looks like I will be staying home with ds... — The Bump
Special Needs

looks like I will be staying home with ds...

After 16 years of dedicated employment (part time since pregnancy), the small family owned business has sold and I will be out of  a job next week.  I was paid remarkably well, but I earned it :)

So, our special needs situation is this.  My 1 yr old ds has severe food allergies.  Milk, soy, beef, pork, all confirmed.  Also has very severe reactions to corn, corn syrups, peaches, legume family (green beans, peas), rice... you get the idea.  Because of these crazy allergies, he has very limited foods he can actually eat.  He mostly gets his nutrition from Neocate Jr. at this time.  He has lots of problems because of these food allergies... c-diff, candida overgrowth, leaky gut, some internal bleeding and lacerations, possibly EE (an esophogeous disorder).  Leaving him with anyone becomes quite a challenge because 1 goldfish cracker has about an 8 day repercussion period ... ripped skin in the groin, bleeding, purple anus, chuncks of skin pulling of his bum and rectal area, butt crack literally ripping up his back.  You get the picture... not pretty, but not anaphallactic at this point !(thank you god!)  Most people just don't "get-it" and think I am overreacting most of the time.

 

My husband and I strongly believe that there is more to come with him and that the next two years are going to be quite challenging.  We're not sure why we feel this way, but both of us have been feeling a certain "dreading" in our spirit when it came to our son and his medical needs.  I've been feeling called to stay home, but there is no way we ever thought we could afford it.  Now, the employment door has been closed and we are going to step out in our faith and believe God to take care of things.  It's so strange...I so strongly feel that the next two years are going to be so hard for us, but by the age of 6, ds will be fine.  I don't know why I believe this, but I just feel it in my soul!  KWIM?

 

So, now that I am let go from my job, it really isn't going to pay me much to go work somewhere else.  DS is a police officer, so has a very erratic schedule.  And, like I stated before, childcare is so hard with my son...  I think I am going to look at taking a child into my home to watch for a little added income.

 

Thanks for letting me vent and type it all out.  If you made it this far, thank you.   Any words of advice for staying home and helping support your spouse so he doesn't feel so overwhelmed by it all??? 

 

 

Re: looks like I will be staying home with ds...

  • I'm still  not sure if I belong here or not, but DS has gastroparesis along with severe reflux and a milk/soy allergy (we're not sure about other foods yet, but we suspect he may have other allergies).  We tried daycare, but because of his gastroparesis if he's not fed on demand he pukes large amounts and has turned blue before because of this. Despite all of our letters from the GI and talking to them the daycare still tried to feed him every three hours and it was horrible - he was puking constantly and because of that started to refuse bottles even when he was hungry and was diagnosed with failure to thrive because of malnourishment.  In the end we decided that it was better for me to stay home with him so that he is given the care that he needs and we don't have to worry about the daycare feeding him and causing a major choking episode.  Good luck!
  • If you can find a job working from home that may be able to help supplement income. Yet with today's job market that is nearly impossible. When Cash was diagnosised we both knew that I would have to stay home. We couldn't put his life and vent needs in the hands of someone else. This meant that we too felt like the first years were going to be bad and he would be better by 5 or 6 like you stated. I don't know what made me think this way either but I did and do.

    Cash needs round the clock care. Some days are better than others, but even on a good day he can hold his breath while pooping or crying and turn blue and possibly pass out. He is attached to me or in the same room as me all day. With Cash we were able to receive SSI which helps a small bit. Our electrical cost sky rocketed once he came home on the ventilator. I try and have the home cleaned, the boys cleaned and happy and dinner ready once he gets home. Plus many nights I just join him and listen to him vent, or we sit in silence. Its our time and these small things have made a good transition. I am not going to lie, money is way tight and there are times we have had to ask for help, but we manage. I search all the grocery ads and use coupons on everything. We no longer eat out and have begun to cloth diaper to help cut back.

    It sounds like in your heart and mind you know what you need to do for your family. It can be a lonely world staying home, but it is so worth it. It's a great job! Good Luck!

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  • image axh2277:
    I'm still  not sure if I belong here or not,

    Of course you belong, you don't have to have a special diagnosis to be here on the board. Welcome!

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