Sooooo....let me start by saying I am sorry for not updating before now. Things have been moving right along since Jenna's last visit to the hospital. It is amazing how one little girl can change so quickly. Since her last surgery, she hit her first growth spurt-ever. This was major for her-she gained and grew at the same time-so proud of her!!!! She has battled a few illnesses here and there and has started talking quite a bit. Lil Miss was quite demanding before(when she was non verbal) but you should see her now-she can tell you what she wants and she is not shy about it!!! Haha!! We have had her specialists still coming into the home(speech and development) and she has made huge leaps and bounds in the last few months. It is amazing to watch her change every day. She is hitting milestones I never thought were possible. That may be funny to hear, but when you have been through as much as we have, you would understand. We have seen her cardiologist here at home a couple of times since making it home. She has done well for the most part except a little scare she gave me with shortness of breath and activity. Nothing short of a medication change and she was back to herself. She just enjoys keeping mama on her toes. :)) In March we made a quick trip to Cincy to see her lung doctor, Dr. Boesch. Since coming home in December, we had lowered her settings as much as possible and this trip was to discuss stopping the ventilator at night all together. During the visit it was decided to make a trial run off the vent to see if she was strong enough to not need the requirement any longer. The first few days were a little rocky, but guess who pushed on through. That's right-Lil Miss decided to be a rockstar and press on!! She has been off the vent now completely for six weeks and even went through an illness and did not need to go back on. We are so proud of her!!! We are now back up in Cincy this week for additional procedures. Yes it's that time again, we are having another heart cath in the morning to see how she is pressing along since her surgery in November. She seems to be doing well physically, only on occassion do her oxygen levels dip at night, but we think it is related to being tired(which is to be expected). Hopefully we will have good results tomorrow. Once she gets through her 24 hours stay after the cath we are moving to another unit in the hospital for a cap trial for 48 hours. This is where they monitor her as to if she no longer has the trach to see if she can handle it. If all goes well we will go home "capped" and if she continues fine then we will return at the end of June for a scope, possible decannulation(trach removal). Let's all cross our fingers Miss thang follows the rules. She and I have already talked about it-haha. We are also having a scope tomorrow so hopefully that will be fine too.
So based on the pics above you can follow along with how well she has been doing. My computer downloaded them backwards so I apologize if it is confusing. She has changed so much-such a big girl. She now weighs 31 pounds 9 oz and is 37 1/2 in tall!!!! So big!!! We are so happy she is doing well and I cannot believe she is 4-I feel like I was pregnant with her yesterday. So sad they grow up way too quick!!! Thanks to everyone for all the thoughts, support and prayers-sorry this is brief but like I said-life has been busy-things are crazy-she is wild and keeps me on my toes-so I don't have much time to blog!! I will try to do better! Love and hugs to everyone. I will post tomorrow as best as possible about her progress and the next few days. Thanks again
Love, Jenny, Justin and Jenna