This week was a relatively quiet week, not many changes or things to report. Morgan still thinks it is her birthday and loves it, Grace is still being Grace one day she is perfect and the next it seems like I can't please the child, and we found an apartment!
Yes we will be moving, we don't know when exactly but it will be within a week or two. With the help of Jason's sister we found the best apartment for us at the time. A two bedroom basement apartment at $575 a month, it includes utilities, and has brand new carpet and newly painted walls. And perhaps the best thing about it, only two-four minutes from Jason's parents' house. This apartment literally fell into our laps and we are so fortunate that it did!! Thanks Michelle!
Grace's cough and gag has improved, I think we figured out the culprit--the Elecare formula. I realize that this formula is hypoallergenic and thus shouldn't cause an allergic reaction, but sure seems that way. Maybe it is the vanilla flavoring??? I stopped giving it to her for a week, her cough improved, then I tried doing one feed with breast milk fortified with the elecare and within a couple hours the cough and gag returned and she was miserable. I'm wondering if it might be the artificial flavoring since she is drinking elecare vanilla, because I can't remember if she had such a strong cough while in the PICU. I don't think so, but if we have any of Grace's nurses reading if they remember and want to share their recollections its much appreciated. I know she has always had a cough, but this cough was a painful one that produced a lot of gagging and would wake her up crying. Now her cough, though rather strong isn't nearly as frequent and doesn't seem to wake her up.
We are weaning the methadone again, Gracie is now on the smallest dose and technically I'm suppose to stop giving it to her tomorrow, but I think I'm just going to wait a couple more days--she already is showing signs of having a hard time adapting to the smaller dose. She is more sweaty and is more restless, she was awake for almost 5 hours straight without even dosing, it was only after a dose of methadone and her swing that she allowed herself to sleep---looks like I'll be spending the night in the living room with her.
I took Gracie to the Ear, Nose, and Throat doctor, he put her on an antibiotic. Basically we can't determine what is causing her hearing loss until the fluid in her ear is taken care of. We're hoping that the antibiotic will clear it up, but if not we'll have to consider surgery to put tubes in....I wish we didn't have additional complications.
But we are doing ok, hanging in and continually adjusting. Thankfully I have wonderful friends and family that will take Morgan for me or come and take care of Grace so i can sleep and get some extra rest. It seems like every three days everything catches up to me and I'm ready to crash, but it is all worth it to have our little Grace with us.