Tuesday, January 27, 2009

Daxtons progress

Last week we had clinic and Daxton had already gained one whole pound after the g-tube!! We were really excited and he seems to continue to chunk up. His white blood cell count was up on Thursday he seemed to have alittle bit of something but that quickly passed and now he is doing just great.
We had the physical therapy come yesterday and evaluate him to see where he was in terms of development delays. In cognitive and social he is right on track. We are just hugely lacking in motor skills; sitting up, rolling over, holding head up when on tummy, etc. They said he is at about a 2 month old level. They said not to feel bad, I don't. He has accomplished and been through so much already in his little life, I don't expect a lot from him and I know that he will get there in time.
The other day while I was at the high school a student came up to me and told me that her uncle had a heart transplant when he was one, he is in his forties right now and he is doing great. And the best part is he hasn't had to have another transplant. That made me so happy and hopeful.
Isn't that amazing. And forty years ago, think of how much better everything is now, the meds, the research, everything!! Miracle!!
Some other great news is Daxton is off one of his major rejection meds, his steroid. This has been a five month taper and we are finally off. The transplant team said that we would be able to take him out some, as long as no one was sick. I have even been able to take him to the store. It has been really nice to have a little bit of freedom. We are still super careful with RSV season, but we are getting there. Daxton was able to go to his first big Tonge party on Saturday, we celebrated his Great Grandma and Great Grandpas Birthdays. It was a lot of fun.

Thursday, January 22, 2009

Some encouraging words for the mommys out there

"We need to remember that the full commitment of motherhood and of putting children first can be difficult. Through my own four-generation experience in our family, and through discussions with mothers of young children throughout the Church, I know something of a mother's emotions that accompany her commitment to be at home with young children. There are moments of great joy and incredible fulfillment, but there are also moments of a sense of inadequacy, monotony, and frustration. Mothers may feel they receive little or no appreciation for the choice they have made. Sometimes even husbands seem to have no idea of the demands upon their wives. "As a Church, we have enormous respect and gratitude to you mothers of young children. We want you to be happy and successful in your families and to have the validation and support you need and deserve."M. Russell Ballard, "Daughters of God," Ensign, May 2008, 109

Wednesday, January 21, 2009

Home Sweet Home!!

We are home and Daxton is doing really well. The first and second day of G-Tube was really frustrating. He was refusing to eat anything by mouth. I was so frustrated because that is not why we got the tube, we did the tube so it would be a suplement to what he was already eating. But the next day he was drinking a lot better and almost back to normal. I think he still had a little bit of a sore throat from surgery. Tomorrow he has clinic so we will see if he has gained any weight.
Mady has been super busy down at the high school. She is in Beauty and The Beast. She is a little towns girl and a sugar cube. She is such a little drama mama and she loves every minute of it. If you are in the area you will have to come see the play at Woods Cross High School, they really do an amazing job. And I will be doing hair for the leads. It is definatly a family afair. It starts Feb 5th and runs until Feb21st.

Friday, January 16, 2009

Long day

So the surgery went well. It only took one hour, half of which was trying to get an iv in him. We counted 9-yes 9 attempts for an iv. Poor little man. When they let me go back and see him he was really sad. He cried and was very uncomfortable for the next 7 hours. He cried and would only take little cat naps for 5-10 minutes. At about 9 oclock he had a really good throw up and he has felt better ever since. He is sleeping really well right now, so hopefully he will be able to get some rest and not need as much pain medicine. They are only going to send us home on tylenol so I hope that will be enough. Tomorrow we are going to start feeding him in the tube. They are going to start with 2 ounces wait 2 hours, then try 3 ounces wait 3 hours, and then do it again. I was under the assumption that we were going home in the early morning. Um no, I guess that is what I get for assuming. Thank you for all of the prayers and well wishes.

Thursday, January 15, 2009


I know that this surgery is realitivly minor, but I am super nervous. I do not like the unknown. It will be ok. Daxton rolled over for the first time today. Ya for Daxton, hopefully this surgery will help him progress and grow faster.

Sunday, January 11, 2009


So Daxton is going to get a G Tube. His surgery is set for Friday the 16th. We met with the doctor last Friday and I feel good about the surgery. I think it will help Daxton in the long run. It is a relatively simple procedure. The Doctor said that it would only take about 1/2 hour. But still he will have to be intibated and given sedation. It will all be ok, he will have to stay over night to be watched. If you could say a view extra prayers for my little man it would be greatly appreciated.

Sunday, January 4, 2009

Not a bad way to start out 2009

Go Utes baby!! Thats right how about some sugar. We were all able to go on a little family trip to Grandma and Grandpa Tonges house to watch the big game. It was a lot of fun! It felt nice to get out of the house as a family. And yes we won 31-17!!
Daxton is doing really well. We went to clinic last Monday and he had gained 7 ounces!! Ya for Daxton! They are going to give us until Thursday to see if he can continue to gain more weight. If he does we will be able to postpone the g-tube. We are praying so hard that he keeps gaining. He is drinking more, so that is promising. We have an appointment this Thursday so we shall see. Keeping positive thoughts!!