by Sarah | Oct 10, 2008 | All About Molly, Autism, Failure to Thrive (FTT), IUGR, Russell-Silver Syndrome
When my blog was closed for a couple of weeks I received an email from a new visitor. Her daughter was FTT and they were looking at a possible RSS diagnosis, among every other measure being taken. She asked me for our story and shared hers. Since her last email I’ve been busy and my brain still isn’t functioning so I hadn’t gotten back to her yet…but I thought I’d start to try to answer her question here. Starting at the beginning of our special needs journey that we’ve gone through with Riley. From the beginning…
*********
For the most part, my pregnancy with Riley went smoothly. I had minor issues with morning sickness (hello Saltines!), and some major skin issues (hello ringworm, dry skin, and excema!). Otherwise, things went well. She, and I, grew normally until around 20 weeks. That was the first time the ‘huh‘ factor came into play. I started measuring just a little small.Â
It wasn’t a panic inducing moment by any means, just a ‘huh‘ and a ‘we’ll monitor it’. My doctor loved excuses for extra ultrasounds (he likes to keep Mama’s happy by letting them see their babies), and he guessed that the small measurements may produce cause for a third trimester ultrasound.Â
As the weeks progressed I continued to measure small, and so I received another ultrasound at about 32 weeks. The ultrasound determined that Riley was small, too. Not a whole lot, but a week or two behind. Still not reason for panic, but reason for monitoring.
For my 36 week checkup I received another brief ultrasound. Riley was growing, but was still showing behind. My OB told me to keep drinking plenty of fluids and he’d check us again in a couple of weeks.
At 38 weeks I was already 2 cm dilated, and my measurements were still small. A final ultrasound revealed that in the previous two weeks, Riley hadn’t grown at all. She still looked healthy, but now looked about 4 weeks behind.Â
My (wonderful!) OB looked between Archie and I and said, “Well, we have a diagnosis of IUGR, probable low birth weight. It’s a medical reason to induce, would you like to go now?!”Â
It took one look and two seconds for Archie and I to say, “YES!!” We drove home from the doctors making calls, picked up our bags and drove the three minutes from our house to the hospital. Idiot me didn’t eat before we went in…but that’s a different story.
I was hooked up to the IV and monitors, where it was discovered I was contracting. At three minute intervals! I had no idea. They started the pitocin, and within half an hour I DID know I was contracting.Â
Long story short, eight hours later Riley pushed herself out (yes, you read that right, I didn’t push…AT.ALL), and came out blue with a nuchal chord (around her shoulder). Luckily, she immediately started screaming and pinking up, but the nurses scooped her up and took her away anyway…there was no instant holding.Â
She was born 6lbs 7oz. She was long and skinny, with a popeye effect…but she was beautiful and fair. She took to breastfeeding like a champ and was released from the hospital in the normal amount of time.
The first three months were wonderful. She was small, but grew on the curve. She fed constantly, but would not sleep lying down. It was our first hint of trouble, but we didn’t realize it. I just let her sleep in her carseat. It propped her up at the right angle and she was too small to roll out.Â
The first three months were magical…she’d fall asleep in my arms, she was tiny and cuddly and totally lovable. We didn’t know what a hectic world and stressful life we were about to embark on…we just saw oru beautiful fair princess staring back at us…
*******
For sake of length and sanity, this is to be continued :DÂ Tomorrow, I think.
by Sarah | Oct 3, 2008 | All About Kennedy, Hypotonia
What do you do when you don’t know what to do anymore?
When you tell yourself daily to call the doctor, to push for a second opinion…but you fear ‘the look’ you know will happen on the other end. The one that says, “You’re overreacting.”
When your child throws themselves into such an intense, self-injuring, shriekingly horrible fit that she is unable to pull herself out of it?
When the comfort you try to give her leads to pained cries – deep, gut-wrenching sobs filled with tears that tear at your heart – and you’ve never known what caused it?
When the two years of therapy have done nothing to help a problem that only seems to be getting worse, but no doctor seems to think that your fears are justified?
When you think there’s more wrong that they just haven’t gotten a fix on yet…but you have no clue where to start…and the one venue you can think of using could cause you to lose all support you currently receive – or at least have to have it re-evaluated?
When you are faced with watching your child – every day- struggle to be…anything?
Watching her struggle to be just like her sister, but unable to compete in an uneven battle?
When you see her grow tired every two hours, but have to force her to stay awake and still playing so that she will sleep when it’s actually appropriate?Â
When you see that the moment she has gotten tired all possible control she had weakens, and her feet turn in, and the clumsy begins, and the tantrums come quicker and stronger?
When you watch her destroy toys and property, without the faintest idea how to stop her?
When not even the trained psychologist is sure how to help with all of her issues?
When your own faith in your motherhood is tested and you doubt your own instincts on whether there is a problem or you’re being a hypochondriac?
You do the only thing you can do. You sit back. You watch her play, you give her hugs and kisses when she runs up to you. You find the amazement and wonder at her intelligence when she surprises you by showing it off. You see the happy in the smiles she grants you liberally between tantrums. You note the way she’s like you – dancing at every little bit of music, the way her toes point when she’s at rest, the cheeks, the smile, the crazy buck-teeth, the eyes.Â
You remember that you are her Mom. That in your heart you know the truth. You remember that your instincts ARE on, and fight for them, and for her.
You take a break, you revel in the love of your little angel…and you fight anew tomorrow to give her every bit of life, love, and help that she deserves.
by Sarah | Dec 12, 2007 | CF, Crap
You know ladies and gents…I’ve thought about it…but I just cannot be silent for a full day most of the time. If I HAD to be silent on a day I know it jsut wouldn’t happen *giggle* So I doubt I will ever be participating in Wordless Wednesday.
But I DID get a fun picture for this weeks upcoming Picture Hunt. So I may start doing that in time for the new year. I keep meaning to better my picture taking (I’m hoping for a fancy schmancy digital next year, our current one sucks monkey butt)…so that gives me an excuse and a challenge 😀
CF Clinic was today. K was a total witch again. Throwing herself down on the floor (which, by the way, is 3 feet of concrete with a pretty layer of tile on it…how can that NOT hurt??)…throwing a huge fit pretty much 98% of the time we were there. Dr. was a doll…I just adore her…she called me insane for backing 5 different types of cookies (I didn’t tell her I was planning on making a second round of 4 of those types).
Umm…oh yes. Car worked like a dream. Like there was absolutely nothing wrong with it ever. We’re thinking the fuel got frozen in the line or something…I hadn’t run it in about 36 hours….and it gets COLD at night here!!
by Sarah | Dec 10, 2007 | Autism
And replaced my baby with some talking, jabbering fool!!! Not to mention a BIG girl!!
Molly TALKED at preschool!! SHE TALKED!! ALL WEEKEND she’s been talking!
Pants, Tights, Dress, Santa (sun), Mommy, Diego climb tree, belly, shirt…just for starters!!
And then there’s the JABBER she’s been doing. Just talking our ears off!!
She listens and allows me to bargain with her. She has taken much more interest in solids (good), but therefore ignores important nutrition giving bottles. Today (twice) she was refusing the sippy cup, and I bargained with her, “Do you want to go night night?” “No!” “If you aren’t going night night, you have to drink your milk.” She took it both times!!
Last night at the company party she ended up with my plate in front of her and fed herself all night…mashed potatoes and HAM (she LOVED the ham!!)!!!
It happens so fast when it does happen…it catches me so off-guard!! She is SUCH a big girl suddenly! I swear the aliens took the whispy silent creature that was my daughter and replaced her with a lively little thing that is showing me just how MUCH knowledge she absorbed in her internalized silence. The girl is smart as a whip…I think we’re going to be in TROUBLE!!
*********
Coming tomorrow – The BEST Christmas Cutout Cookies ever made (I’ll proved recipes at Side Dishes, too.) And the next in the line of the Geek stories…Mama Geek!!
Posted NOW over at Side Dishes – My review of Sci-fi Channel’s Tin Man. (short version-95% loved it, 5% not so much)
by Sarah | Dec 6, 2007 | Therapy
Okay, so I’d never ACTUALLY call my daughter that…or maybe I would…but I’m digressing.
I’m so very not used to this. Denver was (forgive me for saying) the “perfect” child. He never had terrible twos, three’s, or any age. He acts up at the start of every school year…otherwise he’s a great kid. As a child temper tantrums were VERY rare…I never feared going out in public.
Molly is silent 90% of the time. When she was a baby the overstimulation would send her screaming if we went to a restaurant…but mostly I don’t have to worry about her freaking otu in public anymore. She acts incredibly shy. And now, since she’s started preschool a new social side is coming out around people she’s familiar with.
Kennedy. Well, she’s my little B-…snot-nosed brat. And yes, I DO mean snot-nosed.
Yesterday I tried to go shopping. Little One decided she didn’t want to go shopping…much less in Old Navy. Threw a SCREAMING fit. I had her in one of those carts they have…she kept THROWING herself back into the hard plastic seat. Joy.
We left Old Navy, went to The Children’s Place (I have a thing with Children’s place I’ll have to post later)…no carts there, so she threw herself on the floor. MARVELOUS.
Today was PT. She REFUSED to do anything PT…period. Threw huge big screaming hissy fits. Threw herself on the ground. On the couch. Threw toys. Screamed. Threw her head into me.
We finally got her to do some OT activities amid screaming fits. As the therapist was writing her notes, I gave K a little backrub…she had knots from head to toe. After that…guess what? The PT started cleaning up…and K started doing PT activities!!! She was climbing the steps the PT brought.
Yeah. The Little B-…er, Little One decided NOW was a good time…
Snot nosed little brat.
Figures…with three kids I had to expect ONE of them to be a punk.
by Sarah | Dec 5, 2007 | Hypotonia, Therapy
I have so many posts to make and so little time/space to do it. I feel like if I post everything I’ll overrun all of you with posts. I think there will seriously be 3 posts today on different subjects. If it’s too much, tell me. I’ll try to narrow posts down on upcoming days! (I’ve been trying in the past, but it’s tough some days!!) Anyway…onto the doctor’s appointment…
********
We took K to the Orthopedist. This was on the reccommendation of our Physical Therapist. Currently K is receiving PT for hyoptonia among other issues. She wanted us to go see an Ortho just to make sure that she didn’t need further “Assistance” in overcoming the issues she’s having. (She walks like a chimpanzee, her foot turns in, her left leg is 1/4″ shorter…)
I must say that it was the shortest, most concise appointment I have ever been to out of ANY specialist that I’ve seen. There was no weight taken. No height measurement. We were taken to a room. Five minutes later the doctor came in shook our hands (PAINFULLY strong grip, BTW), and asked us what was going on. He looked over her feet and her legs, asked us to have her walk a bit for him.
After a 5-10 minute appointment he basically said nothing needed to be done. He even came close to saying that PT wasn’t required (HUH?). He said she had Tibial Torsion, and explained how she was compensating for it. He said she’d “probably” outgrow it by the time she was four. If she didn’t outgrow it by then, we’d have to take measures. He also said he believed she’d outgrow her hypotonia.
We can only hope at this point. We were in and out of the appointment in an hour. And while I felt secure that he was knowledgable, I just am not as optomistic after it as I thought I’d be. I still have a gut feeling that her issue goes beyond simple Tibial Torsion…Her hypotonia is truly what worries me…the concern that she won’t ever learn to do things the “right” way…and will spend her whole life compensating. But apparently at this age it’s yet ANOTHER waiting game…wait until she’s four and THEN worry…
Um, no…I’ll worry now, thanks.
