Terrified Isn't Enough

I want to get this written while it is still fresh in my mind. More for my self than anything. Another chapter in Bella's story.

We have been hit by a virus of some sort around here lately. Cali was the first to get it, then me and then Bella. Yesterday morning Bella woke up with a bad cough. Last night Marc and I were up with her until about three in the morning because she would cough so hard she would get sick. My washing machine has run non-stop since midnight last night.

When Bella woke up this morning she didn't have the cough. I was so happy thinking it was gone. At about 1:00 this afternoon she said she needed medicine because she didn't feel good. When I went to pick her up she was hot. I took her temp and gave her Motrin. At 3:30 the kids all laid down for a nap and I attempted to tackle the laundry mountain that was taking over my bedroom. At about 4:30 I heard the most awful noise coming from Bella's room. Not thinking the noise could be coming from Bella, herself, I went ahead into her room to see where the noise was coming from.

The noise was, in fact, coming from Bella. I don't even know how to describe it- it sounded like an old man moaning mixed with a loud gurgling noise........I don't know. Bella had foamy looking bubbles and drool coming from her mouth and her eyes were partially open but her eyes were rolled back into her head. I tried waking her and she didn't. I kept shaking her, lifting her arms- everything I could think of. I was calling her name, and the calling turned to shouting. I lifted her eyelids and her pupils were so small. She continued to make the weird noise but she was completely unresponsive. I called Marc and told him he needed to come home right away. I tried once more to wake Bella up (she is normally hard to wake but not this hard) and then I called 911.

I have never had to call 911 before and it seemed so surreal when I was dialing those numbers. I answered all of the dispatchers questions and she told me not to leave Bella's side for fear that she would quit breathing. I was hysterical. The word terrified would not even begin to describe the emotions I was feeling. I yelled for Kyle and told him to wait by the door and when he saw the ambulance people then he needed to let them in and bring them to Bella's room. He was very calm and did just what he was told.

When the squads arrived it was like a whirlwind. Four EMTs surrounded Bella's bed and started working on her. One of the EMTs pulled me into the hallway and asked me questions for the forms. The maintenance supervisor for our property was here and as soon as I saw him I felt more calm. A familiar face I guess. Another EMT came out of Bella's room and asked me which hospital I would prefer. When I told him the head guy told me they didn't want to take that much time getting her to the ER. Then I completely lost it. I told them to choose and tell me where to go. The next thing I know, Marc's boss was walking in the door. She and the maintenance supervisor, "J" were there to watch the kids until Marc could get home so that I could go in the squad with Bella.

Marc's boss "P" told me to put my shoes on. I ran down the hall and grabbed a pair of socks and then ran back out, grabbed my purse and started heading for the door. P said "Honey, you need to put shoes on." She proceeded to find me a pair of shoes and then help me put them on. She told me to get shoes and I grabbed a pair of socks! Yeah, I was hysterical. I couldn't think. My body had gone numb and my brain just stopped working. I could hear people talk but I really couldn't hear what they were saying and it felt like everyone was running around me and I was standing still. "J" walked me outside. I was headed for my van and he made sure that I got in the squad.

They had Bella strapped down on the stretcher, hooked up to all kinds of machines and were giving her an IV. They told me they had to try and stabilize her before we took off. I saw Marc pull in so he came over to the squad to see Bella. He asked the EMTs what was going on with Bella. They told us that they were pretty sure she was having a seizure but wouldn't be sure until she was seen by a doctor. Marc saw us off and went home to get the kids.

The EMTs were great. He tried to answer all of the questions I had and some that I was too out-of-it to think to ask. Bella was still not responding while we were in the squad but she finally did look at me when I called her name.

Once at the Emergency room they did blood work, urine culture and chest x-rays. They monitored her, gave her lots of fluids and medication. She was getting more and more alert the longer we were there. It felt good to see her coming out of it. Marc came with the kids and there was such relief written on his face when he saw her sitting up and alert.

The x-rays showed that she had the very start of pneumonia. That caused the fever and the fever caused the seizure. They diagnosed her as having a febrile seizure. They said, even though they are scary to watch, they cause no long term damage. They gave her a prescription for an antibiotic for the pneumonia and told us to alternate between Motrin and Tylenol in order to keep the fever down. The doctor told us that she will probably have these seizures now every time she gets a high fever, so we have to do whatever it takes to keep her fevers down.

What I don't get is why she has never had one of these seizures before? Bella had cyclic fevers every month for 3 years (with her PFAPA). Fevers up to 106.8 and not once did she ever have a seizure! Why now? I am angry. I'm upset. And I feel like my heart is now in a million tiny pieces. After all she has been through.....I felt like we were finally breathing a sigh of relief. And now.....now I feel like I'm holding my breath again. My poor Bella.

Bella doesn't remember anything leading up to her chest x-ray. I am so grateful for that. Can you imagine how traumatic that would be if she did remember?

I need to set my alarm to make sure that Bella gets her Tylenol or Motrin every three hours. Not that I will probably be sleeping anyway. It's going to be a long night.

Blessings,
Heather

A Perfect Weekend

We had such a nice and relaxing weekend! On Saturday we took the kids to a local festival. The town was beautifully adorned in red, white and blue. This is Marc's and my favorite town and, maybe someday, we will live here. It's dreamy.


We dressed the kids up in proper holiday attire and made them pose for a couple pictures before the fun started (and they got dirty and sweaty-Boy! It was HOT!)

I took about two dozen pictures of the three of them and this is the best shot I got.......

Love the falls and the ducks....
The kids and I rode the carousel first...

It was fast! Cali wasn't quite sure what to think...

Cali rode her first fair ride! The kids loved this one. Again....Cali was so sober the entire ride!

We made sure that Cali rode with Kyle because he is so protective.

Bella rode with a boy she had never met. His name is Will and she says he is her boyfriend.

Kyle did not stop smiling the entire ride! As soon as the ride was over Cali started clapping and said "Yay Cawi!" Every time we passed the ride after that she would reach out her arms and say "Go! Go!" Apparently she did like it!!

There was so much to do and see and Kyle wanted to experience it all- while Bella was content just taking it all in.

Kyle wanted so badly to play the dart game so we let him. Marc and I were shocked when he hit and popped THREE balloons!!!! Three hits out of four darts!

He chose three stuffed snakes for his prizes so he and his sisters could have a prize. My little man.

Cali was content with her red balloon and the live band playing.

Kyle and Bella wanted to ride the Ferris wheel so Daddy went on with them.

And mommy and Cali were quite content staying on the ground watching them!!

This was the point where Daddy started freaking out a little. Realizing the bars didn't quite cover enough and just how high they were going to go. He made sure to hold on to the kids as tight as he possibly could. Such a good Daddy.

And this is when I started freaking out. I do not like heights. Terrified actually. I wouldn't be able to ride this but I was even having a hard time watching! Woozy.

Kyle and Bella, of course, loved every second of it! My little daredevils.

After we rode the rides we had to get something to eat. Ahhh........fair food. Kyle was fascinated with the cotton candy and the woman working was thrilled to answer all of his questions and show him how to make it.

Cali enjoyed her hot dog. Funny girl.

They even got to meet Stanton Island George- the monkey.

Another lesson from another vendor- this time the lemonade stand. And the guy working inside was so cute to explain- and show- Kyle every.single.step. of how to squeeze fresh lemonade.

We ended the day by going to the local ice cream shop and eating ice cream cones on the sidewalk and watching all of the cars and people walk by.

Kyle's face cracks me up in this shot....

Saturday was an amazing day. Sunday and Monday were rather lazy...........and that was such a nice, and needed, change for us. We have been so busy that it feels as though life has been passing us by lately. It was nice to slow things down and absorb life, live life, and enjoy each other.

Is it Friday yet? tehe

I have been working on some projects lately! I can not wait to show you. Soon!

Blessings,

Heather:)

Better & Worse

Bella is doing much better! It was a long hard road of recovery for Bella. I am so used to her bouncing back but this really took a toll on her. There were long miserable days and lots of sleepless nights but we got through it! Praise God!
Just as she was starting to feel better she ended up with the stomach flu the Friday before Thanksgiving. Within a few days everyone in our house had it. Which meant more long days and sleepless nights for me. Yuck.

Things have been absolutely crazy around here but seem to have started to calm down. I really need to catch up on my rest. Running on two hours of sleep a night for over two weeks straight and ending up with the bug has gotten me completely worn down. Now I am miserable with a cold and a sinus infection. Hopefully we will all be better soon!

Until then...
Blessings,
Heather:)

Bella's Last 48 Hours

We were up and to the hospital Wednesday morning long before the sun showed it's face. Bella did fantastic during admitting and pre-op. She was excited to get into her gown and wear her pretty new (hospital) bracelet. Marc and I were allowed to walk by her as they wheeled her bed towards the operating room doors. Once at the doors we had to give our kisses and turn our little girl over into the hands of the medical team. Bella suddenly didn't think it was fun anymore. She cried and kept saying "No- I don't want to go. I want to come with you!" My heart broke and the tears started flowing. I had to walk away from her so she didn't see me cry. I couldn't even turn to watch her go through the doors. If I had my way I would have stood beside her and held her hand through the surgery just so I didn't have to leave her alone. I completely fell apart.

So much was weighing on me. So much was riding on this day. We have been on a crazy journey for the last three years. A journey of fear and not knowing. Of tests and doctor visits and medicines. Three years of searching for answers, asking questions, watching as Bella went through test after test, suffered through fever after fever. This surgery gave us hope. A 64% chance that Bella would no longer have another fever associated with PFAPA. It was a big day full of big emotions.

They let her take her kitty with her to make her more comfortable. The nurse told us they had to give the gas to kitty before Bella would let them give it to her. After surgery her ENT came to talk to us. The surgery was successful and went smoothly. He said that his bigger concern was her ear. Both of her ear tubes had fallen out but what had him worried was her left ear. There is a sizable hole in her ear drum. That is what was causing her partial hearing loss. He was able to patch the ear drum. He gave us ear drops to give to her daily to help keep the patch in place and heal the ear drum. We are praying that this works and that the ear drum does heal so that she can get her hearing back! I believe that everything happens for a reason. I believe that the timing of her surgery was not determined by us. Had we not done this surgery, I wonder if we would have caught the problem with her ear drum in time. She could have lost her hearing completely in that ear! God is good!!!

After we spoke to the surgeon the recovery room nurse came out and said they needed us now! We rushed back to find Bella in a state that scared me. The staff told us that they usually wait until the kids are fully awake from anesthesia before bringing the parents back but felt that we may be able to help. She was experiencing "emergence delirium" and was very combative. She was not awake but she wasn't fully "out" and she was scared. She was thrashing and kicking, screaming and crying. I tried to hold her but she was incredibly strong and it took Marc and I and the nurse to hold on to her to keep her from hurting herself. It was scary and heartbreaking. I have bruises on my chin and hip and legs from where she was kicking and bucking. I was crying and knew I needed to pull it together for Bella. I started singing her favorite songs, asking her where Kyle was. Marc was reassuring her that we were there. Anesthesia came to her bed with sedative and all at once............................she calmed down. No need for sedative. Yeah! We laid her on the bed and I rubbed her back until she went to sleep. We got a cold rag for her eyes. She looked miserable, sad, and fragile. So tiny and broken. Most people would think we were nuts for taking Bella's picture in this state- but this is part of her story. Someday we will tell Bella her story and we will show her these pictures and we will tell her how brave she was and how amazing her journey was.


When she woke up after a long nap she was well enough to go to her room. It was a happy room with a tv, a dvd player, pretty colors and clouds painted on the ceiling. She liked the clouds and I didn't get a picture of them.

Bear and Kitty were by her side the whole time. The staff was amazing. Whatever procedure or medicine they gave Bella- they gave to Bear and Kitty first. Bella was comfortable with them and they were so good to her and met her every need. She hated the IV and kept crying and asking us to "take it away."

She kept her jell-o down and they allowed her to have cottage cheese. She insisted on doing it all by herself! She is a very independent little girl. She did so well eating and drinking that they were able to take her off of fluids around 5:30p.m. As a reward she got to go to the playroom. She loved it there!

After about a half hour she told me she was tired and wanted to go back to her room.

It was a long night. Bella did well and slept well until her pain medication started to wear off. A nurse woke me up right before 4 a.m. and said he needed help. I walked over to Bella's bed and it was covered in blood and she was sound asleep! I thought she was bleeding from the surgery but no- she had ripped the IV out of her hand! She didn't even cry. We are assuming she did it in her sleep. The nurse decided not to put it back in as long as she took her meds well orally. She did!

Today Bella got to go to the playroom, make a craft and walk wherever she wanted. Daddy and Bella found a comfy window seat and watched all of the people and cars down below.

The ENT attending came in to check Bella and answer any questions we had and then discharged us. We were all excited to be going home! Bella said thank you and goodbye to all of the wonderful nurses and then we were on our way.

Five minutes after we left the parking garage of the hospital our little girl was sound asleep. Bella continues to amaze me with her strength and courage. She is truly one of the most amazing people I have ever known. I think of everything she has been through in her short little life and realize she is much stronger than I would have been. She is such a little trooper.

We had to stop and fill prescriptions for antibiotic, ear drops and Tylenol with Codeine for pain. When we got home Kyle, Cali, Grandma and Grandpa had made Welcome Home banners that were hanging up for Bella. Kyle's banner said "I Love Bella 4 Ever!" He missed his little sister so much and was so excited to see her back home.

We go back to her ENT specialist in a month for a check up. Her ENT told us that the pain would be worst from day 3 to day 10 at least, due to the healing process. We still may have a rough road but we know that this will only be temporary!!! For now Bella is enjoying her cottage cheese, jell-o and pudding! We are faithful that her ear drum will heal completely and her hearing will be restored and that the tonsillectomy and adnoidectomy will eliminate her cyclic fevers once and for all!!!!

THANK YOU ALL for your prayers, well wishes and concerns for Bella. It means so much to Marc and I that we had so many people pulling for Bella and lifting her name in prayer! We have been touched by all of your emails and comments! You bloggers are THE BEST!!!!

I may not post much in the next few days as most of my focus will be on Bella and her recovery but I will try and give small updates when I can. And hopefully I will be back to regular posting soon!!

Blessings,

Heather:)

Bella's Surgery

Bella's surgery is sceduled for 8:15 tomorrow morning. We have to be there at 6:45 a.m. (which means we have to leave home by 5) to check in, get our photo i.d.s, etc.

I am anxious about the surgery. I am nervous because my little girl will be operated on. I worry. I know I shouldn't. Marc and I are also excited about the possible outcome of this proedure.

We ask for your prayers- not just during the surgery but for the duration of her recovery. Prayers that this procedure will, in fact, eliminate her fevers once and for all! It has been a long journey and we are faithful that this is the journey's end...........and that we are starting a new journey tomorrow- PFAPA free!!! God is good. We believe that He will be watching over her, holding her in His arms, and healing her tomorrow!

I am so sorry to be brief but I have a bazillion things to do before I go to bed. I will keep you updated on Bella's progress!!!!

Blessings,
Heather:)

Update & Some Silliness

First of all- thank you all for your prayers for my Grandpa and Grandma. My Grandpa woke up Saturday morning and his leg felt better so he said he was not going to the emergency room. The family respected his decision. Monday he went in for blood work and things looked good. He went to a doctor's appointment and was told that the charlie-horse like pain was, more than likely, a side effect of his cortisone shot. If he experiences the pain again they have to keep an eye on it and make sure that it does not feel warm as that could indicate a blood clot. So, for now, everything sounds good! Praise the Lord!

Cali started something new today that almost had me in cardiac arrest. I turned my back and saw that she was on the couch!!! So we have officially added a new monkey to our zoo!!! I keep taking her down and she keeps climbing back up! So, Kyle and I stacked pillows on the floor all around the sofa in hopes she would have a soft place to land if she fell. Aahhhhh! My arms and back are so sore today from removing her multiple times! I should look like Hercules pretty soon.
After awhile she felt defeated and steered away from the sofa....................and found a new place to climb....................

Still not the safest thing but it is much lower to the ground at least!!

She was shaking her body back and forth trying to get the truck to move so big brother stepped in and pushed her around. She had a ball!

After I laid Cali down for a nap I came back out to the living room to find Kyle and Bella playing with the camera. When I downloaded the card onto the computer I laughed hysterically.

They had had a pretty good time it looks like!!

Now, once I get a new camera the kids won't be using it, but this camera is on it's last leg anyway. The screen turns black every 4 or 5 pictures and I have to give it to Kyle to let him work his magic- he is the only one who can get it to work again!! Maybe the old camera should be passed down to Kyle. He seems to enjoy being a photographer...........and being photographed!!!

Have a great Day!

Blessings,

Heather:)

Some Things On My Mind

On Saturday, May 16th, my sister, brother, sister-in-law and her sister participated in the Komen Race for the Cure. They were Heroes For Hope. I am super super proud of them and a little jealous that I couldn't be there.


My sister, of course, took her camera and got some amazing shots. It is overwhelming that they had the opportunity to participate in something so much bigger than themselves. Great job you guys!! You can read more about their adventure here. Melanie is new to blogland so go say hi!


I saw this t-shirt online the other day. I laugh out loud every time I look at it. I think I am going to have to order one.

Perfectly appropriate for how I have been feeling recently.

I have been puppy shopping. My husband says we have to wait until we have a house before we get a dog so it is going to be a long long time. I have been researching online for almost two years for the perfect breed for our family. We want a smaller dog that is good with kids and oh-so snugly.

We have narrowed it down to two:

The Cavalier King Charles Spaniel

And the Papillon

The Papillon is probably at the top of the list. The Cavalier has genetic health problems that you have to be extra aware of. From what I have read it can lead to much more expensive vet bills and a shortened life span. When I was younger we had a CKC spaniel named Peaches. She came to us as a stray and was absolutely precious. My Grandpa used to have a Papillon and it was the sweetest dog. I love the ears. They look like a hairy elephant. Both of them are in the spaniel line. Hmmm..guess I have found my breed. I can not wait to have a house. Getting a dog is just one more thing to look forward to. he kids want a pet so much. Maybe it's good we can't get one yet. By the time we actually get one the kids will be older and more responsible to help take care of the newest family member.

The other night I was opening mail and read a letter that made my heart sink. It came from Bella's Rheumatologist. It started like this:

"It is with mixed emotions that I must announce my relocation back to Israel in September 2009......"

I had to sit down. I read it over and over. What?!?! NO! That's not fair. He can't do that! We just started getting somewhere because of him! Two years of searching and he was the one that gave us the diagnosis! He laid out a plan. He has to stay and finish what he started. Right? This man knows PFAPA- he mentors with the founder of the Fever Clinic in Washington. He travels the world for study cases. He GETS IT and believes in it when most others don't. Mostly, he knows my daughter. He has studied her and memorized the hundreds of pages of notes that I had documented over our two year search for answers. I trust him. Bella trusts him.

I suddenly felt alone. Frustrated. Feeling like all of the road blocks and mazes that we have maneuvered around for the last two years were now stacking up in front of me like the Great Wall of China. It is still heavy on my mind but I have been praying about it. God certainly hasn't brought us this far just to make us turn around and go back right? We can squeeze one more visit it with the Rheumatologist before he leaves in September. Meet his partner and feel him out. Tell him what our expectations are and see where he stands.

Here is a brief overview of Bella's condition:

Definition:

PFAPA (medical condition): A very rare syndrome characterized mainly by mouth ulcers, periodic fevers, pharyngeal inflammation and infection of neck lymph nodes.

Description:

Fevers. They're as common in young children as scraped knees and runny noses. But some children have fevers that occur routinely each month like a woman's monthly period. A description of the syndrome, known as Periodic Fever, Aphthous stomatitis, Pharyngitis, and cervical Adenitis (PFAPA) is a chronic condition usually seen in children under five, characterized by periodic episodes of high fever occurring roughly every four weeks. The fever rapidly rises to 103-106 degrees and lasts three to six days.

The child is healthy otherwise - no runny nose or respiratory symptoms. The syndrome may be accompanied by mouth sores, a red and inflamed throat, and swollen glands. The fever spontaneously resolves.

Dr. Kathryn M. Edwards, professor of Pediatrics first described PFAPA with Dr. Alexander R. Lawton, professor of Pediatrics and Dr. Gary Marshall Jr. from the University of Louisville.

Fevers may persist for several years but seems to have no detrimental long-term health consequences. Many physicians are unaware of the syndrome.Nothing can cure PFAPA but a small dose of prednisone has shown promise in alleviating the symptoms in some children. However, in some children it has been shown to increase the frequency of the episodes - from 28 days to 14-21 days. It's very difficult to have a child who is sick every month like our children are. When it hits they are run down, lethargic and fatigued.

Description excerpt taken from Yahoo Groups

Bella had another fever early this week. It was the highest we have seen for a few months. I knew it was coming for three days and I still wasn't prepared as I watched the thermometer rise past 106 degrees. We gave her her prednisone and she went to sleep. Her eyes water like she is crying buckets when her temperature gets that high. I cried with Bella. I cried as I watched her sleep, listening to her labored breathing. We are very blessed that the diagnosis was what it was and nothing more. There are many families out there that would gladly trade their child's diagnosis for ours. But it still hurts. It's still hard to watch. Especially when the diagnosis still doesn't answer all of the "whys?" Then again, a diagnosis never does, does it?

Plans for this weekend include.................hmmm...............flyin' by the seat of our pants! Hopefully it will be nice and relaxing.

I hope you all have a fantastic weekend and remember the reason that we are celebrating.

God Bless those who have fallen and those who are currently fighting for our freedoms- at home and abroad. We thank YOU! Happy Memorial Day everyone! Have a safe and happy holiday.

~Heather:)

A Birthday & Uncertain Times

On April 14th our little "Stinkerbell" turned three! I still can not believe it. Our precious little girl has been with us for three whole years.

She is ornery (hence the nickname "Stinkerbell), full of energy and full of fun.

She has a serious side too. She likes to have her "me" time and go off and play by herself. She is stingy with hugs and kisses but loves to be tickled. When she does give out hugs they last long enough to make up for the ones you've missed out on.

Her giggle is infectious. She loves to dance, dress up, and have tea parties- adorned with pearls and a designer handbag. She is also the first to jump in the puddle or sit in the mud with trains and bulldozers. She loves her big brother and her baby sister and is the little mother hen around our roost. "Bear" has the best mommy of all!

She is spunky, feisty, strong-willed, and very independent. Her famous catch-phrase is "NO! I do it!"

Bella has had a lot of health issues for her young age but has been a strong little trooper- always surprising the doctors and nurses, and mommy and daddy too. Recently, God gave us the answers to her problems and we finally feel like we can breath a little more freely and squeeze her a little tighter.

There are so many things about Bella that I adore. So many reasons I love her. So many days that have been filled with sunshine and giggles. I am ever so grateful that God decided that I was good enough to raise her as my own. I am blessed!

Mommy loves you Bella. Even though you are getting bigger you will always be that little peanut I used to rock to sleep. Thank You for three wonderful and whimsical years Stinkerbell. I am so glad you were born. Boop!

Even in the midst of such a joyous occasion, our minds were burdened with feelings of uncertainty. With the terrible economic crisis that is blanketing the country, my husband and I have always felt a sense of security and confidence in his job. That was, until this past Monday. The more we hear, the more the news seems to be discouraging. My husband does not make what most consider big money but he works hard and he provides for our family. We are happy and I am happy because he loves what he does. The very thought of investing thirteen years in to a company and suddenly being without makes me sick to my stomach. The worst part is- if my husband were to lose his job, we would also lose our home. As I have mentioned before, our apartment is included in his pay. If for any reason he is let go, we would have to move from our home within seven days. Seven days. It would definitely turn our world upside down.

Surprisingly enough though, I don't really feel stress or worry about the situation. I know in my heart that God will take care of us- and He will provide for us, come what may. I continue to pray that God give me the Faith to trust Him, that no matter what happens, we will be alright.

A friend told me the other day that his false sense of security was coming from his job- and not from God. That gave me an AHA! moment and I realized then that I needed to shift where my faith was directed.

For now we are cutting back every where we can and trying to pay off things as much as possible. I actually shut my cable and internet off over a month ago. I assumed that as long as I had a laptop I could go wireless.............needless to say that is part to blame on the erratic posting. I have learned that my technological knowledge is not as vast as I once thought!! Thank you to my neighbors for unsecured networks that made this post possible!! hee hee

It is definitely a scary time right now in the country as far as the economy goes. But as I sat watching my children climbing on and dancing around with my husband the other night, I made a promise to myself. I will NOT allow fear of the unknown to take the joy away from the right now.

~Heather:)