An Amazing Addition to TEAM EMMA..

As some of you may or may not know.. I have struggled with keeping up with all Emma's needs. Although everything has been completed. I, am EXHAUSTED! However, admitting I need help caring for MY child is a hard thing to chew.

Finally admitting that I am not superwoman and I do need help.. was the best decision I have made for our entire family.

We selected Anchor Home Health Services. They have been AMAZING so far! :) They are based out of Springfield, Illinois. It definitely isn't a process that happens overnight. However, I felt it happened fairly quick. I think it was approximately three weeks. . . From the time we decided we wanted to put in the call for help from the time we received a call saying that we had been excepted into the necessary programs and that they would be coming out to complete the necessary paperwork. :)

Our new addition, ironically has known Kory's family a majority of her life. She is the sweetest little gal ever! :) I love her to pieces. The girls just love her which is GREAT as well!

What does Miss Tonie do while she is here? ... Miss Tonie works at our house Sunday night through Thursday night from 10:00 pm to 6:00 am. Which means I finally get to sleep. She does all the things I have to get up in do in the middle of the night. Maintain Emma's continuous feedings, medications if needed, diaper changes, and making sure her Sat's are good and she isn't having an issues with an elevated heart rate.. I could never really "sleep" because I had to be awake enough to hear the pulse-ox monitor go off.. If her heart rate was slightly elevated I had to stay up and see if it went back down, if she was at the start of an infection, was a temp starting to spike, etc.

To say the least I was extremely sleep deprived and since Miss Tonie started I really have noticed a difference in myself when I am well rested. :) Emma has a full schedule every day and there isn't time to be exhausted. She is now receiving what I feel is the best possible medical care at home and I am very thankful that God has blessed us with an amazing person like Miss Tonie :) .

Thanks for keeping our family in your prayers. I really want to thank those of you who prayed specifically for home nursing help. God not only answered our prayers, he went above and beyond and brought the perfect person to take care of Miss Emma. :)

God Bless!

Kickin' Statistics... Emma turns 8 months old..

It's October..

It doesn't seem real... Is it really happening?

Are things finally looking positive?

All the infections are in check,... we are now using medication to prevent all the problems we have acquired over the last six months..

I'm not going to make the mistake of saying it looks like we finally have things under control because as soon as I do I know we will find ourselves back in the PICU.

Emma has been home for 16 days now! :) Which is a record for us ... We were home the whole month of June... So, that is our next goal.. :) I like to think we are well on our way. :)

The guard is still up and will always  be,.. we will always be ready at a moments notice.

God has blessed us with some time before the next storm and we are enjoying every minute of it.

Living for this day,.. Not looking back ... and not jumping ahead of ourselves. We are taking each day as a blessing from God.

....Through God all things are possible, right Emma?... :)

Special Needs Mom..

This is an amazing poem that I found and fell in love with so I had to share. I hope you enjoy. :)

Special Needs Mom

-unknown author-

 



You may think us "special moms" have it pretty rough.

We have no choice. We just manage life when things get really tough.

We've made it through the days we thought we'd never make it through.

We've even impressed our own selves with all that we can do.

 

 

We've gained patience beyond measure, love we never dreamed of giving.

We worry about the future but know this "special" life's worth living.

We have bad days and hurt sometimes, but we hold our heads up high.

We feel joy and pride and thankfulness more often than we cry.

 

 

For our kids we arent just supermoms. No, we do so much more.

We are cheerleaders, nurses, and therapists who don't walk out the door.

We handle rude remarks and unkind stares with dignity and grace.

Even though the pain they bring cannot be erased.

 

Therapies and treatment routes are a lot for us to digest.

We don't know what the future holds but give our kids our best.

None of us can be replaced, so we don't get many breaks.

It wears us out, but to help our kids, we'll do whatever it takes.

 

We want our kids accepted. That really is our aim.

 

When we look at them we just see kids. We hope you'll do the same.

 

We are selfless, not by choice, you see. Our kids just have more needs.

 

We're not out to change the world, but want to plant some seeds.

 

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Cracking the Code: Understanding Rare Chromosome Disorders

I found this video and thought that it was very informative and could help some of you better understand Emma. Genetics can be very confusing but I feel this video does an amazing job of explaining things. I shared this video on my facebook back in April. I just happened to stumble across it again today. Enjoy! :)

Are you living a journey or speeding to your destinations?...

Today in Church, our preacher inspired me to bring something to Emma's followers attention. Its something that really changed the way I want to look at my current situation. So much that, I want all of you to do the same. I know Emma inspires many of you to change things in your life. I hope many of you have made positive changes in your life just by simply realizing that any one of your lives can be faced with a complete tragedy in the next few seconds. . . Who is to say your phone wont ring right now with news that someone you haven't had the best relationship with over the last few months/years has suddenly passed on... Do you think of things like this in your own lives? Do you cherish your blessings.. or are you living without a care in the world?...

Today, Mike preached about Life.. Many of us look at life and we get so wrapped up in reaching our destination.. we forget what life is about.. We forget/ignore that God has sent each and every one of us on our very own journey and we are all a part of his journey. Every one of our situations are part of God's plan.

As I sat in church this morning listening to Mike preach I found my mind wondering .... I started telling myself... This is you.... I'm so wrapped up in meeting milestones and doing everything perfect. All the way down to my scheduling and making sure everything has a time and place. Our life would be unmanageable without a schedule this I know.. I cannot possibly achieve my daily tasks without time management.

But the point of all this babble is ... ..

I'm so concerned with..
-Will she walk?
-Will she talk
-Will she always need monitors and oxygen?
-Will she ever goes 6 months or even a year without being hospitalized?
-Will Maddie become the strong willed child I'm trying to raise her to be or will she eventually get so wrapped up in the stress from our daily life that she will lose sight of who she is and who are family is as a whole?
-How will I handle when a condition arises that we cant find a treatment for ?
-Will Kory and I continue to stay strong... Will our marriage survive all this stress?

I'm so wrapped up in all these questions which can all be considered DESTINATIONS in my life.. That I haven't been realizing the beautiful JOURNEY God has chosen Kory and I to lead. As I look back, my part in her journey took place early in my pregnancy when doctors warned us that if she survived my pregnancy it would be a miracle because I was so sick (hyperemesis gravidarum) that she wasn't getting hardly any nutrition what so ever. As time went on and delivery approached a new fear was found.... Doctor's examined Emma and I through doppler ultrasounds that took two hours minimum. These ultrasounds were performed a few times a week to check from 31 weeks to 37 weeks when I delivered. What they discovered was that Emma and I had a two-vessel cord that wasn't supplying the appropriate amount of blood or oxygen she needed. Maternal Fetal Medicine Specialist assured us that our baby was safe inside and she would be safe once they were able to deliver her and help her if needed.... however, the time in between.. labor.... was where our problem lied. .. The longer I was in labor the less blood flow she would have ... the longer and stronger the contractions the higher the risk. A Cesarean was not an option because of how unstable my health was. My specialists felt that we had a better chance of both of us surviving delivery if I delivered vaginally. By better chance I mean 30% chance of both of us surviving instead of 20%. . . . So here Kory and I were ... scared to death-LITERALLY- Everyone around us had heard the doctors say.. "We can't make any promises for either of you.."

I always believed in God. However, I didn't live my life the way God had planned for me to live it. When being faced with a situation that I may not survive ... I was terrified... Was I going to die?.... I told myself if I can make it through delivery this is the hardest thing I will ever be faced with in my entire life... (Again I was focused on getting there..reaching that destination..

When in reality those were the last few months that Maddie would ever have a normal child. . . I was so worried about reaching that destination in my life that I lost precious time in my journey that God has blessed me with.

My life has been and continues to be a roller coaster... I am only human... although some of you think I'm supermom.. (which I admire and appreciate the praise) ... I too am scared.. I am weak at times... I cant always hold back the tears when I'm asked the ever so famous "How do you do it?" (Did I mention we hate that!!!!!!!)

However, this is the life I was blessed with. This is not "the card I was dealt"... I am honored to have been blessed with Maddie and Emma, as well as being a wife to Kory. Believe me they are all three full time jobs.

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What is the point to all this rambling?.......

Whether or not you know it, many of you are too busy speeding to your destinations... to enjoy things in life. God doesn't care if you are first or last... God doesn't care if your five minutes late?.. Why do we ignore the beauty of our journey because we have to reach our destination? In all honesty... we have all heard "Rome was not built in a day." ... if it were, would it be as beautiful? If marriage was easy, would we appreciate it? Quite frankly, if Emma were healthy I wouldn't be 1/8 of the woman I am because of her and all that she has taught me. I regret not living life for the journey before I was forced to. God may be teaching me a lesson or using me as a lesson for all of you... Live your Life, day to day. . . My entire life changed in a split second and I have grown so much from it but still have so much further to go before I am where I feel I need to be. (I guess as Preacher Mike said today.. I'm wandering, I'm living in that space between where I am and where I want to be but I'm working on it. I'm trying the best I can to be the best I can be,.. From this day on I'm not worried about destinations, I'm focusing on our journey.

I hope that the journey God has sent our family on inspires you to forget the destinations and enjoy the journey. God doesn't care when you reach that destination if you haven't achieved what he meant for you to achieve on your journey.

As always thank you for following Emma's Story and I hope that she continues to inspire you as well as us. :)

*I have included some pictures that spoke to me .. I hope you enjoy.. None of these images were taken by me they are just inspiring pictures that I have found in the last few weeks.*

Hypogammaglobulinemia... ... ...

Labwork has confirmed our suspicions. .  .

Emma does have an abnormal immune system. Her gammaglobulin levels are lower than normal. That being said one of the function tests ordered came back with an abnormal reaction to tetnus and candida.. She is unable to fight off these infections. Which explains the 5 admissions to the PICU for infections in the last two months.

Not only does she have the kidney reflux she has to fight against but she also has a weakened immune system which is also putting her at risk for fungal and bacterial infections such as yeast infection and UTI's, etc.

What can we do? We are infusing her with IVIG.. .. we are building up her antibodies so her body doesnt have to work as hard and hoping this will keep the infections down.. we know that it will not keep them away completely. . .. . 

She will go to the day hospital and get her IVIG every three weeks for awhile until we can be sure whether this is going to work. Then we will still do them every four weeks if they do help.

Before we were discharged this last time from the PICU she completed her first IVIG infusion and also was given her fourth blood transfusion.(She has had four in the last five months.) Since everytime we draw more and more blood we think that all the labwork is causing her transfusion requirements. However, we never know with Emma...

Dr Basnet called in Dr Neibergie who is a Hematologist to run some testing on Emma and see if she has an undiagnosed hematology issue........ So far the testing they have performed has came back lower than normal but that was to be expected and they think it is all related to all the blood work she has done while in the PICU. There are some tests they are needing to perform to check into other possibilities, however, she had two blood transfusions that were only three weeks apart... so a large portion of her blood was donor blood...... So if they run tests now the results would be based off of the donor blood... so hopefully she can go a few months without being in the hospital and needing labwork drawn daily so that we can get accurate test results and know if there is another issue we need to treat.

We need a lot of prayers that this IVIG will work and help Emma fight off these infections and eventually go several months without hospital stays.

As always thank you for following Emma's Story! She is a very inspiring little gal and is loved by many! :)

 

IV Antibiotics at Home...

Although I was so excited to come home.. I was bringing a pretty heavy task home with me.

Emma was being released from the PICU but still needed four days of antibiotics. So this meant they would be leaving her port accessed and I had to learn how to give her IV antibiotics at home.

Very stressed because I'm always afraid until I actually complete the newest challenge and then I always say, "Well, that's not that bad.."

HOWEVER................. ...................... ..........................

Sleep is my friend, I need it to be the super-human I have had to become over the last eight months!

Between her feedings, her g-tube medications, her breathing treatments, and her IV antibiotics .... Sleep didn't exist for me for a little over four days. Her IV antibiotics were given over a half hour and an hour and I couldn't fall back to sleep until after they were finished.

They did teach me that if I remembered
S-----saline
A----antibiotic
S----saline
H----heparin
I would always remember that saying and the process will become very simple.

I also had to remember to always "scrub the hub" .... I used way over the required amount of alcohol swabs but I was very sure to protect her from any other infections!

The infection she has was a gram negative bacilli organism in her blood. So I was very sure to be extra careful that I didn't introduce another infection through her port.

Thankfully it was only four days and it was successful and has also helped us spend longer at home this time.

Emma always brings new challenges but I learn more and more with each new challenge and I'm so thankful I pick up on things so quickly and thankful that I am able to do all of this at home for her.