I am the mother of the most amazing little boy. I am blessed to have a wonderful husband and to be able to be a stay at home mother. Everyone says that the first year is hard but unless you have gone through what we have, you have no idea, and I know that its not even as bad as some mothers that I have met.
So my son is 15 months old. For the last 11 months we have been running tests to figure out what is wrong with him. To date he cannot hold his head up, sit up, track objects with his eyes, reach for things….. most things that a child his age would have been doing …. 11 months ago.
So we have a few doctors we go to . We have Genetics, Neurology, Pedi Eye Dr , a Delayed Development Specialist, Physical Therapy, Occupational Therapy and of course his regular Pediatrician. He also attends a early intervention school for children with disabilities and behavioral issues.
Okay so Monster was a planned child, I wasn’t drinking, I was already taking prenatal vitamins, I went to the Dr to get an all around check up with blood work and exam . We were ready. Thankfully we got pregnant right away.
So at 13 weeks I went to my appointment for my scan to see if everything was good, they took all the measurements and everything looked fine it was the “text book perfect pregnancy”, oh yea and we were having a BOY.
fast forward to the birth. Everything was going wonderful. No signs of anything. All the scans showed our healthy little man. So was induced because this little monster was very comfy. He was perfect, he broke is collar bone coming out and everyone in the room heard the snap. But you couldn’t even tell that anything was wrong, he still moved his arms around and wiggled all over.
So after the healing of the collar bone everything started to kinda show face. He still wasn’t holding his head up and he wasn’t making eye contact and reaching for toys.
So let me just say that when you are pregnant and everything is showing a wonderful and healthy growing baby, you never think that anything could be wrong. You have no way to prepare for anything, and you surely don’t ever think that you will end up with a child with any problem, big or small.
So here comes the referrals to the big Dr’s and physical therapy. Oh yea and they tell me my sons brain might not be growing, his head is too small.
JESUS FUCKING CHRIST are you seriously going to tell a mother that about her 3-4 month old?
CT scan and xrays here we come! oh yea everything is fine :-) wonderful. thanks for scaring the shit out of me.
So out first pedi was horrific. she flat out told me that ” babies don’t just do things on their own you do actually have to do things with them not just lay them there.” I HATED her.
So genetics has done 2 MRIs and more blood work than I have ever had done in my life. Currently there is a huge test out to test for a ton of things, and its like the last blood test she can think to run, so if it comes back normal 2 urine test and she is at the end. He has been diagnosed with Hypotonia , floppy baby syndrome, basically low muscle tone.
Neuro hasn’t done shit. they saw him 8 months ago and nothing….
Eye Dr says that his eyes are fine he should be able to see things more in the next few months.
P.T. and O.T. work with him weekly and are seeing slow improvements, but improvements and something.
He started school when he was 11 months and he loves it, 2 days a week 2 hours a day. They are wonderful, art projects, field trips, music time, and they also have P.T. and O.T. there along with an O.T. that works with eating therapy. When he was evaluated he was at the level of a 3 month old, he was 11 months.
During this whole process we have found true friends. The 2 people closest to my husband and me have completely stopping coming around and talking to us. My best friend was the maid of honor at my wedding and my husbands was his, well kinda supposed to be, but wasn’t sure is he was going to make it because of work, and his work isn’t like most, so it wasn’t just OH I NEED THIS DAY OFF AND BOOM ! DONE!
These 2 people were family to us, and we would have done, and probably still would, do anything to help them. We always had before a child so why not after? But where were they when we needed someone? No where to be found and being selfish.