Break in Routine

We had a few weeks off from PT due to scheduling mishaps and illness. I knew it might be tough returning but I had no idea how hard it would be for Kenneth. We spent most of the 45 minute session trying to bring him out of a tantrum. Jacob thought that the break in routine was too much for him; Kenneth likes his routine.

Finally at the end of the session, we were able to get him to do a few things. I left feeling like we were taken through the ringer. It just goes to show you, we are not the ones in control of these young bodies.

Potty 101

I didn’t think it would be so easy to get results. We have been putting Kenneth, fully clothed, on the toilet to get him accustomed to sitting. Little did I know that the first time we decided to go without clothes, he would have a bowel movement. I was shocked and happy at the same time. Now we have something new to add to our repertoire. Another stage begins.

Mama and Me

MRI Report and Consult

We had our face-to-face meeting with the neurosurgeon today. Grandpa was visiting during the week so we took him along. It was nice to have a third set of ears to hear the news. Again the doctor said there were no significant changes in the MRI since the last one (a year ago). There remains residual fluid around the left lobe that did not drain completely after surgery. Shunting would help drain that but it is not without risks and is a lifelong proposition. The overall consensus was let’s not introduce a shunt since Kenneth is doing well overall and not showing signs of pressure or weakness.

As for Kenneth’s head increase, his chart reflects a proportionate growth rate and he continues to be in the upper percentile. The doctor wants to see him in six months rather than a year, just to monitor the growth. So I walked out of his office breathing a sigh of relief.

Our little boy has come a long way since that week in December 2 years ago.

MRI Report

The doctor called me at 5:00pm today. I had been waiting all day for his call. Thankfully he had good news. He said Kenneth’s MRI “did not change significantly from last year.” Thank God.

He asked a lot of questions about how he was doing and specifically wanted to know about any unusual signs of weakness in the right side of his body. I assured him Kenneth was fine and never showed symptoms of weakness on either side of the body. With that said, we still have a question mark about the increased head size. So we’ll see the doctor on Monday as scheduled.

MRI Follow-up

We went in for Kenneth’s follow-up MRI today. The procedure went fine. His waking from anesthesia was a bit more bumpy. It was the worst I’ve seen him after these scans. He was very upset, angry and didn’t want to sit or lie on the bed in recovery. We really just waited him out until he let us offer him a drink of apple juice. Then later came the warm welcome of goldfish crackers. Every child loves them. After about 45 minutes we were able to persuade him to go to the car and head home.

Thankfully he did not get sick in the car. And he even ate a bit during dinner. I was happy he recovered well.

I am waiting for the doctor’s call on the radiology report. We go in to see him on Monday for a face-to-face consult. Keep us in your prayers.

Speech Evaluation @ 3 years, 4 months

Today was the first day I’ve ever thought, “This boy is going to talk. It is a matter of time.” It’s hard for me to imagine it many days because of the time that has passed. I have prayed and prayed that he would utter his first words—mama, dada, milk—something to tell us he could do it. I’m not going to lie to you, it has been tough these past 2 ½ years. The waiting and never having any verbal feedback, even after months of speech therapy. It’s a roller coaster ride and I just want off. At times I felt like it’s never going to click. Something is holding him back. Something deep inside his brain is not connecting. Otherwise we would see—and hear more. More.

But today is different. Today is promising. I have hope again. I can see it in the way he makes eye contact now and the way he shows joy when we mimic his vocalizations. Something is clicking. Something deep inside. I have hope. My little Kenneth is going to let me hear his voice this year.