Sunday, August 30, 2009

It's a kindergarten world.

Drew started kindergarten this past Monday. How has five years gone by so fast?? He loves it!! I did not shed a tear. How could I cry when he was so happy. That does not bring tears to my eyes it bring smiles to my face and heart. His teacher seems really nice and we all like her a lot. I hope the rest of the year goes as great as the first week. I only hope they improve parent pick line, it's insane. We are thinking about the bus but it does not really help us out. Our major issue is Rylee's schedule. If she were a healthy normal child I would just suck it up. We will decide in the next few weeks what we will do. If the bus stop was at our entrance and not the first, all would be fine. Since it's at the first, I would still have to take Rylee with me. The bus also gets here way to late to get her down for her nap. We have a few friends who have offered to pick Drew up for us. I will see how this week goes and make a decision when we get back from NY. All in all a wonderful start to a new school year.

Wednesday, August 19, 2009

Here we are 2 weeks post op.

The first week and a half was rough, really rough. Rylee cried almost all day and would only let me hold her. Her hands and feet were so black and blue from all the IV attempts, her back sore and both legs, poor thing was miserable. I'm happy to say that we are now pretty happy and content but she still won't get down, walk or go to many people. She is petrified of everyone. Anyone she does not know that is around her brings on a crying jag. Oh I how wish she was not so scared of people. Everyone to her is a monster. I hear Mom's say all the time to their kids that "Monsters are not real", "it was just a bad dream." Monsters are real to her, they are the entire medical field and them some. Sad, truly sad that she is this scared, heartbreaking. We have a week full of apts this week. We are taking a break from speech therapy. Rylee hates it, once again it scares her. The therapist feels at this point we are not getting anywhere because she just shuts down. We agreed to end our 2 sessions a week and re-evaluate in 6 months. I am happy with the progress that she has made in the last year though. She has gone from a 0-3 month level to a 20 month level and she is 30 months. Still behind but not nearly as severe as before. Today we had PT. The physical therapist will only being seeing her once a month. She won't let her touch her so we are limited in what we do and that is my field so we will work together to come up with an at home plan. We were given a walker for Rylee today. This brings me so much sadness. I will do whatever we need to help her and if this is what she needs I'm fine with it. I hate that I am now looking at another visible reminder that our daughter is sick. This is not going away. The trick is to get her to use it, ha should be fun. We also had neuro apt on Monday and we have started her seizure meds. James and I just could not come to a decision on what to do. We decided to start the meds see how it goes. If she does not improve very much then they will admit her into ACH and have EEG study done. It has been total craziness.

This weekend we are going to take Drew to Disney and leave Rylee with my Mom. It's really hard to leave her but Drew needs us too. This has all been so hard on him. A little Mommy and Daddy only time should be great for him. He starts School on Monday. He is so excited. How did my boy become old enough for kinder???

No matter what Life is Good and we know that so we live it to the fullest:)

I want to thank my family and friends for all their help these past two weeks. From watching Drew, cooking us dinner, taking Drew to camp for me you all are awesome. Thank you so much!!

Monday, August 10, 2009

Gone and Back, thank God!

Last Tuesday we left for GA to continue our quest of trying to completely figure out what's going on with Rylee and to figure out if there is anything we can do now for the Mito. We knew this was going to be a rough trip and it was. Wednesday was apt after apt and they did not go well. The first apt was with anesthesia which was suppose to be quick. That turned into an ordeal and a half and Rylee lost it. Rylee has a lot of issues with anesthesia and they all decided that they needed EKG's Echo's and a slew of other things. Rylee was a screaming lunatic. She hates the entire medical profession and these people and hospital were all new. This apt made us late for the next apt. Not a big deal though because the next apt she down right refused to do. I knew that she probably wouldn't do it from pictures on another persons blog that had been to Dr. Shoffner already. They put this big tube with a blanket all around you. Rylee wouldn't even let them get it down. Every time they tried Rylee would put out outstretched hands. After a few attempts and a balistic child they called it quits. Next up the wizard the wonderful wizard of OZ. Dr.Shoffner was next up. I was well prepared for his type. I had talked to Amber about her visit, Dr. Warren is no different and I worked in the medical field. He was much better then I expected and Rylee was much worse. She was pulling her hair out, my hair out, throwing things, screaming and hitting. Dr. Shoffner dealt with her great. He knew it was a long day and that this was only because she was so upset. He had to stand across the room and leave the door open and every once in a while she would give us a moment of peace. I knew that Dr. Shoffner would not be giving us many answers. He likes to run all of his test first. That means 3 more months of waiting. He said that there is definitely something else going on because her weight is so low even for mito. With the gj-tube and all the calories she gets she should weigh a lot more then 13pds 11 ounces and be longer then 28 inches at 2 and a half. We discussed the TPN and he wasn't really excited about it. He said that she would probably gain adipose tissue but not muscle and skeletal growth which is what we really need. Fat tissue would hurt her not help her. Thursday was surgery day. At first we thought we were staying over night because of the anesthesia. Last minute they decided to change how they were going to do things and that we would be able to go back to the hotel, woohoo:) Everything went well. Poor Rylee is miserable though. They had an awful time getting an IV and blood so 10 attempts later, 2 bruised and swollen feet, 2 bruised and swollen hands they were able to get one in. They could get the blood from where the IV was so they had to get it from the femoral artery on the non-surgical leg. The lumbar puncture took 2 times before they were able to get. All of this equals one sore miserable child:( It's so hard to see her like this but, I know it will pass. As everything else we are going through one day at a time. The only good thing about waiting 3 more months is we get a little break from the medical world for a bit.

I'm a bit of a daredevil

About Me

I'm a Mom of two wonderful children, Andrew(4) and Rylee(1). My husband and I are originally from NY and moved to FL 6 years ago. I love it here and won't move back but this is where I live my home will always be in NY. When I die someone better fly my ass back there to bury me. I love hanging outside with the kiddos, sports, working out and taking pictures.