Mommy Said There Would be Days Like This....

Oh how I dream of being a parent who walks into an appt for testing, or anything really, that goes the way it is suppose to.  Really is that too much to ask for, not only for my own sanity but for the mental health of my sweet little girl??

Today we went in for a CT scan on her belly, it was suppose to be a quick IV placement for the contrast and in for the short test.  Haha! Not!  Instead it was, three nurses (one being called down from IV specialist), four warming packs, five bandaids, three tries, and lots of sweat and tears and yelling.  Thankful for the child life women named Sarah who helped do all she could to keep Emma calm during the hour it took to get the IV she needed for the ten minute test.  We really did enjoy the making cookies and making cupcake app on her Ipad:)  Mommy especially!  Boy I wish we had one!

After all that and being oven an hour late to the appt to hear about the scan results,we asked them to allow the nurse at Urology to take the IV out (had to be left in for twenty minutes incase of reaction to the contrast) instead of returning to the preop area to wait.  We hurried upstairs to urology praying that had not gone to lunch.  Luckily they had not and saw us instead of us having to wait even longer for the lunch break to be over.

The results did not give us any answers so we now wait for our doctor to talk to another specialist and see what the next step is we will take.  We are basically done looking for normal quick answers and are looking for the not so normal answers, duh have you meet my child who defies all odds at every turn.

So, all in all today sucked to be brutally honest.  Emma was so brave though and bounced back pretty quick from it all.  I am so amazed at her daily!! 

We went to play at Meme's and to pick Taylor up there.  The afternoon was full of healing laughter, well till the wasp attack on Emma and daddy.

So to recapp the day, four holes in Emma (three from IV placement and one from a wasp), one wasp sting on daddy, and no answers at all.

yep bedtime! Tomorrow is another day!

MIA

So sorry to be MIA for a while, but to be honest life has been a tad bit out of control and I am needing the break to just try to hold it together.  I hear Dora's voice from Nemo in my head most days telling me to "just keep swimming". 

School started and with the week leading up to it, brought about a new concern on Emma's health that lead to two weeks of many doctor visits and no answers.  We are still on a quest to find answers with more testing taking place this Thursday.  I will share more about all of that later.  The stress of unknown medical issues is weighing heavy on all of us and especially sweet Emma.  She is feeling so tired and very emotional as her body is trying to deal with whatever is going on. 

School started and with it a new adventure in Inclusion classroom! We are so proud, but so stressed as we learn how to deal with a full inclusion room with her IEP support coming in and out and her going in and out for some of the day.  I am currently trying to juggle two regular education teachers, one special ed teacher, three therapist and a parapro or two on top of her special area teachers.  So, I am trying to work through all the craziness and make sure she is getting what she needs and trying not to get upset with all the goings on so far this year.  Just keep swimming swimming and swimming!  Things will smooth out as the year goes on and everyone learns what is happening. 

Emma joined a local girl scout troop and we had their first meeting last week.  So happy to have her be a Daisy scout.  I was one many years ago.  Looking forward to many trips and adventures with her great new troop.  We joined a troop from where I am from, about ten minutes from our house.  We could have joined at her school, but I honestly needed a troop I knew could support and love Emma for who she is.  So, her troop leaders are friends and church members at our church.  They are so sweet and so very supportive of us joining in.  I am praying this will be a great outlet for Emma to make good and godly friends, who love her and help her to be the best she can.  

Emma has been very sick for the last four days and is finally fever free and going back to school.  She spent two and half days running a very very high fever and being very weak.  But the massive shot they gave her seems to be helping and she was much much better today.  we are all tired and glad she is feeling better and hopefully sleeping much better tonight as well.  Waking to her screaming from her bed since she was too weak to walk for three days has taken years off my life. 

Taylor is doing well and loving life.  He is coming more and more into his own and I am loving watching him grow and learn.  It is a new experience for us to watch this unfold and we are so proud of him.  Today he helped me put away his clothes and put clothes into the washer.  So cute! 

Hopefully life is calming down and we will soon understand the mystery that is confusing us currently when it comes to Emma's health.  Please fogive my absence and know I will try to do better on updating.  Thanks for reading my blog and God Bless!

Wonder what we did today?

Two New Goals

The other day I got out my pictures from when I joined the Cross Country Team at College, I only ran for one season and spent one season injured and helping coach and support the team, but it was a wonderful part of my college experience.  (it also lead me to meet my wonderful hubby).  I got the pictures out after hearing about a current team member for LU that had been killed in a car crash.  I walked down memory lane reflecting on the dear team members and how hard it must be on the current young teammates dealing with such a tragic death.  So, after looking and laughing at the photos, I decided to post a few on FB to show those I am friends with on FB the great times we had back then.  It turned into a little mini reunion with all of us commenting and laughing at the few ones I put on FB. 

Here are those photos:

 The boys team

 Us girls all dressed up for a dinner trip

The first team I ran with

The second group of wonderful ladies I ran with

So anyway, after looking at these photos and realizing how fit and healthy I was, I took a hard look at my current lifestyle and found it lacking.  I no longer run the hours I use to (nor could I probably run three hours a day but who knows), I dont lift weights, I dont try to eat healthy, and I dont drink enough water.  With that said, I decide this morning to hit the gym again.  Today I went to the Y and worked out a bit with Daniel, and I took two shorts walks at home today as well.  I tried to increase my water and tried to not eat cookies all day.  I also took a scary step and stepped on a scale, I know gasp!!  I do not like the number that is on that for sure. 

I have decided to make two goals when it comes to my health:

1. I want to drop the baby weight still lingering and get back to first what I weighed before I got pregnant with Emma and then we will see how much more after that.  That will be about a 15 lbs drop for me.

2.  I will make myself work out in some way at least four days a week.  Either hit the gym or do some stuff at home to get my butt off the couch and moving. 

So there you have it! I wrote it down and now I must accomplish these goals, not just for me but for my family.  I healthy mom is a happy mom! 

Thanks for listening

Rachel

To Whom It May Concern,

To Whom it May Concern,

If a special needs mom calls your office and tells you more then once that her daughter's health has changed and they are worried, maybe you should listen.  Why?  She is never wrong!  Proven more then once that this special needs mom know's her daughter and her body and I have never been wrong about her health.

Does it really take six hours, and two phone calls from the primary doctor to get you to finally listen?!  Oh wait you still did not listen and the primary doc sent us for an ultrasound the next morning.  After six years of great care, I am currently upset with a staff that has done more then four surgeries on my daughter.  Yes, they will be getting a nice talking to when we finally see them. 

If you are working a walk in clinic at a place that services both children and adults, then you should be able to work with children.  Not be afraid of them, act like you have no brain and mess up the hearing aids more then when we first came in.  (bad experience on trying the new walk in clinic for Emma's hearing aids, we have a new appt with a qualified person on Wednesday).  Luckily this mom paid attention to the qualified people when they should me how to fix her tubing and she fixed the one you caused a huge hole to form.

Our daughter is so brave and fearless, she started Kindergarten with no tears or fits.  She walked right in and sat down and go to work on her playdoh.  She is already singing new songs from class.  She also went in for an ultrasound and did not move or make a peep the whole time.  She just laid there.  So brave!  She also has lived with two kidney's full of stones and not really complained.  Hoping to make that better asap!

Lastly, if this week is as bad as last week, this mom might just hitchike to a beach somewhere.

That is all,

A very tired and stressed Special needs mom



First day of Kindergarten!

Today was a major day in my sweet little girls life, she started Kindergarten.  Despite her age she is still the tiny blond in the hall, but that did not stop her.  She put on her backpack and walked down that hall like she owned it.  She even remembered where her room was and did not cry when she got there.  I did not either for the record!  Her teacher's name is Ms. Stewart and she is sweet as can be.  Emma has another little friend also in her room that was in her class last year and a friend from church as well.  She misses her other friends from last year (especially Weston and little Cooper) but she saw a few outside at recess and was thrilled.  She is also a little confused on when she can have Ms. Riley in her room again, but luckily Ms. Riley came out and set with her during car rider and helped her get to us today, made Emma's afternoon to sit and talk to her teacher from last year.  With time she will adjust I am sure.

Things are a little confusing as we continue to work with all her many therapist and teachers that make up her IEP team, but trying to be patient as school gets underway.  Luckily a few have been working hard to listen to her needs and adjust what needs adjusting to help Emma do well this year.  It is a whole new ballgame with her IEP and how things are being done and we are all learning and trying to make it all work together for good. 

Today was a great day and I will let you see it in pictures now:

 Here is Emma yesterday when we went to meet her new teacher, she had to take her backpack!

 Outside her new room!

 Checking out the lockers with Taylor!

 Emma, her new teacher and her buddy!

 This morning holding her sign and wearing her uniform (thanks Meme and Papa for the new ones)

 So proud of her!

 Loves her new backpack!

 Worried about how far we had to park to get into the school.  We parked in front of a bookstore nearby.  She was confused!

 Our "walk" to school due to all the parents helping kids inside.

 Bye Mom!  Yep she walked right in and was ready to go.  She was a little nervous but ready to go!

 Going in to play with playdoh

 Taylor eating his muffin with us at the Boohoo breakfast!

Taylor wondering where sissy go!  He had a hard day without her, but I think he will like more time with mommy once he gets use to it.

We ended the day with a trip to eat tacos and cheese chip and talked about school.  It was amazing to hear her tell us about her day with very little prompting, that is just amazing.  It has been a year since she got her miracle aids.  So as I sat in the car and listened to her be able to really tell us details and so much information, I just thanked God for those amazing things!  What a difference a year makes!





Guess what today is??