Yes this picture is to get your attention..

This is Jesse the week before Thanksgiving. She was taken to Children's from Methodist Mansfield via her own personal chariot. You guessed it...asthma strikes again! When we found out we were being transported to Dallas I was hoping Ron would volunteer to ride with her, while I followed with the car. I tend to crack under pressure more than him and I could already imagine that she would be very unhappy the whole way which would make me terribly anxious. As I was thinking of about it Ron blurted out that I should ride with her because she is known to be a bit of a mommy's girl, beings that we are together so much.

I started thinking maybe I tell him should go home first and pack an overnight bag, and then I imagined one of my regrets in life. I do have regrets...many in fact. It always bothers me when people say they don't have regrets. I call bs on most people that say that. A year earlier...when we were in Children's and the emergency team was transporting us to ICU there was a whole team in the room and I had exited five minutes earlier from not being able to handle it. Ron was in the room and right after he came out they all came out of the room, and headed upstairs. I vividly remember seeing about 15 people surrounding her bed all walking in unison with a Dr in the hospital bed with Jesse...holding her. I told myself..."That should be me".

That memory came flooding over me and I knew I needed to take the ride in the ambulance with Jesse. It started off ok...and then she wanted out really bad which heightened her breathing and coughing. I leaned over the stretcher and tried to hold her in her car seat. I started singing sesame street songs and she started to settle down. The paramedic and I hung up her stuffed animals, baby dolls, and gloves all over the ambulance and she thought that was funny. We got there just fine and even got to bypass the ER and went straight to our room.

This is not just an update but an opportunity for someone that may be reading this. Everytime we have been to Children's we pass by patient rooms that are empty...except for the patient. Sometimes its's an infant or an older child. They are alone...sometimes they are crying...sometimes they are sleeping or watching TV. After talking to a nurse she told us that not all kids are afforded the luxury of family support. Obviously some are there long term and have a parent that needs to go to work, take care of other children, or they don't have family support. Jesse and I walked the halls and each time passed by what looked like a six month old that was alone and wailing in his crib. The nurse would come in and check on him and give him meds/bottle and finally I saw what I realized was a hospital volunteer that came in and held him till he fell asleep. There are two of us....and sometimes more!! But what about the kids that only have one parent...or none!

People tend to push charities/volunteer opportunities that have affected them...so here is my push!! It's the least I could do (besides paying our mounting medical bills) for a hospital that has done so much for us. Even as I have felt down or sorry for myself I know the greatest cure is take the attention off myself and put it on others. There are lots of volunteer opportunities out there...and I myself need to take more advantage of the time I have...I hope you will too

Boo

Halloween

Mr. Big

Looking back I wish I would have had Ron hold Jesse up to get a side by side shot of Jesse and Big Tex....oh well...there is always next year.

My camera battery died and I was having so much fun that I didn't get a lot of pics that I wanted to get....here are a few....

Looking up at Mr. Big Tex

This is where things got a little crazy....a live band and a wide open space...due to nobody watching the band. It got even worse when Jesse came to the main stage because half of the crowd (10 people) started watching her. She was running, skipping, dancing, clapping....Then we stopped for the float parade which was a Reliant Energy commercial and Jesse proceeded to go up and down the row of people slapping hands and waving hi.

 

I have nothing of substance or comical to report on so...for now..goodbye



First day..

This is the best shot of Jesse I got with my camera...

We had done a mini Mother's Day Out this summer, so Jesse wasn't as traumatized starting her real MDO program this past week. Her first reaction to being there was shock that I had hurled her over the door to the teacher. I don't know if she was crying because I left as fast as I could. I only teared up a little in the car and I think Jesse had a great time.

One thing I know for sure is that my husband loves his family. He  juggles a demanding and time consuming job, to put us before anything else. I am very lucky to have someone that loves my daughter as much as I do. She got her 95th percentile in height from him and I think some of his type A personality.

He never questions the money I spend for her necessities and wants, or questions our decision to allow me to stay at home with her. He wants the best for her but expects her to be at her best.

I am grateful to have a husband that wants the best for me and always encourages to go out with friends, get my nails done, buy clothes, and next week go on my first vacation with my 2 best friends. I am thrilled beyond words and thank you.

The only thing he does question is how I do her hair. I like it wild and a little messy but he likes it a little more polished. So.....I let his artistic side come to the surface today before her school.

The Help..

I was rocking Jesse in the rocking chair a few weeks ago while in the hospital when Jean came in.  They do such a wonderful job of keeping the hospital absolutely spotless, so while Ron was down eating breakfast Jean helped straighten up the room and sanitize everything that any nurse or we would touch.
I like to have conversations with people that may not always feel important or inquired about. It's something my parents made us do as kids and something I will teach Jesse to do. I want her to know that she has the ability to make those that may appear invisible to others feel special.
I started asking Jean how she was doing and commenting on how great of a job her department does. Jean is mid 50's, black, and has a heavy country accent. She was kind of guarded and gave me short answers in the beginning. I noticed that she cleaned with a clear mission and she was quick and thorough.
I told her I wish I could borrow her to come to my house and clean. I immediately thought of the movie "The Help" I had just seen and cringed as she gave me a look. I fumbled over my words in trying to explain that I meant so she could teach me how to clean as she does. I tried to recover and asked for her advice on how to clean quickly as I tend to not complete a job and start another task. She paused...and started to engage more in the conversation relaying how to attack a cleaning task.
Jean continued cleaning and then asked me her first question.
"What do you do for a livin"?
I told her that I stayed at home with Jesse
"Girl you stay at home all day and you don't even clean yo house??? Oh girl that's a real shame"
I found myself feeling like a child trying to explain to her that I know how to clean. I don't think she believed me though.
She kept cleaning and I sensed she was wondering what the hell I do all day. I can only imagine what was going through her head.
She finished mopping and asked me to stay seated to let the floor dry. Jesse still had the oxygen, the o2 monitor and the IV in.....when I felt something on my lap.
Jean was just shutting the door when she looked up just in time for me to hold Jesse in the air and watch pee run down her leg. She was finally thirsty that morning and drank 3 juice boxes....and had her IV in. You forgot to change the diapers when they are in the hospital because they don't have much fluid intake.
The look on Jean's face said it all...
She don't know how to clean or take care of a baby...
I tried not to make eye contact as brought her mop over but I did hear under her breath..
"Lord Jesus help this baby"...
I didn't say anything else.

That same day I broke my phone....had to get a new one and locked my keys in my car resulting in a call to a locksmith. I hope nobody told Jean.

Get this off of me...

This weekend we had a wonderful visit with Ron's sister and family...the Reeves. They have two spectacular children whom I have grown very fond of. Michelle had her 35th :) birthday on Saturday and we went to Medieval Times. I have not been in probably 15 years and it was about the same as I remember.

They tell you to show up about an hour and a half before it begins to keep everyone in a holding cell with nothing to do but buy things or drink. Would you like to see what a $25 drink looks like.

Ya...that's the one...on the left. It was basically a watered down slushie with a splash of tequila. But I like slushies...so I kept drinking.

Jesse was in stimulation overload with all the people and things to see. Her main objective while we were waiting to go into the stadium was to get her crown off. She is pretty good now with leaving bows and baretts to keep her bangs swept back but this crown was a huge thorn in the side of her head.

"Are you kidding me"

"what is this"...

"this is ridiculous"...

"Peas dada?"...

A resolve to be miserable..

Forgetting about my troubles.

We got into the show and my plan was to take a lot of pics of the Reeves family and us enjoying the show. I guess I was having flashbacks of my previous life without a child and I was quickly snapped back into reality when she used my legs as a trampoline most of the show. She really liked seeing the horses and yelled out very intensely..."NEIGH"!!! Her horsey sound is usually high pitched and and a little broken like a real horse sound..but this time it was a straight up "NEIGH". Very similar to "HEY"!! "Look at me"!!!!!!

Michele getting her birthday wish!! HAHA

I was very intrigued though by seeing a lot of groups of older women at the show. They didn't have children with them which was quite unusual to me. I don't think the Medieval Time's menu is zagat rated.....In fact....I'm thinking their food cost per person is probably $3.00. So I'm guessing they go for the entertainment? And by entertainment...I mean the men in tight pants riding the horses who look like they are one layoff away from auditioning at La Bare. A woman sitting across the aisle from us was in her mid 40's and dressed like a wench or maybe she meant to be a princess because she had a tall dunce hat with the fabric tail coming out of the top. We were all cheering on the blue knight and she filmed him every time he competed in a game. When he would come close to our cheering section she would lift her glass to him and wink. Somehow every time all the knights competed in a game.....they would all win...which would mean they would all get carnations to pass throw out the the swooning women. She would try with her whole being to get him to throw one of those flowers to her. A few times I saw him look her way and then look away quickly....it made me wonder if she is a regular in his section.

A great time was had by all.....and we spent the rest of the weekend at home.

Sarah just entered 9th grade and she is an absolute little grown up. She is extremely mature and responsible. She is kind of a mother hen to her little brother, has a gorgeous smile and is a lot of fun to be around. She is growing up to be a BEAUTIFUL young woman and I see many wonderful things headed her way.

Garrett is a boy through and through. He LOVES to hunt and fish and shoot his gun. He is very sweet and loves his mama! He is wonderful with Jesse and this morning he read the same book to her over and over. He is a lot of fun and he makes his uncle Ronald so proud!

Hello Children's

Friday:

2pm: Some sneezing starts at Kroger

3pm: Text to Ron "I think Jesse might be sick"

5pm: Ron comes home and Pappy comes over to see Jesse....lots of playing with sneezing

9pm: I tell Ron to talk a sleeping pill because I anticipate it will be a long night and I will need him to let me sleep in the morning.

10pm: I prepare her nebulizer in anticipation that it will be needed that night (I should have started giving her treatments hours before)

12:30am 3am 5am 8am: We do treatments, watch videos, hold each other, cry, stand in steamy bathroom, and try to get her to drink liquids.

By the afternoon she was in a relatively good mood with some sneezing, drainage, and light coughing. We would continue treatments every few hours.

2pm: Uh oh....I think I'm starting to get sick too.

At about 5pm her coughing really picked up. The albuterol treatment is a bronchial dilator and will help her cough less. When it doesn't.....that's not good. It is called a rescuer and when it fails to rescue...we've got a problem. We did a treatment and while doing it her cough lessened and as soon as we stopped...the coughing became constant. What makes asthma so scary is it will take a downward turn soooo fast.

This made us a little on edge and we called our pediatrician nursing on call service and while waiting for the call back....Ron said I should go pack her a bag. We had a feeling we would be going to the hospital. At this point Jesse was coughing every 5 seconds. While I was on the phone with her Ron told me we were going to go to the hospital.

I grabbed a few items (now I realize I need an emergency bag to be packed and ready to go) and headed to Dallas.

This time was MUCH different than the last venture to Children's. She was probably coughing the same amount but she wasn't crying...and not just that....she was dancing!!

Daddy actually drove at a semi normal speed and didn't almost get into a road rage incident with a driver like last time...:)

Now how we missed our exit onto 30 and then went the wrong way on 35 coming off 183 is beyond our understanding. The ONE time you don't want to delay arriving at your destination is probably when your daughter is having an asthma attack.


The ER was fairly quiet and we got in quickly. This time around we had the asthma diagnosis and she was quickly given treatments. Children's is a teaching hospital so you are continuously relaying how this started and her history. They loved it when Ron said "You have our history on the computer right???"

She started to cough less when they treated her with the hour long stronger version of albuterol, but she would get agitated when they would poke and prod her...making her cry....which makes her cough...which makes it harder for her to breathe. They did a chest x-ray and a nasal swab...and decided to admit her. As much as we hate being there....we would rather be there than home with her like this.

The albuterol makes her crazy. It raises her heart rate to sometimes 200bpm. It is hard to watch and even harder to help her. The night was bad and we were exhausted. We basically take turns trying to soothe her...and letting her get a few minutes of sleep. She works so hard to breathe...and it makes her so tired.

In the morning they decide to increase her treatments. They listen to her and watch her body struggle to get caught up....and make their decision. At this point she is on oxygen and then given an IV. Ugghhhh...we hate IV's. She is so miserable in teh hospital and I'm so grateful for my brother and sister. They came up and gave us a break from the room. My brother is the eternal entertainer and thoroughly took Jesse's attention away from the treatments that she usually screams through. My sister played with Jesse and came up 3 different days. She loves her aunt coco and loves to be silly with her. I wish all the family lived closer but I know they were thinking of us!

She slowly started to breathe a little easier....and so did Ron and I. We would trade out getting rest and my cold was in full effect which made the hospital and even more uncomfortable place to be.

They were very conservative with cutting back on treatments considering her previous time in ICU. We were released on Tuesday and are trying to get caught back up to real life.

Jesse is doing well and her coughs are minor and productive. I really hate give her these steroids and will keep looking at alternative treatments so she doesn't have to take meds everyday.
Luckily I have heard a lot of feedback that this will be something she outgrows and I am very much hoping that is the case. For now though....it can take a turn for the worse really quick and I have to treat it with what I know works.

Happy 1.5 Jesse

I'm going to assume you have forgiven me for the lapse in posts. I won't go on and on about how I'm going to try to do this 2 or 3 times a week and take as well as post more pics as well.

Jesse is one and a half today. Everyone always says...."It goes by sooooo fast"....and it does....and it doesn't. There were so many times the days would drag by. Having Jesse has in a way disconnected me from part of the life I knew before. Not working outside of the home has decreased my small talk skills and my desire to have conversations with people. Part of it is when Jesse was younger, even when you are around other people you are worried about her crying, getting into things, diaper messes, forgetting an item in the diaper bag, or trying to match her nap with the car ride home so she wouldn't scream so much she would vomit in her car seat. (Which happened more than you would think) Your mind is usually somewhere else and you do lose part of yourself.

Last year people would say..."Oh I bet you can't imagine life without her..." and I'd think..."uhhhhh...yeah....I can. And that life looks like heaven"....Those first 6 months....man they were tough. I think she was a semi easy baby....but wow...she did not let me out of her sight and would barely let anyone besides Ron hold her much at all.

Jesse had to fall asleep to a vacuum cleaner and sometimes that is the only thing that would stop her crying. In the evenings we would turn it on and I would take her into the bathroom and turn the lights off and just sway her. She would get fussy in the evening for the first 3 months and it was a constant stress. Ron would be gone during the week and when he would come home Friday night I was so ready for some help.

Today...I absolutely can't imagine my life without her. I am sooo very lucky to be able to stay at home with her. She is so funny and silly and smart. She makes incredibly entertaining faces and she likes to kiss and pet my back. She dances like no one is watching and dances even better when everyone is watching. She has a terribly evil laugh when she chases me with a water hose and she has mastered her fake laugh. She is extremely neat and doesn't like things to be out of order which makes me think my real baby is living in a pristine home with a frustrated mother that doesn't understand why her daughter is so messy. She waves at everyone she sees and is observant of everything. She has had MRI's, chest x-rays, surgery removing 2 hemangiomas, 4 different Emergency Room visits, 6 hospitals, an IV infiltrate with a third degree burn, a diagnosis of asthma, a near incubation, and one week in ICU.

She puts a smile in my heart and joy to my life.

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This past week we had a visit from my mom's first cousin Nesa and her daughter Delaney from Pittsburgh. Delaney turned 13 and when asked what trip she would like to take her requests were 1) to take a plane ride and 2) to come see Jesse. How sweet is that???

They got here Saturday and forced Ron and I to leave the house. We left for a night and came back Sunday night. Delaney is soooo good with children and will be an incredible babysitter!!! We had a great time and can't wait till they come back.

We have been trying to do some craft items recently, but unfortunately for Jesse, Mommy is not the best at arts and crafts. So play do and finger paint will do for now until I learn some other things.

Here is Jesse today......Happy 1.5!!!

Hemangioma: The end of an era

Little does Jesse know.....but she is at a great point in her life!! So much is behind her and it looks like a lot of blue sky ahead!!

We did keep with the monthly tradition of going to the hospital, but it was only to have her hemangiomas removed. This pic was right before the surgery.

She won't sit still long enough for me to get a pic of her scar right now, but it really is looking nice. There are stitches on her head still but they will be absorbed. Right after the surgery it really did look very frankensteinish,

but now the swelling is gone. The one on her stomach has the glue and it really just looks like a scratch!

Before the surgery I kept thinking that I would be reminded of the hemangiomas but now I don't think about them at all. I guess it's because we didn't really notice them too much when they were on her. My sister wanted to keep it as a keepsake and my brother said that Jesse would win in the "MS. HEMANGIOMEE" contest.

I highly recommend her dr and if you know of someone who has questions about hemangiomas I would be happy to pass on all my info.

Jesse is the happiest baby. She gives this obnoxious grin to people and she waves at everybody!!! She even waves at the cars coming out of the car wash. No matter where we are...she waves at people. I know that it puts a smile on their face and I always encourage her to be friendly. It's something that I will always stress to her.

We really do have a lot of fun together. We spend a lot of time outside just sitting and exploring. I talk to her....and tell her what things are...she talks to me in some asian language. But we understand each other somehow. She is very silly and she is constantly trying to make me laugh. If she does get me to laugh (which happens quite a bit) she will do whatever it was over and over again. She is not loved just because I am related to her, but also because of who she is. Her personality, her faces, quirks, sad faces, pouty lip, the way she holds my hand when she takes a bottle, or how she hands me whatever it is she is not supposed to have when she thinks she is in trouble.

She gets over things very quickly and I think some of that is due to her knowing what real pain is. Her fear of stethoscopes and getting her blood pressure taken, tells us that she still remembers the trauma she went through.

I am photographing my best friends/brothers wedding on Saturday. I did his fiancee bridal portraits and I think she really liked them. They are a lot of fun and really easy going. These picture colors are a bit distorted on here...but you get the idea.