There's a 99 percent chance we are moving to Boise by the end of summer. An unexpected promotional opportunity has presented itself with my job, one I can't pass up. Our biggest hurdle is H finding a new job, then selling our house (that we just bought a year ago), and the getting girls settled and Ashlynn in a good school district before she starts 1st grade. It's all overwhelming, but I'm very hopeful.
Post by TrudyCampbell on May 9, 2016 21:14:24 GMT -5
We had our annual genetics appointment today for V. It went well, but my head is spinning. So many big decisions to make before she enters kindergarten!
Medically, she's doing great, so that's a relief.
And this is maybe flameful, but I asked about her short hair and she assured me it is not part of her condition and she's just been blessed with the slowest growing hair ever!
TrudyCampbell glad she's doing well! That's not flame full at all! I used to always ask Em's neurosurgeon about whether or not she had to shave her head before I asked the big questions. Lol
I'm having a baby sometime in the next 5 weeks and I still can't believe it! Despite all that has happened and how obvious it is that this is really happening, it still hasn't sunk in.
G has been invited to participate in the screening process for the phase III peanut patch clinical trial. If she's selected to take part she'll wear a small patch on her back that we change daily for a year that could partially desensitize her to peanuts. We'd still avoid peanuts but she'd be able to safely tolerate a small amount -- which I hope means SO much less anxiety for me. Her first screening visit is tomorrow morning.
I'm having a baby sometime in the next 5 weeks and I still can't believe it! Despite all that has happened and how obvious it is that this is really happening, it still hasn't sunk in.
How was your day?! Are you feeling better?
I am feeling good today. My readings were very low during the day, which was wonderful. Sydney stayed with my parents all day, so I was on the couch and only got up to go to the restroom and get food. I cut up chicken to bake and it jumped up, but went back down low after resting. It's amazing how little activity it takes to make it jump up. My doctor wants to see me tomorrow (my appt wasn't supposed to be until next week), so we will see what he says about my care from here on out.
Jane's diagnosis will be given on May 23rd and I'm both looking forward to this day and dreading it. I've had a bunch of assessments for her done already but this is the one where she would receive a medical diagnosis.
Today was hard, we had a few people come here for meetings and assessments for her transition to school (she turns three in four months!!) and she wasn't even able to do the same eval she did a year ago. She literally couldn't do any of the tasks, because she is not interested or motivated. She scores as a baby would, like an 8 month old or less. She was able to do some of the tasks last year. All of the questionnaires I fill out are no, no, no... She doesn't have a single word, doesn't point, won't stack a block, etc. And lately she is just up for hours and hours, like 4 hours in the middle of the night because she can't settle. She just lays there clapping her hands and doing a rhythmic sound with her voice. We had to move rose in Elias room because of this. I have an appointment with a pediatric neurologist that will help me with the sleep issues but it's not until July 20th. There are also a lot of behavioral problems going on, she will get really upset and try to bite anyone and anything, even herself. She bit her knee the other day. She just gets overwhelmed and doesn't know what to do.
That got long, sorry to ramble. Just want my baby girl to be ok and not struggle .
jnoellee, it must be so hard to see your child struggle. I'm sorry that you and Jane are going through this. I hope the diagnosis brings you some closure or finality and her therapy helps her make progress. You have been doing a wonderful job supporting and advocating for her!
I'm so sorry, jnoellee. You are such an amazing mother to her. I hope the diagnosis helps clarify things and get her more assistance and therapy. Hugs!!