long time no update

We have been very busy and stressed out here. Andrew’s therapies are moving along. We are seeing many improvements. He is starting to vocalize more than growling. We got him to repeat the “E” sound. In P/T he is doing really well also. He is really trying to walk on his own. He loves to push his walker toy around all over the house. He loves to try and walk back and forth to Travis and I. He loves it.


I took Andrew to the doctors on Monday because I had a theory and it proved right. He is tongue tied. She said he is 2/3’s tied and refereed us to a ENT to see if he needs to get it clipped. Wish us luck on that.


He goes in for his spinal MRI on Monday. They are checking for a tethered spinal cord or any other neural tube defects. Keep him in your thoughts Monday


Now on to our stress.




The insurance company has denied everything we have submitted since September. All his food, all his specialist, the MRI. $14,000 worth of bill have been slowly making their way to our mail box. The sort of good news is that it should just all have to be re-billed with a different diagnosis code and be paid.


Another insurance cripe is they are denying his food. We got the ok to change from infant formula to the next step which is Jr. They are in the process of authorizing it and said it could take up to 30 days. So in the mean time we had to pay $300 for 5 cases of food that will only last about 5 weeks. GULP. Pray the authorize it. The main thing for them is they say it is not medically necessary for him. But it is. He can’t eat anything over stage 2 and a few stage 3 baby food. No table foods. He can’t swallow chunky foods.


The brace place FORGOT to order his brace. I called them on the Monday before our appointment to make sure everything was ok with the insurance and they said yes we will see you on Wednesday. I arrive early wait 20 minutes for our appointment and then they call me back and tell me they don’t have anything for me. I was PISSED!! The rushed the brace and we should have it by tomorrow.


His neurologist ordered the blood test that is one drop and it tell up to 1500 genetic disorders. Well the lab called and said they do not bill insurance and I need to pay them $2000 if I want the test done. I called their office and they are looking into finding a new lab.


And the icing on the cake. I called to confirm his genetics appointment and make sure the CLS test result was in. I left a message with the assistant and she called me back a few hours later and informed me that the lab in fact did loose the test. I was so pissed off. We have to have another blood draw and it will take up to another 16 weeks. I haven’t even gave CLS a second thought in MONTHS and now it is back on the table. On good thing is they can do the same test that his neurologist ordered for free for us. So she was going to call the office and see if she can do it and share results.




So you can see why I have neglected this blog. I am sorry and hope to update it more frequently