Special Needs

Brief Intro and Hello


I've lurked here for a bit and decided to say hello. DS1 was born in May 2011. At about 4 months, we started to notice gross motor delay. After fighting with several docs to get tested for delays, we finally were able to start PT at 1y (since he wasn't able to get up from lying down at that point). Since there, with therapy, we are able to cruise along furniture and hoping to walk by 2 years.

Dx is Benign Congenital Hypotonia (as of right now). No underlying cause, as we did the full work up in August with no genetic/congenital/metabolic issues. We also have a communication delay, however that is apparently related to the hypotonia.

Needless to say, it's been hard, especially since many parents don't want to play with our son because of his issue- outrageous, especially considering these are medical professionals who should know better.

We have finally obtained approval for a Spiyo suit and I am very grateful for any advice/insights anyone may have who've faced physical delays. We are in monitor mode to see if there's any regression, but we are just grateful to have a happy, otherwise healthy son.  We are hoping for DC#2 in July and I am a bit nervous about if we may re-face this challenge again. 

thank you for your time... and strength.  

Re: Brief Intro and Hello

  • Hi! I think our LOs stories are pretty similiar minus the communication delay. We still don't have a dx.

    I just wanted to tell you that there can so much improvement physically with therapy! I felt most stressed when my DS was young 1 to 3yrs. I wanted desperately to know what the future would hold. Would he walk? When? How would his delays impact him? Etc etc. I made myself crazy to be honest searching for a dx ... Stay away from Google lol. It was hard to be patient to say the least!

    Now my DS is still delayed but has made so many improvements. We're hopeful that as he grows the gap will get smaller.

    So no advice other than hang in there and know that you're doing all the right things. We had our DD during the middle of working DS up for services....I remember having OT in our house while I nursed my DD. it became our normal. She is totally typical btw and I had the same concerns as you re: having a second child.

    Be hopeful!
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