Quick update

We've had a rough few nights with Addie. she is exhausted, we are exhausted. Julien's team won their football game over Oxford last night...it was a LONG and very painful ride home for us with Addie. Mom had a fall last night, she is OK.....but that adds extra worry to the current situation. We are so ready for a three day weekend.

Blue Bunny

When Addie went for her very last vaccine before starting Kindergarten, she was such a good girl! 

When we were on our way out, Addie stopped at the desk to pick out a sticker. 

She normally isn't overly picky, anything with a truck, train or tractor makes her happy. 

On this day, it was the blue bunny that caught her eye. 

She thanked the nurses and we walked out. 

When we got into the car and I went to put her sticker on her, I finally really looked at what her prize sticker said.

Addie was very proud of her sticker and I dared anyone to make even one snarky comment to my sweet girl!

21 Days Later...

Mom finally went home!
I haven't seen her yet, only because I managed to acquire cooties with a fever.

I do know that Home Health and PT are going to be really close friends with her for a while.

Regardless...she is HOME!!!!

Honestly, 21 days ago, I didn't know if she would be back at home.

Mom is amazing and such a fighter!

We are just so appreciate of your prayers and support.

Thank you for every telephone call, text, email and prayer.

Birmingham Museum of Art

Julien and Addie both enjoyed our visit to the Birmingham Museum of Art.

Julien, Chris and I would have enjoyed the art part of the museum much more had a little primate not been squealing with delight over everything her little eyes beheld.

There was something about her voice echoing through every single room that I'm sure other museum goers were not very appreciative of. 

 Once we made it to the children's area, we were able to relax.

Addie had a great time coloring my prize winning cat drawing.

She explored every single inch of the room.

Although parts of the room left her a little puzzled.

She particularly loved the undersea walk through

and the smart board (and Julien did as well!), but

her very favorite area of the day was the library.

She loves to look through books!

Once she got up the nerve to try out the unique sitting area, she stayed until the museum was closing and we were the very last ones left.

~~~ 

July 21, 2012

Kindergarten - Day Five

Addie was excited when I told her it was time for school! 

While sitting in car rider line this morning, she was shaking and so nervous. 

I know she is anxious, but she is so brave. 

 When I got out and handed her over to Mrs. Anita, Addie was still very nervous, although she did wave back this morning! 

That - is progress. 

Mrs. Anita has an amazing energy that surrounds her and helps to put Addie at ease.

 It wasn't long before I received word that Addie was having another rough day. 

She was very sad and weepy. 

 It has been such a long week for her and I can only imagine how tired she is from it all. 

  I am so proud of Addie for being sweet this week and for being a good girl for her teachers and aides. 

 I know as time goes on, she will become acclimated with the schedules and it will be easier for her. 

 I can't wait to share updates, I am truly excited to see what each day brings!

 ~~~ 

 Day five - Rainbow...not so bright.

Later in the evening, Addie was sitting on my lap and she held up one hand and said, "Five".

I asked her if she was telling me how old she is and she nodded the affirmative!

I really hope that is what she was trying to tell me, because if so, that is pretty exciting news for us!

Of course, I will continue to drill her to confirm whether or not that is truly what she was saying.

~~~ 

 August 24, 2012

Kindergarten - Day Four

I knew it was bound to happen.

This is part of the email I got this morning:

"Hey there Jennifer!  Addie came in all smiles this morning and ate a good breakfast.  Your little monkey loves to eat.   We have seen a few tears this morning and she is asking for “Momma.”  I asked her if she was tired and she said she was.  All the kids are exhausted today…having a full 5 days the first week is tough on these babies!  She exhibited a lot of fatigue when going up the stairs to the gym just now.  Luckily, there is a baton demonstration in PE today so she won’t be running around wearing herself out even more."

When we picked Addie up this afternoon, she was laying down and had been very sad.  

Addie is doing such a great job, it is just a very overwhelming and exhausting experience.

The great news is that she doesn't cry or put up any resistance about going to school!

She obviously loves it, it will just take a little time for her to adjust.

~~~

I promised her, I would only annoy her with pictures the first week of school.

It was day four...and she was annoyed.

She tried bribing me by handing me my shoe.

Poor little Monkey.

I let her win and immediately put the camera down.

~~~ 

August 23, 2012

Day Nineteen - Mom Update

There hasn't been many changes.
Mom is pretty much holding steady.
There is talk of sending her home Monday or Tuesday - with Home Health and PT.

We are just patiently waiting for the next step.

Day Sixteen - Mom Update

Mom is still holding steady.
Currently, there is no plan to move her anywhere until at least next Tuesday.
She still isn't mobile, so PT has a lot of work to do.
Her oxygen levels are not stable and the doctors are still working on sorting through the plan of action on her antibiotics, etc...
I believe she has eleven more days on one IV antibiotic and four more weeks on another (that one would go through the PICC line).
Overall, she is still making progress!

Kindergarten - Day Three

Addie was once again extremely excited about getting ready for school.

The only difference about this particular morning, was that it would be her first day in car rider line.

Julien has been a car rider since Addie was in my womb, so I figured she should have absorbed the ritual by now.

We pull up to the school, profess our well wishes for the day, Julien gets out of the car, we wave, we drive off.

On the way to school, I talked to Addie about it in an annoyingly happy voice.

Once we were in car rider line and almost to the drop off point, I unbuckled her, sat her on my lap and gathered her backpack and snack bag.

When we saw Mrs. Anita, we stopped, and I got out with Addie.

I handed her bags to Mrs. Anita, gave Addie a little hug and then waved like a lunatic with a ridiculously happy smile on my face.

The entire time, Addie was looking at me with the most awful, confused little face - ever.
Mrs. Anita held Addie's hand and started walking her to the door of the school.

When I got back in the car, I looked again at her and waved and I seriously thought she was going to hit meltdown.

She could not figure out why I had just thrown her out of the car onto the sidewalk and was about to drive away...at least that's how she probably saw the whole situation unfold.

It was awful and I know it will take some time for her to get acclimated to the routine.

But, still.

Her confused little face just broke my heart.

She had a great day at school, and was so happy to see us when we came to pick her up!

So far, everyone seems to love Addie!!!

~~~

Day Three of Big Girl Kindergarten School

My sleepy little Princess in yellow.

But not too tired to smile for the camera.

~~~

August 22, 2012

Kindergarten - Day Two

Addie was very excited to go back to Kindergarten on her second day.

She is especially proud and overly protective of her backpack.

Chris and I walked her in to school and quickly left without any drama.

When we picked her up from school, she was all smiles!

She had a terrific day at school and was so happy to show us - with the assistance of her aides - the stretching exercise she learned in P.E.

When we got home, she was so very sleepy, but there was no hysterical crying!

We were able to go outside for a while and enjoy the mild weather before she crashed for the evening.

She slept straight through the night - THANK YOU KINDERGARTEN!

~~~

Day two - pretty in purple...

and a huge thanks to one of my co-workers for monogramming Addie's dress, lunch bag and backpack for her!

Addie was still so very sleepy.

While I was trying to get her to look at the camera, she kept scooting closer to me until finally she was basically stepping on my feet.

She was d-o-n-e with pictures.

After school, Addie in all of her sleepy mess of a state, took her note from her new OT out of her folder.

She had a crayon and started to color on the back.

When I asked for the note back, she refused and turned it into a game of cat and mouse.

When she made it to the powder room, she proceeded to drop the crayon into the potty.

Just as soon as I finished retrieving the crayon from the potty, she then decided to see exactly how I would react when she put the note into the potty.

She was 

off - the - hook.

~~~

August 21, 2012

From Addie's Teacher

Addie's teacher emailed me a photo from Addie's first day!

...and seeing as how I'm really far behind...

Addie's teacher mailed a "Welcome to Kindergarten" letter out to everyone at the beginning of August.

Addie very intently "read" her letter!

It was very exciting for her and I'm sure so special for all the children to receive a letter from their new teacher!

Day Fifteen - Mom Update

When I saw Mom today, she was sitting up in bed and talking to us!!!! 

She wasn't confused and was clearly talking about the happenings of the day.

She had to have another pint of blood tonight. Her PICC line is in place. 

She is still on oxygen. 

PT had not been in today. 

At this point, Mom is unable to stand or take a step, so she will obviously need a great deal of PT to build up her leg strength and get her mobile again. 

We are just waiting to find out what the next step is. 

Seeing her today made me so happy - she is doing so good!

At least she isn't staring at bare walls.

Day Fourteen - Mom Update

Mom was moved out of the MICU late last night into a new luxury suite. 

I'm calling this...
Progress!!!

Absolutely Not - Part Two

Today was a beautiful day. 

Addie didn't cry.

I didn't cry. 

We were ready and I think she was ready too.

Addie had a wonderful day at school! 

She needed reassurance from her teachers a few times, but I'm sure that is typical of any child.

She woke around 6:00 a.m. and was excited about starting her day.

I like to think that over the last month as she heard all of her friends at daycare talk about, "Going to Kindergarten", that she was hoping that maybe she would get to go too.

I gave her a great big good morning hug and told her that today was 

her 

day to go to Kindergarten.

Somewhere deep inside my heart, I think she understood.

She was silly while trying to take a picture with her Daddy.

My beautiful Baby Girl!

She was very proud of her new "badge".  

Part of me is surprised that she didn't try to scan it before we walked through the doors of the school.

On the way to school, she sat with her snack/lunch bag on her lap and her backpack inches from her car seat.

She unzipped and zipped the bag about a hundred times, all the while rearranging the placement of her water bottle and apple sauce inside the bag.

She wanted everything to be just perfect.

She does walk and she does talk and she does hold her little bag on her arm just like a "normal" child... 

we made our way across the parking lot for her very first day of Kindergarten at our local 

public school.

She was so nervous!

She kept tugging at my clothes and she was shaking like crazy, so I finally bent down to give her a big hug!

It was tough, I was so afraid she would hit the point of no return.

Once we stepped through the doors of the school, she calmed down.

Just a moment later, we spotted Mrs. Allison - so excited about Addie's big day!

Addie didn't hesitate to walk right up to her!

I slipped Addie's backpack on her, gave her a big hug and stepped back.

I couldn't believe the moment was finally here.

She turned back to us. 
We gave her a big reassuring smile and waved to her before she walked away.

Although she was nervous, she managed a sweet smile.

This was the moment we waited so patiently to see - for five years.

After we took Addie to school, Chris and I went to see my Mother, had some lunch with our margarita's at Chuy's and then enjoyed an afternoon of pampering.

We needed it - bad.

I asked Chris if he thought we had any regrets or if we could have or should have done something differently for Addie over the last five years - to make life better for her.

We feel like we have done the best we knew how to do.

We feel like we have fought for her and we don't feel like we have let her down.

I just hope she feels the same way.

Please continue your support and love as we take the next step on our journey.

An encounter last night proved to me how important it is for me to continue to talk about Addie's journey - not only as therapy for me and to chronicle her journey for her, but also to continue to educate.

In closing for this beautiful day in our lives, I'll leave you with the words that I said to my husband the first chance I had to wrap my arms around him and take in all that had transpired in one mornings time.

I knew that if I said too much, I would start to tear up, so all I managed was to summarize our first five years of fighting for Addie in three little words:

"We did it."

August 20, 2012

Absolutely Not

She will never walk

She will never talk

She will never function as a normal child

...and when I asked if Addie would ever be able to attend public school, he replied, "Absolutely not.".

For each and every one of you who never gave up on my sweet, beautiful angel and for those of you who never gave up on me, I thank you from the bottom of my heart.

I can never thank you enough for your support and love.

Your prayers and support got us to today.

Today was the day that never should have been.

It is our stepping stone to the miracles that lie ahead.

~~~

I have so many little stories to share about this beautiful day in our lives, but honestly, I am beyond exhausted.

Addie had a wonderful first day, but her night has not been so good.

From the time we got her home, she was hysterical.

It took me an hour to calm her down and by that time, we were running out the door to get Julien from football.

It was very apparent that she was so very tired and I can only imagine the sensory overload from today.

It all had to be so overwhelming for her.

I know you all have been waiting for updates, and I appreciate the emails, phone calls and text messages, so here is a sneak peek at my beautiful princess on her big day!

So much more to come very soon!

This isn't attitude you see, it's the little primate in need of her sweater!

I think this is going to be my favorite picture from this morning.

She is so proud of her backpack and lunch bag.

I desperately wanted Addie to have a say in what she wore for her big day.

I have every reason to believe that her favorite color is blue.

Just recently, we ran across a picture of an owl that she seemed to really like.

When I happened upon a blue dress with an owl, I knew my search was over.

It's cotton, it's comfortable and it fits her little personality.

Addie was getting a little more nervous.
She was looking to Julien to make it better.

Julien started his last year at the Middle School.
He had a fantastic first day as well!
I think it is going to be a great year!

Day Thirteen - Mom Update

Today marks two weeks since my Mother became ill and went to UAB and thirteen days since she was admitted to the MICU.

The doctors decided today that she was stable enough to move out of ICU...except there are no available beds, so she gets to enjoy the luxury accommodations of the MICU for another night.

Mom's oxygen level has been really unstable if they try to remove her from it.  Her BP and temperature likes to keep everyone guessing, but overall, she has stabilized!

She even gets to partake in a liquid diet tomorrow....Mmmmm.

However, the medications continue to make life pretty miserable for us all.
When I went to see her this morning, she didn't recognize me at first.
She tried to talk to me some, but couldn't stay awake  - either that or my obviously entertaining stories just knocked her right out.

Two weeks in, we are making great progress!

Meet the Teacher

Friday, I took Addie to "Meet the Teacher" day at her new school. 

This really wasn't the first time that she has met her teachers or visited the classroom, but this was the first time she met her new classmates. 

We have actually been working really hard over the last few months to get everything lined up for Addie at her new school and we have been working with an amazing team of teachers. 

Teachers,who I feel, have already opened their hearts to Addie.

I have just kept that to myself, I suppose it was out of fear of something going wrong. 

When we walked through the doors of the school, Addie was really nervous and was shaking. 

I had to stop midway down the hall and give her a hug and reassure her. 

 Once we entered her classroom and she saw her teacher, she relaxed a little although she was still a little anxious.

Mrs. Morris (her new Kindergarten teacher) and Mrs. Anita (Addie's aide) welcomed Addie and did their very best to make her feel comfortable.

Addie even had a new classmate come over and visit with her!

Addie remembered the reading lounge under the tree house and enjoyed sitting with her new classmates and Mrs. Anita.

I kept my distance, but at one point, Addie saw me and held out her arms and said, "Hug".

She just needed more reassurance.

Notice the gates on the stairs of the tree house.

When Chris and I visited the classroom a while back, one of the first things that caught our attention was the stairs going to the tree house.

We mentioned our concern, but didn't make a big deal about it because we knew that Addie would be watched very closely, even in the classroom.

Much to our surprise, the gates were added over the Summer.

When I noticed the gates this past Thursday, I was very touched at the extra effort by the staff of the school in getting the gates installed.

It took our anxiety down quite a bit.

Addie was able to look around her new classroom and we were both very pleased that she would be sitting with one of her friends from daycare!

Where were these awesome Kindergarten classrooms when I was in school?

Mrs. Anita was showing Addie around the classroom!

Leaving Addie's Kindergarten classroom and on the way to her Special Education Classroom.

Mrs. Allison will be working with Addie as her Special Education Teacher and has gone a step above and beyond to make certain that we have everything in place for Addie to start school tomorrow.

Addie completed an activity with Mrs. Allison and then immediately needed another hug from me!

Addie is going to do great tomorrow!

Chris and I are at peace and feel that God has placed beautiful, compassionate, loving women in our path who will care for Addie each today.

We are excited about tomorrow!

~~~

August 17, 2012

Day Twelve in ICU - Mom Update!

When I saw Mom today, she was definitely more alert!
She had a fever earlier in the day, but all of her vitals were stable when I was there.
She is still on the NG Tube, but was enjoying a cup of ice.
There's talk of moving her from ICU tomorrow!

Mom alternated between trying her best to talk to me and confusion, but she has definitely made progress.
She was confused about the time of day and also thought it was a holiday.

There was a moment though when I knew for certain that Mom was definitely coming back to us...
I was leaning over her trying to hear what she was saying when the nurse came in and was standing next to me.
Mom pointed at the nurse and said, "Smart butt".
I looked from the nurse to Mom, trying to figure out if my Mother had really just called the nurse a smarty pants and at the same time trying to figure out if Mom was trying to tell me that the nurse had been rude to her.
Apparently, my Mother has been giving the nurses a really hard time - all in fun.
When they asked her if she knew where she was, she told them "St. Louis" and when the nurses got a little concerned, Mom told them that she was in "UAB" and it was "2012".
She obviously got tired of everyone asking her if she knew where she was and what year it was, because she just started making stuff up.

That's when I knew - for certain - that my Mom would finally be just fine.

She acts like she has no idea where I get my sarcasm from...

There were other moments when Mom was confused, but I reassured her that she would begin to think more clearly as the medications got out of her system.
I can't imagine how scary that must be for her.

I may only be hearing my Mother through a painfully raspy voice, but it is so nice just to have her trying to talk to us!

Getting Ready for Her Big Day

As soon as we left daycare, we went straight to Addie and Julien's hair appointment.

Addie is usually very timid when we enter the salon and it took a good year of her going into the salon before she didn't have a complete meltdown.

This time though, was completely unlike anything I've ever seen.

She promptly walked to the chair when it was her turn, and she didn't even get nervous when the big purple cape was placed over her.

Sadly enough, I was juggling helping Addie while talking to Mom's doctor at UAB who just so happened to call at one of the worst possible times, so I really missed getting to enjoy watching Addie.

She did such a good job!

After she was all finished and Julien was all finished, I was busy talking, so Addie climbed into the chair and sat, just looking at herself.

Everyone got the biggest kick out of her, so I had to capture the moment!

She was so sweet...until I told her it was time to go.

That's when she went from this sweet, little angel to a possessed little fungusy primate.

I couldn't bribe her out of the salon for nothing, so I finally just had to pick her up and walk out.

That's when she did something that is so completely rare.

She threw a tantrum on the sidewalk in front of the salon.

I was beyond humiliated.

I suppose that after five years of trying to acclimate the Little Monkey to the world of beauty salons, she has finally figured it all out and wasn't ready to end her time of pampering.

As a side note - a dedicated reader of the blog was in the salon at the same time and was sweet enough to introduce herself!

After Addie was finished with her hair cut, she wanted to look around the corner where the hair coloring station is.

She must still be very nervous of that area of the salon and in an effort to look around the corner, but stay as far away as possible, she ended up leaning over the legs of the lady who reads our blog - go figure!

I felt so very honored and loved that Addie was initially on her very best behavior, I just hated that it was at a time when I was so distracted.

I always appreciate the sincere and sweet words from everyone and it means so much to have prayers from people that we have never even met.

Day Eleven - Mom Update

When I walked in to see Mom today, she was awake!
Her expression didn't change, but she was definitely more alert than I have seen her.

When I started talking to her, I realized that she was understanding a lot of what I was saying, although she had her definite moments of confusion.
It is amazing the long term impact the sedatives and pain meds have had on her.
 She seemed confused when I told her how long she has been in the hospital and definitely didn't understand why she couldn't get out of the bed.

Her nurses today were absolutely wonderful!
They were very attentive to her and Mom looked like she was comfortable and relaxed.
The nurses said that Mom had a great sense of humor and had kept them laughing all day.
It had to be her expressions, because it is still taking a tremendous amount of effort for her to speak!

She still has the NG Tube, she had a bit of a fever earlier and she has also developed another infection, so tests are being done to make certain that the infection is contained and has not spread into her blood stream.

Mom looked good - considering.
It was so nice to be able to talk to her even if she was still confused.
She couldn't stay awake long.
I only got to talk to her for a little bit before she fell back into a very deep sleep.

I walked out of the MICU today with a smile on my face.
I finally feel like Mom is coming back to us!