Wednesday adventures

Well…. maybe sometime soon we will sleep through the night.  She ended up vomiting in the night and needed to be cleaned up and we had to stop the pump so she did not get a full feeding :(  To put into perspective, before surgery she was being fed 280ml (a little over 9 ounces) over about a five minute period, four times a day.  Right now we are feeding her less than two ounces over an hour period for 20 hours straight.  Crazy.  It is what it is though and I’m hoping with time it will improve.

She seems to be doing much better with the new catheters they have us trying and the lidocaine numbing med for placing the catheter that stays in overnight.  I need to give them a call and let them know that and see what we need to do next to see if insurance will cover those.  They are fancier but hopefully since we were having trouble with the regular ones we can prove a case for coverage of these new ones.  We only have enough left for another day or so.

Many adventures today.  We had an appointment with her pediatrician to go over all her new “bells and whistles” as she calls them :) .  We were actually ready early so we stopped by her therapy center to visit.  Our therapists are like family to us.  We spend nine hours a week there between Laila and RJ so not being there for this many weeks meant we were really missing them.  I love having them as a resource for us and I’m always so thankful for the way they love on our kiddos and treat them like their own.

I’m so thankful for our pediatrician as well.  She was so sweet today hugging and loving on Laila and telling her she makes her a better doctor by teaching her all these new things.  She also helped me come to a tough conclusion today…..

Laila will not return to school this year.  I barely know how to care for her at this point so I have no idea how to tell them to.  Things are changing day by day and though she LOVES school, we just don’t think she is well enough to go back right now.  Next week brings three more days in Indy including a surgery to remove the stent in her urethra and we added in a surgery at the same time for some trouble she has had with her eye for the last 8-9 months.  Figured we’d knock that out too while she is already under anesthesia.  These should be outpatient…. should.

So today I met for our annual case conference and got to sit around a table full of people who love on and care for Laila and tell them they don’t get her back.  I love taking the first few minutes of the meeting with them and praying over each of them.  I’m thankful for each of them and I have been SO thankful for the love and support the school has shown her through all of this.  Like super thankful, like blown away thankful.  I popped in and said a hello to a couple of the other special kiddos in her class and the other teachers.  Two days a week I normally bring Laila to school after therapy so I get to see these kiddos when I drop her off.  What a precious bunch!Her main teacher will be visiting her at home once a week for some one on one teaching and then we will try to do some other activities on google classroom but the rest will be up to me.  My plan is to try to bring her into the classroom (special and gen ed) 1-2 times a week for her to see her peers for an hour or so if she is feeling up to it.

Laila on my own….. yikes!  I’m trying to come up with a plan to take care of myself as well.  Caring for her can be exhausting and with having three other kids and play practice and baseball and therapy and doctor appointments so on and so on…. I’ve gotta come up with a plan.  I can tell you I have never asked for help so much in my life.  It’s just not what I do but I have had no choice through this.  Well played God, well played.  So again having Laila constantly and having her so much more complicated means things like simple grocery shopping will be tough.  But I know I can do it or I can ask for help.  I remember the first few years not thinking I could push a cart and a wheelchair but I eventually  mastered that.  I look pretty funny doing it like I’m doing some crazy dance move with one hand out front pushing the wheelchair and one hand behind me pull the cart but I get it done.  I’ll figure this out too.  I’ve already sat down with our nurse to put some more hours on the calendar.  I don’t want to wait until I’m at my wits end before I ask for help.  Been there, done that, not pretty!

Since the nurse came today to sit with her while I went to the meeting, I was able to pick the boys up from school afterward (Emma had play practice) and since I’ve been gone they have had a Wednesday Dairy Queen date with my friend so we carried on the tradition.  It was fun to sit and listen to their day and share some ice cream.  Man I’ve missed them!  It’s crazy the little things but I LOVE driving my kids to and from school.  I LOVE that we have a certain spot on the way to school where we all pray every day.  I LOVE being the one to pick them up and be the first to hear how their day was.  I love them.

Well my bed is calling my name.  For how many hours or minutes… who knows but I’m gonna take what I can get and move on to another day.

Matthew 5

The Beatitudes

He said: