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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Wednesday, July 25, 2007

Getting a schedule.

Hey everyone,
It is so nice to have Alex on a small schedule. He is sleeping right now and I am scrambling to get things done. We are so grateful for so many things. Like good friends, family and our health. It is crazy how when you think that something will never effect you and all the sudden your dealing with a major issue. With Alex we had some time to plan and cope. My little sister Preslee, is having some issues and so is a dear little friend Haley. These two are so strong and they had their health issues sprung (for lack of a better word) on them. I wanted to say how amazing I think they are and how proud I am to know them and the parents. I know what it's like to be the mom and you want your child to be healthy and happy. So our prayers go their way. Good luck with chemo Haley, and Pres, we love you!!!!!!!

Monday, July 23, 2007

Caught smiling

Big as my bear......
Look how cute my smile is..
Hanging out in the big chair...

Hi!

I just wanted to write that all is well. There really isn't much going on right now. Our major goal is to get Alex strong and big before the next repair. So I guess if anything comes up (which we hope doesn't happen) I will write. We did go to Orem and stay with my folks last weekend. A real slumber party for Alex and his first, someplace other than the hospital. We love them......

Monday, July 16, 2007

Wee Wee Wee all the way home!!!

Or was it wha wha wha.... Alex hates riding in the car and so we usually feel very rushed to get our screaming baby home. He came home on Thursday and is doing much better. It seems that the c-diff wasn't completely out of his system and came back. We did catch it very early and we were glad not to have him in the hospital for too long. Friday home health came and he looked much better. Saturday he went to visit the pediatrician. Sunday Jeff was put into the Elders Quorum, 2nd counselor...... Today we went to see Dr. Sue the Cardiologist. Tomorrow the developmental specialist Susanne comes. Needless to say we have been very busy. I am excited to have him doing so well. Dr. Sue said that he is looking great and his heart looks very good. He weighs 10 lbs 3 Oz's and is now in the o4Th %( hey that is on the charts) and is 24 inches long..65% He will be tall and skinny. We talked a bunch about how Alex spent so much time in the hospital and wants to hold off the second repair as long as possible unless he totally needs it and I hope it is a little way off so that he can get even bigger and stronger and over all the little weird viruses. Ry is doing well she is as busy as ever and I don't blame her although is does make me a little crazy. She peed on me last night. She has this habit of climbing in bed with us and she didn't have on a diaper we both woke soaked. So at 2:45 am I was taking bed linens off and washing them and she was crying which woke Alex. After much running about we finally settled down again. In the past 48 hours I have washed Alex's entire bed linens twice and mine twice including my duvet and coverlet. Been vomited on and peed on. O the joys of babies...... We love it.

Wednesday, July 11, 2007

Some quick pics




We ended up back at the hospital with yet another go at
C-diff I will let what the plan will be......YUCK

Tuesday, July 10, 2007

We did end up coming home Sunday only to have Alex begin vomiting and having the runs. He hasn't been eating well and we just keep trying to keep him hydrated and comfy. He is sleeping now and I am glad he is getting rest. We may end up back at the hospital for IV fluids we just have to see. There is so much to be careful of with a single ventricle kid.....

Sunday, July 8, 2007

A quick one

So we came back to the hospital yesterday. Alex was doing good ......just not as good as he normally does. He is was not eating or sleeping well. His coloring looked bad and he was over all more cantankerous. So I made all the phone calls just to hear them say bring him in. He had elevated potassium or what is called hyperkalemia. This is a condition where the levels of potassium in your blood is higher than normal. Potassium is an electrolyte that is normally found in your body and keeps your body working properly. Potassium helps control how your muscles, heart, and digestive system work by moving into and out of cells. Most potassium in the body is found inside the cells. Hyperkalemia happens when too much potassium is outside of the cell and stays in the blood. The plan is; to keep him and watch him until his levels look good and he is eating better. We are fine. I didn't fall apart this time and we feel at home. Maybe because it is not that serious or maybe because we most likely will go home tomorrow. Haylee went home today. They found out that she had a cancerous tumor in her kidney. It's so scary to have a sick child. It was removed and she seems to be healing well. We feel for them and we just keep praying for our little friends. Our Bryson friend is a total miracle and nothing seems to be too far out of the ordinary. So we'll keep plugging along until the Glen ( repair # 2).

Friday, July 6, 2007

Happy 4th


We had a blast at the parade and Ry loved seeing the floats with the princess and the horses. It was neat the she was able to really enjoy it all this year. Alex went to his first parade and his first movie. We saw Ratatouille, it was darling. We hope everyone else had a fun fourth.

Alex is still doing well. We went to see his pediatrician on Friday and she was amazed by the weight he is putting on. He is looking really great and we are praying it continues.

Tuesday, July 3, 2007

Getting chunky

We went up to the hospital today to fill Alex's study drug and he was weighed. He is just putting on the chub. He is now 10 lbs and 4 oz. It is amazing he is growing so fast but he does love to eat. We saw a few friends there. They were there for far greater trials and I have yet to find out what the outcome of their tests are. Bryson was there and a new little friend of Ry's and the daughter of one of Jeffs coworkers, Haylie. They both need the extra prayers so send some their way. We are so grateful for all the support we get, and we know that we can't do without it. We also spoke with the family of a pre-diagnosed HLHS girl. They will deliver in Sept and are just going through the beginning part of the emotions of this roller coaster. Our prayers are with them.