April, 2008

Wednesday, April 30, 2008 8:55 PM, CDT

First day of physical therapy. I have to admit, I was a little nervous. Zoe once again revealed her strength. Not only did she enjoy the stretching and message, she actually fell asleep in the middle of her session! The therapist continued the session through Zoe's sleep and was able to open her hands all the way (this is a huge deal)! She said she was very pleased with how well Zoe was doing and was expecting Zoe's muscles to be much more tense than she found them to be. Way to go sweetpea. Mommy's so proud of you!
Today, Zoe decided she would rather listen than watch, so her eyes were closed most of the day. I think she was playing a trick on me. Just when I thought she was sleeping and I would pick her up to take her to her bed, she would open those bright eyes and look right at me. Silly girl!
Thank you God for another wonderful day with my amazing daughter.


Tuesday, April 29, 2008 6:51 PM, CDT

The last two days have been wonderful. Zoe is doing so well. We ventured out to Costco yesterday for a little shopping. She enjoyed that very much. She was awake the entire trip and laughed when I tried to eat her toes. Everyone at Costco commented on how beautiful she is.
Today we went to visit Zoe's great grandparents. We spent a few hours there and Zoe did very well. Grandnana and Poppie loved seeing her.
Zoe hasn't choked in 2 days by the way. YAY!
Tomorrow is her first physical therapy session. I'm very interested to see how that goes. I will be posting tomorrow again for sure to let everyone know.
Love you princess!


Sunday, April 27, 2008 8:54 PM, CDT

We're back!
It was a successful trip! The weather was beautiful and Zoe and her brother Michael had a wonderful time. We played outside and hung out with Papa and Gramma and just enjoyed the change in scenery for awhile. Zoe was happy the whole weekend. I do think she's happy to be home though. As soon as we walked in the door, I put her into her bed and she fell fast asleep. She's such a cutie.
Zoe is still choking daily. No refluxing as far as I can tell. Her choking is mainly from her having trouble swallowing her saliva. Today she only choked once, which is good, but it was one that scared her pretty bad. I hate to see that look of fear in her face. She has been pretty strong though. She recovers on her own every time.
Hopefully I will get the pictures from this weekend posted soon.


Thursday, April 24, 2008 11:00 PM, CDT

Zoe is having so many good days that I am running out of stories to tell. Her only downfall over the past several days is her choking. She has had choking episodes every day for about a week now. I think she's learning to deal with it because she doesn't get too upset over it anymore. She's so little yet so strong.
Tomorrow we are taking a trip to cooler climates. We are traveling to Prescott for a couple of days. I think she'll enjoy a change in scenery for awhile. I won't be doing updates again until Sunday.
Over the past several weeks, I can't seem to get the words to this song out of my head:
"I believe there are angels among us. Sent down to us, from somewhere up above. They come to you and me in our darkest hour. To show us how to live. To teach us how to give. To guide us with the light of love."


Wednesday, April 23, 2008 10:00 PM, CDT

The hospice nurse (Nicky) came by today. She shed a little light on why Zoe may not be opening her eyes much lately. She has been a hospice nurse for over 25 years and has treated several patients with neurological conditions. She explained that a lot of her adult neuro patients have explained to her that it is much easier for them to consentrate on their surroundings when they close their eyes. Basically, their brain gets "overloaded" very easily. So, the fewer stimulants they have, the easier it is to deal with. Nicky stated it could be the disease, but it could also be that Zoe has learned to deal with her surroundings by shutting out some stimulants, or closing her eyes. This may make it easier for her to hear me and feel me. My little princess is so smart!
Today was another great day. What a strong girl I have. She actually did open up her eyes quite a bit today. Zoe played with her Daddy a lot today since I was cleaning up after brother Michael. She is such a Daddy's girl. Her face just lights up whenever she sees him.
She is in a peaceful sleep now. She is so precious. I can't wait to see her bright eyes when she wakes in the morning.


Tuesday, April 22, 2008 8:12 PM, CDT

Well, for the most part Zoe was a happy girl today. At least that's the feeling I got from her. She still isn't wanting to open her eyes much. In fact, a few times I couldn't tell if she was sleeping or awake. I know she is happy though because she cracks a tiny little smile when she realizes I am talking to her. When I pick her up, the smile gets even bigger and she sometimes lets out this blissful sigh that is music to my ears.
We went for two walks today. The first walk Zoe was in her stroller. It was kind of a long walk in the middle of the day and a little warm. By the time we got home Zoe was a little too warm, so we played under the fan for a little until she cooled off. The second walk was in the evening just after the sunset. It was a perfect time for her. It was the only time she opened her eyes all day today. This time she rode in her wagon. She really seemed to enjoy it. Next time I'm bringing the video camera.
Zoe, have I told you lately I'm proud of you and I love you.?


Monday, April 21, 2008 9:06 PM, CDT

Today was a lazy day for us all. We had an all day jammie day. Zoe was back to being pretty groggy today. She didn't seem interested in opening her eyes again for most of the day. I still managed to work a few smiles and laughs out of her though.
She did choke a couple of times again today, but it was nothing serious. She didn't even cry about it. My tough little girl.
We have decided Zoe's life is so precious to us that we want to celebrate it as much as possible, so we will be celebrating her birthday every month, from now on. May 10th she will be 8 months old. Wow. She's getting so big. I love her more than words.


Sunday, April 20, 2008 9:46 PM, CDT

Another great day!
Yet another awesome day with my princess. Although she was a little more tired today, overall she had a great day. I assume her sleepiness was due to her long day yesterday. It takes her awhile to recover. Zoe is still sleeping through the night and having longer, happier periods of wakefulness during the day. She's such a sweetie! She has really been enjoying her exercises lately. She thinks it's so much fun to move around.
The only "issue" Zoe has been having over the last 3 days is that she seems to be choking more frequently. Since she is not fed through her mouth, it is her saliva making her choke. Not much we can do about that. The choking hasn't been too bad, it just tends to scare her (and mom) a little.
We get to weigh her again this week. I can't wait to find out how much bigger she is. Zoe has been gaining weight regularly over the past several weeks. Since she has been sleeping through the night lately, she has been missing one feeding every day. I'm hoping this hasn't affected her weight gain. If it has, we will have to set up a slow, continuous feed for her throughout the night so she still gets the amount of calories she needs to grow. Not a big deal.
Still hoping to get Zoe out of the house more. We're in the process of making plans to go up to Prescott with Papa for a few days. I think she'll enjoy that. When the wind dies down a little, we'll veture out more often. Can't wait!


Saturday, April 19, 2008 9:46 PM, CDT

Back up and running
Thanks to a Mr. Terry Weinberg, our computer is now up and running and ALL of our memories have been recovered! YAY!
Yet another awesome day for little Zoe. We ventured out to Avondale to visit her great grandparents. (For those who don't know, Zoe's great Grandfather is also terminally ill.) Zoe had such a good time, we spent the entire day there. She offered just a few smiles because she was too busy taking in all the new scenery. She didn't cry even one time ALL day! This is a huge feat for Zoe. Mommy's proud of you baby girl!
Zoe has now been sleeping through the night, a first, since her birth. I know she's content now. She has also decided she feels good enough to enjoy a lot of movement. So, we've been running around chasing brother Michael inside and outside. She absolutely loves when mommy runs with her. She enjoys riding in her wagon too, but because of the silly old wind lately, we haven't gotten out much. Soon sweetheart!
Hopefully, we can now begin to take Zoe out to enjoy new experiences.


Thursday, April 17, 2008 9:45 PM, CDT

A message from Sarah --- Zoes’s computer is down
Another hurdle for the Gavriilidis Family... Computer down! Sabrina will not be able to post until their computer is up and running again. Until then, you are stuck with me. I will try post new blogs via Sabrina.Yesterday was a good day. Changing Zoe's sleep position seems to help with her swelling. Our Miss Zoe has been so sleepy that she didn't wake up in the middle of the night for her Mommy & Zoe visit. When Zoe is awake, she opens her big beautiful eyes and carefully listens when mommy whispers funny songs and poems in her ear. She just coos and giggles. Mommy is so funny!~Sarah


Tuesday, April 15, 2008 9:44 PM, CDT

So, the first half of Zoe's day was yet another groggy day. She slept a lot and didn't seem too interested in her surroundings. Just after I had a breakdown, she decided to shape up. The second half of her day was much better. We played with Aunt Sarah in the playroom and Zoe was very interested. She loved all the toys that played music and lit up. She kept her eyes open most of her waking hours until bedtime. I love those eyes.
The hospice nurse came to check on her today and pretty much everything seemed normal. The only thing we pointed out is that the right side of Zoe's body seems to be pretty swollen. Her eye, her arm and her leg. The nurse is going to contact the Doctor and get back to us on that.
As the day comes to an end, I can't wait for our "middle of the night visit." That is usually her happiest time.


Monday, April 14, 2008 9:44 PM, CDT

Another day with my girl. Mostly a good day today. We had some giggles. She's still really groggy. I'm starting to get concerned about it. She doesn't seem too interested in opening her big beautiful eyes lately. She opens them to just a small crack. It's hard to tell if she is even looking at me.
I'm still hoping she needs some time to adjust to her meds, praying actually. Please, just let it be her meds.


Sunday, April 13, 2008 9:43 PM, CDT

Today was much better than yesterday.... Zoe was a happy little girl. She woke up in the middle of the night, just once at about 2:30am. She was so happy to see me when I picked her up. I laid her next to me on my pillow. She must have thought that was funny because she started laughing so hard her little belly was shaking and her face turned bright red. Then she started cooing at me. She is so beautiful. I'm so happy to be her mom.
She was a little groggy throughout the day. I don't really know why. I haven't changed her meds in almost a week. Maybe she just needed to catch up on some sleep. Other than being groggy, she was perfect all day. She got to ride in her wagon in the back yard. She sat in the grass, felt the breeze in her hair (she thought the wind was very funny). We watched cartoons together and played with big brother.
Today was amazing. Mommy loves you Angel!


Saturday, April 12, 2008 9:38 PM, CDT

Last night, Zoe slept very well. She had a 6 hour stretch which is VERY good. She has been pretty groggy all day, but happy for the most part. During one of her naps, I heard a strange noise comming from the monitor. I went in to check on her and found her choking. She was gasping for air and her lips were blue. I picked her up, turned her on her side and began patting her back. She started crying right away (thank God). I had to decompress her tummy (I install a special tube into her stomach to release the gas) which made her feel better. This is something I now have to do several times a day as Zoe is unable to burp enough to release the gas she produces. After a few minutes, we both calmed down and she went back to sleep. It took me longer to calm down than it did her. My poor baby. She also had a seizure today. Her little arms and legs suddenly fly straight up in the air and her back bends tightly for a few seconds and then she begins to scream. This doesn't last long but it's torture for me to watch and her to endure. I wish I could take it all away from her. A mother is supposed to protect her children. This is something I cannot protect her from and every day it breaks my heart.