What a Wonderful Life

What a tiring day. We have spent the day putting up Christmas trees (not my own), at my grandmother's and my mom's house. My grandmother is 88 and still loves to decorate for Christmas, so we helped put her tree up for her. She was so happy to have it done, and it was the first tree Emma had seen this year. She really loved watching us put it up and plug it in. My Grandmother loved watching Emma help:)

Then, we headed to my mom's to work on her house, and Emma laid down for her nap! It is a lot of work, but worth it in the end. Emma woke up from her nap, and my mom's house was decorated to the hilt with Christmas. My family loves Christmas and has tons and tons of decorations. She was in awe! She just stared and said wow! It was so cute and sweet to watch her look around and take in all the beautiful decorations. Then, she started saying bobobo which if you do not know that is really hohoho!

It made all the hard work of dragging out the tons of boxes my mother has and unpacking them, worth it! Now, we are just watching a Hallmark Christmas movie and laughing at Emma taking apart the Mr. Potatoe Head Santa apart over and over again.

It has been a long day, but worth the hard work. Now, maybe tomorrow I will have the energy to do my own house or maybe it will be next week when I do it. I am sure it will get done at some point soon.

I am loving how much she loves all the Christmas decorations and I am really looking forward to seeing her meet Santa again this year. Last year she cried and screamed. I am hoping that does not happen again this year. But if it does it will be another memory to laugh about in the years to come. I am thrilled to see her look at the lights in the neighborhood and open presents. She is a little bit older then last year and I think it will be even more fun then last year.

My promise to my family is to try to slow down long enough to enjoy the holiday season and all the wonder it brings this year. My charge to you is to do the same. Relax and enjoy the season of Christ's birth. It does not matter in the long run if all the bows are perfect or if every present is found and bought. Relax and enjoy!

love Rachel

So Thankful

This year I am so thankful for so much.

First and foremost, I am thankful for my family who loves me no matter what! My family has been such a big help and support as my husband and me continue to care for our little angel. I am not sure what I would do without each and every one of them. I would list them all but you know who you are!!!

I am thankful for my husband who works two jobs to allow me to stay home and take care of Emma. Daniel you are the love of my life and I am lucky to have you as my partner.

I am thankful for every little giggle and smile my Emma gives me. Not to mention all the singing of Mickey Mouse she does too. I have cried many tears over her many illnesses and surgeries, but I am thankful for her little life and her everlasting joy for life and her peeps!! She is my heart and soul for sure. She will always be my angel!

I am thankful for all my friends who support me on the good and the bad days. So many of you know what I need when I need it and just do it. It means the world that you understand how complicated our life is and you do not mind when I go for weeks with no time to talk or get together. Each and everyone of you are dear to me and I would not be able to stay as sane as I still am without your help! YOu all rock!!!

I am thankful for God being so good in the midst of all the craziness and the storms that rage around me. But God is faithful and is always there holding my hand no matter how bad or good things are going.

There is so much I am thankful for, but right now I am thankful for the yummy food i am smelling downstairs, and I am going to go check on my first of two Thanksgiving dinners. One tonight and one at my house in the morning. YUMMO

Love and thanksgiving to all
Rachel

A moment to vent

I must finally share a situation that has been going in our life for a few weeks. I have not shared this on line, because a friend who reads this blog was not aware of this situation and I did not want to be the one to inform her. (Hi Melinda)

Anyway, we found out in October that Emma's diagnoses of VACTERL was taken off the list of disabilities for her Tennessee Early Intervention. This is the organization that takes care of birth till three and helps them get therapies and schooling before they are old enough to be in the Metro schools. Anyway, when she was referred to the TEIS (short for the Tennessee Early Intervention) she was automatically accepted due to her diagnoses. She did not have to be tested and all of that. Well, this year they cut her diagnoses off the list, and we had to go through more testing to continue with her therapies and such.

I was very angry with this and the undue stress it caused to worry about her qualifying again. Here my child does not walk or talk, and I am being told that she may or may not continue with her therapies. How can the state say that VACTERL children, who are born with so many health problems, do not need help and support. They obviously do not understand how much we deal with everyday and how we could not make it through without the help and support from TEIS.

Emma did have enough delay to stay in TEIS, but now our friend Melinda and her daughter are having to worry about her staying in the program. Melinda is so worried and stressed too. This is just causing undue stress on all! The state needs to wake up and realize that VACTERL is serious and affects children for a long time. I believe I will start a campaign soon to help them understand the stress and heartache we suffer due to VACTERL. It is a rare illness but it is very real to the families who fight it daily.

Okay I am better now that I took a moment to vent.

Ooopps! Emma has dropped her Mickey Mouse and needs some help

Rachel

Broken Hearted

So, sad to report that in fact the adoption my friend was trying to complete, fell through. The mother decided at the last minute to keep this baby girl.

My heart is breaking for my dear friend and her family as they are trying to cope with this latest heartbreak. They already had a deep love for this little girl, as they had spent time caring for this baby in the hospital and they had spent months getting ready for her at home.

Even though they will not be bringing her home, they will forever love her and pray for her safe keeping.

Please pray for their healing during this very difficult time! Pray that friends and family can find healing words and actions to care for them as they arrive back her in TN. Pray for their beautiful son Owen as he also is mourning the lost of his sister.


Words can not express how sad we all our and how we wish this ended differently for all involved.


With sadness and hope for the future.
Rachel

sad news/breaking heart

It is with a very heavy heart that I share that my friend Adrienne, Jim and their precious two year old Owen, are right now dealing with the very harsh reality that they may long be bringing home their precious baby girl.

The birth mother has had some second thoughts and has decided to take the baby home with her now. We are not sure right now if this is the end for my friend and her family, but they are having to wait and pray hard that this be resolved in the best way for the baby.

I can not imagine what they are going through as they have already spent lots of time with this baby and prepared for weeks for her arrival, and now they do not know what will happen. My heart is breaking as I know how badly they wanted this baby girl. Adrienne has dreamed of her for so long and thought her dream was finally happening. Now she is living a very real and vivid nightmare.

Please pray that they are able to find some peace as they wait and that they are able to explain to their son what is going on. He is a very smart boy and was already in love with is little sister. This will be very hard to explain to such a young child.

I will let you know when I know more details or when a final decision is made by the mom. In the meantime we wait and pray! that is really all we can do.

My heart and love go out to my friends!

Rachel

Make me smile

Things are looking up this week.

Quick update to the story that follows: The mother who is suppose to give her baby to my friend (read below to learn more) is having second thoughts. Please pray this adoption does go through, as my friend and her family are already attached to this little angel.

Two things are really making me smile right now.

First of all Emma. She has been so silly this weekend. She has been chatty and giggly this weekend. That has really warmed my heart this weekend. She is such a sweet heart and the love of my life!


Second of all, a dear friend of mine is in the process of bringing her soon to be legally adopted newborn baby girl home from the hospital. I can not say much right now, because it is not legal as of yet. My friend Adrienne has had a lot of heartache trying to carry a baby to full term herself, but she and her husband Jim have been blessed to adopt a little boy (almost three now) named Owen last year from Russia. He was a little over one when they adopted him and brought him home. Now, they are being blessed again with their baby girl who was born last Friday.

I am so happy for this family. They are so sweet and so caring. They have been through a lot of sadness, but a lot of happiness with Owen and now this new baby girl too. I am looking forward to meeting this new addition when they return from New Jersey, where she is being born, and sharing their excitement on their growing family.

I wait anxiously everyday to read her blog, and hear all about the time they have spent with the baby in the hospital, meeting the mom and grandmother, and how Owen is loving his new sister. It makes me so happy to share this experience through her blog. They will have great memories to share with the baby when she is older. She is a lucky little girl to have two families who love her so much. One who wanted to give her the best she could, by giving her to a family who will be able to do just that, and one who waited to happily to meet her and take her home as their own.

It has made me reflect back to Emma's birth and how she was born and her story of birth. In the first 24 hours Emma went for a ride in an ambulance and survived her first tornado. Yes, she did! About four hours after birth she was transferred to another hospital, hence the ambulance ride, and then the next day a tornado ripped through Nashville. It did not do too much damage here, but it did go through here. So, she had a lot happen in a short time. I guess everybody has a special birth story. I know Emma does and so will this new addition to my friends family.

Love and I hope to share more when I am able. Just pray that the Fleming family has a smooth transition from a family of three to four, and pray for Jim and Adrienne as they take on the care of another special little child. They are great people for deciding to care for those who need it.


Rachel

Busy week and a sad mommy

So sorry that I have been MIA this week. We have been busy with therapies this week and trying to get Emma better. They finally got her on a better and stronger medicine late Sunday night and it seems to be working, but making her cranky. We are just praying this does not mean her kidneys are getting worse. That is a one of the warning signs, but we pray it is not. We see her kidney doctor next week, so hopefully he can make me relax about it all. He is good at that. We see him a lot and he is a great doctor who really cares for Emma.

I am having a low week. They happen ever so often. Sometimes it just gets to you when you constantly are dealing with so many doctors and therapist. I feel that I am constantly either heading to an appointment or coming from one. Our days are full and not full of friends and play dates.

Anyway, Daniel and I had a long talk last night and I shared my emotions with him, and I feel better today. I sometimes just get so frustrated that she is not able to walk yet. I dream nightly of her running and dancing around. I am sure that someday this dream will be a reality, but in the mean time it is still hard to watch your child struggle to accomplish simple everyday task like getting to her toys, finding her mom in another room and so on. She is able to get what she needs and all but it is not at the speed or the way others around her do. She gets so mad at her cousin who runs around and leaves her. Not to mention the looks we get when people realize that she is as old as she is and does not walk or if she is in her walker they stare too. I just want to yell what are you looking at!!

I am blessed though to have such a loving daughter who makes me laugh daily even when I am down. She has such a love for Mickey Mouse, outside playing, her family, fish and so much more. She plays with her music and sings all day long. Her sweet little voice could melt any heart.

Anyway, all in all it has been a busy week and Emma is slowly getting better. I am too! Hopefully with a few more talks with my loving husband I will snap out of my down time:)

Doctor Drama

Well, yes Emma does have a UTI. But to find that out was lots of drama. Emma does not have normal anatomy down there, so to get urine for the test is lots of fun! NOT!
The nurse we had yesterday was new to Emma, and had not had to do this yet. So, she set it up and tried not once but twice to cath her. It did not happen. Emma was beside herself with screaming and crying. Tears actually collected in her ears while she laid there. Finally they gave up and asked us who had been successful with her. We told them Pam could always get it. So, they went and got the other nurse. She got it in a heartbeat and Emma peed. Yeah! Pam tried to tell them what to do for the next time. Poor Emma! But it was worth it since she is sick. We do not like to torture her, but when it comes to her kidneys we do not take chances.

Now, we wait and make sure the meds they gave her are correct, if not we change them or head to the hospital to get IV meds. We pray that does not happen since the last time she needed IV meds we were there for 10 days. We do not want to experience that again. It is no fun!

Anyway, just a update on yesterdays drama. My ears are still ringing from the screaming, but she is doing better already.

Rachel

Never a dull moment

Well, this morning we woke up and I tried to decide what we should do this morning. Normally we go to story time on Thursday's, but she has a little cold, and I was not sure she should go. So, I decided with Meme that since this was the last of the warm days we are expected to get in the next seven days, we would go to the park and play in the nice fall sun. So, we loaded up and headed down the highway to Meme's house. During the drive I talked to Emma all about the beautiful fall leaves. They are so pretty right now, lots of golds, reds and oranges. Emma just looked out the window admiring the beauty she could see.

Life was so good as we traveled down the road with all the fall leaves falling on our car.

We got to Meme's and Hudson was asleep. So, we sat down and Emma played for a little bit. During this time, Emma got more and more cranky. She has been weird all week, but today is worse. So, we think she might have a UTI. Which, is not good when she already has damaged kidneys. We never want an infection. So, now instead of going to the park, we are heading to the doctor. We canceled a late afternoon eye appointment to head to see our PCP. There goes today's plans of fall fun in the sun!

Like I said never boring, and I should know better then to plan anything. Plans seem to change when Emma's involved.

Frustrated and praying for no infection
Rachel

Halloween Fun

Halloween last night was so much fun. Emma loved to wear her little Minnie Mouse outfit, even if she did not like her ears. She was still not too sure about going up to houses, but she liked getting stuff in her bucket. She would not say hello to anyone, but she yelled bye bye to everyone really loud. Emma was really happy to have her new friend Kadence with her in her wagon for trick-or-treating. Then her friend Owen joined us for a few houses too! Emma loved having her peeps with her.

This year was a little different since we stayed home instead of going to Meme's, but we had a blast. We decided to have a few friends come that were her age, and have pizza and then head out to get candy. It worked out pretty well. I got a great workout lifting her in and out of the wagon to go up to houses!! But the wagon was easier then a stroller for sure.

It amazes me how much she has changed with each of the three Halloween's she has been alive for. She was only 6 months old at her first one, and she was a fat little frog. Then, last year she was sitting up and smiling big in her little duck outfit, but this year she looked like such a big girl in her Minnie outfit in her little walker. She was such a big girl, and I started crying when I lined up all three photos (I had printed out a photo from her halloween party at the library this year). I sat in my bedroom crying as I reflected on how much she has changed over the years. She is really starting to look like a big kid. I am not sure if I like that yet or not. But I guess I do not have much choice do I?

Anyway, Emma and the family had a great Halloween. Each year gets more fun as she understands more and more what is going on. Next year she will probably want to eat her candy, instead of letting mom eat it! This year it was just so exciting to cut a pumpkin and wear her costume. She just squealed with delight the whole time. Life was good for all!

Rachel