While everyone else is in Hawaii...

This week my academic discipline is having its national conference in Hawaii... so this is what I've been up to while my colleagues and students live it up in paradise!



You may think she hated the peas, but really, she ate them and does a great job with the spoon. So far she has been okay with all the veggies EXCEPT green beans. She fake "fell asleep" when I tried to feed them to her one time. The next time she let me fill her mouth with them and then COUGHED them in my face. She is a "spirited" one, that girl! Today, she gets to try her first fruits. I really hope I can find something, food or toy, that she just obviously loves. I want to see Gesina experience a greater range of positive emotions.

So the hematologist did talk about Gesina having the Prothrombin gene mutation. I got tested and I have it too. This means she and I are more susceptible to blood clots so whenever a drug has the side effect of blood clots, she and I will really need to pay attention to it. We are slightly more likely to get a blood clot in our lungs or in the vein in our legs. Main things we need to do are be healthy, be sure to walk around on long flights, and be forthright about having this condition for surgeries.

The last week has been consumed with finding child care for Gesina. Not surprisingly, individuals' are afraid of her condition so I got very few applicants. Of that lot, most were older women doing it for the money. Well, I hate to tell them this but, I don't have a lot of money! I did luck out though when I happened upon a daycare that specifically caters to special needs babies and kids :-) The center does all the therapy exercises and stretches during the day so I don't have to try to catch up with it all in the times that I have her. They are also going to assign one person to Gesina to ensure she gets all the therapy, etc. that she needs. Daycare didn't seem to be an option for me because I teach at least one night class a semester. Well, I found a college student interested in being an early intervention specialist with no experience in that field yet. She will be taking Gesina on while I teach my night class. It may not be ideal to have daycare and a sitter but I have a team that all seem motivated and interested in Gesina's development so my fingers are crossed that it all works out.

Gesina was seen by the NICU development clinic and the big message was... I need to fire my Physical Therapist. My current PT doesn't think Gesina needs PT every week and wants to cut down to once every other week. Her rationale is that Gesina needs to work on being able to calm herself before PT can do her any good. Well, I've been annoyed with my PT from the first day I met her because she has erroneously determined Gesina has no gross motor skills at all and many other horrible things. We (me and my babysitter) tried to tell her that she was overreacting and that Gesina has many of the skills PT claims she doesn't. In fact, we have even videotaped Gesina doing the activities PT claimed she couldn't do and showed my current PT these videos. The OT at the NICU clinic who did Gesina's assessment says Gesina needs PT more than ever right now as she has obvious need for gross motor skill development in this critical time in her development. Gesina is at risk of developing cerebral palsy and with PT and OT, we have until she is one year old before they can determine whether or not she has CP. I have no idea if we can use therapy to avoid CP as an outcome for Gesina, but I'm going to do everything in my power to try to avoid it if I can. Having my current PT back out of weekly therapy because Gesina is fussy seems like a cop out. It's her job to be able to calm Gesina enough to help her benefit from the therapy. My mantra for Gesina's therapy is we do what is best for Gesina... not what she likes and not what is easiest for us, we do what is best for her. If that means ticking her off or dealing with a fussy baby, so be it!

Here's a poem that was shared with me that really does capture what it's like to be a mom to a special needs child. I encourage you to give it a read and after you read it, you'll understand what I mean when I say, I like "Holland"... The poem is called Welcome to Holland!