msjorje: (Default)
[Error: unknown template qotd]Moms don't get a day off. Breastfeeding moms can't take most meds for sick. So... I'm pushing through a cold right now. Rest - gotta go to bed when they go to bed!
msjorje: (eyeliner)
Spencer's appointment was for 8 o'clock at the Children's Hospital. We arrived early. Then we WAITED. The hospital said the doctor was running behind, the doctor seemed to be blaming the hospital, but did say they were doing all special needs kids today. That means that, for instance, kids with a history of heart problems (this includes Spencer) have to have a full fledged Anesthesiologist. It can't be a PA or a nurse or anything else - the Anesthesiologist has to be in the room the entire time.

He couldn't have any food after midnight or breastmilk after 4 am. He was allowed to have sips of water this morning. Spencer asked for Mommy Milk a lot. At one point, he got so rambunctious that we were moved to a consult room where we couldn't bother anyone. Three-year-old bouncing off the walls? A nap was imminent! We finally got into a room where we did vitals, bracelets, gown... he hated all of it. He finally napped and then woke, still starving.

They finally, finally drugged him (Versed) at 12 o'clock. It made him groggy quick, but he was still not happy. It took half an hour for him to pass out. It was another half hour before they finally came to get him. I had given up and laid him down on the bed, so they were able to roll him out. In the past, I've gotten to carry him down the hall before handing him over.

The wait was a little over an hour, as expected. Spencer got 2 root canals on his top front teeth. They were then crowned with surgical steel covered with a white composite for appearances. 3 molars on each side were also crowned with surgical steel. Then he got a protective seal on the couple of still-healthy teeth.

He was given a steroid to help avoid swelling, pain medicine and anti-nausea medicine in addition to being on gas and an IV for the procedure. He took his own time waking, then nursed - a lot. Vitals were good and we left at 3:30. He walked (a very short distance) like he was drunk. He slept while I picked up Sasha & Elmo. He woke when we got to the grocery store and stayed alert for the entire shopping trip. He did keep asking for food. As suggested, we got jello and pudding. (Mashed potatoes were another suggested food.) He was still starving when we got home, but refused pudding and jello. He wanted ice cream. And so he had it, two bowls of it!

By 6:30, he was acting like his normal self and still wanting more ice cream. He ate some baked potato with butter and cheese like the growing boy that he is and doesn't seem to be in any pain so far.
msjorje: (dreads 01)
I had no idea lab results would be available so fast! I might have gone 2 days ago, had I known. We just went this morning around 11. I was frightened to hear the doctor's voice on the phone when it rang at 3! (Doctors don't call unless there is something wrong, right?)

Spencer has a "presumed iron deficiency." [This is because] he has Anemia + his MCV (Mean Corpuscular Volume or size of his red blood cells) is 53. Our Endocrinologist didn't have the normal range numbers in front of him, but he thinks the low end is in the 70s. (Google tells me the low end of normal for adults is 80.)

He even conferred with his best friend, a Pediatric Hematologist! His friend recommended Spencer take his iron supplement (currently ½ a Flinstone w/Iron) *twice* per day for 1 week, then reduce to the normal dose (½, 1/day). They want to re-check Spencer's levels in 2 weeks.

Let's see, I asked the Pediatrician about anemia (via email)! I even mentioned the hair eating to the Endo. I reminded him of that and he was actually kind of fascinated. Big thanks to connecting with other moms of children with DS via the internet! And pat my own self on the back for sticking to my guns and chasing answers!

He also suggested bumping Spencer's Atenolol up to a full pill, in hopes that gets up some rest! (which was what I called and asked to do!) Atenolol is a Beta Blocker being used to treat hyperthyroid *symptoms.*

Wow! Lots of info and new things to try! Spencer has already been taking Flinstones with Iron (1/day) for... 4 days. I wonder what his numbers would have been a week ago. Scary. Doctor said he noticed Spencer looked pale. Um... I make WHITE babies. They're always pale, so I guess I didn't notice.
msjorje: (dreads 01)
As of tonight, Spencer has started to initiate play! He has brought me a toy to wind, run around a corner and back to peek-a-boo, asked me to sing Itsy Bitsy Spider and even gotten between me and the dryer and passed items out to me!

He loves for us to play with him, he loves for Sasha to chase him and he'll chase her back, but... he is initiating this play with me tonight! I am beaming! This is a huge first for him.
msjorje: (Spencer)
Spencer has rolled over from his back to his belly, at least on the bed. I think he did it once in the floor. Perhaps it was a fluke because yesterday, he was ON IT! He was practicing, it was his sole purpose. He rolled from back to belly over and over again.

He also got his toes into his mouth!
msjorje: (mommy)
Sasha had her first dentist appointment on Monday. She did well. She doesn't have any cavities! Considering we were sucking at dental hygiene there for a while and considering Elmo & I have poor dental health... it was a miracle. Back in 6 months.




Meanwhile, Spencer has started teething already. I didn't expect it so soon. I've asked around and I can expect a LONG wait for his teeth to actually cut through (due to the DS). Most moms said 1st cut tooth cut around 1 year. One mom said 18 months. Another mom said her kid's first tooth didn't cut until they were beyond the 2nd birthday!!

He bites down on my nipple and more recently he hasn't wanted to stay on the breast. He will chew HARD on our fingers, too. I'm going to get teethers into the fridge as soon as I dig them out from storage.




Tyler also had a dentist appointment recently. She has gotten to a point where she has a lot of anxiety and refuses to open her mouth. We'll be going back soon and they will drug her to help complete her cleaning and examination.
msjorje: (Spencer)
I think he might be growing. He has been eating a little less and sleeping a little more.

Meanwhile, he has been VERY attentive these past couple of days! He will look up at my face and listen to me talk to him. It melts my heart! He also chatters! It is usually a good sign that he needs to be pottied, actually. I haven't been putting near enough effort into EC lately and am trying to do better. We did have 2 catches in a row today! He fusses when he pees, though. I'm not sure how to make him happier with it. Perhaps when he can sit upright a bit better he'll prefer a potty to being held. It is tricky to hold a newborn AND point his penis down while he wriggles!
msjorje: (fuck off heart)
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Currently: Balls Deep from the Cleveland Show

Earlier today and for the past several days: Beyonce's Irreplaceable
msjorje: (Spencer)
Nancy came back today. She did an evaluation. Normally they have to do this for the child to qualify. Spencer qualifies for services automatically because he has Down syndrome, but they still have to do the evaluation.

It was weird to deal with questions that cover babies from 0-11 months and not feel like Spencer is falling short... but yeah, he's not putting his hands in the air to ask to be picked up yet. He's only 1 month old! Then he'd have to "fail" 3 things to qualify. The wording just made me feel weird about it. It was kind of just a formality, but also good to see where he is on things. Nancy and I talked about some realistic expectations and how to help Spencer do some things, like make eye contact with me (which I'd love for him to do!).
msjorje: (photography)
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Alicia Goranson, apparently. I was once asked to autograph as her. I guess I rather looked like an adult version of her kid self.

Though my old boss once found a series of pornographic photos that he seriously thought were me at first! I don't know her name.

Oh, I also looked like Kristy McNichol as a kid.
msjorje: (Spencer)
Spencer's Sooner Start Resource Coordinator (Roy) brought a Child Development Specialist (Nancy) to our house today. We discussed how the service works and goals for Spencer's first 6 months. Nancy gave me a couple of activities I can start doing with Spencer NOW to help him toward our goals. Then I signed a bunch of papers. Nancy will come back twice per month for 45 minutes at a time.

Cool thing is, if I decide I want more / less visits or more / less time, it is up to me! She will also bring in Speech / Physical / Occupational Therapists as we need them.
msjorje: (starry night)
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I'd like to be cremated. I don't want to continue to take up space once I'm gone. I felt that way before minimalism, too! I'm not particular about my ashes. Funerals and whatnot are really for the living anyway, not the dead.

Hidey Boo!

Oct. 18th, 2011 09:44 pm
msjorje: (starry night)
My mom played this... more British(?) version of Peek-a-boo with her grand-babies. She played "Hidey Boo!" Sasha has been playing the game a lot lately. Just sitting with her in the bathroom and she was playing this... I very, very nearly cried. It is so sweet and I'm sorry my mother missed it.
msjorje: (pregnancy)
Spencer's echo-cardiogram looked good. No problems found!

Mom

Sep. 19th, 2011 01:08 pm
msjorje: (starry night)
After a few days of meaning to get to it, I finally opened up my Giftmas List early this morning... and realized I needed to trim my mother off of it. I do keep people on the list to whom I no longer give presents, in history columns. Still, I cut her off from this year and moved her down into the history section. It was a task I hadn't anticipated and it stung. I'm tearing up again just thinking about it.

She's still on my phone, too.
msjorje: (peaceful toy)
  • grocery shopping with my husband.
  • picking up one more binder for Tyler, in her favorite color.
  • fake crab dipped in garlic butter. (aka: fulfilling a craving)
  • getting my binder and dividers for Spencer.
  • starting organizing Spencer's medical binder.
  • Sasha going 24+ hours with no diaper (or undies or anything).
  • an amazing online support network.
  • a doula with whom I feel I can connect. already.
  • my husband's sense of humor.

Mom's Poem

Aug. 3rd, 2011 01:53 pm
msjorje: (starry night)
I want to have this somewhere for reference. I needed it for a friend today and didn't have it. It took me 20 minutes to track it down. This is the poem we chose to go in the programs at Mom's memorial service:

After Glow by Helen Lowrie Marshall

I’d like the memory of me
to be a happy one.
I’d like to leave an after glow
of smiles when life is done,
I’d like to leave an echo
whispering softly down the ways,
Of happy times and laughing
times and bright and
summer days.
I’d like the tears of those who
grieve, to dry before the sun,
Of happy memories that I leave
When life is done.
msjorje: (sasha)
History: I started EC'ing my LO when she was 2mo. I started over a hospital basin on the kitchen counter and sometimes just the sink. I got a BBLP and even sometimes took her to the big potty eventually. Shortly after her 1st birthday, though, I had knee surgery and our EC practices just went right out the window.

She is now nearing her 2nd birthday and I'm trying to get back on track. I'm pregnant and lazy, though. This weekend I've felt more motivated in general and today we had FOUR catches! I've been successfully catching the first pee of the day these past few days, but today I have a funny story to share...

I decided I wanted a fresh pair of jammie pants (about all I wear when home) so I stripped off the pair I was wearing, throwing my arms in the air, and touting "naked!" My daughter pointed at her diaper and (apparently) requested to also be naked. I removed her diaper and noticed it was nearly (if not completely) dry. So I invited her to go potty with me. We both went!

Being pregnant has it's benefits. I can pretty much pee on command at any time. It is so cute, though, because she tries to imitate me giving her cue, so we whisper "pst pst pst, pee pee pee." She seems pretty fascinated by the toilet paper right now and got up for me to wipe her today. Then she sat down and peed. lol
msjorje: (sasha)
Been awhile, hasn't it? Well she is still here, developing! She now says "No, mine!" and simply "mine, mine, mine." She also says "Ready, Steady, Go!" I'm not sure where she got that one but she really prefers for someone else to say it and then she runs somewhere and back.

She will pat and kiss my baby belly, but I don't think she really understands there is a baby in there. She loves to look at the pics of mommies and babies in my books, though. We identify the Mommies, Babies, and Daddies in the books.

She isn't losing her signing. She likes to kiss booboos, but at least isn't causing them on purpose now. I can finally manage to get her hair up into a pony, out of her face. She is doing great at counting to 10! And is now interested in colors and shapes.
msjorje: (starry night)
I dreamed I was holding a dog... a golden retriever, maybe. He had peanut butter in his mouth and was suffocating on it. I think I was standing in a pool for some reason. Just as he was almost dead, it occurred to me to reach in and clear his airway. He survived.




I've started worrying about random people in my life suddenly dying. When I woke up and told Elmo about my dream, my face started leaking. No sobbing, just tears streaming. Three memorial services in less than two months. I've had my fill. No one else is allowed to die for awhile. Give me a chance to breathe, damn it.

Melissa is driving in from Texas today... a 6 hour drive. I so badly want her to safely arrive already so I can stop worrying.

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