I have to say I have never been so glad to see a Spring Break as I am this one! I have been traveling for Speech and Debate tournaments for the past five weekends and it has really put a huge dent in my ability to get ANYTHING done. And I do mean ANYTHING! I have a pile of laundry waiting to be done that rivals the surrounding mountainsides, I have mail and bills to go through, I have to get all of our paperwork together for taxes (ugh) and I am realizing that I don't really have any more structure or organization in my life then I did on January 1 of this year...which is a giant fail on my part. I was really excited to be able to spend a week catching up and getting things in the house and my life all cleaned up and ready to roll for the remainder of the semester...but, I am now facing a sick husband (who can have no contact with the Bean while ill...one of the joys of an immuno-suppressed child) who is living in our guest bedroom so I don't get sick, yet another trip to Palo Alto tomorrow for a GI appointment and the possibility of Bean having to get a feeding tube. This is where the Grrrrrrrr comes in. But, let me start at the beginning.
I am off for one week of school for Spring Break. I have a ton of grading to do, as well as paperwork for the Speech and Debate team, as well as some planning for upcoming projects, so I don't really "have a week off," I just have a week off from school, so no class planning, no office hours, no classes, etc. Which is actually a huge relief and definitely makes getting caught up a greater possibility. I thought the week was going to be Palo Alto-free as well, but at last week's clinic appointment, Bean only weighed in at 13 lbs. 6 oz. Only 3 oz. more than at her appointment two weeks prior. She had been a little inconsistent in her eating, so we mentioned that to the team and they sent in the nutritionist. She told us we had to go back to GI for our follow-up appointment that we never went to after October. I thought that since Bean was eating normally through the mouth and not having any stomach issues, we didn't need the follow-up appointment, but it seems she is falling further and further below the 3rd percentile growth curve for her age, and they want it taken care of. She is super active, doesn't seem to be having any digestive issues other than some bouts with gas and a few bouts with diarrhea which they said the Magonate would cause, so on all accounts, she should be eating and gaining weight and growing. The nutritionist mentioned that she may have to "go back to the feeding tube to insure she gets more calories." My heart dropped. Bean has been through so much that a feeding tube should really seem minor to me, but it has been the worst thing I've had to deal with since the transplant. The broviac line was bad - especially changing the dressing - but, the feeding tube was worse. Bean has an aversion to any line in her and tends to pull them out as quickly as she can figure out how. She pulled out ventilators, IVs, main lines - she did it all when she was in the hospital. And when she got out of the hospital with a feeding tube in her nose - she pulled it out too. Twice. I was able to put it back in once, but the second time, I could not do it. I broke down crying, gave up and ended up having to have a nurse put it back in during a clinic visit. I was so happy when they said it could come out and stay out. And now I have to face the prospect of her getting another. It really puts a damper on my mood! I am hoping we can find an alternative...any alternative.
This also means I lose an entire day of my week - but, at least the appointment is not until 11 a.m., so it doesn't require too early of a departure or an overnight stay, which is good. But, I am feeling really overwhelmed with the amount of stuff I have to/want to do and the short amount of time I have to do it all. I really wanted to do a thorough cleaning of our house - a massive purge of unneeded stuff, a much-needed baby-proofing of our house, and some Spring Cleaning. I also want to get the garage organized so I can store stuff out there and find it when needed. Finally, I need to clean out and organize the guest closet, which holds all of my scrapbooking stuff as well as home office paperwork and files...which are all a neglected mess. So, although I have a full week off of school, with the home stuff on top of the catching up with grading and paperwork, I feel like a have a very packed week. Oh - and I have a lot of TV on my DVR I would like to get caught up on as well! :) And on top of all this, my hubby came down sick a couple of days ago, which means he has to hole up in our guest bedroom, staying away from me (so I don't get sick) and staying away from Bean. Which puts me on my own with the Bean until he gets better. And she is a handful right now. She has not been sleeping great - last night has been the best night in three nights - with her sleeping from about 11 p.m. until 4:15 a.m. without interruption (or without her crying loud enough to wake me out of my exhausted sleep). The night before that was horrible, with her going to bed at 9, waking at 11:30, 1:15 and then up for good at around 5 a.m. At least this morning, she went back to sleep after waking at 4:15 a.m.! I am sure that we have made some huge error in Bean's sleeping habits and now will have three or four years of fitful sleep cycles, but its hard with her being underweight because if she's hungry, I don't want to miss out on feeding her, even if its in the middle of the night. And its also hard because I think she has some issues with nightmares/terrors and I don't want to not go to her if it is that, as she needs the comforting. Its just hard!
Bean is doing great the past month as far as reaching milestones - she finally started pulling herself to sitting position from laying down and now she can do it in record speed. She can also pull herself from sitting to standing position with the aid of a piece of furniture. She cruises all over the living room holding on to the furniture. She still is not really crawling, although she will push herself backwards across the floor in a crawling position, so I think she is getting closer to crawling - hence the big need for babyproofing.
We were interviewed by the Butte County Far Northern Regional Center last week and they will be in touch with us to send out a Physical Therapist and Occupational Therapist to evaluate whether Bean is significantly behind developmentally. For those unfamiliar, the State of California has regional centers that evaluate and provide services for children 1-3 years of age who show significant developmental delays. If Bean is at least a third of her age behind, they offer in-home services for physical therapy and occupational therapy to try to get her up to speed. Although I would be happy to find out she is on track developmentally, if we have to have the therapy, it would be nice to have it here at our house. Considering the amount of travel we already have to do for her heart clinic and biopsies, it would be nice to have something right here at home! They have not called for scheduling yet on that. Knowing my luck, they will want to come some time this week as well! But, it will be good to get her evaluated.
So, that's my life right now. Its been the usual, more-or-less - too much to do and not enough time to do it. But, so it goes. Here's hoping the Spring Break is productive!