Building & Strenghting the family... one day at a time!

Tuesday, June 3, 2008

Going to PCMC on Thursday


Ashton has an appointment on Thursday of this week. His sats have been fluctuating so we are going to go have an echo to see how the blood flow is. There is a concern that the pulmonary artery may be closing off, so we will see what is happening.

I made a post on carepages a little while back but I will update the blog for those of you who don't check the carepage.

Overall, Ashton is doing really good. His Occupational therapist and his nurse are excited at how good he is doing with his physical development. He is actually ahead of where he should be for his age. He has a nurse who comes 3 days a week for 4 hours each day and then a therapist who comes each week for an hour. Shanna and I work with him and then he has 4 older siblings who play with him, so he gets a lot of individual attention that has probably helped him come along. Oh and then there is always the fact that Ashton is just really smart and cute and funny and fun and spoiled rotten because of it all! He still isn't talking like expected for his age, but he is making more and more sounds and gestures all the time. I don't know if he can't or just isn't interested in talking. It is obvious that he understands what we are saying to him. Especially when he gets into something that he knows he isn't supposed to have and we tell him to put it back or bring it to us. Ya..that's when he turns and high-tails it in the other direction with a big grin. We have been working with him to teach him to sign a little. This has helped the screaming a little. Even though he doesn't always try to talk, he will sign to tell us what he wants instead of just screaming until we figure it out.
Something I wanted to let parents know about is a new nasal cannula that we got. It is from Salter Labs and it is called a comfort care cannula with head band. Here is a link to it if you want to take a look. http://www.salterlabs.com/documents/SLC-06_000.pdf
Anyway, Ashton acts like he doesn't notice it as much as the traditional cannulas. I don't always use the head band that it comes with, rather I use cloth tape over the bridge of his nose to hold it in place.

My last bit of news is that our family went to the temple on May 24th to be sealed. We were able to get permission from Shamra and Dakota's dad's so that I could be sealed to them along with our boys Shanna and I have together. It was so awesome! Then after we got sealed, we had a luncheon and after that, we shipped the kids off to Utah for the last two weeks. I usually enjoy having a break but this time it felt kind of weird to just go through such a special time and then have them gone. Shanna has to work, but I will be leaving at 4:30 a.m. Thursday to head to PCMC and I will meet with the kids after our appointment. We will get a hotel for the night and come home on Friday.

I'll try to post something about the results of Ashton's echo. We are hoping to be able to wait about another year before he has the Fontain surgery. We'll see if that is realistic.
















3 comments:

MAYBERRY said...

Congrats on your sealing. That is awesome!
Love,
The Hardy's (IHH Members)
(Ashton, HRHS, Dextrocardia, etc.)

carolyn q said...

I am sorry I won't see you on Saturday . .can't you guys just stay one day longer???
I hope the appointment went well.
CONGRATS. . . I know it's something you have been working so hard to do and I am sure it was wonderful to know you will be together forever!
Heart Hugs,
Carolyn Quigley

Dean said...

Finally found You... Little Brother... I see you and your family are doing excellent. I've been looking for you for the last while. I am very happy to see you and your family doing well. Chris and Bev look GREAT!!! I am amazed at the struggles you have had and the successes and blessings. You have always been a strong one and it looks like you passed it to your son.

Patrick will be coming home from his mission in Puebla Mexico in 3 days... Give me a call or drop a line. Would love to see you all again... We are in Utah County still. Doing great!

Dean
801-380-8377