On July 14 1998, our lives were blessed with our beautiful Angel, Hannah. At the same time it was turned upside down. Little did we know that from this day on our lives would change and we would have to fight to keep our daughter alive. So began Hannah's constant battle to live and our fight to keep her alive and happy.

From day one Hannah has been such a sick little girl. She was born with Pierre-Robin Syndrome, which brought a whole world of problems to her. Pierre-Robin Syndrome is where the jaw in utero does not form right causing the tongue to block the airway. With this syndrome anything with in the middle of the body can have something wrong with it. In Hannah's case that includes almost everything. Her heart had some problems in the beginning but now it beats strong. Hannah has been in and out of the hospital all of her life, more than approx. 18 times, a lot of which have been extended stays. she has had more than 13 surgeries and so many more test.

She is on more than 18 meds daily to keep her stable. She has fought and won many battles. So many times her Doctors thought she would not survive but she proved them wrong. The fact that Hannah has survived so long is a miracle. She has many battle scars to show for it, but her courage and spirit remain strong. I am amazed by her strength and ability to forgive all who have hurt her.

Hannah has so many things wrong with her little body. To tell you about Hannah's life would take so much time, so I will just tell you what is wrong with Hannah. I guess I will start at the top and go down. Hannah has Hydrocephalus (fluid in the ventricles of her brain) she has a VP shunt (a tube placed in her brain) to remove the extra fluid off of her brain. She has panhyplopitutarism: hypothyroidism. This causes problems with her ability to grow, keep her blood sugar up and it also causes problems with her temperature regulation. She can have a temp of 97.5 one minute and then it can go as high as 105. She must take a shot every night to help her grow and help maintain her hormone levels. She must also endure being stuck for blood sugar levels everyday. Because it can go very low and cause her to have a really bad seizure. Even without her blood sugar levels going low she has seizures. She has 3 different kinds of seizures; grandmal, pettimal, and partial complex. Just recently, she started having a new kind of seizure, she turns very blue and stares. Some of these seizures have been really bad and they are very scary.

She has been diagnosed with SIADH(syndrome of inappropriate antidiuretic hormone) in January of 2001. This causes her not to void (urinate) so her body holds the toxins. So she holds her fluids and so she swells really bad. Her blood gets thinner and her electrolytes get really messed up. This can cause problems with seizures, her heart and it can cause a lot of other problems. She has very bad problems with her airway. First off the jaw and the tongue base block Hannah's airway. She also has tracheal and bronchial malasia (her lungs and throat collapse, because they are extremely floppy). Her lungs have severe problems. She is oxygen and ventolator (a machine that breathes for her) dependent. She has a trach (a tube that goes through her throat and into her lungs) this helps her breath. Without her trach and vent she does not breath. Hannah is now having more blue spells (she is not getting enough oxygen) requiring us to have to bag her (we have to give her deeper breaths with an ambu bag). The ambu bag helps get breaths deeper than the vent can and you can control the breath.

Hannah had a stroke at some point in her life causing left side weakness and many developmental delays. She has mild Cerebral Palsy which causes spasms and pain in her muscles. She can't bend her back because it is so spastic. She has to wear AFO's (braces to her lower legs, ankles and feet). They help to straighten her feet and to stabilize her ankles and lower legs when she is in the stander. A stander is like a wheel chair, but it helps by holding her in an up right position so she can stand. This helps to build strength and to help her bones grow. It also helps other body organs.

Hannah is hearing impaired and wears hearing aids. With these she can hear pretty good, she still misses some things, but it is a whole lot better. She loves to listen and will ask for her hearing aids by patting her ears.

She has had many problems with her intestines and stomach. She has had reflux which had to be corrected by surgery twice. Her intestines were rotated the wrong way and she had to have them fixed by surgery. She has absorption problems and requires many calories and a special formula to help her. In November of 2000 she was diagnosed with Neurofibromatosis. This can cause Cafe-au-lait spots (brown birth marks), she has many of these birth marks. It can also cause developmental delays, but any of Hannah's problems can cause this also. So it is really hard to say what caused her delays. It can affect the nerves throughout the body including the brain and the spinal cord. We are unsure if Hannah has any problems related to this. Also it can cause tumors, but Thank God for now she does not have any.

Hannah has been such a very sick little girl all of her life. Everytime we think we turn the corner something else major comes up. We have come so close to loosing her so many times but God has Blessed us with more time. We have just been told that Hannah's brain is atrophing (shrinking). The CT scans say it is progressive. So we don't really know if it will stop or continue. She has lost so many developmental skills that she worked so hard to get. She can't swallow now and is having a lot of problems dealing with this. She is getting choked on her saliva and is aspirating it into her lungs, which causes her to cough and have trouble breathing. She gets so blue when she does this it is really scary. She drools constantly requiring her face to need to be wiped frequently, which she does not like.

Hannah has never eaten by mouth so her not swallowing does not create a problem for her to eat. She eats through a hole in her tummy called a button. She also is allergic to every food they have tested her for and so right now there is no foods she can eat, but her special Formula. If exposed to any of these foods even by touch or smell it can cause an anaphalatic reaction (a severe swelling and respiratory distress). So we have to be very careful.

She has a very fragile immune system and has to be protected from illnesses, so she is not allowed to go out much, especially during the flu season.

Hannah's Doctors recently changed her prognosis to poor. So, we don't know how long God will continue to allow us to keep this beautiful Angel. If they don't find what is causing the atrophy of her brain and it keeps shrinking we know that her future is not very good. So we are praying for an answer and a miracle. Please pray for the doctors to find an answer and for Hannah to continue to be strong.

Someone once told me that prolonging Hannah's life was cruel and we should let her go. Yes, Hannah is a very sick little girl and she has had a lot of rough days. But she is happy and she has so much to give this world. She is a vital part and God created her for a purpose, she has important things to do. She has already thought us so much in the little time she has been here. I am truly amazed by this little Angel, God Blessed us with. Some days it is so hard especially when she is so sick. But then you see her smile and it is like a ray of sunshine strait from Heaven. Then we truly know that God is behind her and is with us.

So I will continue to fight for my beautiful daughter until she has no fight left in her and then we will give her the freedom To go home, if she chooses. But for me to make that decision is wrong and I cannot give up on her, I wont. I do not believe that is what God wants me to do. I think my son said it best, he said, "Mommy I think God gave us Hannah to slow us down and make us look at life differently." He is only 9 years old.

We just returned from Duke Children's medical center on 3-17-01. Hannah had an MRI on 3-16-01 and the results were not good the atrophy to her brain is more pronounced. Hannah's brain atrophy (shrinking) is worse and is progressive. The prognosis for Hannah for Hannah is very poor. Hannah's Doctor has told us there is nothing more they can do for Hannah. They want us to change her code status (which means if her heart stops they will do nothing to help her they will just let her go). So we are not quiting on Hannah but we are leaviing it in the hands of God. We are allowing him to take care of Hannah. Hannah wins either way. If she should leave us and go home to Heaven then she will be free, she will be made whole. If she stays with us she will be loved with all of our ability and we will try to make each day better than the last.

We now have Hospice working with and helping us with Hannah and help us to better deal with our feelings. Her Doctor says it is just a matter of time that this will eventually take Hannah's life. So every day we have her we thank God for that day and pray that she will make it another day.

We have had to start giving Hannah pain medicine, because she is hurting. It breaks my heart to see her in pain, but the pain medicine does seeem to be helping.