We have had a couple of very busy weeks. We had Ashley and Audrey's birthday party which required a lot more of my extra time. I will be posting a slide or montage of it with in a few days. My friend who has taken our family pictures in the past was there taking photos and she will be giving me a disc of the pictures. When I get those I will be posting them. Everyone had a great time even though it was in the middle of the snow storm we had.

Jaden's cardiology appointment ended up just being an echo. Dr. Chip was supposed to meet with us but of course ended up being out of town. Go figure. He did call to tell me the results though. He said Jaden's heart function has improved since last time but it still was not where it should be. He wants to continue what we are doing with his meds and then check again in a few weeks to see how it is doing then.

Jaden is doing fine overall and is cutting 3 teeth so is a little on the crabby side of life. When he forgets that his teeth are coming in he is very happy and wanting to explore. OT is coming weekly and is very pleased with his improvements on his movements. We are still working very hard on trying to get him to crawl and have tummy time.

Jaden will be one in a little over a month. How the time has gone so fast. It is amazing what life brings us.

Love to you all, Steph

p.s. make sure to map yourself down below.

Map yourself

Please add yourself to the map if you have not already done so.

Things have been a crazy whirl wind here. We have all been taking turns being sick to include Jaden. We went to the clinic last week for 2 1/2 hours with Jaden. He had a major ear infection. A few days later he was projectile throwing up. It was rough. He was up all night (many all nights) with his ear ache and his congestion from the very bad cold he then got.

Jaden has been having Occupational Therapy now for 2 weeks. He does not like that at all but needs it very much. This will be a weekly appointment at our house. We have a cardiologist appointment next week. We are hoping for some good results with the med changes we made.

We have also had a lot going on with Valentine's day things, appointments of all types and planning for Ashley and Audrey's birthday party... We are having a "royal ball." We have a ballroom and everything. It will be a lot of fun and a great time to just let loose from this very difficult past year we have all had. Adults as well as the children are required to dress up. There is a wide range from king's to dragons to knights to princesses. It will be a lot of fun seeing what everyone comes dressed as. We will be posting a slide show afterwards. I may have to make a montage of it since there will be a lot of pictures. We will see.

I will try to keep up my posting's weekly. I am sorry I have not but it has been quite difficult to even have the energy to pick up the computer with all else that is going on. I do see many of you are still checking regularly and again I am sorry for not being consistent.

Gonzalez's Heart

I wanted to post this because I found it while I was looking up the "S3" that Steph mentioned. It is called a "gallop rythym." This website explains that the S3 has the syllables of "ken-tuc-ky." It has a .wav file that you can download and listen to. I listened to it over and over again and cannot hear the S3 or the extra syllable there. I guess if you listen to heartbeats all day long...
http://www.childrenshospital.org/cfapps/mml/index.cfm?CAT=media&MEDIA_ID=1640

If you follow this link instead, there is a list for 4 examples of S3 and the S4 rythyms (I had no idea such a thing existed). http://www.childrenshospital.org/cfapps/mml/index.cfm?CAT=subtopic&SUBTOPIC_ID=1101
By the way, the S4 has the cadence of the syllables "ten-nes-see," and that one is a little easier to distinguish.

As for information about the significance of the gallop rythym with HLHS, I couldn't find a thing on it at all. It just another example of Jaden's way of being extra special I guess!

Edited to add: Did you know that 80% of pregnant women have an S3? Hmmm... This website has some great information: http://www.chfpatients.com/faq/s3s4.htm

Steph T

Gonzalez's Heart

Jaden has been doing pretty good overall. He is slowly getting to where he needs to be. He is still not eating any solids. We did find that he likes ice cream though. We will obviously hold off on that for just a few more months.

Occupational Therapy came yesterday to evaluate him and they said that he is very behind in his transitions from position to position. He is also very weak in his arms. We will be having OT come once a week to help get him where he needs to be. She is bringing a stimulation brush next week and we will rub it all over his body to help him with that. She said this is all very normal for his circumstances.

We had our cardiologist appointment today. Chip said he looked very good but then when he listened to him he heard what he called a "S3." This is something that is new to Jaden. Chip got concerned being that he had not had this before. So we did an Echo and EKG. After the Echo was done Chip came in and said his heart function was not good at all. He put Jaden back on Digoxin which helps with the heart function and has increased his Captopril as well. These together should help him function much easier and hopefully will make this "noise" go away. We have to go back Feb. 21st for another Echo to see if there is any change. If not then we will have to take a much more drastic measure. Chip seemed concerned but was trying to soften it. I am much wiser then that and could read his concern very well. I think he just is truly hoping that the change in meds will help. So we will see what happens in a few weeks. Hopefully all is back to where it needs to be.

We will continue to update weekly unless things come up. Thank you all for your support again.

Love, Steph