Last week we went to visit the neurologist again. She no longer thinks that Doodlebug is a late bloomer. He's just too far behind and not catching up like he should be. He's 17 months old and still not able to feed himself. He does not call me "Mama" or his daddy "Dada" yet. He still is barely able to chew food. He is walking, but hasn't gotten really good at it yet. These are milestones he should have passed long ago. It breaks my heart to see him falling behind.
Anyway, since he's not catching up like we had hoped the neuro wants to start doing more testing to see if we can find a cause for his delays. Previously she ordered some bloodwork to test for metabolic and genetic disorders. We chose not to have them done at this time. We are still holding onto him being a late bloomer, and if there is a diagnosis it won't change what we are doing to get him therapy and try to catch up. He doesn't have unusual health problems that would lead us to think there is more going on and we just don't see the point of spending thousands of dollars to rule out disorders no one really thinks he has.
So now we are setting up and MRI. We go to get some basic bloodwork done tomorrow and hopefully the MRI will be done in the next month. I really don't want to have this done either. He will have to be put under and I hate for him to go through all of this. And anything the MRI could tell us is stuff I don't want to know. She is looking for brain damage, brain malformation and evidence of a stroke, just to name a few horrifying scenarios. And if all is well there, we are going to be sent off to the geneticist. Who knows what all that will entail.
This is taking it's toll on the potential adoption as well. The neuro wants us to find out what is going on with Doodlebug before proceeding with the adoption. What exactly is she expecting to diagnose him with? And really, what does it matter? We want to have another child. That won't change even if Doodlebug has lasting issues.
I am sure the MRI will cost a significant amount, even with insurance. Insurance only covers a portion and when Doodlebug had ear tubes put in and his endoscopy done we paid quite a bit of money out of pocket. That money will end up coming out of the adoption fund. And if the MRI is normal I'm sure we will have to pursue the bloodwork for the genetic and metabolic disorders. I know the tests are very expensive and we will again have to pay a portion.
Please don't misunderstand. I am grateful that we have the funds to pay for this. I am grateful we have insurance. I do not begrudge my son this money if he needs it to have medical tests done. It's just frustrating to know how far away we are from our goal of raising money for the adoption and realizing that this will only push us further away from that goal. It seems so unattainable right now.
So far in June I have raised a whopping $35. We have a looooonnnng way to go to reach our goal, and it will be even further if we need to dip into the funds we do have to pay medical bills.
I really don't want to leave this post on such a low note, so let me tell you a little bit more about my wonderful boy. He is my favorite baby in the whole world. If I could clone him I would do it in a New York minute.
He is so laid back and good natured it is unbelievable. When we were in Downtown Disney we decided to go into some of the gift shops. I could hand him a toy to look at and play with for a minute and then take it back from him and he never made a fuss. Not once. What kid does that?
He's started giving kissed on request. Of course I request them at least twenty time a day. He's almost always happy to oblige.
He has the best laugh. And he uses it often.
When we pick him up in the nursery at church and all the other kids are screaming he is the only one with a smile on his face. And his smile gets even bigger when he sees us.
He makes really funny faces.
He loves to read books. Dr. Suess and Sandra Boynton are his favorites. He will sit and look at books for almost an hour by himself.
And last, but not least, he is the personification of cuteness.
Monday, June 28, 2010
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Thanks for the update. I am glad to keep up with what's going on so I know how to pray. I can't even imagine how difficult this must be for you all--all the unknowns and a huge desire to pursue adoption. But we know that God has plans to prosper you and not to harm you... to give you hope and a bright future. And who knows how he is going to answer your prayers in a way that totally blows your mind! I believe he can do that--both in healing Doodlebug and in bringing another child into your lives.
ReplyDeleteFor now, know that we love you and have you in our hearts and prayers.