Need

Spencer no longer has oxygen equipment in the house.  It has been a long time coming, but his apnea is no longer clinically significant.  I balled my eyes out after I hung up the phone.  They came to pick up the oxygen equipment a couple weeks ago.  I've never been so happy to see something go.

Spencer is still doing awesome eating.  He is eating the majority of his meals though out the day.  He's also improving significantly with a new sippy cup.  We've been giving him a bit of pediasure.  I was super hesitant, but if he were typical and still struggling with weight gain, that's what we would end up giving him.  I have this weird no pediasure through the tube thing going on though.  We are still doing a blended diet for his feeds through his tube.  We have accomplished our goal of getting rid of at least one tube feed so he doesn't have to use his tube at school.  He will still need a water bolus, but I don't have to send blend with him.  He's really doing amazing.  There is this light at the end of the tunnel now.  Thinking of Spencer without a feeding tube scares, yet excites me.

His Michelle P waiver was finalized!  I'm getting paid 13.50 an hour to be his minion.  I'm quitting my job at Lowe's.  It was time, as Spencer needs me more (and Quinn will only be getting bigger), and if I kept working we would lose his SSI completely.  It's our backup plan in case we un-expectantly lost his waiver.  We also get 4.75 hours of respite a week.  I'm looking forward to getting to spend the weekends with our family.  With our nieces and nephews going back to school I won't get to see them during the week as much.  Plus my kids can go do stuff that usually only takes place on the weekend, like fairs and such.

Spencer is finishing up his paperwork for preschool.  He starts on September 3rd.  I'm a nervous wreck.  I have this fear that he's going to be on the bus and there will be a sub bus driver and aide and they won't know who he is and he can't tell them.  His backpack and his wheelchair both have his name on them now.

Quinn's neuro appointment was this morning.  Doc thinks it's nothing, but since her fontanelle is still open, it's easy to do an ultrasound.  It's in the morning.  She also has a touch of torticollis, which we need to do stretches for.  I apparently didn't know that babies have to practice standing up....I thought that was an older infant thing.  Spencer didn't even really try until he was over a year old.  Quinn is already doing it a lot better after we practiced earlier. 

I'm nervous about tomorrow.  I have been through hell and back with Spencer.  I expect testing and results I didn't want to hear with Spencer.  I can handle the unknown with him.  It's what we've done for the past 3 years.  With Quinn though, it's hard.  It was so strange sitting in a doctor's office with kids in wheelchairs and to have Quinn with me rather than Spencer.  I kept thinking, "We don't belong here."  She has been so normal and typical so far.  It would crush my soul if she was diagnosed with something after tomorrow...even if it's something benign.  I so desperately need her to be normal and not to worry as much as I worry with Spencer with her.  I could have handled her being born with special needs.  I can't handle thinking she's a normie and then "bam" she's not.  I need this US to come back clean and perfect tomorrow.