There is no doubt about it, Clara is just so beautiful. Just like her sister. Everyday I see Madeline in her. They both love each other very much, and in every small and big way they are finding ways to bond and spend time together. 

Clara is 19 lbs 13 oz. Her nutritionist wants to slow down her rapid growth of weight gain, for her development. They like to keep CP kids small, to help with moving and learning new things. Soon we will ween her over night feeds to 10 hours, and of course three bottles a day. Finally such a great problem to have. 

She is now very busy with toys, especially with her hands. She wants everything she can reach for, books, toys, my phone, suction catheters, our hair. Opening and closing is still very hard, so her movements are still alkward but very intentional. I think her vision is getting better, because she purposefully touches things exactly where they are.She is however having eye surgery in September to correct both lazy eyes. 

She is getting back to her old self on her belly, since the seizures and surgery. We are still working on sitting. Some days are better than others. Because of her CP she lacks the core strength just to balance her self, or prop her self for longer periods of time. But nonetheless we never stop trying. Her strides are small and slow, but they just make us all so proud as if they were huge. 

She is up to four hours a day in her AFOS, leg braces. Eventually they will be worn all day. Now she hates them so, and whines on an off when they are on. We are hoping to get a stander soon, which she will need these braces for. Just during the times we work on standing, she loves to see the world from that perspective. I think the stander will be a great thing developmentally for her. 

We are also waiting to get a high/low chair for Clara is sit at and play and eat. It will offer more support, so she is ultimately use her arms and hands better to play. Both pieces of equipment are huge, so that makes me anxious. However I know how much she needs them, so will make room. 

Clara is still receiving PT, OT, and vision therapy. We just started with the feeding team at Chapel Hill, and soon will start SPEECH therapy. Clara can not talk nor makes noises, but her other therapists believe she may be ready to learn to find other ways to communicate, possibly with switch operated toys. We will see. I look forward to learning more about that. 

She is just getting over another trach infection that requires an inhaled antibiotic. That has been no fun, especially for me as whoever has to give it for 20 minutes has to breathe it in as well. She just plays throughout it, grabbing and knocking it lose as much as she can. She feels better now, but last week was sick. 

At our last pulmonary appointment they mentioned not to be in a hurry to get the trach out. That was very hard for me to hear, and through out the rest of the appointment I couldn't hear really anything else. Thank goodness our nurse came with us, who listened alot better. 

I assume they are worried about Clara's GERD issues, and her reflux. For obvious reasons this issue has to be resolved before they think of started reconstruction surgery on her airway. They will do another GI scope to look for eosinophilic esophagitis. She had this looked last September during a Bronc and it wasn't found. This would not be good, and would for certain delay a deccanulation for a very long time. 

Jason and I had just had our hearts set on the trach coming out when she was still small, like two or three. But that hope just seems to keep getting further and further away of being a reality, as well as the other many hopes we have for Clara's condition(s).

I still pray for miracles, that God would heal her and give her and us relief. However I catch myself praying for them less, I guess because it seems naive. I no longer set goals for when she may start doing something, or for when she will be ready for surgery. The reality always hurts, so I ride out each day and look for all the small things that she does and that brings me joy and there is a lot of that. I do still prepare myself constantly for how it all may be one day with her,but that still only makes me anxious and stupid because God only knows the plans he has made for her and us. And while I do secretly beg for Him to change this, I have to trust that everything will be okay. 

We are going to the beach soon with my family. This is something I always look forward to, but last year it was really hard. We are bringing a nurse for a few days to help out so we can spend sometime together on the beach instead of Jason and I taking turns inside with Clara. We do think she will like the being outside more this year, and do plan on making her very much apart of everything we can. 

After two appeals with Blue Cross Blue Shield, they are still upholding their decision on weening our nursing hours in half, 8 hours a day. In July they are deciding if that will stay in place still or if there will be no hours  at all. We do plan on making a third appeal, but it just doesn't seem very hopeful. We are getting help from CAPC for the time being. 

Tomorrow is July 4th and I plan on spending it with the girls, Jason and my mom for her birthday. Madeline has asked to see the local parade, and see fireworks. So we will do just that. I hope everyone just spends this day doing something fun, celebrating our great country,  with the ones you love too.