Thursday, January 28, 2010, I know I am slacking! Get over it! There has been a lot going on around here lately...I guess I should get you guys up to date! We just went to a clinic visit for each of them on Tuesday the 26th (Ashlee's birthday!)
Lets start with Jordin! She is now slightly over 14 lbs...good for us! (not good enough for the doctors, as always!) She is still under the 3rd percentile (not considered to be on the growth chart at all). She is now taking 30 cal/oz formula in hopes of boosting her weight. She LOVES to eat our food now! She is such a pig! lol So hopefully that will help with some weight gain. She has been really healthy lung wise lately until just a couple days ago she started getting congested and coughing a little now. She seems good after her nebs and will be starting a nasal decongestant spray soon.
She is a very wiggly little girl. Loving to crawl around and get into things and just starting to stand up by some things...won't be long before she starts walking! Yikes! She is a Mommy's girl though, and if I am nearby, I HAVE to be holding her or else she will just sit there and whine til I come get her. SO, best for me to stay in the other room! lol
Now, lets move onto Ashlee. She has been having a bit of a rough time lately with a cough. She is having a lung exacerbation from her CF. She has been on multiple antibiotics and breathing medications over the last couple months. 2 weeks ago she was put on inhaled TOBI and oral Cipro (which she hates the taste of!) and we were given 2 weeks to get rid of this cough or she would be admitted for 2 weeks of IV antibiotics. She starts with the Albuterol inhaler, then inhaled Pulmozyme (10/15 mins), then inhaled TOBI (25/30 mins). All this is done while doing her Vest for 25 minutes (morning and night). A session of Albuterol and Vest are also done in the afternoon.
Anyways...our 2 weeks is up today...BUT at clinic on Tues, they gave us another try and another 7-10 days! YAY! She has crackling in her right lower lung. She had x-rays done that day...waiting for results. Hopefully they don't see more than what is heard. They have extended her 2 weeks of Cipro to 3, and her Tobi to 28 days instead of the 2 weeks. They started her on Hypertonic Saline 7% inhaled med. This takes about another 15 minutes! Let's just say she spends ALOT of time doing treatments lately! She did this new neb once at the clinic to make sure she did not have a reaction to it, and she has done it once at home so far. I makes her cough so hard she is choking, we have to break cuz it is kickin her butt!
It is so hard to watch her go through all of this, but I just remind her that it will be MUCH worse in the hospital if we can't tackle it at home. So we gotta keep our heads up and keep pushing! She will go to the pediatrician next Friday to listen to her lungs again and decide if she has improved or if there is still crackling in there, she will be admitted for IVs. :o( Everyone, please pray that this new med works! I don't know how I will handle her in the hospital! I will be sure to keep you posted!
Good news! My baby girl is 5 years old now! She has had a wonderful week. Even the clinic gave her a monkey game for her b-day while she was there! She had birthday with mom, dad, and Jordin on Tues, then she was then birthday girl at school on Wed, and tomorrow she will have a party with her friends at Chuck E Cheese! She is so excited and so am I! Can't believe she's 5 already!

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