Prayer Request For Anissa

A fellow blogger needs our prayers. Her name is Anissa Means Mayhew. You can find her story/progress here:

http://www.hope4peyton.org/page/2/

Her husband is keeping this family blog updated with her progress. I just can not imagine what this family must be going through right now. Their story makes you realize that life can change in the blink of an eye. Please keep Anissa and her family and friends in your prayers and ask your readers to do the same.

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:)

Beauty Tips

Beauty Tips by Audry Hepburn...

For attractive lips, speak words of kindness.

For lovely eyes, seek out the good in people.

For a slim figure, share your food with the hungry.

For beautiful hair, let a child run his/her fingers through it once a day.

For poise, walk with the knowledge that you never walk alone.

People, even more than things, have to be restored, renewed, revived, reclaimed, and redeemed; never throw out anyone.

Remember, if you ever need a helping hand, you will find one at the end of each of your arms.

As you grow older, you will discover that you have two hands, one for helping yourself, and the other for helping others.

I thought this was beautiful and wanted to share!

Blessings,
Heather:)

Little Chefs

I want to let everyone know that Bella's surgery is scheduled for November 11th. We do not know what time yet other than it will be a morning surgery. They will call us the night before and let us know what time to be there. I will keep you all posted. Thank You for the prayers!!!


Kyle and Bella have been begging me to make Halloween cookies. Who am I to say no to baking?? Besides.............why would I want to say no when they look soooooo cute in their little aprons and chef hats?? :)


They were so excited.

And why not? I mean, who doesn't love baking in their underwear? Yeah- don't answer that. lol

I love watching their little hands in action.

They were both so serious about the "task".

Spooky kitty cookie, anyone?

Last year for Christmas, Marc's step sister got me this giant box of cookie cutters. We LOVE them! So much fun! Cookie cutters for every holiday, letters, numbers and lots of other fun shapes and designs. The kids have a ball every time we use them. And they are dishwasher safe!

Cali had fun hanging out with Daddy while we baked cookies. Love her funny faces.

I failed to get a picture of my kitchen when the kids were done. It was a mess! The kids had flour from head to toe and the kitchen had flour from floor to ceiling- but they had so much fun.

And so did mommy.

I love spending time with my kids in the kitchen.

Blessings,

Heather:)

Getting Lost & Finding Fun

Have you ever taken a wrong turn and gotten "lost" but end up finding something new and fun? We did last weekend. A "detour" to avoid a traffic jam of extensive proportions.
I admit, at first I was a little stressed because we were on a bit of a deadline.
And then my husband lovingly says "Enjoy the moment. Go with it!"
So I did.

We ended up passing a house that had a front yard full of pumpkins. I made Marc turn around and we all got out to stretch our legs and explore.


Kyle and Bella took off in opposite directions, as always.

While Cali just wasn't sure what to think of it all.

Most of the pumpkins were only $1.00 but she had some more expensive as well. A sweet woman that taught us the names of all the types of pumpkins she had.

Who says $1.00 can't buy happiness?!? LOL!! Kyle was thrilled with the "fun pumpkin adventure", as he called it.

A perfect little detour on our detour.

Life happens.

Let it.

Fun adventures are around every corner. You just have to keep your eyes open for them.

Have a great weekend!

Blessings,

Heather:)

A Bella Update

I have been getting a lot of emails from people asking about Bella. Thank You! You have no idea what those emails- full of your thoughts, prayers and concerns- mean to Marc and I. I have wanted to wait until I actually had something to report. Bella's fevers are coming closer and closer together and they are harder and harder to fight off. She has had three fevers in the last three weeks- all of which have gone above 106 degrees! It is misery for Bella and so hard on us watching her go through this. Not to mention, Marc and I are growing more and more concerned about the effects that the prednisone will have on Bella in the long term. As I have mentioned previously, the rheumotoligist that diagnosed Bella with PFAPA has relocated to Israel. We felt as though this put up a road block for us as far as getting more in-depth into her condition. The rheumotologist had told us previously that in all of the case studies that they have done, tonsillectomy was successful in eliminating future fever attacks (although they don't know exactly why) in a large percentage of patients.

At our last appointment with our pediatrician we had discussed how Bella's fevers were getting worse and coming closer together. We had expressed our concern over Bella taking more prednisone than we were comfortable with, being that she is having the fever attacks more frequently. The pediatrician shared our concern. When I brought up the idea of the tonsillectomy he said "So let's do it!" I informed him that we were told no doctor would do the surgery until Bella was at least four. He told us he would call Bella's Otolaryngologist and discuss the matter and see what they could work out. Late one evening the pediatrician called me and told me to call Bella's Otolaryngologist (ENT) and set up an appointment. Oh! I was excited but I didn't want to get my hopes up.

Well, today we had our appointment with Bella's ENT and it went very well! He was very knowledgeable about PFAPA and knew what the success rate was for patients with PFAPA that have undergone tonsillectomy. Although it was a little discouraging to hear that the success rate is actually only 60-64%, Marc and I are still very hopeful! We had discussed with him the issue that Bella has with her left ear oozing gross stuff right before her fever peaks. He knew exactly what we meant so he will be removing her adenoids as well. The left ear is the ear that Bella only has 40% hearing in, so he is going to take a very good look when she is under anesthesia and if there is something he is able to correct, he will take care of that at the same time. The goal is to "fix" everything he can at once so as to not have to put her through any more surgeries than we have to. We want to make this as least traumatic for her as possible. She has been through so much in her short three years as it is.

The scheduler will be calling me to set up a day and time for Bella's surgery. I do not know yet exactly when it will be but I know it will be soon. They will be keeping her at the hospital after the surgery, at least one night, for observation- which makes me feel better. Just like with any surgery there are risks involved. And we do not have a 100% guarantee that this is going to "cure" Bella. Marc and I have weighed the "risks verses benefits". We are at the end of our rope. We want resolve for Bella so that she does not have to suffer through these attacks any longer. We do not want to keep her on this prednisone- not knowing how it could effect her. We want her to have a normal, happy, carefree childhood.

Marc and I are faithful that this is going to work for our little girl. We are praying that God lays His healing hands on her and guides the doctor's hands the day of her surgery. We pray that this surgery is a success and that Bella will fall into that 60%!!!! Surgery of any kind scares the daylights out of me but I am trusting in the Lord with all that I have and placing Bella in His care.

I will keep you all posted!!!

Blessings,

Heather:)

Dress Up

Bella came down the hall today looking like this.......

She loves to play dress up.

She comes up with some pretty.......umm.........interesting, err- amazing outfits.

She is always so proud of them. So am I. Kyle likes to get in on the fun too. At least today he was a fireman and not a super hero in a tutu. I only wish I were kidding about the tutu.

They crack me up.

While taking pictures I turned to check on Cali and this is what I saw...........

I think I am ready to replace all of my furniture with bean bags and mattresses on the floor. Seriously.

Another little dare devil monkey. LOL

I hope you all have a wonderful weekend!!!!

Blessings,

Heather:)

Fall Into Comfort

I have been sick for well over a week. It started with a mild sinus infection, then last Saturday I got hit hard with a bad cold. Double the fun. I am still feeling yuck but I do have my voice back which is a plus. Well, not for Marc or the kids, but for me it's a big deal! LOL

So, what does one do while trying to rest and recuperate? I have been searching high and low for all sorts of decorating ideas. Ideas and items to cozy up my house so that we can invite the cooler months in style. I love to make my home cozy and comfy- but Autumn especially makes me feel the urge even more. Even if all the decorating I do is only in my mind. It is fun to flip through the magazines, look online, and stroll through fabric stores and home decor isles.

Jo-Ann has some wonderful fabrics in their Home Decor line! And the price ain't too shabby, either!

Here are some pictures that have inspired me...............

Hmmm.... I just noticed a theme of dark woods and neutral color palettes. Funny. Now, if you will excuse me, I am going to go crawl onto the couch and try and rest some more.

Welcome Fall!!!

Blessings,

Heather:)