Fun at School

Playing in the pool!!!

Looks like fun, right?

These are pics of Amelia in the "swim program" at school.  It looks a little more like sitting in a really cool jacuzzi, if you ask me!  There are jets in there and the water is shallow.  All her little classmates are around her playing....very cool stuff!  Amelia loves the water so it's really exciting that she'll be participating in this every Wednesday of the school year.  Of course, nothing is ever easy and I had to get letters to fight the school doctor who wasn't going to let her participate.  Apparently, in the past, other parents of kids with Gastrostomy tubes have sued the district because their children developed an infection around their G-tube sites after being in the water.  We were told that each class has a freshly cleaned tank and water to go into.   I had to write a letter stating that I accept all responsibility for any complications that may arise (uh...didn't I take that oath when I gave birth to Amelia??????)  and that I had received permission from Amelia's Gastroenterologist that it was okay for her to participate.   I get it.  Everyone needs to protect themselves these days because no one ever wants to take responsibility for anything.  The great news is...she got the ok and it's all good times and "slip and slide" fun!!!

Nestor and I have been shlepping Amelia to all her specialists.  It's been sooooo busy.  In the last 2 months we've been to her pulminologist, neurologist, opthalmologist,  dentist, gastroenterologist, ENT, had her MRI done, pediatrician for 6 shots:(  -- she was SUCH a good girl and a check-up and lastly, a feeding evaluation done at Children's Hospital.  This has been on top of all her school and therapies.  We're exhausted!   Good news is, it's done.  Now we have a month to wind down a little and turn our focus on getting things ready for this new little critter -- who will be invading our house mid-November. I have a c-section scheduled for November 15th...so unless she can't wait, we'll be seeing her just before Thanksgiving.  Is it mean to have the nickname "Butterball" already picked out?

My folks came into town a couple weeks ago.   My mom, sister and dad (yes, he gets credit because he shlepped the boxes to the post office!) worked very hard going thru the hundreds of bags in my folks' basement and picking out the girl stuff  0-12 months, to send out here to me.  So much work sorting thru, but so much fun!!!!!  Very exciting stuff.  Also, the big dilemma has been to ship, or not to ship -- the big baby gear that is.  The clothes were a no brainer, but the baby gear is another story.  My mom has strollers, high chairs, bouncers and swings in her basement.  The question is....how expensive is it to replace these things here in CA or is it cost effective to ship it all and pay hefty rates?  While my Mom and Dad were here we went to Babys R Us and did some calculating.  Well, somehow we hit some amazing shopping kharma, because they had tons of stuff on clearance PLUS, a salesperson walked by us and mentioned that everything was going to be 25% off on Friday (we were there on a Wednesday).  I mentioned that the things we were looking at might not still be there Friday to which she said "put it on hold and call tomorrow (Thursday) and ask them to put it on hold for another 24 hours and you'll be in on Friday to pick it up!"  GENIUS! And somewhat sneaky....but who am I to argue with a brilliant plan?  So that's what we did.  We got a high chair, bouncer, excersaucer, glider with ottoman and a sweet little chandelier for Amelia's room.  We already have a crib, pack and play and infant carrier from Amelia and I was able to pick up a snap and go stroller off of Craig's list for $30.  So we're in really good shape!  Now all I need is to pack my bag for the hospital.  Oh, and get everything up to the house from the garage...and wash the hundreds of baby items in Dreft...and put the crib back together...and wipe everything down that's been sealed up in the garage....and, and, and......:)

The peace of mind that is helping me thru....Amelia's BFF, Jozette -- who was her respite worker in NY, is coming in the Saturday before the scheduled c-section and staying until just before Thanksgiving.  Jozette has an extraordinarily demanding job at UCP, NYC managing adult residences there.  She is taking her vacation time to come out west to be here to take care of Amelia while I am in the hospital.  Getting Amelia up in the mornings, doing her treatments and packing everything up for school, taking her to school and picking her up.  Jozette is an angel!  That's all I can say.  She is member of the family -- and we are so touched and grateful that she is going to be here.  I know it will help Amelia feel grounded when I'm not here.  Jozette is so loving and productive, I know she's going to make the transition as smooth as possible.   And after that, my mom will be coming out to help.  We're so lucky to have such an incredible support system.  Truly, truly blessed. 

First Day of School

Well, Amelia had her first day back to school yesterday.  I really wanted to get pics and video to share...but she was not such a happy camper yesterday.  Not sure if it was getting up so early (she had been sleeping in until 7:45/8am every morning!) or just the frantic pace it takes to get her up, dressed, respiratory therapy done and out the door to drive to school.  In any case, NOT HAPPY!  I did take some video, but it's pathetic as she is kvetching the whole time!!! Today was much better, so I'll try to take some happy video/pics and post them soon!

Nestor and I are really excited for this year because Amelia has been placed in a higher functioning kindergarten class.  Many of the kids are ambulatory, some are slightly verbal and they are all very engaged.  It's so terrific to see her around a bunch of kids who are interactive with their environment.  Not necessarily with each other at this point -- but the potential is there!

The other fantastic piece is that Amelia is with her Pre-K teacher, Carolyn again who is just phenomenal!!!!  She goes so above and beyond what is expected and that's such a blessing in any classroom setting.  Also, the support staff, meaning all the classroom assistants are the same and the biggest thing -- Amelia's healthcare worker, Esther is with her again this year!  Amelia is absolutely crazy about Esther and vice versa!  Esther works her like no one else!  She has high expectations and doesn't take any baloney from Amelia:)  Esther treats her like a regular kid and  Amelia definitely steps up to the plate when Esther's around.  It's great to see.

There's definitely a settling in process though.  Amelia's school day is now much longer, from 8:15am to 2:40pm.  The glitch is that she still naps, sooooo that's a little hard.  She came home yesterday and was wrecked!  It was really hard to get Amelia to nap -- but totally necessary because she was in complete meltdown mode.  Also, it was so late in the day I was afraid to let her sleep too long, but things were so "fly by the seat of our pants," unfortunately, we did let her sleep too long (about 50 minutes) and she would not go to sleep last night.  Nope, not having it!  Last night I think she finally conked out around 10:30pm (yikes!).  The really cute thing that happened though is that I laid down in her bed with her for awhile trying to soothe her.   I had my big pregger belly to her little back and wouldn't you know it?  Amelia's little sister, from deep inside me, started kicking Amelia in her back!  Obviously, they were little thumps, but so cute!  I was just lying there in the dark, holding Amelia while she was settling down, with a huge smile on my face, while my belly was wrestling around with her future big sis!  I just kept thinking -- well, here we go!  The little one isn't even here yet and she's already instigating!!!!  Life's about to get a whole lot more interesting!

P.S.  By the way, the MRI went great last week.  Thanks to all for your support!  We'll be seeing her neurologist at the end of September so we won't really know much until then.

MRI Tomorrow

After many cancellations and reschedulings, we are finally taking Amelia in for an MRI brain scan.  She hasn't had one since she was in the NICU.  It may sound odd that we haven't followed up on an MRI -- being that we have a child with neurological issues, but it hasn't really been my priority.  Amelia's MRI from the NICU never showed anything.  Nothing.  Big fat zero!  She is who she is...but no tests, scans or otherwise have ever come back as anything but....normal.

I always cringed at the idea of putting Amelia under anesthesia and exposing her to radiation in order to see some images that are never going to make a squat of a difference in her life.  If Amelia was having seizures, this information would be important.  If she was regressing and we couldn't figure out why, this would be critical.  But as things are today, it's not going to change her plan of care.  It's not going to give us some magical answer that will give us the knowledge we need to "heal" her.  It's just a gathering of information.  Nothing more.

So, why now?  Well, she's five.  Also, we have a great neurologist at Children's Hospital (CHLA) who thinks it's time.  She posed it simply to us:  "She hasn't had one since birth.  It's time to have a new MRI done so we can have a conversation about it."  I don't know why it made so much sense to me when she said it this time, but it did.  I felt like, ok.  Let's do this!

It also helps that Amelia has been very stable these past few months.  Since she had her ear tubes replaced in April, she's had just a sinus infection over the summer.  Otherwise, she's been healthy and thriving -- although, I will say LAZY!

Must be the mood in the house with me on "low activity"=sitting on the couch!  And Nestor...well, in a nutshell, he climbed up on wall by our front gate to fix a light sensor, fell and has the "rolls royce" of ankle sprains.  So he's been lying on the couch next to me.  Together,  we're about 1/2 a parent!  Poor little Amelia, her parents are such fuddy duddys!  Anyway, Nestor's on the mend and I am in a temporary state of being...so we'll be back and better than ever in no time.

Meanwhile, have a great  Labor Day "last weekend" of summer.  Hope your hot dogs are perfectly charred and your lemonade is cold and sweet!

It Takes a Village

Amelia just got off her second round of antibiotics for a recurring sinus infection.  Poor thing was MISERABLE!!!!  She seems to be much better now and her system is regulating itself (you know, digestively speaking!).

Summer school started a couple weeks ago and will be finishing in a couple of weeks.  Her healthcare worker, Esther, who is with her during the school year has been by her side all summer and Amelia is so happy to be with her.  She looks for her every morning and carries on until Esther arrives.  Esther is just so good with her.  She knows Amelia's sounds and personality so well and has been able to push her further in her communication skills.  For example, Amelia has a button on her cheap talk at school to use the potty (their facility is really well equipped -- I'm working on getting a toileting system here at home for her) and Esther has figured out how to figure out if she is finished or not.  Esther will ask her if she is finished and put her hands out, with her fingers touching (this how you begin to make the ASL sign for "finished").  If Amelia is done she will put her hands on top of Esther's hands and the two of them will complete the sign by pulling their hands and fingertips apart and saying "finished".  If Amelia isn't done, she'll push Esther's hands away.  It's quite amazing that they were able to figure this out!  We're incorporating that for everything now.  Giving her a chance to let us know what she wants.  Not easy with a non-verbal child!

I am also in the process of getting Amelia some much needed adaptive equipment.  The toileting system, which I mentioned is one.  Also,  a new stander (Snugfit Gecko Upright Stander, size 2) and a tie down stroller for the bus (The New Bug Seating System, with a 4 wheel base).  Getting all the sizes, colors, options and accessories sorted out was a little daunting, but it's done and now we're just waiting for the letters of medical necessity to be reviewed by the insurance company so we can move forward with the vendor, ATG Rehab -- who have been wonderful to work with.

As for me, well, I look like I've swallowed a watermelon -- whole!  I'm getting rounder by the minute.  We've hit some complications -- baby is fine, thank goodness!  I am 22 weeks and it is too soon to make an official diagnoses -- it's not usually done until 26 weeks, but looks like I have placenta previa.  That means that the placenta is on top of my cervix.  This makes me prone to bleeding, which is what happened last friday -- sending us to the OB.  There was a small tear in the placenta and a tiny blood collection in the uterus, which is what caused the spotting.  I was put on bedrest for the weekend and went back to the Dr. last monday to follow up to make sure the collection was getting smaller not larger.  The blood collection is gone!  YAY!

However, the snafoo for us is that I am now ordered by the Dr. to "take it easy!"  Lay around, no working out, nothing stressful and most importantly, no lifting anything over 10 pounds.  Uhmmmm, Amelia weighs 50 pounds!  My OB said that I've had 1 bleed, 2-3 bleeds and I'm in the hospital for the rest of the pregnancy!!!!  So my poor husband has been on call 24/7 when Amelia's nurses aren't here and he has been a doll!  Honestly.  It doesn't surprise me, but boy o boy....it must be annoying to hear me every few minutes "Nestor?!  Can you come here and....."  He's been a real sport!

I called the insurance company, Anthem Blue Cross and our nursing agency, Maxim last friday to start the process of getting more hours of homecare nursing in place while it wasn't an emergency.  As the primary caregiver, I can't take proper care of Amelia by myself and if Nestor isn't here, I need some more help!  Imagine our surprise when Nestor got a call that he was going to be flying out to North Carolina today to do some reshoots on a pilot.  Yesterday.  At 4pm.  Can you say WHAT????????  I went into panic mode and called EVERYONE!!!!

I am very fortunate to have terrific people around me -- so here how it went down.  I called Maxim yesterday, right away and found out that I needed to get a prescription from Amelia's pediatrician.  Her pediatrician isn't in on wednesdays so I knew that was my first call this AM.  Because of the placenta previa, Blue Cross assigned me an OB case mgmt. nurse to oversee the rest of my pregnancy and make sure I'm getting all the care and services I need -- so I put a call into her VM yesterday, to call me today ASAP!  And the rest went  "more awesomely" than I ever could have imagined!  Usually it takes 5 days for BC to evaluate and determine a request for more hours of nursing -- but this was a bit of an emergency, so they sped it along.  Might have helped that I reminded them that if something happens to me they are going to end up paying for my stay in the hospital for 3.5-4 months and 24/7 home nursing for Amelia! I got a call around 1:30pm letting me know that the approval had gone thru!  WOW.  Just WOW.

Nestor flew out at 6:30AM this morning.  So, our neighbor, Chuck came over at 8AM and transferred Amelia from the house to the carseat for me.  I called the school on the way over and an attendant met me outside and took out Amelia's 45lb. stroller and transferred Amelia into it.  Then at pick-up, Esther walked us out to the car and did the reverse.  When I got to the house, Amelia's nurse was supposed to be here -- but hit traffic and texted me she was on her way.  In the meantime, Chuck's wife peeked out and asked if I needed Chuck again..."yes" I said with a sheepish smile.  He came over and transferred Amelia back to the house.  Then Amelia's nurse showed up and all is right with the world!   We'll do the same tomorrow and Nestor will be home Saturday night.  *breathe*

It takes a village people!  It takes a village.

Some Mothers Get Babies With Something More

 by Lori Borgman| Monday, May 12, 2002  


I've read lots of these lovely essays, here's one I hadn't seen before that was posted by a Mom on FB.  It's very thoughtful.  -D

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie. 

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. 

Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. 

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). 

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. 

Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more. 

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. 

Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. 

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. 

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. 

Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. 

How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear. 

I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. 

I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. 

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. 

You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. 

You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. 

You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder.

Busted

So, this morning Nestor and I went to the LA Premiere of the amazing documentary, "Certain Proof: A Question of Worth."  It is a a tremendous project that gives a voice to non-verbal kids like Amelia.




At the end of the film there was a Q&A with the Director, Ray Ellis.  A question was asked by an audience member and when I looked back, I saw that it was a father from Amelia's school, who I used to see all the time in the parking lot at drop-off in the mornings.  I was a little surprised to see him in West Hollywood on a Saturday morning, so far from the Valley.  On the way out we stopped to say hello to him and his wife.  I hadn't seen him in a long time and he mentioned that his son is now in a different school.  He mentioned that he still reads my blog, to which I said "well, it's been awhile since I did an entry."  He agreed.  Oops!  Busted!  I love this blog and I have been very lazy lately in posting.

I plead morning sickness.  Nausea.  Exhaustion.  Yes...Amelia is going to be a big sister in November.  We are very excited and of course, feeling a bit cautious.  Amelia has no idea what she's in for.  I keep telling her that she's going to be the best big sister and I know she will be.  She is all love -- so how could she be anything else!  I am having an amnio on Wednesday -- so keep us in your good thoughts!

Also, Amelia's IEP.  Being put on the waitlist (#204) of the inclusion charter school, Chime -- which we are in love with and were hoping against hope that Amelia might get into for Kindergarten.  Running to GI, ophthalmology, speech therapy, occupational therapy, physical therapy, OB (for me!) appointments.  We've had some out of town company -- which was spectacular!!!!  And the rest is just general crazy life!!!!!

Amelia's latest thing:  lastnight Nestor and I went to see "Bridesmaids" (so fun!).  As we were walking thru the gate to come into the house, we could hear Amelia hysterically crying from outside.  We came in and she was in a full-blown state.  Big tears and huffing and puffing.  Her nurse said that it had started a few minutes ago right after she hooked up Amelia's dinner feeding.  At first I was sure that it was the cartoon on the TV.  She can be somewhat temperamental about it and seemed to be reaching toward it.  But huge tears and hysteria?  Didn't seem right.  As I went on the other side of her, I was able to see that she was pointing to the big cup next to the TV that holds an assortment of lollipops.  In particular....the big Mickey Mouse eared lolly.  We had given it to her a few days before, but because her secretions had been thick the past few days (cold or allergies?  not sure!) lollies were off the list for now (aspiration risk).  But seriously...she had stated her case and WON!  Out came the lollipop and she was absolutely silent for the rest of her feeding.  Joyfully glowing in the sticky residue of the pop.  It was so incredible to see her fight so vehemently for what she wanted and thank goodness we were able to figure it out.  It is so frustrating for us, but just imagine how Amelia must feel.  She has been reaching for the lolly at each feeding now.  I love it!  She is associating a food (even if it is a lollipop!) with her GT feeds.  Can you imagine never having eaten food -- for your whole life?  Amelia has no real relationship to food.  I hope this is another leap for her.  Small steps are enormous in her world...and in ours!

Enjoy it, my girl!  You deserve it!!!!!!

"What are you looking at?"

Yummy:))

All's Well at the OK Corral

 School picture 2011

Just wanted to give an update.  Amelia's surgery went well last week and we're going to be seeing the ENT this week for a follow up.  She still seems to be having sensitivity with the right ear...but I'm hoping it's just taking a few days longer for it to heal up.  Anyway, she seems to be happy and enjoying her new ear tubes.  Maybe it's because she got to watch A LOT of TV!

On another topic, we went to see an amazing augmentative communications specialist a couple weeks ago. Amelia did really well on her IPad and worked especially well with an App called "Proloquo2go."  It's $189.00.  The specialist said to me "I know it's really expensive!" to which I said "Ummmm....if my child is going to be able to speak to me with it...it's priceless!!!!"  Perspective is everything friends!