Parker's Promise

  I have been quite delinquent in the update department...  It is hard to know what to update.  Parker is still progressing, but it is not as easily quantifiable as before...

Last week was our first week with his full therapy schedule. He has speech twice a week, PT 3 times and OT twice.  I am also in the process of getting an infant educator set up through Regional Center.  I would love to get speech in home, but I also love his speech therapist at the hospital.  We do therapy as much as possible with him at home.  I do it, my husband does it, and we involve the kids whenever possible.  The girls like the song "I roll the ball to Parker.... He rolls it back to me."  The trick is to balance doing enough therapy and not feeling guilty that we are not doing more...It has been so great having my mom here the last few weeks.  She has helped me make a ton of freezer meals, organize and get our house in order as much as possible.  She even did my mending and just so much more.  Moms are the best and mine is wonderful. I am really going to miss her next week when she goes.  We have been spoiled rotten in the grandparents department throughout this and I am sooooooo grateful.

 We went to the Science Museum yesterday for Devin's birthday and I was sure to get Parker out of the stroller as much as possible and involve him in the play.  Parker busted up laughing when Devin played the pin ball game.  He does not spontaneously laugh very often so it is so delightful when he does.  We figured out that those tubes that suck up plastic balls were perfect for "Pick up, put in, push!"  He really enjoyed that. He was so tired, though, because he never fell asleep for a nap yesterday until 5 minutes before we got home.  Then last night he threw up several times.  Poor kid. I don't think his dinner sat well with him. He is not throwing up nearly as much, but we still have to be so careful.  I made it through four babies just fine without a video monitor, but we bought one within days of being home and it has been invaluable.

I am anxious to get a contraption (fabric sling) from a new friend I met at OT last week to pin his left arm.  His left side has improved so much!  He is getting quite adept at that left hand.  We just need to pin it down and let his right hand have a chance to do some of the work.

We didn't feel like the medicine for his tone was doing a lick of good, so we talked to his doctor about switching to a new one.  We weaned him off and started a new one this week and it really seems to be helping.  It is a tricky balance to relax the tone in the right areas without affecting his strength and weakening other areas.  His trunk support has improved so much. He sits well with support and is getting closer to supporting himself sitting.  He is also so much better at standing with support. We can just hold his hips and he will stand for quite a while. :)

He is definitely more interested in life and wanting to play.  He is still very oral, but does not seem quite as fixated at having something in his mouth at ALL times, just 90% of the time. :)  The new medicine is also supposed to help him not drool as much, which will be so nice.  He did not seem to drool much in the hospital, but they changed a bunch of meds just before discharge and he was SOAKING through multiple shirts and bibs a day, so it is much more reasonable now. He mainly drools when he is chewing on a toy. I have to remind his therapists to keep all body parts far away from his mouth. Even with my constant diligence he bit me HARD 3 times yesterday. Last night he bent down and bit my leg and broke skin through my jeans. Then when I reacted... he laughed.  It is not at all malicious or even on purpose.  It is purely a reaction.  But it still hurts. I put myself to bed shortly after.  It had been an exhausting day and that injustice was the last straw.

I feel like the area he has improved the most the past week is eating.  He had REALLY regressed after the g tube surgery and he is now getting quite good at picking food up with his left hand, putting it in his mouth, chewing and swallowing!

We met with the neurosurgeon last week.  Apparently they did the wrong kind of CT scan so we need to do another CT- which means another sedation, and the surgery should be in about 4-6 weeks. Hopefully.  Please continue to pray that the surgery will go well and there will not be any complications.

There is so much we need to work on.  The trick is to be patient and diligent.  We need to keep hope,  not get discouraged... and pray a lot. :)