May, 2008

Friday, May 30, 2008 8:50 AM, CDT

I want to thank everyone for the journal entries lately. It is very comforting to read all of your thoughts and prayers and to know there are so many people who care for us and our daughter.

This past week has been such a roller coaster for us all. Zoe has struggled and continues to struggle with her digestion. Her choking has become less frequent, but still happening, nontheless. I'm trying her at 3 1/2oz. again today. I can't bare the thought that she may not be getting the nutrients she needs.

If there is anyone reading this that can suggest any type of supplement we can give her or add to her formula that will not increase the volume but will increase her caloric intake, we will greatly appreciate the advice.

Thanks again for all your thoughts.



Thursday, May 29, 2008 7:51 PM, CDT

Sorry it has taken me awhile to update. It has been a long couple of days for me. Zoe began choking quite a bit again yesterday, so we had to slow down her feeds again. She has been very groggy today, but much better.

My Grandfather past away peacefully this morning at 3am. He fought a hard battle and is now able to rest. He was a wonderful, loving husband, father, grandfather and great grandfather. We will all miss him tremendously. I know he is up there waiting to hold Zoe when she is ready.

I love you and miss you Papa. .



Wednesday, May 28, 2008 9:00 AM, CDT

Yesterday was a long day for myself, but definately a better day for Zoe. I was gone most of the day to be with my Grandfather who has cancer and is only expected to be with us for a few days or maybe even hours. Zoe stayed with Papa Mike who always takes wonderful care of her.

Zoe had just a couple of choking episodes in the early morning and nothing throughout the day or night. She seems to be having a little trouble sleeping again, so we have had to give her chloral hydrate to help, but other than that, a very big improvement from the weekend. I even got a few silent giggles yesterday when I got home. I think she missed her Mommy. Mommy definately missed her Zoe.

I have increased her feeds to 3 1/2oz at a time with a 1 1/2 hr break in between. She seems to be doing well with this. Yay!

Zoe does continue to have trouble with her secretions and more often then not has build up in the back of her throat that sounds awful when she breaths, she is learning how to clear this, but it is a difficult and frustrating task for her. In communicating with other krabbe parents, I have learned I may need to use a suction machine to help Zoe clear the secretions. Not yet, but we may eventually get there.

My sweet Princess, I am praying for a happy and comfortable day today. I love you.



Monday, May 26, 2008 7:52 PM, CDT

Finally some good news. Zoe's lungs sound clear today. She must have been able to absorb the small amount of fluid in her lungs. Thank you God. She has not had even one choking episode today. She is not receiving as much nutrients as before, but enough, nontheless. She is currently tolerating feedings of 3oz. over a period of three hours, then a 1 1/2hr break before starting over again. We will continue this around the clock. Lets hope she continues to tolerate this amount and maybe move back up in a few days....


Monday, May 26, 2008 9:03 AM, CDT

After a long evening of choking, I decided to give Zoe's tummy a break. She was so tired and just wanted to go to sleep, but kept waking up because of the choking. I made sure her choking was under control and then gave her a dose of chloral hydrate to help her relax and fall asleep. I gave her only fluids, very slowly for 5 hrs throughout the night. She finally slept well.

We will adjust the feedings again today. 30cc for 3 hours, then a 2hr brake and start all over again. I won't get my hopes up this time, but still pray this is the last adjustment.

I was so upset yesterday, so angry. I didn't want to talk to anyone, stopped answering the phone. I just wanted to be alone, but then when I was, I needed someone there. Even with the day I had yesterday, I suprise myself with the amount of reserve and strenth I have. I never knew I had it in me. I am still upset, but much more calm today. Another day, another battle. I've been obsessively listening to Zoe's lungs. I am unable to hear what the nurse heard yesterday. Her lungs sound clear to me. The nurse will be back today for another listen. Lets hope she decides they sound clear as well.

I am afraid to leave her alone for any amount of time. even while I type this, I take numerous breaks to check on her. She is sleeping soundly now. How easily she went to sleep this time. How can she be so comfortable on an empty stomach? She is having her first feeding of the day. She's doing well at the moment, but it's not until the end of the feeding that I begin to worry.

Zoe, if I could fight this battle for you, I would, without question. I would take it on double. Oh, how I wish I had the power to take it from you. My sweet, innocent baby. Be strong sweet girl. You are so very loved by all.



Sunday, May 25, 2008 10:45 AM, CDT

Yet another night of little sleep due to Zoe's frequent choking. Her nurse came by again yesterday and offered two suggestions; a medication called reglin or we can slow her feed down even more. While I would love to give Zoe a medication that would take this refluxing away from her, reglin poses a new threat. This medication helps to speed up digestion, but is also a stimulant. For kids with Krabbes Disease, this medication usually makes them even more uncomfortable. Zoe was put on this medication before she was diagnosed and it made her scream louder and longer than she ever had before. Our only option now, is to slow down her feed again. Zoe was being fed 40cc an hour over 19hrs. Last night, I started her on 32cc/hr which she started at 11pm. At 6am, she woke up choking. She has choked numerous times already this morning. Today I will slow her feed to 30cc/hr. That is equal to 1 ounce per hour.

Please God, allow her to tolerate this time. I don't care if she has to be hooked up to her feeding pump 24hrs a day, as long as she is somehow able to tolerate her food. Please answer this prayer.

************UPDATE********

The hospice nurse came by again. Not such good news. It appears that Zoe has accumulated a small amount of fluid in the lower lobes of her lungs. It is taking everything I have not to just SCREAM right now. I am suddenly filled with more anger than I think I have ever known. I feel like I was just told this is the beginning of the end. I know I may still be overreacting, but it feels that way just the same. She will be fed 4oz over a period of 4hrs now, then take an hour brake, then start again. Hopefully this will help with the refluxing this time. If she continues to sound congested, we will give her just pedialite throughout the day tomorrow and then go back to the formula after that. My thoughts are running through my head so fast, I cannot put them into words at the moment...


Saturday, May 24, 2008 11:11 AM, CDT

Zoe's food regiment was adjusted yesterday in an effort to minimize her refluxing and choking. Unfortunately it doesn't seem to have made much of a difference. She continues to reflux and then choke throughout the day and night. The hospice nurse will be returning today to re-evaluate her and, hopefully, help.

Zoe's eyesight appears to be getting worse. We have not put her through an eye exam as we do not want her to go through any more testing. It is obvious that she still does have sight, but it's not as well as it once was. She seems to need someone right next to her or touching her at all times. This is how she feels comforted. We will hold her and touch her and kiss her as much as possible, as often as she needs. She is still able to look at the pictures in the books I read to her. I just make sure to hold them close.

Zoe's overall demeanor is good. She seems to be content most of the time still. That's the important part. I want her to always be happy. No matter what it takes on my part.

I love you my sweet girl.


Friday, May 23, 2008 9:54 AM, CDT

Yesterday and last night were pretty rough on little Zoe. Her choking reached an all time high. I lost count of how many times she actually choked yesterday, and she was up most of the night last night after one of her worst choking moments at 330am. It took her over 2 hours to recover and even then she was not able to return to her deep sleep.

We heard from the pediatrician today. We will be adjusting Zoe's feedings over the weekend to try and make it a little easier on her digestive system and hopefully help with the refluxing/choking. She will have a total of 5hrs during the day where she will not be fed. The rest of the day she will be on a very slow continuous feed of less than 1 ounce per hour. She will still be getting the nutrients she needs, but not in large amounts, so hopefully her stomach contents will not "back up."

If it's not one thing, it's another it seems. We finally got her sleep worked out, but now her little tummy is having trouble. Lets pray this adjustment on her food works. I can't stand to see her choking anymore. Her little lips turn blue, her face looks so scared when she is gasping for air and the look she gives me is so terrible. I know she is looking at me for help. I can feel it. Yet, all I can do is speak gently to her, pat her on her back and kiss her until it passes. I hope this brings her some comfort during her struggle.


Thursday, May 22, 2008 12:00 PM, CDT

It looks as though Zoe is back to sleeping well again. She has slept through the night now for several nights. Thank goodness! Not for me, for her. It breaks my heart when I know she can't sleep.

Over the past 4 days, she has had more mucus build up than usual. When she breaths, it makes this awful gurgling noise. Her nurse came to see her today and reassured us that it is nothing to worry about at this point. The gurgling is in her throat which is probably caused by her traechia since the muscle tone is a little weak. This does not mean she is not getting enough oxygen or even that she is having trouble breathing. She is getting plenty of oxygen and her lungs are "crystal" clear. She showed us how to listen for build up in her lungs and how to tell the difference between sounds in her throat and sounds in her lungs. I guess that's good news.

Zoe was also weighed today. Still 16lbs .08oz. She is also still choking quite frequently. We are supposed to be hearing from the pediatrician soon to see if he wants to make any adjustments on her food.

Michael has had a cold the past couple of days. I have been a nervous wreck. I'm so worried she will catch it. I've been washing my hands so frequently that they are dry and cracking. A cold would be very bad for Zoe. Let's hope it's short lived and doesn't affect anyone else. Please, please, please don't let her catch this cold.

On a lighter note... Zoe and brother have been playing together today (at a safe distance). She just loves him. He makes her laugh so easily. I love her little silent laughter. She is not able to smile very well anymore, but I can tell when she is trying and though you can't hear her laughter, you can definitely feel it and see it.

We continue to have long sessions of story time. This will now be part of our daily routine. I love that I can see her wonderment as she studies each picture.

She is napping peacefully right now. She's such an angel. I found this story that touched me and brought some insight to the question I always ask...Why?....

"The Brave Little Soul"
by John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?”


God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”

The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle - for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. You will be called Zoe Alexis.”



Tuesday, May 20, 2008 6:12 PM, CDT

Another awesome day! Zoe slept well again last night. She woke up just briefly for a new diaper and then went peacefully back to sleep.

She has not choked at all, again today (that's a big deal)! She has been full of smiles again today and I saw her laugh more today than I have in the past month. Apparently, she likes when Mommy tries to eat her ear. Her laugh was a silent one, but was strong enough that her tummy was shaking and her face turned red. She had this long sigh when she was done. It was the cutest thing. I wish it could've gone on for hours.

We have discovered that Zoe loves to be read to. Yesterday and today, we must have read 10 books to her. She just sits there quietly reviewing the pictures on each page. The best part is, when I say "the end" and close the book, she lets out a little whine. Once I start another book, she returns to being content. I don't mean to brag (yes I do), but my baby girl is such a smarty!

I'm so glad I've found something I know you can enjoy without too much effort sweet pea. I love you more every day.



Monday, May 19, 2008 6:47 PM, CDT

Well, Zoe had a fantastic day today... She slept over 12 hours straight last night and when she woke up this morning, she was in the best of moods. She was full of smiles and laughs. Her eyes were bright and observant. I love seeing her this way.

She slept on and off today. She seemed very comfortable. No choking, no stiffening, no seizures. Just comfort and happiness.

What a special day. What a special girl.

Mommy loves you princess.



Sunday, May 18, 2008 11:00 PM, CDT

I have this little angel. For me she left her wings.
She has no idea how much happiness she truly brings.
She brightens up my days with her smiles and her laughs.
She helps me to remember all the blessings that I have.

Her face, it is so perfect, she's sweet and soft and pure.
Sometimes she can be willful and sometimes she is demure.
She tries her very hardest to be strong throughout the fight.
She gives the greatest effort from morning until night.

Every person that has known her sees this light within her soul
I know that in this whole great world, she has a special role.
She's beauty and she’s innocence to everyone she knows
This light within her shines brighter as my angel grows.

I know that God must love me, He showed me with His Grace
I knew just how completely when I saw my angel's face.
And in that very moment when she came into my world,
I knew that she was so much more than just my baby girl.

She would be my sunshine, with a sweetness that won't end.
And there is no broken heart, her laughter would not mend.
She would be the reason I would always try my best.
For my little angel baby girl would be my greatest test.

When God entrusts to you an angel, who has left her wings for you.
Encircle her with love with everything you do.
Let her know God made her, and that He trusts you with her care.
Be sure to make time for special moments with her to share.

And when at night I finally say my prayers and go to sleep
I Thank Him for my angel, and ask for him to always keep
A watchful eye and hand to protect her from this world.
Protect my little angel; protect my baby girl.

Author Unknown



Sunday, May 18, 2008 9:38 AM, CDT

The last couple of nights I've had to give Zoe the chloral hydrate to help her get to sleep. She's still waking up at least once at night for about an hour even with the chloral hydrate. Once is not so bad. I get to enjoy our quiet, one on one time again. She's so happy in the middle of the night when she wakes. It's fun to visit with her at that time.

Yesterday, since I gave her the chloral hydrate Friday night, Zoe was pretty groggy all day. I guess I have to weigh the pros and the cons here. Sleep deprived and very uncomfortable, or well rested, comfortable but groggy. I just hope her body gets used to the chloral hydrate over the next week or so, so she isn't so groggy after every dose.

We continue our daily battles with Zoe's choking. It seems to be getting worse. She is still a little trooper though. She doesn't get upset about it, even though it's happening more often. I just pray every day that it goes away and that I don't have to use the CPR training I've learned. No one wants to ever have to perform CPR. Especially on their own children. I know she'll stay strong. She's so much stronger than most.

Zoe's still shooting her million dollar grin every once in awhile. It brightens the day of anyone who sees it. She had quite a bit of company Friday and Saturday night. She enjoyed the attention and did very well in spite of all the noise around her.

Love you Angel, looking forward to a nice lazy Sunday with my two beautiful children....


Friday, May 16, 2008 5:01 PM, CDT

Zoe had an ok day today. Definitely not a bad day, so I guess that's good. It took her quite awhile to get to sleep last night. She went down at about 830pm and didn't get to sleep until just about 1115pm. Once she was sleeping, she didn't wake again until about 6am. That's pretty good compared to how she has been sleeping the last couple of weeks. Maybe the increase on her klonopin is helping a bit. She did have some trouble with her naps earlier today, but once she finally got to sleep she slept for about 4 hours. We may need to start giving her just a small dose of the chloral hydrate to help her get to sleep.

Other than the sleep thing, Zoe's doing pretty well. She threw a couple of smiles my way today. She's such a little doll. She will be having some visitors tonight, so hopefully she feels up for it. I can't wait to show her off.



Thursday, May 15, 2008 9:34 AM, CDT

So, physical therapy went well again for Zoe. I really can't get over how much she enjoys it. She fell asleep in the middle of her stretches, again. I tried to get a picture of it to post, but the camera battery was dead (so sad).

Last night, Zoe did sleep a little better than she has been. She did wake up once, but was not up for more than an hour. We slept next to each other and shared a pillow all night. I love the sound of her breathing, and her sweet breath when she wakes. The first thing I saw when I woke up this morning were her big brown eyes staring right at me. What a wonderful way to wake up!

Zoe slept on her right side most of the night last night, so now her right arm and her right eye are pretty swollen this morning. Her right side tends to swell fairly easily. I have to let her sleep on her right side every now and then, because it helps with digestion, it helps to stretch her neck and she sleeps sooo well on her right side. The swelling.... we just have to deal with it sometimes.

Zoe continues to have trouble with choking. In fact, she choked twice this morning during her morning feeding. I try sitting her up as high as she can tolerate, but she still burps, refluxes and chokes occasionally. This is hard for me. She recovers fairly well, but her refluxing so often could lead to fluid in her lungs which could be VERY bad for Zoe. So...Let's hope Zoe's choking gets better.

Looking forward to another day with my girl.....



Wednesday, May 14, 2008 7:59 AM, CDT

Well, chalk it up to another sleepless night for Princess Zoe. She went to bed around 830pm only to wake up again about 11pm. She then stayed awake until 140am, only to wake up yet again at 330am. She was awake for about 45 minutes that time, then she slept until 630am at which point she is now awake for the day. She will receive her second increased dose of klonopin this morning. Lets hope she gets a good nap in after that, because she has physical therapy today.

Hope you have a great day today sweatpea and hope you get some sleep tonight without needing chloral hydrate. I love you...


Tuesday, May 13, 2008 11:43 PM, CDT

Zoe selpt VERY well last night, and without the help of medications. Her day followed suit...with the exception of choking a few times, she was bright eyed and beautiful all her waking hours. We played and talked all day and she was so alert. I saw those beautiful eyes open wide and even got a few smiles and giggles from her. What a blessing these days are.

Her pediatrician recommened we increase her morning and evening doses of klonopin. Klonopin is basically valium. This medication is the most important one Zoe takes. It helps her brain to "slow" down and reduces her seizures. Tonight was her first increased dose. We'll see how she does tomorrow....

I loved spending the day with you today my sweet girl. You are so beautiful and absolutely perfect. I love every little thing about you. I love your little clenched fists and the squeaks you so often make. I love the way you just barely peak at me through a small slit in your eye lids. I love the way you kick me when I touch the bottom of your feet. I love the way you try to stretch when you wake up and end up curled into a little ball for a few seconds. I love the way your left ear sticks out just a bit further than your right and I love the little creases in your wrists and thighs. I love the way you whine, just a little, when you need attention or want to go to sleep. I love the way you smile with your eyes when you can't with your mouth. I love that silent laugh of yours. I love the sigh you make when you're content. I love you just the way you are.


Sunday, May 11, 2008 8:56 PM, CDT

Happy Mother's Day to all you moms out there....

My little Zoe did not have such a great night again last night. She was up most of the night. I decided to give her, her first dose of chloral hydrate. This medication was prescribed for Zoe several weeks ago to help her sleep, but she has not needed it until now. It didn't seem to help much. I gave her the dose at 2:15am and she didn't fall asleep until just before three. She then woke up for the day at 6am.

Due to her sleepless night, I decided to leave Zoe home with her Daddy while I went to visit my Mom. This did not make for a very good Mother's Day for me. I thought I would be ok, but because she's been having trouble sleeping, I worried more than usual. I also couldn't stop thinking that terrible thought that comes to mind every time I go out without her; "this is what it will be like without her." I absolutely hate that thought. I wish I could just push it out of my mind, and most of the time I can, but sometimes it just won't go away.

When I got home, I held Zoe for most of the evening. I did notice her twitching and tensing up a bit more than usual and I noticed a couple of small seizures... It's time to increase her meds. This seems to be the pattern, first the weight gain, then the sleepless nights, then the muscle rigidity, then the seizures, then the crying. I want to adjust her meds before she gets too bad. I called hospice and had to settle for the on call nurse who, unfortunately, is not familiar with Zoe. He suggested we increase the chloral hydrate dose for the night to help her sleep and Zoe's regular nurse can come visit her tomorrow to reevaluate her meds.

Zoe is now sleeping peacfully. I hope it lasts. I just want her to be comfortable. Hope you get some rest sweetpea.


Saturday, May 10, 2008 7:30 PM, CDT

Happy Birthday Zoe!!

You are now 8 months old today. As I think back over the first 8 months of your life, I cherish every second of every day I've had with you. You are and always will be the Angel God has sent to me. You have taught me so much about life and love. I love you my beautiful princess.

Despite Zoe's restless night last night, she had a wonderful day today. She was able to enjoy her party and all the company it brought. Maybe she was just filled with anticipation last night ( ;

There are so many people who love you sweetheart. I hope you can feel the love that surrounds you. Your very presence has brought our families and friends closer together. You are truely a blessing from heaven.

I will be posting pics of Zoe's birthday soon. She was so pretty today in her little sun dress and pony. Of course, she would have been just as pretty no matter what she wore.


Friday, May 9, 2008 8:31 PM, CDT

So, today I decided to go through all Zoe's photos and video footage. While I love to see all of Zoe's pictures and every day of her life with us has been a blessing, It was a little upsetting.

The pictures of her before she became symptomatic were not hard to look at, as I have been through those pictures a dozen and one times. The pictures that were upsetting were the ones taken of her during the time of her diagnosis and shortly thereafter. It has only been two months since Zoe was diagnosed with krabbe disease, yet I didn't realize how much the disease has progressed from then until now. In the video and pictures, Zoe is smiling and laughing without effort. Not just a little laugh, the kind of laugh where her smile is as big as it can get, her head is held back and her tummy is shaking so hard she can't catch her breath. She is so alert and awake in these pictures and videos. She is able to make eye contact and track faces and turn her head without effort.....

I'm glad we caught these moments on film, but I miss that laugh so much. I don't think it's possible for her to laugh like that anymore. She usually gives a half of a smile now and her laughs only last a couple of seconds. I miss looking into those big beautiful eyes, she is not able to make eye contact very often and when she does, again, it's just for a few seconds. She has an extremely difficult time tracking now as well. Don't get me wrong, I'm very happy to get any type of smile and laughter out of Zoe, but.... I miss the big one. I miss the comfort of being able to play with and talk to her without having to question whether or not she is paying attention.

As I held her tightly before bedtime this evening, I cried. I whispered in her ear and apologized to her over and over again telling her how much I wish I could take this away from her.

I love you sweetheart. More than life. No matter how much or how little you change over the next few months, I will love you just the same, if possible, I will love you more.

Someone once told me, having a child is like having your heart out in the open. That is so true. Zoe, you and your brother are my heart.


Thursday, May 8, 2008 10:46 AM, CDT

Yesterday was an awesome day for Princess Zoe. Her PT went very well. She enjoyed every minute of it. It did, however, make some gas bubbles move through her tummy which upset her as usual (she's such a girl).

She was more alert yesterday than I've seen her in quite awhile. Her eyes were brightly opened most of her awake time and it was very obvious she was extremely interested in everything going on around her. She smiled and laughed quite a bit yesterday. Sweet laughter.

Zoe was finally weighed...... She now ways 16lbs 2oz. Thats over a pound heavier than she wayed 2 1/2 weeks ago! Yay Zoe! I'm so proud of you sweetheart!

After such a great day, Zoe's night was good too. She slept through the night again for the first time in 3 nights. She woke a little earlier than usual, around 6am, but mommy wasn't ready to get up yet. So, I layed her next to me, we cuddled for a little and she dozed off for about another hour. I love cuddle time.

Hope you have another extra special day Zoe....



Wednesday, May 7, 2008 8:44 AM, CDT

Even with as little sleep as she had the night before last my little girl was such a trooper yesterday. She did not complain except for one time. She was rudely awaken from her morning nap by those bothersome gas pains she hates oh so much. Once she was able to calm down, she was happy the rest of the day, taking several long and well needed naps.

Zoe went to bed last night without a fuss around 7:30. She was sleeping well until she was again rudely awaken around 10pm by what appeared to be a little sleep apnea. Once she was awake, she stayed awake for about half an hour because she decided to dirty her diaper for mommy. Once her diaper was changed, back to sleep she went. She did wake up again briefly around 3am with another case of apnea (this one scared Mommy a bit). I flipped on the night light, looked at her and she seemed to be peaceful again. I'm really not sure if it was sleep apnea, but I've never heard her make that noise before in the middle of a deep sleep (or ever for that matter). It sounded like a gasp for air to me.

Today's plan is round two of physical therapy and, if all goes as planned, Zoe should meet with her hospice nurse today for a check up and to be weighed. Let's hope she enjoys her PT again today.

Oh ya... I forgot to add the most important thing.... Zoe had her first ponytails yesterday! Mommy has been waiting to do that since Zoe was in the womb. I will post the pics soon.


Tuesday, May 6, 2008 9:47 AM, CDT

Well, yesterday Mommy had a better day. Zoe's day was....ok. The first half of her day she was doing very well. She woke up happy and was alert most of the day. When the evening rolled around.... her day kind of went downhill a little. She choked several times last night and for about three hours she seemed to have a lot of trouble breathing. Her lungs are ok. It's really hard to explain. It's like sometimes the muscles in her throat aren't working properly and close when they should be opening. So, when she breathes she makes this loud squeaking noise and it sounds like it's harder for her to get air through. When she finally relaxes and falls asleep, it stops and she is able to take deep breaths. However, she had quite a hard time falling asleep last night too. She laid in her bed for an hour and a half before she finally dozed off around...945pm or so. Then, she woke up again around 1am and stayed awake until nearly 330am and woke up again at 6am at which point I laid her on my pillow next to me. She laid there, quietly looking at me for several minutes before dozing off again, only to wake up an hour later.

We were going to go visit Grandpa today, but that's not going to happen. Without much sleep, Zoe can become over stimulated VERY easily and once she starts crying, it's very difficult to get her to stop. Especially if she is not in a familiar environment. So, we will stay home today and hope she gets better sleep.

Oh, Zoe has not been weighed yet. Hospice nurses once again had to bump her appointment. She is supposed to be weighed tomorrow 5/7/08. I will let everyone know what the outcome is.

Here's hoping for a better day and night for Zoe today....

Love you sweatheart!



Sunday, May 4, 2008 10:12 PM, CDT

Anoher great day for our little Zoe. Not such a good day for Mommy though. It seems that every once in a while I just can't seem to get the inevitable out of my mind. I try so hard to be positive all the time. To enjoy every day, every hour, every minute.

The last couple of days I have spent quite a bit of time away from Zoe, doing errands and a birthday party with my son. The entire time I was out, I couldn't stop thinking to myself "this is what it's going to be like without Zoe." I try to push those thoughts out of my head, but they just keep coming back. I don't want to ever be without my little girl. I don't ever want to know that pain. I don't want to have to "remember" her. I don't want to have to look at pictures to see her. I want to hear her cry. I want to smell her. I want to touch her. I want to kiss her. I want to hold her.

I don't have that choice.


Saturday, May 3, 2008 10:00 PM, CDT

Today Zoe got to spend some one-on-one time with Daddy. She stayed home with him while Michael and I went out to a birthday party. She behaved herself very well and I think Daddy has a little more confidence being alone with her too.

Later in the evening we took a walk to the park and watched brother play. It was a very good time. I can tell Zoe loves the breeze on her face. She choked just a little while we were out, but recovered quikly. She is such a trooper.

Zoe gets weighed tomorrow. I really hope she's gained a little....



Friday, May 2, 2008 9:29 PM, CDT

Today, Zoe seemed a little on edge most of the day. She was more sensitive than usual and she did choke several times today. I still wouldn't really consider it to be a bad day, but none the less, not a great one either. I have a feeling she may need an increase on her meds again soon.

Yesterday we went shopping at Target. She seemed to enjoy herself and actually fell asleep while Michael and I shopped. I'm so happy we've been able to get out.

Zoe's nurse is supposed to be by on Sunday for a regular check and to weigh her. I'm hoping she has gained a little weight. Last time she lost a couple ounces, so this time she definitely needs to put on a little bulk. I know you can do it baby girl...

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.

Under Construction..

This page is currently under construction. I am in the process of organizing and moving all of my caring bridge journal entries to this new spot. Please bare with me.