EEG, Playing, Park, and ASU

On Friday, Nathan had another 2 hour EEG with video. As Dr. Brown put it afterwards, the EEG looked good for Nathan. There are still many questions about what one can tell from Nathan's EEGs. The one thing we decided was to NOT change his phenobarbital dose.

Jacen

Jacen continues to be a happy baby/toddler, he likes to play by himself, he will stay focused on things for long periods of time, he seems to be a problem solver, and he has no fear. We brought the toy with a slide and door inside and he loves it! He climbed up the slide!!!! He is getting to where he will stand on his own for short periods of time. He still won't walk without holding onto something. He has 8 teeth. He loves most foods that we feed him except apples. He says dada, mama, pup pup, bubba, bye bye, quack quack, no no, and other babbling that we don't understand. Promotion Sunday was yesterday at church. He is now in the Castle's class. They are awesome!!!!!

Nathan

Nathan continues to be more content because we are going to the chiropractor. We continue to work with ECI using the red "boxing" gloves and kinesiotape. We are focusing on laying on his side, joint compressions, and bumbo time right now. He still loves tummy time. We have used the tube more this past week, he is taking 30 minutes to eat now, and we have had lots of spit up. Hopefully all of that gets better!!!!

Park

We met Elizabeth and her boys at the park early Wednesday morning. We still have to watch Nathan's temperature. Jacen loved climbing, sliding, and playing in the sand. Nathan had a good morning hanging out in his stroller while we talked to him. Avery even sang to him : )

ASU

Kyle and I both graduated from ASU in San Angelo, so when Kyle was there in April to help with Regional UIL, he got the boys ASU shirts!!! I don't know how photographers do it. I couldn't get Jacen to be still long enough to get a good picture of them together :(

Playtime and Friends

Keri and Karli

Keri, one of Nathan's NICU night nurses, and her daughter Karli came by to visit before their big move back to Houston. We will miss y'all!!!! We wish you the best!

Nathan

Nathan had a pretty good week! He wasn't as interested in the bottle and happy as the last post. We have still only used the G tube twice. We were going to use it one morning at 4, but as we were getting everything ready he woke up ready to bottle. Nathan definitely does not follow any instruction manual.

He enjoyed sitting in his couch again.

Bumbo time with Patches protecting.

Jacen

A sweet family from church brought us some clothes for the boys and a toy from their attic that their son doesn't play with anymore. Thank you to the Skeltons!!!!!! Jacen really likes to push the buttons. He wouldn't ride it himself, so I convinced him to put his feet up while I pushed him around the room.

Yay!!!!! Jacen can put the circle/cylinder shape into the shape sorter.

I caught him standing on his own. He was distracted by a toy and forgot he was standing I think.

Both Boys

Nathan wasn't happy in his swing, so Jacen went over to try to make him happy by turning different knobs :)

Swimming, Friends, G Tube, Grandparents, Tummy Time, and So Much More

Swimming

The weekend before Nathan had his G Tube put in, we swam in the boys kiddie pool. This was the first time that Nathan was in it. He seemed to really enjoy sitting in the water with Daddy and Jacen. He couldn't stay very long though as we discovered his body temperature drops fast just like it increases fast when he is angry or outside in the heat too long. Jacen still loves to play and splash in the pool!

Playing

The Luft children came to play the Monday before we went to the hospital. We had lots of fun. Jacen and Hayden really enjoyed following Annie and Hudson around everywhere. Annie and Hudson really enjoyed coloring in the Cars Marker book.

Annie

Hudson

Hayden and Jacen

All 4! I never got a good pic of Nathan :(

Bath Time - The night before going into the hospital

We decided to try a regular bath instead of Nathan being swaddled. He tolerated it just fine!!! Jacen wanted to help or maybe get in. I am still not sure :)

Wednesday - G Tube Day

Before Surgery

After Surgery

Both of the following pics are right after we got to his room. The surgery went great. It only took about 15 minutes. Unfortunately about 11am he decided he was going to be angry because we wouldn't feed him. Poor thing didn't get to eat from midnight until 7pm. It was a long day!!!! He didn't tolerate his 11am meds on an empty tummy. They tried tylenol with codeine, but he threw it up. I tried the pacifier, but after a while he figured out it wasn't going to give him any food. He also had 2 other pain meds, but really he just wanted to eat. From 11am to 7pm he screamed EXCEPT for the 15 minutes that Dr. Higgins was there to check on him. So at 7pm, he got to eat 1 oz. That really ticked him off because he was still hungry. Then at 11pm and 3am, he was allowed to eat 3 oz. He was content for about 2 hours each time and then was hungry again. Kyle and I were exhausted and very very tired of hearing him scream, so when Dr. Higgins rounded at 6:30am, we asked if he took his normal 6 oz bottle at 7am fine could we leave. He did great, so we told the nurse who had us out of there by 10am. We wanted to be home for the next feed at 11am. Maybe I should also clarify that the tube was never tested in the hospital because Nathan WANTED to bottle. We didn't tell the nurses no one showed us how to use the G tube. So we called our Hospice nurse on our way home to let her know, so she could come make her visit. We proceeded to tell her that we didn't know how to use the G tube. She luckily knew how and showed us. THANK YOU HEIDI!!!!

Up close after we got home and gave him a bath.

Grandparents

My Mom and Stepdad came to take care of Jacen while we were in the hospital. They stayed to help out until Saturday. Thank you!

Jacen and Grandma went swimming.

Jacen convinced Grandma to spend many hours playing outside opening and closing that red door!!!!

This Week

Jacen loves to open and shut doors!

He will wedge himself into tiny spaces. Sometimes he figures his way out and sometimes he just gets mad!

We are trying to convince him to stand by himself and walk. Wow!!!! That is hard especially with Jacen who is so happy and content. In this picture, we finally figured out how to have him stand on his own. We distracted him with a little tape measure. We got the idea because during the day on Tuesday ECI let him play with one. Then that same evening I broke it. I better find another one fast.

Nathan

He has been so happy during the day and willing to bottle at feeding times. We have only used the tube twice since we have been home. He is allowed 30 minutes to bottle and then whatever is left we tube. So far since we have been home a 15 minute feed is normal and a 30 minute feed is long. Our perspective sure has changed. Before 30 minutes was a good feed, but a normal feed was 1-2 hours. He is sucking better and has less spit up. No one knows how to explain it except that it might be a growth spurt. We don't know for sure, but we are enjoying it. It allows for so much more time to play with Jacen, as well as Bumbo time, tummy time, stretches, etc, etc, etc with Nathan. We have also noticed that his clonous (involuntary shaking) in his legs has decreased. Overall he is so much happier. We don't know if all of this will last, but we are going to enjoy it while it does!

Sitting on the couch with his "boxing" gloves and tape on his legs from ECI.

Swinging

His Couch
So far he hasn't slept in it, which was the original intention. But he sure was happy Monday to sit in it, smile, and even "talk" to Heidi.

Tummy Time

Patches doesn't like to be left out. We think he thought if he laid on the mat we would pay attention to him.

Nathan Post Surgery Tummy Time

We have been propping him up to hopefully keep the G tube from rubbing on the floor when he scoots. We should be good to not put him on the pillow in a few weeks. He has tolerated the pillows quite well!!!!!