Monday, December 3, 2012

Sound Check? ....

This Friday, December 7th is something Kory and I are really looking forward too!
Emma will be getting her new set of hearing aids and according to her new Audiologist.. she thinks Emma's hearing may be better than they were initially thinking.. .. .. so her settings may be a little different..

That's not all... She is going to set Kory and I up in a sound booth and let us hear how Emma hears with and without hearing aids... Pretty excited. The more we know about her and how she functions the more success we will have in helping her meet her developmental milestones..

We are so pleased with our new Audiologist at SIU and how willing she is to take the time to help us help Emma.

Last but not least.. Emma's new aids will be giraffe print and this set of ear molds will be hot pink! :) .. Won't be losing those when they fall out in her car seat, swing, bedding, etc. :)

I cannot wait to get her ear molds that fit and keep them fitting well so that we can get working on her speech :)

I will be sure to share a picture this weekend when I get the chance too. .. Pray that Emma eases back into the transition of hearing aids well. . . It is a huge sensory adjustment for her.

Friday, November 30, 2012

Our Journey over the last 9 months..

This is the latest video that Aunt Sami has put together... This is amazing and I had to share! :)

CMN Radiothon: Emma's Story

Here is a preview of Emma's Story from the radiothon if you missed it... Enjoy!

Children's Miracle Network Calendar 2013..

Children's Miracle Network-Springfield has a calendar every year and Emma was selected to be one of the 12 children to represent St John's Children's Hospital...

You can purchase these calendars for $10.00 at St John's Children's Hospital Gift Shop, St John's Pediatric Rehabilitation Center and St John's Main Hospital Gift Shop.

Emma is representing January and our sweet friend Faith represents the month of September :)

All of the money from these calendars stay at St John's Children's Hospital to help children like Emma and Faith during their stay. :)

A Healthy a Happy Baby!

Emma has been a completely different baby girl since we spent that 7 week stretch at home and we were actually able to work with her and get her excited about things. Laying in a hospital bed day after day is miserable.. this we know.. but for a baby :( She cant even play on her phone or do a crossword if she wanted too..

Since we spent all that time at home Emma has been doing a lot of therapy at home and getting her trunk under control (still emerging and constantly making positive progress).. I would definately call her a 'supported sitter' and she is able to be in an upright position more to work on her hips as well as trunk and head control.

The fact that she continues to bounce back gives me hope because there has been so many times when she wasnt able to bounce back for weeks. Also with all the new information on what we have found out with her hearing and vision makes us have a whole different look at things.

From what we were being told/shown by the test results... Emma was not seeing very well and she definately was not hearing anything without aids.. Things are looking a little different now. :)

We know her vision is pretty good from all she is showing us.. :)

A Sight to See...

Another thing I have been so excited to share is that we have yet another addition to TEAM EMMA. This time it is a vision therapist who is teaching us so many ways to help Emma progress with her vision..

Not only is Emma following every single thing that goes on in the room... She refuses to keep her glasses on which worried me but both her opthamologist and her vision therapist are not at all worried because they think she is seeing at 20/70. Which is legally blind.. but we did learn people can still drive with this bad of vision.

HONESTLY.. Unless I tried to focus on something far away I couldn't tell a difference. She is near sighted. .. Her vision is 10,000x's better than I ever imaged it to be! Which make me one happy Mommy!

She is following us, recognizing people, and playing with some objects. (Saline flushes are her favorite..poor thing has spent to much time in the hospital..)

Miss Joni (our vision therapist) is from Illinois School for the Visually Impaired and has done amazing things for Emma and I'm so excited to have her as a part of TEAM EMMA :)

New Emma Record..

The most time Emma had spent at home prior to this record breaking stay is the initial 6 weeks home..(42 days)

From September 18th to November 20th the only time she spent in the hospital was one 23 hour observation.. which she didn't need to be in hospital we took care of everything but we didn't want to take that chance so we agreed. We were home on IV medicine as a precaution but we were able to stop them at 48 hours post admission because her cultures were showing no growth.

Emma's new record is now set at 63 days home! :) We are so very proud because there was a period of about 5 months where we hadn't spent 60 days home in all 5 of those months combined.. and some of them we were not even home for 60 hours! :/

Baby steps are better than taking steps back. We are so very proud of all Emma is accomplishing. Her IVIg infusions that are strengthening her immune system for her have helped out BIG TIME!

(She is actually getting an infusion as I type.. seems as those this is the only time I have to actually update the blog anymore.. )

Thanks again for all the support :)

Tuesday, November 6, 2012

Children's Miracle Network Radiothon...11/15 & 11/16

Our story will be shared with listeners all over the state/nation next Thursday and Friday. WDBR out of Springfield will be airing the event hosted by Children's Miracle Network out of Springfield.

This is an opportunity of a life time. I know you may not think a story as scary as ours could happen to you.. but let me tell you... it can happen to anyone, at any minute... and there's nothing you can do but hope you make it to St John's Children's Hospital in time to be placed in the hands of the amazing medical staff at this hospital.

We cant financially make any donations but we know that every dollar counts.. So no matter how small the donation.. Please try and donate to the Children's Miracle Network... we have many things that needing funding help to take St John's to a whole new level.

This funding goes to help miracles like Emma, Faith, and many more little gals who have inspired us all in so many ways.

If you have time.... next Thursday 11/15/2012 and Friday 11/16/2012 all day anytime... come out and see what Children's Miracle Network does for St John's Children's Hospital. Come see past and present St John's Miracles... because unfortunately you never know... in reality you child could be in the hands of this amazing staff in the future. I pray that is not the case, however, that is something that only God knows.

Hopefully this link will work... this is a you tube video created by an amazing member of the Children's Miracle Network.. its a brief overview of our story that will be shared on the Radiothon....

^ For some reason you do have to type this link out in the search bar.. but if typed correctly it does take you directly to you tube and begins to automatically play the video. Enjoy!

Saturday, October 27, 2012

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!

Friday, October 19, 2012

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?... :)

Sunday, October 14, 2012

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.

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.

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.*

Thursday, October 11, 2012

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
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.

Sunday, September 30, 2012

Fighting through the Infections...

In the last two months (61 days) we have spent 48 days in the St. John's Pediatric Intensive Care Unit. With each admission we face a new infection. First it was a UTI which turned into a kidney infection. Then she has a yeast infection. Then she had an upper respiratory infection where her right upper lobe of her lung collapsed due to infection. That was followed by yet another UTI. (Emma has grade 3 kidney reflux- we are doing what we can to prevent UTIs.) Emma is know currently in the PICU because the Infuse-a-Port that was placed on the 13th of September became infected. We have fought of the infection with double the antibiotics and by keeping her on them for a little longer than usual. However, there is no telling if once the antibiotics are out of her system if she is just going to get another infection or not.. So, we wait. Only time will tell if we will be keeping the port in. As of now the port is staying in but if she gets another infection they will have to remove the port and then get the infection completely taken care of before they even think about putting in another port or trying another option like a broviac. (Another form of more permanent access!) Either way foreign objects (such as plastic) in the body is always a risk for infection, it's not really going to matter what method they use if her immune system is not strong enough.

Last night, we did infuse her with IVIG (Immuniglobulin). This human product is given over four hours and every 15 minutes they monitor blood pressure. We will be coming in every 4 weeks and getting her IVIG infusions. It will take four hours every time. We should be able to come to the Day Hospital and get them done as long as things continue to go well. We shouldn't have to stay overnight each time. It will take a few times to actually notice a difference. Also, as far as immunology goes... we have a lab test that is pending. It a Tcell/Bcell function tests-its will tell us although she has an appropriate amount of cells for her age and given her condition are they working appropriately. They will test her sample against common bacteria and viruses. Depending on how they respond could give us some more answers as to why she gets so many infections. They did think because of the type of organism that was present in her blood culture this time, that she may have a white blood cell disease... The results for that test are in......... and she does NOT have a white blood cell disease.

I will be sure to share in future post once we get the results of the Tcell/Bcell function tests. Thanks for continuing to follow Emma's Story. I hope that at least once a day one individual realizes that their life is not as bad as they like to think it is.. Emma's fight is encouraging people all over the world to change in different ways to become a better person. That alone is something to be proud of.

Thank you all ... Happy Reading.. and God Bless you and your families! :)
                       <3 The McGovern's

Wednesday, September 26, 2012

Understanding 10p deletions ...

Some of you may not at all be interested in the information I have attached but I know some where asking if I had addition literature on some things... so this is what I have. I also will be posting some information on how her 20p13 duplication is said to effect her in the future. Genetics to most people is not all that interesting. However, I wanted to put it out there for those who were requesting it.

I realize that I haven't taken a lot of time to actually explain the basics of Emma's chromosome abnormalities... I know I have mentioned a few things and briefed you all on it but I wanted to give you an overall... "research" point of view... This is based off 10p deletions, not just 10p13 deletions. Its a basic overview of information on deletions of the 10th chromosome. Most of the information acquired I link to Unique because that has been a huge help in me understanding things. Therefore, that is the information I use to help explain things for you.

Emma's Chromosome Abnormalities:
      - 10p13 terminal deletion
         -20p13 duplication

10p deletions

A chromosome 10p deletion means that part of one of the body’s chromosomes has been lost or deleted. If the missing chromosome material contains important instructions for the body, learning difficulties, developmental delay and health problems may occur. How serious these problems are depends on how much of the chromosome has been lost and where the deletion is.


Genes and chromosomes

Our bodies are made up of billions of cells. Most of the cells contain a complete set of

tens of thousands of genes. Genes act like a set of instructions, controlling our growth and development and how our bodies work. Genes are carried on microscopically small, thread-like structures called chromosomes. There are usually 46 chromosomes, 23 inherited from our mother and 23 inherited from our father, so we have two sets of 23 chromosomes in ‘pairs’. Apart from two sex chromosomes (two Xs for a girl and an X and a Y for a boy) the chromosomes are numbered 1 to 22, generally from largest to smallest. Each chromosome has a short arm (at the top in the picture below) called p from petite, the French word for small, and a long arm called q (at the bottom). In a 10p deletion, material has been lost from the short arm of one of the two chromosome 10s. You cannot see chromosomes with the naked eye, but if you stain them and make their image about 1,000 times larger with a computer or under a microscope, you can see that each one has a pattern of light and dark bands. A small piece or a large piece of the chromosome can be missing. Sometimes it can be identified under a microscope or on a computer. The missing piece may be so tiny that it can only be identified using new technology with tests such as FISH or array-CGH. It is then called a microdeletion. One type of deletion is called terminal. The chromosome has broken in one place and the part of the chromosome from the breakpoint to the end of the arm is missing. Another type of deletion is called interstitial. There are two breakpoints on the same arm that have rejoined and the part of the chromosome between them is missing.

How do we know about the effects of a 10p deletion?

Your genetic specialist can tell you more about the chromosome material that has been lost. You will almost certainly be given a karyotype, a short hand code for your child’s chromosomes that shows the points where the chromosome has broken and rejoined.

People with a 10p deletion may have the same break in their chromosomes or a similar one but they do not all have the same problems or features. There will be differences between your child and others with apparently similar chromosome changes and these differences can be quite marked. It is very important to see your child as an individual and not to make direct comparisons with others

After all, each of us is unique. But some features and health problems are similar in people with a 10p deletion. It is hard to be certain then about the effects but as more people are diagnosed, the picture will hopefully become clearer. The oldest child with the disorder known to Unique is in her late teens
and the group has one affected adult member, but it is likely that there are many older people with a 10p deletion.

                                                     Deletions from 10p12, 10p13 or 10p14

Among babies and children with a breakpoint at 10p12, 10p13 or 10p14, features such as some delay in development are consistent and a slow pattern of growth and an unusual look to the face are common. However, individuals vary widely, both in the ways they are affected and the severity of the effects. As a broad generalisation, where the breakpoint is in band 10p14, and especially if the chromosome has broken near to band 10p15, the effects are milder.

Within band 10p14 there is a gene known as GATA3 and when this gene has been interupted or is missing,
 a child is likely to show one or more of the three hallmark features of HDR syndrome. H stands for hypoparathyroidism. Children often have low calcium levels. D stands for deafness, usually a partial hearing loss that is present from birth and affects both ears. R is for renal. The kidneys may be small, abnormal or one may be missing or there may be urinary tract abnormalities.

A little closer to the centromere (the point where the short arm meets the long arm) there is a region of 10p known to be important for the normal development of the heart and the cells known as T-cells that help to fight infections. This region is known as the DiGeorge critical region 2 (shortened to DGCR2) because babies and children who have lost important genes from this region have similar clinical problems to babies with a condition known as DiGeorge syndrome. However, DiGeorge syndrome proper is caused by the loss of a tiny amount of chromosome material from the long arm of chromosome 22. The geneticist or paediatrician who tells you about your child’s chromosome disorder should be able to tell you whether your child has lost GATA3 or the DGCR2.

To parents, a baby with a 10p deletion may look little different to other babies.
Nonetheless, if you meet another affected family, you may notice some similarities between your child and theirs. Any similarities are likely to be less easy to interpret if your child has a 10p deletion as part of a more complex chromosome rearrangement.
This picture was taken back in June....but its a happy picture!
Thanks again, for taking the time to read through Emma's blog, pray for Emma, and most importantly thank you for letting Emma's Story inspire you! :) Have a blessed day!

Monday, September 24, 2012

Catch 22?...

Over the last few months, Emma's constant need for IV access and need for central lines has forced us to make the decision to put in an "Infus-a-port". Usually seen in oncology patients but is also used for situations like Emma when they need constant IV medications or are impossible to access at a moments notice.

We all know nothing comes easy with Emma. There is always a problem to follow. Usually an infection. In the last month and a half, Emma has had two UTI's (which we are blaming on kidney reflux), two yeast infection (which we are blaming on all the antibiotics she has been on in the last two months), an upper respiratory infection, as well as the latest, infection in her blood.

We all having been praying that this infection in her blood has nothing to do with the port that she had placed September 13th. We knew Emma was at high risk for infections when we placed the port. Her compromised immune system puts her at risk for all kinds of infections and when it partners with her kidneys ... the infections come on quick and strong.

Her specialists are now planning a meeting to discuss where we go from here. . . We are going to try and attempt to save the port (WHICH IS POSSIBLE! SO PLEASE PRAY!!). They also want to talk about what to do for Emma's immune system. She needs supplemented in some way but they are going to need several more tests ran to determine which way to go about helping her immune system. Also the organism (Serratia Marcescens) found in Emma's blood cultures are a common infection in children that have immune deficiency problems.

I will keep you posted.... at this time we are on a mission to save the port! Prayers are needed!!!!!
This is what Emma's port looks like. It is a Bard PowerPort. This is a life saver for Miss Emma! Please Pray that we can save it!!!

Recovering from her port surgery....

Saturday, September 22, 2012

Days Go By...

We have had five admissions in the last month and a half... Which does not leave much time for the blog although each admission has its own story and I will get to it soon.. For now here are some pictures to enjoy and a brief summary of the last few weeks.

As you may know, Emma did have her cataracts removed July 31st and August 2nd.. which put us in the hospital for much longer than expected. Throughout August we battled recovering from surgery and near death experience in St Louis at Children's. After recovering we were hit with a UTI and once she recovered from that she ended up with a yeast infection. After overcoming all of this, we go home for what we thought would be a record breaking stay at home because she was doing fantastic. Just to find that we were only home a few days before Emma's right upper lobe in her lung collapsed. Kory had to resuscitate Emma with rescue breaths because her sats had dropped to high 60% s - low 70% s range. Falling below 90% is abnormal. This is indeed how we spent our labor day! It was 9p.m. on Sept 3rd (Kory's birthday was September 2nd) and we were making our first 9-1-1 call... The paramedics arrived in minutes and our "Emma Emergency Plan"  worked perfect. Saint Flight arrived to get her to Springfield and the Rushville EMS Team did FANTASTIC. We all wondered in the event of our "Emma Emergency" would we all be able to work as a team and help one another out. We did amazing and I was very proud of Kory, myself, and our entire community for working together in the time of need.

Emma is currently in the hospital (since September 20th) with an infection in her blood and a fungal infection. Please keep her in your prayers. Her Infectious Disease doctor is here to give me an update ....

Here are some pictures from the last few weeks..... Enjoy!

Right after returning from the PACU having her port put in. She is such a little rock star! We are soooo proud of you Emma!!!! :)

Poor Emma :( She feels horrible....

 September 3rd stay... One sick baby..

 Pulling off her stickers so that the monitor goes crazy and the monitor at the nurses desk beeps like crazy! She is soooo ornery!

Being her Mouthy self.. that is when we know she is feeling better...

 Sicky baby... :(

 Always Say your Prayers!!

Sooo exhausted!
 Daddy and Emma taking a nap in the PICU..

 September 3rd... When her right upper lobe was collapsed. :(

<--Blood transfusion..#3

"Really Aunt Amy? Listen to Aunt Danica those socks were whack!"
*I will be posting more information when I have more time but these last few weeks have been so crazy busy! This week I'm planning on several posts to catch up from all these hospital stays. Until then Happy Readings :) Hope everyone enjoys there weekend!!*

Wednesday, September 12, 2012

Healthy Kid Challenge

A member of TEAM EMMA has started a healthy kid challenge to allow people to show their support. Most couldn't imagine their child going through the daily struggles Emma and our family face. Emma is a fighter and God gave her to the most amazing parents she could ask for! :)
How do I help you ask?
The Healthy Kid Challenge was designed for people to send $1.00 in to the McGovern Family for each healthy kid in your immediate family. You may donate more or less, it's whatever you can afford. This was an idea thought up by a family friend.
Make checks payable to:  EMMA MCGOVERN TRUST FUND
Mail all HEALTHY KID CHALLENGE donations to:
229 N. Liberty
Rushville Il 62681
This amazing idea has raised over $500.00 for Emma and her family.
Please know that our family couldn't provide Emma with the amazing quality of life she has without these benefits! With Emma's constant medical care her parents are unable to work 'normal' jobs. Mickayla (mom) is unable to work at all and Kory (dad) can only work certain days and usually those are the rainy days when he is unable to work. They are experiencing HUGE financial difficulty but are still staying positive through it all for their two beautiful little girls! Let's help them out !

BENEFIT FOR EMMA: Sept. 14th &15th

If you have any free time this weekend... Come out and show Emma the support she needs!
There are so many things going on this weekend...
FRIDAY, SEPT. 14th .......  FUN STARTS AT 6 p.m.
  • GLOW BAGS TOURNAMENT (Teams of Two) Sign up by 6pm ...They will be serving Chilli Cheese Dogs
SATURDAY, Sept. 15th..........
9am- Sausage Gravy & Buscuits $5.00
       - Ride Sign- In $10.00 per person
       10:30am - 4:00pm 
            -Anderson Lake
            - Chaser's Tap
11:00 am  PORK CHOP SANDWICHS & HAMBURGER PLATES $5.00 (to go available)
                         *This is for people who do not want to go on the Ride for Emma and want to stay
                               close to home!
                       HOW IT WORKS:
                1. Get a team of 2-10 people ($10.00 per person)
                2. We will give you a list of items to take pictures of and tasks to complete with your cell
                3. You will text pictures to number we provide at the start of the scavenger hunt.
                4. First team back with all or the most tasks completed wins.
                                       1st place: $100
                                       2nd place: $50
                           *BEST DRESSED 'REDNECK' WINS A PRIZE!*
4:30 pm - AUCTION BEGINS!!!!!!!!!!!!!!!
             *Two Solid Oak Nightstands, 8 hours (value of $1180 of bulldozing and $400 transportation cost) Bulldozing, 5 yards of concrete ($500+ value), Double-Door Smoker, Yard Rock, Quilt, Bags Boards (TEAM EMMA), Handmade Duck Call (TEAM EMMA), 5 pencil arts, Ducks Unlimited items, tons of Terry Redlin items, World Series Cardinal items, etched glass picture, ton of gift certificates to all different kinds of places, hair care products, Harley Davidson Wooden 'Rocking Horse' Ruger American 30-06 ... 60 lots of items!!  THIS IS A HUGE AUCTION!!!!
6:30 pm: OPEN MIC
RAFFLES INCLUDE:     Harley T-Shirt Quilt, Deer Antler Knife, a few more items.
If you are unable to attend but would like to donate :
Mail a check made out to (Emma McGovern Trust Fund) :
Chaser's Tap
229  N. Liberty
Rushville IL 62681

Pages - Menu




Blogger templates

Blogger news