Baby Asher’s Craniosynostosis

This is Asher he is the oldest of my six month old twin baby boys. Asher has recently been diagnosed with Craniosynostosis. Craniosynostosis is a pretty rare birth defect/condition affecting about 1/3000 babies . So ; babies have sutures (fibrous seams) in their head and if the suture closes prematurely  it fuses into bone and can no longer grow in that space risking malformation of the skull and delayed brain growth. Babies sutures generally fuse between ages 1-3 . Treatment is to go in with surgery to relieve the pressure on the brain caused by the bones fusing too early.  Asher has had his ridge noticeably to me since September but it didn’t look misshapen until recently and he has a lump of bone poking forward and tissue. The lump of bone and tissue is what alarmed me severely. I told his pediatrician and she said wait until it changes shape/size and she would refer us to a neurologist when I said it was bigger. Two days later it was noticeably bigger and I called the pediatrician so she would go ahead and make that appointment, they were working on it .  
I waited one more night and it was bigger the next morning .So I freaked out. I went and got him checked out at East Tennessee Children’s Hospital (ER) on Wednesday November 13th. They gave my baby an ultrasound of his forehead but never did I think I would find out his metopic suture is fully closed and protruding , meaning he has craniosynostosis of his metopic suture ,Triganocephaly. With the ultrasound findings the ER doctor presented it to  ETCH’s neurologist/neurosurgeon and the neurosurgeon told me to have him at his pediatrician on Thursday to be checked out and referred  to the neurosurgeon at Vanderbilt in Nashville. On Thursday November 14th his pediatrician called in the referral for Asher for a consultation with the neurosurgeon. I got word back that Monday morning Asher needs to be at Vanderbilt to meet his new doctor and make a game plan . Please keep my son in your thoughts and prayers. Please send my son good energy and healing energy.  Please pray for my strength through this hard time I’m trying to be strong for him. I have been out of work dealing with all this new stress and worry about Asher. I am usually one to never accept or ask for help but desperate times call for desperate measures. I don’t know how long I won’t be working, I don’t know when this will all be over. I don’t know if Asher will be in the hospital on Christmas or home safe and sound with his big brother and twin brother. I don’t want to leave him with family to go work if he starts acting like he is hurting or having headaches or something crazy happens I know him best and I know when somethings wrong , I trust my family but mother knows best.  The last thing I need to stress about is how to get by. Right now I am fine my kids are happy fed and taken care of that’s all I need in this world but I need to focus on ASHER and his health. Solely . Not money or stress , worry or doubt. WE NEED LOVE PRAYERS AND SUPPORT.43493944_1574114316235661_r.jpeg

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Organizer

Rachel Raynie 
Organizer
Sevierville, TN
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