Sunday, February 28, 2010

Teeth, Toys, Thumb, and Tub

This past week we found out the results of the EEG. Nathan is still having some subclinical seizures, but for the most part with medicine his seizures are under control. They will not ever be able to completely stop all the seizures without completely sedating him. The eye twitch is not seizures, so we are happy about that.

Dr. Arnold finally made it to Lubbock to see his nephrology patients. He gave us his best guess as to how long Nathan's kidneys will be able to function. He thinks that he will outgrow his kidneys by age 2. This is a prediction of more time than we have been told by doctors before. At any time though, if his system gets out of whack and his potassium goes high then he could go into cardiac arrest. We are still continuing to do our best to enjoy every moment.

For an insurance update for Nathan, we are, with the help of some wonderful people at church, going to pay for Cobra insurance until we can get something figured out. We are working with Hospice and some other wonderful people to try to get him on Medicaid still since Kyle's insurance has denied him.

We rescheduled the chiropractor appointments to this week because Dr. Sanders had a cold. We will have an update on Nathan's first appointment next week.

We are doing bloodwork again this Monday.

Now for the week in pictures.

Jacen is getting his two front bottom teeth.



Jacen is very persistent when playing with toys. He finally got the yellow part of the toy open, but of course he continued to try the other ones too!



Jacen still loves his thumb, but he has also started holding things and sucking his thumb. I think it is so cute!



Friends from our Sunday School class came over to clean the house on Monday night. One of the girls gave him the whole basket of toys and he loved it.
I have continued to do the same thing this week.



Jacen is figuring out how to move toys to where he wants them. I do not know still how he gets this toy on his lap.



Nathan enjoyed watching the lights and listening to the music on this toy.



I love his precious face.



Nathan was sleeping so peacefully that I couldn't resist taking a picture.



Bath Time
I give Nathan swaddle baths because he stays more calm that way. This is where you swaddle him in a towel and only uncover one part of the body at a time to wash.


Before


After


Jacen

Saturday, February 20, 2010

Nathan had a neurologist appointment on Wednesday to see if the eye twitching was seizures or not since they weren't getting better even with a good phenobarbital level. Dr. Brown doesn't think they are seizures, but the only way to be sure was to do an EEG. We had one planned in March, but with our insurance situation, we moved it up. The opening they had before March 1st was Friday. So I took Nathan to his EEG. The first half was good, but then the technician wanted me to wake him up from his nap that he was taking the first half. I don't think she really realized how much Nathan doesn't like to be woken up. Hopefully they have enough usable footage. We won't know results until next week. ECI was here this week along with some friends from my work and church. I didn't seem to remember to take many pictures this week. I think this will be the shortest post that I have ever done.

This coming week will be busy as well so please pray for us. Nathan and I will both be going to the chiropractor. He has his nephrologist appointment on Thursday, so pray for good weather and no problems at the airport. We have ECI again this week as well as an allergy appointment for me. We will also be starting more of our duties back for Cradle Roll at church. We hope to be able to take both boys to church for the first time in March.

Nathan ready to leave for his neurologist appointment. Doesn't he look cute in a cap.



Jacen finally noticed the mirror on the exersaucer.



Jacen also figured out this week that there is another place on the Silly Town toy that makes noise.



Jacen also discovered boxes in the floor of their room that I was using to pack up clothes that are too small. He thought the boxes were more interesting than the toy I was trying to get him to play with.



Crazy Momma that I am, I decided to see what Jacen would do if I put Nathan in his lap.

Sunday, February 14, 2010

Another Week of Snow and Play Time

We did bloodwork on Wednesday which showed kidney levels are closer to Nathan's normal. So this probably means that last weeks high numbers were the result of dehydration due to excessive spit up. We continue to try our best to enjoy every moment since we don't know how long we have with him. We took family pictures on Saturday. It made me feel good to get that done, but trying to get everyone looking at the camera and happy at the same time is tiring.

Snow

It was a Thursday, and we had an appointment scheduled with the nephrologist (who has to fly in from Dallas), so of course it would snow. They were very pretty and huge flakes. On the downside, the appointment was canceled, and the snow was gone by evening.



Nathan

He really picks his head up during tummy time now. While practicing sitting, he sometimes does pretty well, and other times he likes to lean on Jacen. I enjoy the moments when he smiles.



Jacen

Jacen is going to be just like his Daddy and love technology. I think we will be able to get him to crawl soon using remotes and cell phones because he won't crawl for a toy :) He still loves his Exersaucer, but now he is jumping up and down in it. I think he likes the sound it makes. He likes to do strange things with toys. A ring intended for chewing on goes on his leg instead.



Both Boys

We did lots of sitting time this week. I love when they lean on each other and look at each other.

Saturday, February 6, 2010

8 Months Old - Wow Time Flies

I cannot believe that the boys are already 8 months old. Jacen said dada for the first time this week. Below is our week in pictures. We ask for continued prayers for our family. Nathan has more bloodwork on Monday.

Daddy and Nathan


Jacen was also with them, but he was more interested in the remote.


Jacen and Nathan practicing sitting with ECI.


Daddy put Jacen in the Exersaucer and turned on a baby video. Jacen was completely focused on the TV.


Bathing Jacen this week in his ducky tub went better. He was more comfortable and even played with his ducks.


Tummy time doesn't work as well anymore with Jacen because he rolls around everywhere. He really was curious about the scrapbooks.


Laura came to visit this week.


Jacen was trying to get the fish inside the toy.


Nathan was very interested in why brother was getting food while he wasn't.


Jacen loves Patches, so he got really excited when Patches brought him a toy. They never did figure out what to do with the toy.


During story time this day, we also practiced holding books. Of course, Jacen prefers to put his book on the floor and play with it there.