Moving Along....

Hello everyone,

Just wanted to drop a note on Jenna. Since we came home, she has decided that she will get back to her old self. She is walking all over the place, attempting to climb, getting into everything, and oh yeah, throwing those lovely temper tantrums. Those are fun, you look at her wrong and she bursts into tears. I am not looking forward to the terror three's if she is like this at two. Should be great. :) Just yesterday I caught her with a purple crayon marking all over the entertainment center. Thank god for baby wipes, they take out everything!! So, we are still on oxygen continously, when she is exerting herself and does not have it, you can tell that she needs it. Also, her oxygen levels are still needing to be a little higher than normal, and she needs just a little oxygen to maintain it. We saw her pediatrician when we came home, which was a good visit. The following week we saw her cardiologist, Papa Heydarian. He was so thrilled to see her and glad that she was smiling. Her chest xray from her previous visit in December to now had not changed much, but he also did not see her films when we were in the hospital. He felt that she looked great, but felt that she was still having large amounts of blood flow to her right lung and that she was still having some congestion build up. He said that we just need to watch her and make sure that she does not get worse, she is just so prone to infections. He said that he can still hear her blood flowing both ways when he listens to her via stethoscope. He does not want to do an echo quite yet, just so we can make sure that she is completely better and the heart is getting back to her normal baseline. He did increase her Lasix some, just to make sure she was not holding any fluid, plus she had gained a little weight and it is weight based. That's right, more weight gain! We are up to 26lbs 6oz! She is getting so big, and is almost 3 feet tall! She has been eating much better also, we are so proud. She loves her mandarin oranges, noo (noodles), apple juice, ice cream. We are so thrilled! We see him back at the end of February, but are seeing her Pulmonologist in Cincy on Feb 8. He will do another chest xray to make sure that she is clearing and we are supposed to be scheduled for her scopes at the end of Feb and possibly another echo. Still waiting on the call for those tests. Her birth to three team is returning to see her now, we saw her development specialist last week (Jenna had so much fun!) and her speech therapist this week. It took her a little bit to warm up with them, but she did. Her dietician and coordinator are coming this week also. Putnam County Schools will be coming to see us in Feb also to evaluate Jenna's level of ability. Since she is so susceptible to illness, we are not placing her in preschool. This group determines if she is eligible for someone to come out and be with her, since Birth to three only goes until Jenna is 3.

But not much else going on with her, just doing her usual. She walks around and plays, picks out the movies she wants to watch and goes on. We have watched Charlotte's Web so many times this week I have lost count. :) We are moving along as well. Justin is working hard as usual and comes home and is great and helps me with anything to do before bed time, since our nurses do not start until 11. There is one slight change, I have chosen not to return to work at this time. I was so sad to tell the doctors I worked for that I was not returning, but right now my time is with Jenna. She has so much going on, that it would be just too difficult to work also. I feel that I would not be able to give 100% if I did return, because I do not know how things will go from day to day with her. So, Drs Dewitt and Gibson, and Alice (my manager), I would like to say thank you. It meant so much for you to allow me to be off from work this entire time to take care of my daughter and be there for her. I thank you from the bottom of my heart and appreciate everything so much. I will miss you all. So, now I have a new challenge, being a stay at hom mom, this should be interesting! I have worked every day since I was 17, so it will be different but I am looking forward to it.

So, if anything new happens I will post. I am going to try and post new pics of her soon. Thanks to everyone for the thoughts and prayers again and as Jenna says~~Bye-Bye!

Love Jenny, Justin and Jenna