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Tuesday, April 19, 2011

a busy, busy 6 weeks old!

Joey is 6 weeks old today!!  YEA!!  

We have had a busy week and its ONLY Tuesday and we still have more places to go yet this week.

Monday- he had a well visit with the pediatrician.  With a diaper, bandages and a onesie he is 7 pounds 13oz!!!  Up from 7 pounds 2 weeks ago.  So he seems to be getting enough formula through the g-tube.   Apparently kids who are g-tube feed ONLY are slow to gain weight since we can't tell when its time to feed him more ounces per feeding and he can't tell us yet that he is still hungry.  She is also concerned about his natal teeth.  They are REALLY loose and she wants them out like yesterday, but because of his skin she doesn't want to be the one to remove them.   *sigh*  so on the way home I called the dentist to see if they deal with natal teeth.  They do (yea!) and had only one appointment for the month, today (Tuesday) YEA! 

So this morning we took Summer to school, came back here for a bit and then went to the dentist.  The dentist checked them and agreed they need to come out and Joey also has something along his top gum that I was worried was an infected blister or something, nope, its another tooth, a pointy (canine?) tooth coming out the side of his gum.  Nope that is NOT normal.  Its called a neonatal tooth and occurs in about 1 out of every 3,000 babies (yet another rare abnormality)  He will need x-rays to determine that type of tooth it is, if it has roots, etc... and it might need to be removed as well.  However, the dentist isn't sure about doing all this in the office since has EB and has a history of aspirating and thinks it would be better to be done in the hospital, but Joey would have to be intubated for the procedure.  I said i'd would to try it in the office first and if they doesn't work, then the hospital is fine.  The dentist was fine with that and wants them out soon, however (you saw that coming didn't you?) they don't have a 2 hour block available for the procedure till May 19!  WTH??  They want me to check with the ENT to see what he thinks and if he feels it needs to be done sooner, the dentist will reschedule other patients to fit Joey in sooner. 

So we go home and I call the ENT's office.  They said they'd have him call me back; we play phone tag for the afternoon and finally get a chance to talk with him. He said NO hospital, NO intubation and it needs to be done ASAP and when we will come to Joey's appointment on Friday he will look at the teeth and if he feels he can safe pull them himself, he will!  YEA!!  We finally have someone WILLING to do what needs to be done!

Also this afternoon he had his in-home evaluation for his feeding therapy.   All she did was take down his info, ask a bunch of questions and explain to be about their services.  We will go to the main center in the next week or two for developmental evaluation and HOPEFULLY get therapy set up.  But he has a follow up swallow study next week so we will hopefully find out then if he really needs therapy or if the issue resolved itself.

That is it for now!  Here are a couple of more pictures:

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