PLEASE Pray for my 2 year old son!

[dlaureanonw]

I am so sorry to hear. Sending you and your family prayers.

[Yorkiemom1]

Originally Posted by lillymae

First let me say that I am Praying for your family. Second , you NEED to find someone who specializes in Chiari Malformation. Chiari is Not a brain deformity it IS a Skull deformity witch can cause brain problems & would explain the lack of chewing motion in your son as it can affect the neck & the 2 can cause painful chewing motion. PLEASE find a specialist, DO NOT let just any Dr treat your son. There are not enough Dr's familiar enough with Chiari Malformation. FYI Chiari is Both Congenital & Hereditary. Do your research & join Chiari groups to find the BEST Dr's for your little man. Again , I am Praying for your family.

Mike Tallulah: I hope you are able to get your son to eat properly. I would look into the PEG tube myself- Just because he would have it does not mean you would have to use it. It would take some of the "you must eat" pressure off of him and you. It may give him much better quality of life for both of you. Just a thought.

My brother had Chiari Decompression surgery at 14. He did great.


I have NO personal experience in what you are enduring with your son....my heart breaks for you, as a mother with a special needs son myself. I can clearly understand your anguish, as any other mother can. I DO have personal experience with the power of prayer, and have been touched directly by Him, which makes my belief in the power of prayer, absolutely undeniable and unshakable. So I KNOW I can do that for you, pray.....and I know He is listening to all our prayers for this small child of His. The only other thing I can do, as a professional in a speciality field of medicine (cardio-vascular, and transplants) I am well aware of the absolute need for a SPECIALIST in ANY complex diagnosis a patient has. I am NOT a pediatric nurse and have NO experience with pediatric neurosurgry or the doctors that specialize in this area of medicine. But it is imperiative you find the BEST such surgeon for the best outcome onyour son. I think that is information you can garner thru association with MULTIPLE Chiari support groups, which will lead you to names and hospitals that have the best treatment outcomes for this condition. To enable you to take the time required to thoroughly and completely investigate who would be best suited to treat your baby, I agree with Mike Tallulah.....I would go ahead and have a PEG tube inserted. THAT alone will take a TON of concern and worry off the table for you....if you need it, it is there. If you dont need it, no big deal, dont use it....BUT YOU WILL BE FREE FROM THAT CONSTANT TERROR THAT YOUR SON IS NOT GETTING NOURISHMENT REQUIRED TO KEEP HIM PHYSICALLY "TUNED UP" AND IN CONDITION TO BEST TOLERATE ANY SURGERY HE MAY NEED......or even to survive! My heart goes out to you sweetie, and I will go to my knees for your son, as I have done for others here in great physical crisis. Have faith Tracy that our prayers ARE being heard, and He WILL intervene You remind Him, He promises us if we call out to Him, he will listen...you make it clear you ARE calling on Him to honor His promise, and you are asking for His guidance and direction on WHERE you need to be going to get the best help for your son! He WILL take it up for you and orchestrate this whole thing for you! God bless you and your son!

[linda44]

I'm so sorry this is happening. I will pray for you and your son.

[wisteria]

Tracy, I know first hand how you feel...........Prayers, Hugs and Support to you and your family............

[TxVicki]

Travy many prayers going out for your son and your family.

[rubymoon2072]

i will keep you and especially your son in my thoughts and prayers. i hope you find a specialist who can finally shed light on the situation and also has the answers you so desperatly need. try to stay strong and calm...easier said then done, i know. i wish there were more we could do to help you! hugs and prayers.

[Samuelsmommie]

Thank you all for your concern and kind words as well as prayers and support. I can't tell you how much it has meant to me.

Yesterday and last night were really hard for me, but today I have pulled myself together, dusted myself off and am focusing on what's BEST for SAMUEL. He is my main focus and concern. He is still running around being his happy go lucky self.

I was kneeling beside the bed earlier with my head on the bed, lost in thought. Sam walks over climbs on the bed, kisses the top of my head climbed down and went back to playing. The revelation in that for me was God will always give you what you need when you need it. I didn't know it at the time, but I needed that at the time just to remind me what I'm fighting for!

Dr. Carson was already on my radar yesterday, because that's one of the 1st things I did was research peadtric neurosurgeons and he came us as being the
best. So we sat down last night as a family and watched the movie about the
story of his life. But thanks so much for posting all his information.

To the young lady who commented about me always seeming so positive in my posts to others. Thank you, I never want to put off what I'm going through onto others. I try to stay upbeat and positive because you simply never know what others are dealing with in their everyday life. I try to talk to and treat others the way I would like to be treated.

Again thank you all for your kindness!

[Samuelsmommie]

Wanted to show everyone who they are praying for...
Samuel aka Sam aka Sammie...

Thank you again everyone.

[MikaTallulah]

Originally Posted by Yorkiemom1

I have NO personal experience in what you are enduring with your son....my heart breaks for you, as a mother with a special needs son myself. I can clearly understand your anguish, as any other mother can. I DO have personal experience with the power of prayer, and have been touched directly by Him, which makes my belief in the power of prayer, absolutely undeniable and unshakable. So I KNOW I can do that for you, pray.....and I know He is listening to all our prayers for this small child of His. The only other thing I can do, as a professional in a speciality field of medicine (cardio-vascular, and transplants) I am well aware of the absolute need for a SPECIALIST in ANY complex diagnosis a patient has. I am NOT a pediatric nurse and have NO experience with pediatric neurosurgry or the doctors that specialize in this area of medicine. But it is imperiative you find the BEST such surgeon for the best outcome onyour son. I think that is information you can garner thru association with MULTIPLE Chiari support groups, which will lead you to names and hospitals that have the best treatment outcomes for this condition. To enable you to take the time required to thoroughly and completely investigate who would be best suited to treat your baby, I agree with Mike Tallulah.....I would go ahead and have a PEG tube inserted. THAT alone will take a TON of concern and worry off the table for you....if you need it, it is there. If you dont need it, no big deal, dont use it....BUT YOU WILL BE FREE FROM THAT CONSTANT TERROR THAT YOUR SON IS NOT GETTING NOURISHMENT REQUIRED TO KEEP HIM PHYSICALLY "TUNED UP" AND IN CONDITION TO BEST TOLERATE ANY SURGERY HE MAY NEED......or even to survive! My heart goes out to you sweetie, and I will go to my knees for your son, as I have done for others here in great physical crisis. Have faith Tracy that our prayers ARE being heard, and He WILL intervene You remind Him, He promises us if we call out to Him, he will listen...you make it clear you ARE calling on Him to honor His promise, and you are asking for His guidance and direction on WHERE you need to be going to get the best help for your son! He WILL take it up for you and orchestrate this whole thing for you! God bless you and your son!

Originally Posted by Samuelsmommie

Wanted to show everyone who they are praying for...
Samuel aka Sam aka Sammie...

Thank you again everyone.

He is beautiful as are you. I hold Dr. Carlson can help him. Praying for you both.

[EarthAngel]

Tracy, I just saw your post now and I am keeping dear Samuel, you and your family in my prayers. He is such a handsome little boy and what a smile! May God answer our prayers for Samuel.

[Patti]

Samuel and your family will be in my daily prayers.

[Little mama]

Once again all of you have moved me to tears. I'm am so sorry your precious little boy is ill. I am praying for your family.

Janet

[JasmineNoelle]

Praying for your child, your family and you.

[Micah my love]

I will be praying for Sammy and you...our dearest friend ever JC will handle this for you..Hugs to all of your family

[LILBIT1]

Oh Tracy Im so sorry. How very scary. Make sure you get another opinion or two. I saw someone say its a malformation of the skull. I googled it... this is what I found.
What are Chiari malformations?



Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation.