The Phillips Family: July 2010

Saturday, July 24, 2010

Great Grandpa and Great Grandma Johnson Came to Visit

Kyle's grandparents came to visit on their way to visit Kyle's mom in Wyoming. We had a nice visit!!!

Great Grandpa and Nathan

Great Grandpa and Jacen
Jacen took his pen and was playing with it :)

Dinner Time
Let's play drums on the table. Great Grandpa joined in too!!!!

Jacen showing Great Grandma how to play with the Thomas the Train story book.

Great Grandma and Nathan

Great Grandpa and Jacen
"directing" music

Looking back at old photos :)

The best group picture I could get :)

Momma and Her Boys

Kyle was trying to get ready for work one morning, and I was bottling Nathan. Jacen had already eaten, so we had to find something to do with him. He didn't want to play in his room or the "pen" but he really wanted the computer. So Kyle added him to the chair with Nathan, Patches, and me. So I bottled Nathan and played Family Feud to keep Jacen entertained.

Jacen

Jacen continues to be a happy child. He is still cruising on furniture and will walk while we hold his hands. We are still working on standing alone and walking. He can say mama, dada, pup pup, bubba, bye bye, and sometimes other words that he parrots once and we don't hear again. He and Daddy have found a way to communicate when he wants more milk or juice. Jacen will hand Daddy his cup. His face lights up when Daddy takes it, smiles, and refills it. He loves to climb and is into everything. I hear it only gets worse as he starts to walk. I am in trouble!!!!!

My friend Laura was visiting. He was very interested in her phone of course.

I love his facial expressions!

Our little climber :)

Daddy working with Jacen on standing. He would do it for a few seconds!!!!!

He loves going to the store.

Car from Case's birthday party. He loves it!!!!

Like I said he is into everything. He worked on clearing my table and then found a way to sit under it :)

Nathan

We haven't been to any new appointments lately, but for those of you who would like to know his current medical status. The bloodwork shows that everything is about the same. So Nathan's kidneys are functioning at about 25% still. He still has many problems including brain, kidney, and liver damage. As each day goes by we can see more and more things that Nathan can't do that Jacen can. We have our good days and bad days for all of us. He still works with ECI. We are working on trying to get him to not clench his fists. We are also using medical tape to keep his feet in a more normal position. We are working on getting DAFOs or braces for his feet. Since they do not bear weight, they are beginning to turn in. Then ECI has also mentioned a stander in the future. We are also discussing a g-tube because Nathan has gotten to where sometimes he is interested in bottling and only takes 30 minutes, but other times he isn't interested, his clonous is bothering him, and it takes 1-2 hours. Please continue to pray for Nathan and our family. As we continuing daily to make decisions and enjoy the time we have with him. We want it to be the best it can be for all four of us as a family.

Bumbo Time

Notice the mat that I put him on and how far he can scoot when he is mad!!!!

ECI - She was working with Nathan to get his hands midline. You will notice his different facial expressions as I continued to take pictures.

Nathan can sleep anywhere during the day :)

Wednesday, July 21, 2010

Jump N Jungle

We went to Jump n Jungle on Saturday for Case's 2nd birthday. We weren't sure what Jacen would do because at 'Jump for Nathan' earlier this year he just cried. He ended up doing so much better than we expected. We even got some smiles. Thank you Case and the Driskill family for inviting us!!!!!

Nathan enjoyed a long nap!

Jacen

Jacen and I sliding for about the 5th time. He finally had an almost smile on his face :)

Jacen got to eat his first slice of cheese pizza and sit up on a bench all by himself!!!!

VBS Celebration

Last Wednesday we went to the VBS celebration at church because I wanted to see if the boys would tolerate Wednesday evenings at church. Jacen was unsure at first, but was hyper and everywhere by the end!!! Nathan was content the whole time even after waking up from a short nap. The only problem is that is during his feeding time. So we are still unsure what to do about that because waiting until 8pm to eat messes with his night schedule. Please pray we figure out what to do and what is best for Nathan and our whole family!

Jacen wasn't sure at first. Notice the little glow stick in his hand. They handed them out because the theme was Backstage with the Bible.

Kids on stage singing a song from VBS.

Brian, our Congregational Life Minister

Thank you Cade for holding Nathan, so I could hold Jacen!!!

By the end, he liked the glow stick and wanted other peoples' glow sticks too!!

Tuesday, July 13, 2010

NICU Reunion

We went to the Covenant NICU reunion on Saturday. It was great to see some of the boys' nurses as well as Chae and her son Rhett who were there a long time in NICU too. They had Cinderella characters, pictures with the characters, a skit, and a neat Cinderella cake. The boys were given crowns and sashes to wear :) Jacen wasn't sure at first what to do around that many people in a new place. Nathan was happy the whole time!