Emerie Faith

I have asked for many prayers over the last few months for my aunts little girl Emerie Faith. For those who know us, you know that my aunt is more like my sister and her children are more like my nieces and nephews and we will sometimes mistakenly call them that. Emerie is 13 months old and will undergo very serious surgery next week to try and correct her kneck and the base of her spinal cord. Here is a brief synopsis of what has gone on since precious Emerie Faith entered our lives 13 months ago...

When Emerie was born my aunt said from the moment she first held her that something was wrong that after 4 children, she just didn't feel right. It took 6 weeks from that time to get someone to acknowledge there was a problem with her body. When you laid her in her moses basket she could almost touch her feet to her head in a back bend and typicall that was the only way that she was happy. You could not hold and swaddle her like a normal newborn because she would scream and you had to try and avoid others wanting to hold her because unless you were always around her then you couldn't seem to hold her in ways that made her comfortable. Several things were tried until finally they decided in December for several doctors (Neuro, Cardiologist, Orthopedic and a gastro doctor) to go in and see if they could find out what was going on thru a scope. To no avail nothing was found except for the fact that in the 2 days she was in the hospital her head started flattening out. It was then that they decided she needed a "helmet" within 2 weeks or her skull would start pushing her brain so that it protruded at her forehead. For those who are not very knowledgable of the helmets, they cost $2000 and have to be replaced generally every 6-8 months. Luckily but unluckily since Emerie stopped growing, she has not had to have another yet.



A friend at my aunts church knows someone affiliated with the Shriners so she started calling asking for assistance and for those who don't know my grandfather was a member of the shriners and a past potentate before his death so we had lots of connection to good people. She went the Lexington in February where they decided she had a rare birth defect that would require surgery on her kneck but it would not be able to be performed until she was 2. Scary! So she then started recieving physical and cognitive therapy. With the helmet and the condition, Emerie would require help to learn how to roll, sit up, feed herself and maybe possibly walk and crawl one day. During the next few weeks, Emerie continued to be seen by diffrent doctors which has prompted her fear for elevators b/c she automatically assumes that she is going to a doctor when on one. Her information was sent to a doctor at John Hopkins who from looking at her scans and x-rays believes her skull is backwards or conformed incorrectly. We will know if this is the case in the next couple of weeks when she hits a growth spurt, if her skull grows. If her skull doesn't grow then we know there is a problem.


4 weeks ago she went to see the doctors in Lexington again and they agreed that she needed to have the muscle cut in her kneck and the halo to try to straighten it out. Luckily his best friend is a doctor at Vandy and he has agreed to perform the surgery locally. Which leads us to next week. The halo is very scary because of all the screws involved as well as the fact that she will be immobile during that time because of the weight and she will not be able to turn her head. Emerie took her first steps on her own last week and if you hold her hand there are times when she is almost running so to think that she will not be able to do all that is scary. The other option once the go in is that they put her in a body cast for a couple of weeks but they really don't know what to expect until they get in there. We've been told to hope for the best but to expect the worst scenario because there is not a good scenario other than her survival.



Emerie is a very special blessing in our life and continues to give our family faith everyday. For those who have met her and by looking at the pictures you will see that she always has a smile on her face. I want to thank everyone again and could not say it enought times how grateful we are for the emails, phone calls, and prayers going up on this little girls behalf. 4 weeks ago, the doctors couldn't figure out how she was even sittiing up, crawling, or walking. A baby in her condition should not be doing all that Emerie has!



I will post more info once we have the dates and times confirmed for surgery!