Sweet little boy. This was the night before his haircut.  His hair has grown so much!  Granted it has been 6 months since they shaved it off...

I was very proud of myself.  I successfully gave a very wiggly little boy his second "first" hair cut!

My handsome little guy.

I am so proud of him. A certain little boy has learned to unpin his right arm. Proud to tears. 

 This is HUGE!!!!!!  That movement looks so slight, but it is HUGE!!!!! The fact that he can move his right arm at all, that he knows he should and is trying, (over and over) the rotation from his shoulder and that he even gets his wrist out.  This comes after months of work and we hope is just the beginning.  :)

Thank you for all of your prayers.  We are working so hard to awaken that right side so it does not fall too far behind.

One of the therapists asked me this week if Parker has cried with tears because he had been sad or upset. He has always cried very little since he was a newborn, and he cries even less now. He would only cry if he was hurt or thirsty. (He was passionate about his water). Now he won't drink... but if I hear crying, I go RUNNING because he is either in pain or throwing up.

It made me think today as I was playing with him how grateful I am. Even though the emotion section of his brain was probably injured, he is happy. He laughs. He gets that twinkle in his eye. He recognizes that "I'm going to get you" is a game. He anticipates me and giggles before I even get to him. I found that remarkable this morning. What a blessing.

Remember when I said that 3 doctors told us Parker may never talk again? He began babbling and saying some words in the hospital when he had 6 hours of speech a week, but he had really regressed since being home. This was a new sound this morning and it made my heart soar!

A few things happened this week that took my breath away and I want to record. On Friday I was working with Parker on rolling. He rolled almost a full 360 on his own. He is getting so close!

The next was a few days later. Again we were working on rolling. He is getting really good at getting his left arm out when it is pinned under him. It is amazing the coordination it takes to lift or roll your body up a bit to get your arm unpinned and then to lift your arm out and up. This week was the very first time I saw him start to unpin his RIGHT arm!!! He did not get his hand out all the way, but he unpinned his arm!!! It was momentous. Trust me!

The last was today in therapy. He was working on walking in a Gate Trainer. It is this really cool walker with lots of support. We are working on getting one for home but the process takes several months. Anyway, today he was walking with a very smooth right left right left motion. His therapist was so excited and said if she could put smiley faces in his chart she would. She said it is huge because it shows that his right and left brain are communicating through the corpus callosum- the brain matter through which interhemispheric communication happens. She said it shows that neurons are firing on the left side of his brain and that the right brain is recognizing that and communicating. That is HUGE!!!!!

My sister had the suggestion to hire a mother's helper and that was the best idea ever!!! It has helped so much with stress and worry just knowing I will have help a few hours a week. I am really grateful for her. :) I am also so grateful for all the help we have received from my parents, in laws, neighbors and church members. My mom just left this morning. This whole experience has been such a positive one in huge part because we have had soooooo much help, love and support. Thank you. Thank you.

I am really encouraged by Parker's progress. This week he seems to be making some new strides and it is exciting. He is starting to laugh and smile more, he is learning to roll, he is putting weight on his right arm regularly, his right wrist is not bending forward as much, he is interested in the world around him, he is not drooling nearly as much, the new tone medication is helping so much...

There is so much to be grateful for. And it really helps that my house is clean at the moment, dinner is leftovers and the kids are happily playing with each other. Life is good.

My husband rocks. And I am sooooooo relieved.

Neurosurgery asked for a repeat CT scan for the bone flap because the CT scan we took was not a high enough resolution.  We SPECIFIALLY did a CT while he was under anesthesia for the g tube for this exact purpose.  I followed up to make sure they were looking at the correct date since they did a 2nd quick CT the day before we left (to figure out that weird thing going on- Parker is just impatient and trying to grow his own bone.  No biggie.)

Anyway, we followed up and they said we still needed to do a high resolution scan.  This just did not feel right- so my sweet husband followed up with Neurosurgery again and explained a whole lot more... and it turns out Radiology DID do the correct scan, it was just not at full resolution in the shared system.  Radiology has all the correct data. I am SOOOOO relieved. I didn't realize how bad I did not want him to have to fast, be sedated and come out of anesthesia again, or have all that radiation until I found out I could cancel the appointment today.

This little boy just rocked his OT/PT therapy sessions.  He is such a good little boy.  He is so good natured and puts up with so much.  They put him in a sling type thing on a treadmill and he practiced walking for almost 10 minutes before fussing!  She said some kids won't even do two minutes. In OT they worked on different kinds of splints for his right hand, weight bearing on his right, side sitting, chewing with a toy on both sides of his mouth and so much more.  He also had a glorious time rolling down an inclined mat in PT over and over and was getting pretty good by the end.  You could tell he was proud of himself.  He works and tries so hard!   I sure love this little guy.

This first picture is right after we got in the car and he was soooooo tired.  Poor kid. :)

He was pretty tuckered at the end, but so smiley.

What a sweet angelic little boy.  I love this little guy so much.

  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. :)

 

 

I wonder how many posts I have started out with "Parker is doing well."  He is doing well.  I am grateful every day that we got to keep our little boy.

He continues to progress in some areas and regress in others- a good solid ebb and flow with progress and steps in the right direction.  Earlier this week when I put his bib on it pinned his left hand in the high chair and I thought, perfect!  I put a spoon in his right hand and helped him to eat yogurt.  He kept a hold of the spoon, turned his head to the right and did a good job!