hi everyone,

I feel like I have been reading blogs about this condition for months but don't have anyone who I can talk to who understands what we are going through.  I am really looking for support from other moms who are experiencing these challenges.

Our beautiful baby Dex was born a week late (I was induced) and weighed 8 lbs 2 ounces...great apgar score.  I had a wonderful pregnancy and we took him home from the hospital after 24 hours because our then 3 year old couldn't wait for us all to be home together.  I was absolutely over the moon.  We noticed early on that he had laryngomalacia because he made an odd noise when he nursed.  He also did not have a strong latch (I still can barely feel him latch).  I took him to the ENT who said he had some reflux but luckily he outgrew it.  When we went in for his 2 month visit the pediatrician was concerned that his muscle tone seemed low.  His head circumference had also dropped from 15% at one month check up to 8% but her primary concern was his tone.  She said to do more tummy time and we would reevaluate at his 3 month well visit.  Meanwhile, he began smiling and was and has been a total delight of a baby.  At the 3 month well visit she expressed concern again about his tone and his head circumference fell to 6%.  She recommended we see a neurologist and to say I was completely crushed and anxious beyond belief is a total understatement.  A family friend got us into a neurologist 4 days later at one of the best hospitals in NYC.  The neurologist examined him and did a sonogram of his head and xrays.  She didn't see any obvious damage and suggested we start PT and keep a close eye on his progress.  When we went back at 6 months and she was pleased that he had made some progress but pushed for more testing.  His head circumference has consistently stayed between 6%-10% but it is not quite what the dr would expect as he is in the 90% for length and about average for weight (40-50%).  His MRI showed that his brains structure and volume were normal.  We have also done an EEG (also normal).  Last week we met with a geneticist as well who is running a panel of tests and said if those come up inconclusive we could also do more in depth chromosomal testing of his chromosomes verses my husband and I.

Dex is almost 8 months and is getting close to sitting independently although his core is quite weak and he is wobbly.  I would say his head control isn't 100% but is a world of difference from when we started this journey.  He rolls (began to roll a little before 6 months) but prefers to go one way.  He has just started to push up on his arms and is having difficulty pivoting for toys.  He does smile and babble.  He makes great eye contact and is quite engaged in the world.  We have a 4 year old daughter who is quite advanced with no developmental delays.

Recently I am feeling so down about everything.  At times I feel empowered but recently its been tough.  I feel like there is so much wait and see and I keep fearing the worst.  I keep thinking that the small head and low tone must be connected and I feel incredibly sad about the future.  I love him to pieces but am also scared if that makes any sense.  I could really really use some words of encouragement or hope.  I want the best for my son.  I want him to have all the same experiences as my daughter.  I am overcome by fear that I won't be able to get him caught up or that he won't be able to play, and crawl, walk and talk.  Please anything positive you can provide would be so helpful for me.