I love my mommy and daddy :)
Don't you love my dress?
Sorry I have not posted in a while. Jenna as usual has kept me going. She continues to get better and improve from her recent illness. We returned to see her pulmonologist last week in Cincy, and had good results. Her chest xray turned out to be improving still, which is good. He said that he would like to continue her on the oxygen assistance, even though she is just on a little amount (1/8 liter), just to keep her right side heart relaxed and not working to hard. They will determine at her next echo if she can stop it, depending on if her bloodflow goes back to normal. We are scheduled for that in March, along with her scopes for her lung and ENT teams. They have also scheduled her next sleep study for April, the night before her heart cath, to determine if she is still having apnea episodes. He will be able to determine at this point if she is ready to come off of the vent. At this point, her two studies which have been done are different and not consistent, and now that she is better and been home, he wants to see if she will improve. He said that everyone can stop briefly in their sleep, but there is a point that they decide what is too much and place the person on assistance at night. As in Jenna's case, the ventilator assistance. So hopefully she will improve by then. He said that she just does not have just one issue causing her apnea, she has multiple little issues, so even if one improves, he cannot say that is what will fix the apnea issue. Great. So, I am just waiting for the test to be done so we can move on. Cross our fingers that she improves. We cannot get the trach out until she is off the vent, so we have to improve there first. He feels confident that she will not be on it much longer than a year total, which means this fall the vent would be gone. I don't know, we will see. Again I reminded that it is all up to Jenna, she calls the shots. I told Justin, I am just not so sure that this doc (pulmonologist) is quite aware of what Jenna is capable of. We will see.
We saw her pediatrician about a week and 1/2 ago for shots and expressed concern about Jenna complaining of pain in her mouth. So, she referred us to a dentist here locally. SO, we visited him today, and much to what I was afraid of, he discovered that Jenna has two large cavities in her first year molars. Since Jenna is not a typical child when it comes to health issues, he said that he would not follow typical protocal with how to handle the cavities, typically they do a "baby root canal" and cap crown the teeth. However, since she has heart issues and the concern is if the decay is not completely removed and it goes into her nerve area in the gums, this could be very bad for Jenna because it could lead into her bloodstream and go to her heart. In her case this type of situation if let go forever could be deadly for her. Not to be so blunt. His recommendation is to have the teeth extracted, which requires hospitalization, so this means that she will have to be under anesthesia. So, he feels it would be best for us to go to see the Pediatric Dentistry group at Children's. Her cardiac anesthesia team is there and they know how to handle her very well. So I called our heart practitioner today, which she advised me very well what to do, I called the group and they in turn appointed us to go in this Thursday. We are not returning to the hospital until March and they do not want to wait that long. SO yes, we will be traveling again this week to Cincy. Hopefully the weather will cooperate. I am glad that they are able to get us in quickly, not only because I do not want it to go too long, but also because she complains of pain when she eats harder things. The dentist said that if she is complaining of pain already, this means that it is reaching her nerves, so we do not want to wait long.
Other than these few issues, Jenna has been doing great. She is walking around everywhere, attempting to climb more. She is not running again yet, but all in due time. We are seeing her Birth to three team again and Jenna is starting to gain a lot of her skills back. She is attempting to talk more, gaining new words everyday. We are soooo proud!! She put on her own pants the other day and is attempting to bathe herself. What a big girl!! She is also getting into everything, constantly knocking things over, dumping things. Oh and we are going through the lovely terrible twos and heading right into the terror threes. Temper tantrums are something I want to encounter everyday, it is almost comical sometimes. She always keeps us laughing.
I will attempt to update quickly after her dental appt this week. They plan on evaluating her and maybe doing xrays. Once they determine what will be done, they will contact her cardiac team and make a game plan. If they decide to do work before her scopes, hopefully they can move those up sooner. Hope everyone enjoys the pics, courtesy of Aunt Linda. They are great!!! As always, pray and give thoughts for Jenna daily. We are so thankful for everything everyone has given to us (prayers, donations, etc.), it means so much to us. Talk soon!
Love, Jenny, Justin and Jenna