Babe in Toyland

Bella has had a wonderful Christmas holiday. Her last day of school before the break was spent at the mall with her classmates. She sat in Santa's lap, rode the carousel, and tasted her first Icee. The Icee and carousel left something to be desired, but I think she enjoyed being in Santa's lap.



Christmas Eve was spent making homemade chocolate chip cookies for Santa (i.e. mommy) and reading "Twas the Night Before Christmas." Then Christmas day began with a 2:30 a.m. wake-up call from Bella. She wanted to rock, of course, and have some bottle. While rolling around on the floor she discovered her present from Santa ..... a bean bag chair! I put her in it and she started giggleing right away. I think it is a winner.


Christmas morning (the real Christmas morning, after the sun came up) was spent eating breakfast and trying to get Bella to open presents. As you can see there are no pictures of Bella opening presents because she didn't want to. I think she was a bit too tired to care about presents. But we had a great morning having breakfast, playing on the bean bag chair and rocking Bella.

Before I wrap up this blog I have to share something with all of you. On Christmas Eve we had a knock at the door and a lady had gifts for Bella. All she would tell me is that it was a Secret Santa. So to the Secret Santa, Bella and I would like to say thank you from the bottom of our heart. It was so kind and generous and much appreciated. The spirit of Christmas lives on.

Love,
Jen and Bella

P.S. Bella says "Ho, ho, hooooo!"

Bella, what did that boy say?

When I picked Bella up at school today, her teacher had a very interesting report to give me. During circle time, Bella started laughing out loud, and if you know Bella, she laughs loud. When the teacher looked in Bella's direction, it appeared that what was making Bella laugh was a certain boy sitting next to her. He apparently had whispered something in her ear. Well, most of the kids had never heard Bella laugh, so in their delight, they began laughing too. It became so racous that the teacher just had to stop and enjoy the show. Now, what I want to know is.....what did that boy say to Bella? I've asked her and she won't tell me! I don't know what I'm going to do with her.

Pray for me 'cause I'm not ready for boys yet!

Jen and Giggly Bella

Nothin' Slowin' Her Down

Bella never ceases to amaze me. She has done very well with her chemo so far. The only change I've noticed is that she is not sleeping as well. Most of Thursday night was spent mainly in the TV room with her wanting to play and do her little flips from my lap. Friday she did much better, but Saturday and Sunday she, again, wanted to get up more than once. Needless to say, I'm pretty tired, but have had my helpers. Bella's Nana came over yesterday to watch her so that I could get some rest. We'll see how round two goes....

New Chemo

Bella began her new chemo treatment today. So far things are going well - no nausea, no vomiting. I'll be giving her medicine for nausea throughout the night and for most of tomorrow just as a precaution.

Talking with her doctor today helped tremendously. Most of the serious side effects (holes in the stomach/intestines, diarrhea, protein in the urine) are rare so that is a relief. I just keep praying that she will be spared from these. And the neuropathy (tingling in hands and feet) that I suspect she has been experiencing, may diminish a little.

So all is quiet in the Shoemaker household for now.

I just want to thank all of you for your words of encouragement. They really help me get through the tough times.

Love,

Jen and Bella

A Lost Battle, But Not a Lost War

So we received Bella's MRI report today. The tumor has started to grow again. Now Bella is facing a new coctail of chemo drugs for up to two years. I was so looking forward to her going off chemo at the end of December, so this is a big blow to me. Like always, I keep it together because I've always had to. I think there have been times when I have been criticized behind my back for not showing more emotion, but someone has to keep it together while everyone else falls apart. And by this point in time, it is like second nature to me. I don't have the luxury of falling apart, especially now. The most important thing for me is to provide a positive environment for Bella - full of laughter and love. So I hold it all in so that she doesn't hear the sadness in my voice or the gut wrenching sobs. Laughter is infectious and so is sadness. So I just keep on laughing.

People tell me how strong I am through all of this, but I cannot take any credit for it. My faith is what keeps me strong. God has carried me through all of this. I don't know why any of this is happening, but I know that God is with me and He's with Bella. Whatever our need has been, He has always pulled through for us. And I know He will continue into the future. So that is why I can say that we may have lost this small battle, but the war is not lost. Bella is a fighter and so am I. As long as she wants or has the strength to fight, I will do whatever she asks of me to help her.

Please keep us in your prayers.

Jen and Bella

Little girl, what do you see?

Just had to share some amazing news. Bella had an opthalmologist appointment today down at Vanderbilt. Her doctor said that the optic nerves look the same as last year which indicates that her hydrocephalus is stable and under control. Also he confirmed that the optic nerves are working a little we just don't know how much. During his exam, the doctor used a light to look in Bella's eyes. Her eyes began to jiggle from side to side. The jiggling is caused by the brain's attempt to focus on something. I was thrilled that he was able to see her eyes doing this because she doesn't do it often. You always feel like a nut when you tell a doctor your child can do something, yet the doctor doesn't get to see it for himself.

Here's the best part of the whole appointment. In talking to her doctor, he revealed to me something that no doctor has ever told me. As Bella's neurological function improves, her vision could improve as well. It might not be a huge improvement, but any improvement would be wonderful to me. I've been so worried about making sure that she doesn't lose what little vision she has, that I never gave a thought to the possibility that her vision could improve. On the way home today I cried for a full ten minutes at the sheer joy that my little girl might gain a little of the vision she has lost. I never let my heart dare to have that hope and now I'm full with hope. I know that Bella will never fully see. She may always just see light and dark, but there is hope that it might be just a little more. This is another example of how God has his arms around my dear Bella and that he is taking care of her. She is my miracle baby.

Peace to you all,
Jennifer

Woof, Meow, Moo

Bella girl is getting to be so big. She can now "meow," "bark," and "moo" with the best of them. She is starting to cruise a little around my coffee table and is crawling over things. School has been a bit of a challenge because she's not rocked at all. There isn't even a rocking chair in the classroom. However, she loves circle time when the teacher plays music and has the class sing songs and dance. Bella will do her shimmy shake dance and keep the beat by bouncing her feet while sitting in her chair.



Recently Bella had her hair cut professionally for the first time. We started out with her sitting in the chair but had to put her in my lap because she was so upset. We ended with hair all over the two of us. In the end it was all worth it. Bella's hair looks much thicker now.



Other than school and haircuts, Bella and I were busy traveling down to Atlanta to see my Georgia family. We had a fantastic time. My dad and I went to an exhibit called "Dialog in the Dark" which is an exhibit that immerses you in the world of the visually impaired. You walk through the whole exhibit "blind." For the tour, there are no lights and you have to navigate through different scenes and experiences. I have a whole new outlook on Bella's world and what she must have went through when she first went blind.

I would just like to ask that you keep us in your prayers. Bella has an MRI in early November, and if it turns out well, then she will be able to go off chemo in December.

Jennifer

Preschool Here I Come!

Bella became a big girl last Wednesday when she started preschool. There were a few bumps in the road, but overall I think it was not too traumatizing for her. Her teacher, Mrs. Wallin, is enthusiastic to have Bella and I think Bella will learn so much from her teacher and the whole school experience. I must say that the first day was a little emotional for me. I teared up when taking her to school the first day. It has always been Bella and me at home doing our own thing with therapists coming to us, or going out to rehab here in Bowling Green. Now starts a new chapter in Bella's life. With preschool starts the slow transition to independence. I'm so excited for Bella and all that she will experience, but it is a sharp reminder that she is no longer my baby.

Jen and Big Girl Bella

Bella, Wondergirl

Since her birthday, Bella has been gaining in her superpowers. She is scooting on her bottom, climbing on the coffee table, using more signs, saying momma, and...... is army crawling! She is now VERY mobile. I will find her all over her room now. She goes from her bed to the changing table over to her ottoman finally landing in her closet.

Last week we returned from Atlanta where we visited with my dad, stepmom, stepsister, and family in Alabama. While there, Bella went to her first baseball game. She cheered the Rome Braves on to a 8-2 victory.

August is fast approaching and with it brings another MRI and school. I'm hoping that both will meet my expectations. As far as the MRI, I am very hopeful that it will show no growth in the tumor. Her oncologist said months ago that development is the biggest indicator of what's going on in the brain. Since she has been developing so much, I'm hoping that nothing is going on in that brain of hers except sassiness and lots and lots of development.

I just want to thank all of you who keep up with the blog. Please continue to keep Bella in your prayers.

Love,

Jen and baseball lovin' Bella

Bella's Now Three

Yesterday was Bella's third birthday. We had loads of fun, food, family, and friends. And Bella's birthday theme.....Cheerios!

Bella is doing great. She's pulling up more and can climb into her recliner all by herself. And now she is sleeping in a big girl bed. Last night was the first night in her bed and she did great. She didn't fall out until this morning. That's pretty good for her first night! Now, if I can just get her potty trained.....

Jen and birthday girl Bella

Bella Big Girl

Bella has a new trick! She can pull herself into a standing position. Check out the video to see what a big girl she has become. Now that she's pulling up the next step is......walking! Watch out world. Here comes Bella!

Jen and Big Girl Bella

Good News!

We received the results of Bella's latest MRI and it's good news! There is no change in her tumor so the chemo is doing its job. As you can see, Bella is doing well. Just like any kid, she loves to make a mess and throw toys around everywhere. She's "singing" now and loves to get up on her feet. Soon she will be running around on those feet. She has learned her left from her right and we're working on "behind" and "in front of." Like most kids her age, she likes to get her way and will throw a tantrum if she doesn't get her way. She is the most amazing kid. I know I say that a lot, but it is true. She has true grit!

Jen and Texas Tornado Bella

Bella's Sledding Adventure

Bella has never really experienced snow before, so what better way to make an introduction than to go sledding. I think the jury is still out on whether she likes it or not. Hope you enjoy the video!

Jen and cruzin' the slopes Bella

Bella the Cupid

Bella has played matchmaker and we didn't even know it. A nurse at Bella's pediatrician's office and another member of the staff have come together all because of our sweet little girl. Bella had blood drawn at the pediatrician's office this summer and the person taking the blood needed help. So the nurse came in to help and came into contact with latex which she's allergic to. So the staff member drawing Bella's blood checked up on the nurse a few days later and they started talking. The rest, as they say, is history.

This incident has me thinking. Maybe I could rent Bella out to be a matchmaker. If you are needing a love connection, let me know. Bella's hourly rate is one box of Cheerios.

On that note, Bella and I would like to wish everyone a Happy Valentine's Day.

Ciao,
Jen and Cupid Bella

A New MRI and Hospital Stay

Bella was in the hospital again this weekend. She developed a high fever on Friday and had to go to Vanderbilt for a blood culture. Since her fever was so high the doc decided to keep her overnight for observation and to see what the culture would do. As of last night nothing had grown in the culture, but they will keep checking it over the next four days. She's been very tired today but is drinking well and eating a little bit.

However, we did get the results back on her new MRI. Things looked really good with no growth. A few spots lit up brighter, but the radiologist and her oncologist do not think that the spots indicate activity of the tumor. They've based this on how well she has been doing over the past several weeks. If the tumor was active, we would see a regression with development, irritability, possible dehydration, as well as a host of other symptoms. But she is showing none of that, so we are moving ahead with maintenance chemo.

Bella's development has been amazing. She will get up on her knees and is now trying to stand up on her feet. It won't be long before she is walking and getting into one thing or another. I see my life changing dramatically in a matter of weeks and I can't wait! She will be one little sassy pants on the move.

Jen

Finally home

Just wanted to do a quick post to update everyone. Bella has been in the hospital for the past few days. On Friday she spiked a high fever. Her oncologist wanted her to come in so they could draw blood and do a culture. Anytime someone with a central line, port, ect.. runs a fever the fear is that there is an infection in the line. So we go down to Nashville on Friday and were admitted because her counts were so low and her fever wasn't coming down fast enough. And then she stopped drinking fluids and eating anything. By last night she finally started drinking and eating. As of this morning nothing has grown in the culture so she probably just contracted a nasty virus. Please keep the little one in your prayers.

Jen