I have been wanting to write a blog about each child for some time now. I am finally going to get it done! The kids are growing so fast, and we are having so much fun with them. They are changing every day, and no one is changing faster than our little guy Jackson.
Jack is five and half years old and he is in his third year of preschool. He goes to school at Angel House and attends five mornings a week. He really enjoys school and is always excited to go. Chris takes Jack and Savannah on Mondays and Wednesdays and just Jack on Tuesday and Thursdays. I take them both on Friday mornings. The routine Chris has established is to say prayers in the car on the way. I love that because I know that Chris’ mom did that with them every morning. I am glad he has continued that tradition with our kids.
Preschool is going very well for Jack. He has an IEP (individual education plan) through the AEA (Area Education Agency) for occupational therapy and speech. At the last meeting/phone conference with the AEA they gave us the GREAT news that Jack would no longer qualify for an IEP. At first when they told me I didn’t really get it. I thought it meant something about funding. But then they said that he is doing too WELL ACADEMICALLY to qualify for support. I about whooped into the phone. The preschool teachers feel that Jack is progressing very well and will have no problems moving onto Kindergarten. Chris and I are so proud of him. He has worked so hard on his speech, cutting with scissors, writing his first and last name, learning his address, shapes, colors, alphabet, numbers, and everything else that goes along with preschool. The teacher has said that Jack is very kind to other children and follows the rules well. In the beginning of the year he had a bit of a problem with the freedom to use the restroom unrestricted, and was frequenting the bathroom 5-6 times a morning. I think we have that under control now. 
His speech is pretty remarkable now. At least to us it is. We continue to be impressed with his ability to carry on a long conversation, sometimes using words that we don’t remember even saying to him (ridiculous, terrible) and answering questions after listening to a story. We are so grateful for his progress and his enthusiasm for learning. He has even begun to sit with Savannah at the table to do bead work, paint, and floor puzzles. These are things that he used to dislike to do and we had to encourage (nag) him to try these activities. He now seems to really enjoy them.
Jack started out the school year with Kindermusik on Monday nights. He really liked his teacher, Mr. Donny, and the changes to the curriculum from Ames to Sioux City. He really has a creative silly side, and Kindermusik allowed him to let that come out freely. Mr. Donny had very loose control of the classroom of six children. Haha. Chris and I always had to laugh when Mr. Donny finally had to turn down the music to get the kids to settle down. Jack and Savannah were in Kindermusik until Christmas. We are planning on starting back up in the fall at a different location. The building was old, dimly lit, and rather cold. I want the kids to be able to sit on a carpeted floor and stay warm during class.
Jack and Savannah are taking swimming lessons at North High on Tuesday and Thursday nights from 6:15-7:00. Lessons have gone well. I am always happy to see that the kids are not fearful of new people or environments. Both of them just jumped right in the water and started the lesson. A few other children clung to their parents, or cried about getting in the water, but not Jack and Savvy. Jack is in a private lesson for the first session. I wanted the teacher to focus on just him so that she could see what his weaknesses are with his right hand and arm. She said he is doing a great job and should be in a group lesson in the next session so he can watch the other kids learn the strokes.
What else is new with Jack? We went to Iowa City on March 13th for his yearly skull radiographs, appointment with pediatric neurosurgeon Dr. Menezes and routine visit to see Dr. Olson the pediatric ophthalmologist. We left Savannah and Landon at home with Lolli and Aunt Anne. Landon is not the best traveler (he HATES his car seat) and it really doesn’t seem fair to make Savannah sit in the car for five hours if she doesn’t have to. And, it was nice to focus only on Mr. Jackson. We left on a Tuesday afternoon and stayed overnight in Coralville on Tuesday night for early morning appointments on Wednesday.
I loved sitting next to him, reading, watching movies, and we even did some flash cards on our road trip. When you are with one child, one on one, you learn and realize ways they are growing that you don’t notice in the chaos of taking care of all three.
We stayed at a hotel that has an indoor pool with a waterslide. We met our friend Shane for pizza at the hotel and caught up with her. It was wonderful to laugh with her. She had an actual conversation with Jack and we all had to laugh at Jacks responses. She died laughing when she asked Jack what his favorite song was and his response was, “Hey Porshe".” Bad mommy moment. We should not let Jack listen to Chris’ workout music. Jack continued to make us laugh all weekend.
Going swimming with just Jack was great. We had so much fun being able to just focus on him and watching his excitement about going down the waterslide. He even begged to go down the waterslide by himself. And we let him. I just wish I could have captured his facial expressions as he came shooting out of the end of the slide into the water.
He wouldn’t even turn around to smile he was so excited to get on that elevator to go swim.
At this same elevator door Jack and a stranger had an interesting conversation. Chris told me that as they were approaching the elevator, a middle aged man was standing there waiting for the door to open. Jack hollers, "Hey, wait for us, we're coming too." "Sure, no problem," says the man. "Care if I push the button?" says Jack. "Of course," he says with a smile. "We're just waiting for my mom, she takes forever." The man laughs. As they step on the elevator Jack says, "We got a new car, our old one was junk." The man laughed so hard, as Chris explained the car was bought over a year ago!
Just before shooting out of the slide like a rocket with his Daddy.
Times like these I wish I could buy an expensive camera and take photography lessons to capture these fun shots with tricky lighting. Maybe someday.
We finished the night with a soak in the hot tub. I snuggled with my Jack that night and prayed for good news the next morning. We slept well, ate breakfast at the hotel and headed to UIHC.
Thank goodness for waiting room toys.
Jack did very well for his skull x ray…following directions from the tech well….this time he showed no signs of fear and was very decisive about his sticker choice afterwards this time around. We had minimal wait time for Dr. Menezes and didn’t have to see the PA or resident. Dr. Menezes was happy with the minimal bone growth demonstrated by the new films. He explained that since Jack has scar tissue instead of healthy brain tissue on the left side under the resorbed bone, there is no pressure from the inside stimulating bone growth. The only stimulation he has is from the outside by his helmet. He discussed with us the options for cranioplasty….this time changing his mind about his recommendation. In the past he had said he wanted to do rib grafting, using Jacks rib bone to reconstruct a foundation for bone growth in the areas he is deficient. This was discussed in the past as being a two step process. Meaning two surgeries. This option was one that always made me feel somewhat sick….but how can I argue with a neurosurgeon. The thought of having my little boy opened up on the operating table with two surgical sites, a new scar, weakened ribs…..not exactly what a mother wants to hear is necessary for her child. Dr Menezes said he was leaning more towards a digital scanned/computer designed/fabricated plate, either titanium or PMMA, to replace Jack’s missing bone. The advantages of this are obvious. Avoid one or two surgeries, avoid weakening Jack’s ribs, avoid the possibility of failure of stimulating bone growth to fill in the missing areas. The disadvantages are that we would have to wait until his is a bit older and his skull is completely formed. Wait….was that supposed to be a disadvantage? Sounds good to me. The bigger and stronger he is the better. I was thrilled with the news. We had a few questions but the consensus was that we all felt it was the best for him. I wanted to ask why when I brought up that option two years ago, my idea was not even considered by him. He dismissed it quickly, saying using his own bone was the best option. But I kept my mouth shut. Believe it or not, I am getting better at doing that.
We headed straight to the ophthalmologist and Jack again was on his best behavior, listening and following direction for the orthoptist and Dr. Olsen well. Jack’s vision tests completely normal, the surgery would be mostly for an esthetic/cosmetic result to align his eyes better. Dr. Olsen said the surgery could be done virtually at any time. I asked if it could be done at the same time as his skull surgery to avoid multiple general anesthetics. He smiled and said, “yes, that is a good idea.” Jeez. I feel sorry for all the kids with parents who are not smart enough to help coordinate care for the their child. Because the physicians are certainly NOT doing it. If I would not have spoken up on Jack’s behalf they certainly would have done two separate surgeries and he would have undergone two general anesthetics. There is evidence that exists that explains the risks and possible damage to the brain of a child who has had to undergo multiple general anesthetics. Jack has already had two. Overall I was pleased with how both appointments went, just frustrated with the fact that in order to have the best care and result for your child, you have to demand it and be an informed advocate for your child. Some parents do not have that knowledge or ability.
Our smiling patient in the ophthalmologist's chair.
The ride home was pretty uneventful. We stopped for junk food, and Jack and I got the giggles after our sugar binge. I was so excited to get home to Landon and Savannah. I missed them terribly. But they seemed to have had a fantastic time while we were gone.
A few other fast facts about my little boy.
1. Jack taught himself to whistle and snap about seven or eight months ago. I knew he was working on learning to snap but the whistling thing slipped past me. I am a very light sleeper and one night back in October I woke to the sound of whistling at 3 am. It scared me to death. I thought that someone was in our house. I whacked Chris on the shoulder and said, “Chris do you hear that? Someone is whistling!” Next thing I know I hear the tinkle of potty. I jumped out of bed and went to the kids bathroom in the hallway. Jack was standing there going potty and whistling like a champ. He turned and stopped whistling just long enough to grin from ear to ear. I laughed out loud. That kid….he amazes me. The snapping is pretty cute when we are in the car or in the kitchen listening to music. He just snaps away in his car seat, bopping his head to the music.
2. One weekend at church Jack and Savannah decided they wanted to go to the Children’s Liturgy by themselves. I had taken them a couple of times but this time they said they wanted to leave the pew and walk all the way to the back of the church to Angel House with the other kids. I said they could and off they marched with the other kiddos. I was nervous that Jack would trip on the steps but he did fine. After the children were finished with their lesson we could see them walking back to their families in the pews. Jack and Savvy were the last to come and they had to walk across the front of church. Suddenly, Jack went down right in front of the deacon. Deacon Fred is very tall, he was my grade school basketball coach. He leaned down and picked Jack up before he could even see who was helping him. Jack looked up in awe at this tall man in white and smiled. As he ran to the pew his smile grew bigger. Once he was within a few feet he exclaimed, “Mom, I fell and Jesus picked me up!!!” Everyone who heard it laughed, and Jack thought he was the funniest kid. Chris and I just laughed and I honestly thought it was one of the sweetest and funniest things he has ever said. And he meant it with childlike innocence. So sweet.
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