Where does the time go????

I can not believe how time just flys by. Drew started Pre-K this week!!!! He totally loves it and that makes James and I feel wonderful. We toyed with the idea of pulling him out of the school he had been in the last few years. They have a program here called VPK which just means that it's free. TJ where he goes now is VERY expensive and with all Rylee's mounting medical bills and the fact that the school is just way over priced made us think we would pull him and send him to VPK. After much research we were not thrilled with any of the VPK programs. The curriculum they follow is way behind what he has learned already and the last thing Drew needs is change. TJ has done everything in their power to make sure Drew is doing well and feels safe, secure and loved. He has had a lot going on in his little life the past 18 months, poor kid. He just thrives there so we decided to stick it out another year and we are beyond excited that we did. If you could see him everyday you would never second guess keeping him there. Rylee actual starts Mommy and Me in September. It feels like yesterday that I was there with my little man. Soccer starts again on Monday. We just went and bought new cleats. I love watching him run around. I'm not very excited that they are now at the age where they have night practices but that's what happens as they grow. Nights are the worst for us so we will do our best to make this work and we have friend who offered to take him to practice if need be( thanks Leah) Hopefully James and I will figure it out so that one of us can be there. It's really hard for Drew when we miss these things because it always goes back to his sister being sick:(

Tomorrow I leave to go to Tampa to do training course with Robert Jones( make up artist to the stars) Since joining Mary Kay Robyn and I have done work with brides so I need to learn more because we all know how good I am at that stuff(NOT) It is a totally crazy career path for me but it fits into my schedule and so far is financially beneficial. I will go to Tampa tomorrow come home Saturday night then go back with Rylee on Sunday. She has to be at All Children's on Monday morning. Rylee girls seems to be doing ok. Last week we found out she has an infection so she is on antibiotics for that. We also found out that she will need leg braces. She just is not able to walk on her own. When she walks her hips externally rotate and her knees hyperextend(I know all my Towson peeps will understand this) Thursday she will finally have her speech eval, thank the lord. She really needs this. So it's safe to say we have a very busy medical week ahead of us. I wish you could all see Rylee in the last week or so she totally deveolping a personality, the girl is funny but don't tell her NO!!! That pisses her off beyond belief. She loves to give her brother loads of kisses and hugs, to cute. Ok, off for the night. I will try and update next week after Neuro, Gastro, brace and speech eval.

Janet

Home and hopefully staying here for a while

Ok, so being home has been a little on the rough side. Trying to balance the feedings with allowing time to be able to go out and do things with Drew has been a challenge and after her Dr's apt where she did not gain weight we have increased the amount of hours she needs to be on the tube. It would not be so bad if she was able to wear a back pack with the pump but she can't so she can only crawl so far away from us and we always have to be with her to carry the pole where she wants to go. If she wants to walk holy moly that takes talent. She holds both our hands and we have to figure a way to maneuver the pool all at the same time, not easy. Dinner time is the worst time for us. One it's so hard to cook because she's on the tube then and that is usually her cranky time. Thank you to our neighbors Gail and Tim who made dinner for us our second night home. On the other hand we are Soooooooooo happy to be home and in our own comforts. I will do this for as long as I have to as long as she is ok and gaining. Drew has been amazing and I can only wonder what this is doing to him. I worry constantly about that. All I can do is my best but I feel like it won't be enough. He is petrified that every time I leave his sight that we are going back to Tampa, poor guy. Ok, so for a Dr's update as I mentioned above she did not gain. At first I thought she did but after checking with Dr. W, she did not. My child who poops once every 3-6 weeks now is pooping all day. We are hoping that this is just because she can't handle the new stuff they have on, or that the flow is to fast. We have slowed down the flow but what that does is increase the amt of hours she is on. Right now we are 18 hours a day and by Monday could be up to 24. If this is still a problem after the changes in flow and formula things will not be looking to good. In that case there maybe a mal-absorption issue. I'm totally leaning towards the fact that she can't handle the resource 1.5 because she did fine in the hospital on pediasure. We will get stool cultures if we can just to double check. I have to check her every hour during the night so I'm a bit on the tired side. Rylee gets the tube disconnected and then all the food inside her and all the food in the bag ends up in her bed, not good. The one thing we thought the peg tube would help with was her wrapping the cord around the neck, this is what she did with the ng tube. Well, the other night I went in and she had the cord wrapped around her neck 4 times, what am I going to do??? This scares the crap out of me. Other then all this stuff we have spent the week trying to make it fun for Mr. Man. He goes back to school in a week and I don't want it to end on a sour note for him. We have had Stephanie over a lot. In the afternoons this is usually a lifesaver for me. They keep each other busy and it allows me time to focus on Rylee. We went to chuckie cheese with Deana and the kids and yesterday we had a playday at Deanas with Lucinda and Leah. It was great to just hang with everyone and hopefully we can start doing it more. Now all I need is a major MNO or just a NO does not have to be Moms. Oh well, I better go the fam is coming over for breakfast and then I have a MaryKay thing this afternoon.

WE ARE HOME!!!

I can not tell you how happy we are to be home. Lets just hope it's for a while. 11 days in the hospital was insanity, literally.

Friday

Sorry this is so late. Rylee would not let me leave at all until now. She is doing really well today. Yesterday was rough she was in a lot of pain and spiked a pretty high temp. Everything went well and we hope to be going home tomorrow. She is fever free and off the morphine. We all know how I am so you can imagine what she is like, one tough cookie. She has a little bleeding around the port site because she is relentless with wanting to pull it out. I warned the docs that this would happen. Having worked with Rylee for the past year they were afraid I was right and I am. We are now brainstorming on how to keep her hands off. She was vomiting yesterday too so we started her on pedialyte first then to kids response. Giving Rylee something new is usual not a good thing since she normally vomits it back up but the tube seems to work and she handling it well. Thanks for all the phone calls and well wishes. I will touch base with everyone once we are home.