We had a busy day today at Rancho Ramona. She coughed out her NG tube at about 5:00am and we’ve been truckin’ ever since.

Her speech therapy this morning was without incident. She continues to show less and less interest in her bottle so we are going to be starting her on some solid food, hoping that she might be able to go from NG tube to solids and a cup at some point. We will continue to offer her the bottle, but as usual we’ll try and keep it positive and not push it.

Amazingly, her blood draw was a cake walk. I had myself geared up for big time drama, but it was one stick, we’re done. They are checking her calcium levels which maintain the electrical conduction in her heart. We will use the results to adjust her dosages if necessary and retest.

The big event today was her three-hour Early Intervention evaluation. This is an affordable state program where speech, physical, developmental and occupational therapists come to your house to work with your child. It’s especially great for us because of the whole baby-palooza situation that makes outings difficult.

Her evaluation today showed a few things. Physically, meaning core strength, fine motor skills, head control, etc., she is significantly delayed. She is at about the level of a six week old. I suspected this because I remember what Simon could do at this age, but it was a little hard to hear it from them. Cognitively and socially she’s not quite as far behind, but she is still delayed. We’ll be having three appointments a week plus one developmental evaluation a month to work with her and educate me so that I can provide as many opportunities for development as possible.

The causes for her delays are hard to nail down, but are probably due to a combination of three, maybe four, different things: Her 22q11 diagnosis, her prolonged hospitalization, her ongoing cardiac condition and a posssible brain injury. This last is the least likely but there is a chance that she suffered a low oxygen incident either before the surgery or during the transition on or off the heart/lung bypass machine. I think it’s mainly her ongoing heart condition, which saps her energy and leaves her with little interest in all but essential activities. And the 22q11 diagnosis means that she might be wired to develop at a different rate.

Tomorrow we have an appointment with the pediatrician, he will weigh her and we will discuss the big picture of her care: some cranial issues, feeding and swallowing, surgical direction, her wean plan, an ENT consult, scar care, nutrition, etc. Pray that I will remember all my questions (I wrote them down, but you know how it is when you get in that little room, your brain goes numb.) Pray extra double that I will remember the answers. And pray that Ramona is a big fatty.

Love , Jane.

monaretrospective.jpg