It's hard to believe that Sophia turns 5 months old tomorrow. Still tiny weighing in at 6.8 lbs and almost 19 inches long. These past 5 months have been a defining time in my life with constant ups and downs. Each week is filled with doctor upon doctor appointments. If we arent out of the house visiting doctors in their offices or in clinics we have therapist at the house. It's been hard, really really hard to stay strong and persevere through all the obstacles that are thrown our way. There are days when I'm constantly on edge watching Sophia's body language to try and stop her from vomiting before it starts. Then there are days when it feels like she's making huge leaping steps to overcome her GI issues. On days when I feel like giving up I pop in my "Sophia" CD that's full of songs that help inspire me to get going. Two of my favorites is "In my daughters eyes" by Martina McBride and " I didnt know my own strength" by Whitney Houston.

I've been in the works of starting my own business because with Sophia being medically fragile there is no way I can work for someone else. There are just too many appointments each week for me to get a job. So I've done almost all I can do and now I have to work on getting clients but thats an issue all on it's own. I just dont know how to balance it all. Im home alone during the day with Sophia and I cant call around to try and build my client base because if she wakes up screaming I can surely count that person out. My husband tries to get out of the house as much as possible. I know it's all still sinking in with him because men just handle things like this different but at times I just wish he would hurry up and deal with it already. One day I totally jumped on his case and told him that if he wants to be out of the house and away from us so damn much then he needs to just pack his things and go. I didnt mean it of course but the stress of Sophia constantly needing attention on top of having two other young kids builds to the point of no return. I cant go to the store without getting a call 30 minutes after leaving the house with my husband in a panic and Sophia screaming in the back ground. She's spoiled to me and only wants me but it's his own damn fault for never being around. Common sense would tell you that if your own child cries everytime you hold her then maybe you should spend MORE time with her. She's only spoiled to me because I'm always there to hold and comfort her.

I've taken Sophia out on several small and short outings now. Usually after a doctor appointment I'll run into a store to grab something needing for the house. At first it was hard but it's gotten easier. If you've followed my prevoius blogs I was concerned about the looks and the whispers we would get. Well it's a constant thing when we go out. At first I acted as though I didnt notice but now if an adult is staring I look them right in there eye. When they notice what I'm doing and that they've been caught they all get this ashamed look on their face. Some people will pass us by and smile but you can obviously see the question marks on their faces. I cant count how many times I'm asked how old she is and the response is always the same. "Oh she's so tiny!" I'm tired of saying that she was preemie or she was born with a syndrome that will cause her to always be smaller than her peers. I think I'm just tired of explaining whats going on with her. Awareness is key.... Everyone knows about Downs so when you see a child with Downs you dont question or say anything to the parents because you know about the condition. May 8th is CDLS awareness day. I'm going to contact my local news media in hopes that they will air a small segment on CDLS. I'm also going to make a bracelet for each person in my family with the letters CDLS in hopes that when people see the bracelet they will ask what it stands for and the education and awareness continues. I plan to try and sell some at an event thats coming up the first weekend in May along with other jewelery I've made. All money earned will go towards Sophia and put into her savings account we've established. After all, one day I will not be here so I have to begin thinking about her future and making sure she's financially secure for whomever takes over her care.

Sophie seems to be developing right on target for her age group. Her corrected age is 3 1/2 months and she's reaching all the milestones. She rolled over on 4/11 from her back to her tummy and she was so mad at herself afterwards, lol. She's smiling and laughing and cooing. She loves to be kissed on her neck! Yeah that will surely get her in trouble one of these days, lol. Every time I kiss her on her neck she looks at me and gives me a huge smile. She tries to reach out for me with her arms and when she's fussy if I pick her up she stops crying. She's doing well with her hearing aids and doesnt mind wearing them. The only issue is that when she has them on she's constantly messing with her ears so they fall off. It's a constant battle to keep them on.