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GO TEAM IZZY

$22,274raised of $20,000 goal
100%

Organizer: stephanie sherman Beneficiary: Sherman Family

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Isabelle is a almost 6 month old baby fighting for her life in the PICU of a children's hospital in Albany New York. Izzy was born at a healthy 7lbs even and when admitted to the hospital for the 7th time recently was 7lbs 14.5oz. Up until the time of her admission she was stumping doctors as to why she would not gain weight even on high calorie tube feedings. here is the short version of what happened before this admission..... At one month Isabelle had her first surgery for pyloric stenosis, at two months she had surgery for severe GERD and had a g-tube placed, at 3 months she got a bacterial infection around the tube, at 4 months she was investigated by a geneticist, (who is still involved) and 9-20-12 she was admitted again for another attempt at figuring out why she would not gain weight. The geneticist suspects pyruvate dehydrogenase deficiency witch is a neuro-metoblic disorder so he places her on the diet that he thought she would do better on and she still was not gaining. They decided to place a central line and give her some nutrition that way and no a MRI to check her brain for any signs that we might be missing. The line was places in her inner jugular and tunneled out her back so she could not pull it as she is a very happy baby and active just very small. The MRI revealed a lesion like cyst on the pituitary gland in her brain that they think may be also contributing to her health problems. Just when we thought we were close to getting answers Isabelle started to get sick and on Friday the 5th of October she got really sick. Izzy some how acquired a blood infection while hospitalized and is now severely septic with respiratory failure and in the ICU. She is very swollen everywhere and we are pounding her with antibiotics and praying. This whole time her mom is by her side no matter where she is and her dad has to juggle between the hospital and home to take care of Izzy's 3 older brothers. Izzy has spent half of her little life as a inpatient and it has taken its toll on us as a family physically, mentally, emotionally and financially. The 3 boys at home miss their mommy and their sister.... There is Daymeon who is 7, Caydan who is 6, and Kenny Jr. who is 19 months. Her brothers have had to learn to go without things like cable or a computer to play on and a lot of other things they were used to having because we have had to cut things to try to make ends meet. We have 3 maxed out credit cards, a astronomical utility bill, we are behind on our van payment, and at times don't know if we will be able to pay rent. This page is set up so we may be able to focus on what matters the most, our kids and Izzy's health rather then trying to worry about power getting shut off or our van repossessed. This is going to be a long road but I have faith that it will all work out. We have a great support team! So i ask.... Would you be willing to skip your $5 cup of coffee even if just for one day and help us support this amazing strong willed baby? No donation is to small and a lot of small donations will add up fast! I thank you for reading my daughters page. The pictures of her with the vent are the most recent but I had to include some with her amazing smile. Izzy has lots of links and i will list them below... Her Facebook page~ www.facebook.com/HelpIsabelleGrow Her caring bridge(a lot of info here)~ http://www.caringbridge.org/visit/isabellesherman Twitter~ http://twitter.com/HelpIzzyGrow there are also a few you tube videos and the links can be found on her Facebook page. I thank you from the bottom of my heart for any help you may bring to our family!!! God bless you all and GO TEAM IZZY!!!!! P.S. don't forget to like and share this page and Izzy's other pages to share her amazing strength with the world!!!
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Updates

Updates

01/17/2013
by stephanie sherman
~~~IZZY UPDATE~~~ I will warn now that this is going to be a long update and a very hard one for me to type.... I will also say ahead of time that i know this update may cause mixed opinions and this is a very hard time for my family so i kindly ask for everyone to keep anything negative to yourself :) I feel bad that that need to be said but it does Izzy was happy for the most part during our visit today :) we had lots of smiles and she was very excited to see mommie and daddy.... She always can brighten our day!!! We had a few preliminary meetings with a few of the docs involved in her care and we listened to each ones opinions before we all sat down at 2:30 to make a plan and figure out what to do with our little high maintenance diva girl At 2:30 we met with a few docs from the palliative care team, the attending in charge of her care right now, her MITO specialist, a fer nurses ans the social worker involved in the planning of her care... Izzy is still having positive cultures and we are unsure if she will ever have negative cultures..... Izzys infections are becoming more and more frequent and less and less responsive to treatment....Some antibiotics are even no longer working.... These are not just line infections these infections are in her bloodstream as well..... The options are both scary... we could pull her line to rid some of the infection and treat her with IV after IV for the next 7 days (Izzy does not hold IV's well they will typically blow after no more then 8 hours) and then when she is clear place a new clean line and start over BUT unfortunately she will just get reinfected.... Izzys belly and intestines are constantly leaking because of the MITO and the TPN and she can not live with out the TPN she would not be able to maintain sugar levels and nutrition levels and such.... OR we can try to treat the best we can through this line and pray that it clears and never comes back.... There comes to be a point when you are at a crossroads and you have to make a decision as hard as it is and we have..... We will be bringing our princess home on Monday with her line and we will not be going back to the hospital... Izzy will be on hospice and we will treat her the best we can to give her the best quality of life we can at home for as long as she has..... We want her to spend her time at home and to not be poked and prodded and tortured to loose the battle in the end anyway that is not fair to her... If we or the doctors thought that we could ever stop this cycle we would try but we are not going to put her through all of this anymore.... Izzy is strong and a incredible fighter and if she indeed is going to preform a miracle then she will do it anyway :) She has fought like hell and it is becoming more and more frequent that she just looks at you with those eyes and says please no more.... she does not have a voice to say enough... She is needing more and more morphine now and we don't want her to be in pain... We are going to make her comfortable and give her the best quality of life we can until her body tells us she just cant fight anymore..... We will be leaving her on the antibiotics for the fungus indefinitely but it is only a matter of time before the fungus breaks through and stops responding to that to... They say we could have weeks or maybe months... it is hard to tell but they have said less then 6... This has been one of the hardest decisions i have had to make in my life!!! Kenny and I think that we have made the best decision for her and the most fair to her.... She is beautiful and amazing and our hero for fighting as hard as she has and it is not fair to make her fight a battle that she has little to no chance of beating when she has to suffer through some of the fights.... There will be no more invasive procedures...... Our hearts are broken :( I type this with the tears just flowing and thank God i know where the keys are as i can not see them.... Daymeon and Caydans hearts are broken but they are excited that sissy will not be going back to the hospital anymore..... They know some of what to expect and they know that when the time comes we will all be home and they can remember her that way and say goodbye to our princess at home where they are comfortable and not in a cold hospital room surrounded by scary equipment and strangers.... This is going to be a very rough and emotional road for us and i thank you all so much for your love and support through this..... We have not lost hope for a miracle and we wont but it is time to leave the miracle to Izzy..... We love you team Izzy and we thank you for everything from the bottom of our hearts ? A few page updates..... I will be catching up and getting back to those of you placing orders for bracelets soon.... it will keep me busy and keep my mind off things :) Anyone wishing to order that missed the post can look back and find it or shoot me a e-mail shermanstephanie25@gmail.com Izzy's donation page for her and our family's expenses made a great jump yesterday thanks to many of you who worked together to help us :) We jumped from 78% to 83%!!! Thank you so much for all that you guys do for us and your hearts :) you really do amaze us everyday!! http://www.youcaring.com/medical-fundraiser/go-team-izzy/27281 I will be returning to the hospital tomorrow to spend the weekend there with her.... I miss her so much and right now all i want to do is snuggle her and never let go!!!! I never knew my heart could be so broken but i know that this is the right decision for Izzy..... Goodnight Team Izzy :(
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by stephanie sherman
Miss Izzy Is coming Home!!!!! Now that we have a diagnosis to go on we will be returning home for the first time in almost 3 months!!! 

Izzy has mitochondrial complex 1 deficiency

The prognosis for Izzy depends on her and how well she responds to treatment..... so far there has not been much change but we are remaining hopeful...

We will be going home on TPN and Lipids and the continuous tube feeds

We will be staring PT and OT as well as speech therapy ...
to work on things in hope to reverse the regression in these areas that she has but there is o guarantee that there reflexes and muscles will work again...

The TPN will over time damage her liver and we may need a liver transplant if that time comes but we will deal with that hurdle when it gets here..... A liver transplant with this disease is complicated..
This disease affects everything..... it affects all organs..... This disease contributed to the loss of red blood cells as well and we know know why she keeps needing transfusions..... hopefully this will stable out and we wont be needing as many...

We are going to take her home and love her and cherish every moment we have..... She is a fighter and i have faith that she will give this disease a run for its money and fight as hard as she can...... her strength amazes me.......

Please pray for a miracle for Izzy! She is our princess!

thank you as always for all your support! We love you Team Izzy and your hearts amaze us!!!

Staying strong for her and loving every smile as always

Your support for our family is so much appreciated in this journey..... A little bit goes a long way :) We have paid off a lot of owed expenses and managed to stay in our home but still have a long way to go....

Isabelle's Facebook has almost 10,000 followers.... look at the big picture if 10,000 people donated just $5 we would have all of her back expenses paid, be able to replace household items sold for her expenses and be able to make sure Izzy always had her needs met :)

Thank you so much for helping our family!!!

Love the Shermans
Stephanie (mom)
Kenneth (dad)
Daymeon (7 yr old brother)
Caydan (6 yr old brother)
Kenny Jr (19 month old brother)
And of course Izzy who is now 7 months and 8lbs 6oz :)
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10/12/2012
by stephanie sherman
Izzy was on the news!!!  
http://www.fox23news.com/news/local/story/Baby-fights-mystery-diagnosis/KdviTqMdFEa6Ea6Xt_NtVQ.cspx

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