybe it was her learning to use her wheelchair and or her walker, and the freedom both give her. OR maybe it is just her being so cute and funny like she is everyday of the week.

Actually, I think the best part of the year is any part that does not have to do with either a doctor visit, therapy session or hospital stay. Last year we did only have one overnight stay at Vandy, and it was about four days long after her kidney repair surgery. She had two outpatient surgeries, countless tests, therapy sessions to numerous to count or add up, and many visits to her specialist. She added two new therapies to her schedule and finally dropped OT from her days. Which was great since it use to be her biggest problem area and it was her first one to drop.

We had a lot of fun! We had lots of play dates with friends, trips to the park, hours on end at her grandparents being spoiled, art projects, cooking fun, hikes in the woods, and so much more. We have watched her get bigger and older! She finally is in two toddler cloths!! Yippee!!! She has added new words and new tricks too. She is starting to act older, she loves her babies and playing pretend with them. She loves her kitchen and all her other big girl toys too. Everyday she makes me laugh and wonder what she will do next. She is full of surprises.

We hope 2009 will bring no hospital stays at all. We hope no surgeries either!! We pray she will get better mobility in some form to give her the freedom she wants. We pray that Daddy gets the promotion he really wants at the YMCA and that I pick up more story times at the library too. We hope to spend more time as a family relaxing and not just time at therapy or at the doctors. We want to start family movie nights on our couch with popcorn. All in all we want less stress and more fun

I pray that you and your family have a wonderful year full of fun and memories!

Rachel Zook