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mrs.scheid's TTC Journal

View All My Journal Entries UGH!!!
By mrs.scheid » Posted Jun. 14, 2012 10:37am - 23 views - 2 comments

I'm very emotional and moody today. My son is 2 and is still not speaking. He's been seeing a speech therapist for 2 months and finally we have figured out that his adenoids are too large and need to be removed because they are blocking his airway, forcing him to breathe through his mouth, making speech all the more difficult. He tests at 36 and 45 months on every other skill. He just can't speak. We knew this would be a problem...just didn't know how much of a problem it would be. I had a very rough pregnancy, was on bedrest for 6 months, and when Blaze was born he had to be on oxygen for a while. He couldn't suck either. The poor guy didn't eat for 4 days. Finally his sucking reflex kicked in and his tongue muscles matured and he was able to eat. He crawled, walked, and run early...but never spoke. He's been in and out of the hospital for most of his 26 months of life. He almost left us last October after a bout with Listeria and CMV. I watch him slowly get more sick, his fever climb to 105, I heard his screams as they did a spinal tap, watched his poor, frail body as they tried 8 times to get an IV in his dehydrated veins. So when the doctor said yesterday that he needs surgery again, my heart stopped. It was so difficult watching him be in so much pain the past few times he was in the hospital, I don't know if I have the strength to see him go through something else.

I woke up this morning determined to find someone to help my boy. I've called 32 (32!!!!) doctors across the state trying to find someone who takes his insurance and can also see him and perform the surgery before his insurance terms July 31st. All I seem to be getting is a downpour of "NO!" and judgement from the receptionist because my son is on CHIP at the moment. They don't take the time to understand that 1. chip isn't a bad thing. only the people who take advantage of the system make it a bad thing. & 2. he's only on CHIP because my ex-husband (his father) was extremely abusive and after I left him, I was also left with all the bills, working full-time, taking care of a sick baby, and paying for the secrets that I found out month by month after he and I divorced. I had no money to add him to my insurance. I paid for a divorce and had been back and forth to the courthouse trying to get restraining orders against this demon of a man. I turned to the state for help because I couldn't get him insurance on my own. Now that I'm on my feet and can afford the extra bill, I have taken him off the CHIP and he starts on my insurance in October. But October is 4 months away. He'll be 2 and a half by then. The surgery can't wait that long. His voice can't wait that long. He gets so frustrated because he can't speak...he wants to SO badly. But the receptionists don't care to hear those things. They just say "NO!" and hang up the phone, leaving me with tears in my eyes and a toddler in my arms who doesn't understand why Mommy is crying.

Is it life-threatening? Not in the normal sense, no. Is it life-altering? Yes! If he doesn't learn to use his tongue and breathe through his nose by the time he's 3, who knows if he'll get to start kindergarten with the other kids his age. Besides the fact that people are mean and judge him based on his inability to speak. They don't recognize the other amazing talents this handsome, smart little boy possess.

I just wish someone would give him a chance.

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Comments for this Journal Entry

Comment from gbevin » Posted Jun. 15, 2012 9:58am
I am praying for you on ALL fronts. Take it one day at a time and keep that hope alive. I'm sure your son is beautiful and I'm sure you tell him that all the time. You are his rock. Try not to be discouraged by new challenges but uplifted by those challenges that I read you have overcome!
I pray that you find that Dr. very very soon.
Comment from indian_2012 » Posted Jun. 14, 2012 1:18pm
May god give you lots of courage to deal with this ...and I am sure your baby will be fine..its all a matter of time! I can understand your pain ...will surely pray for you...Best of luck for this journey!!

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