Saturday, December 25, 2010

Should've stayed.....

We are home and had a lovely evening of present opening.  That abruptly changed about 1100 when E started throwing up - all....over....everything.  Now I wish we'd have stayed in the hospital.  Stomach flu is something M definitely does not need.  Looks like we're in for an all around yucky weekend. :(

Friday, December 24, 2010

Merry Christmas Eve!

From this:


To this:

M is doing well.  The morning has been a turning point for her.  She's happy, smiling, squealing away - even through her MRI.  She's still pulling her hair (hence the hat), but isn't crying.  She's peed, pooped, eaten and drank.  The surgeon on call consulted with our regular surgeon who is spending Christmas with his family overseas.  They are both at peace with what was done and with the current outcome.  He feels there are months of healing and waiting ahead, but for now, wouldn't do anything different as long as she continues to improve.  So, we're headed home for Christmas - just in the nick of time. :)  We have so much to be thankful for!

Thursday, December 23, 2010

The Day After

It was a rough one.  Four and half hours in surgery, a moderate amount of blood loss and three shunts later M is resting fairly comfortably.  I broke down and had them give her some morphine this morning because she was scratching her face and pulling her hair again.  Anything beyond Tylenol is sort of frowned up on in neuro patients, but she definitely needed it.  She's very unsettled, very confused and just generally discombobulated (it's a real medical term, I swear) today.  She's also very puffy from the blood loss, fluid replacement and from laying on her face for so long during the procedure.  We're headed to CT in about 45 minutes to see how things are looking and if all continues to go well, we hope to go home tomorrow.  I have a killer headache and am running on about 1 1/5 hours of sleep, a can of Diet Coke and a bowl of cheesy potatoes so hopefully there will be a nap in our not so distant future. 

We were blessed by visitors already today.  The lovely Julia and her mom happen to be just down the hall.  It's always nice to have friends nearby. :)  The boys are planning to come up a little bit later.  We didn't send E to school today.  He had a pretty long day yesterday hanging out in the ER with us and then headed off to Grandma and Grandpa's house for the evening until Kevin could get back to pick him up and take him home.  In any case, an early start to Christmas Break was in order for him. 

My Dolly is stirring - I'll update later.

Wednesday, December 22, 2010

All I want....

....for Christmas is TWO functioning shunts.  I hate to say it, but I was right - you know DAYS AGO when I thought there could possibly be a shunt problem.  I don't know why I didn't trust my instincts more.  M is currently in surgery for a very complicated looking shunt malfunction.  It is impossible to tell which shunt or if it's both that are failing.  It's also impossible to tell if she has loculations again.  There is no solid plan right now.  Our beloved neurosurgeon is OUT OF THE COUNTRY!  The new nsg seems nice, very confident (but not too confident) and competent.  I hate these after hours surgeries because they have to be done on the adult side of the hospital, but luckily our favorite peds anesthesiologist is on tonight.  No idea how long we'll be here, but I'll update when I can.  Thanks for praying for our precious dolly.

Monday, December 20, 2010

The Very Special Gift

Today was one of those days I needed a little reminder and I got it when I logged on.  I took M for her AFO fitting today and brought home yet another piece of equipment.  These very cute, very tiny pieces of plastic will hopefully help prevent my little baby's legs and feet from becoming more deformed.  It was an easy appointment and in the whole realm of what we've dealt with, it was really, totally nothing.  However, I brought home these little plastic molds and while trying to decide where they would "live" when not on the gloriously cute chubbies that are M's legs, I was reminded again just how much special "stuff" we have.  Equipment is truly taking over our house.  I'm not complaining, quite the contrary, I'm grateful we have it available to us.  It was just one more thing to find a spot for.  It was another reminder that likely we will spend the rest of M's life juggling equipment.  We currently have a wheelchair, a tumbleform, a bath seat, 4 McKie splints, a Little Room, a nebulizer, a drawer full of central line supplies, and a cupboard full of medications and syringes.  In three weeks we'll have her Benik trunk support.  A little over a year ago I never would've thought I'd ever own ANY of these things.  Heck, I'd never heard of some of these things.  So, here we are - thankful to have the best care and the best equipment for our girl, but wondering how much more we can fit in the house. 

I digress - I saw this posted on a fellow mom's blog and it's one I've not read before.  Of course, as is the case with everything these days, it brought tears to my eyes and reminded me just how LUCKY we are to have our two precious blessings in our lives.

The Very Special Gift
By S. Guevara

Once upon a time, three angels were busily working in the miracle

factory. They were responsible for wrapping up all the little

miracles and sending them on their way. Normally they wrapped each

one in bright, sturdy paper with big, shiny ribbons. They stamped

them with a delivery date and away they would go to the parents who

eagerly awaited their arrival. Things usually ran pretty smoothly.

One day, however, down the conveyor belt came a little miracle that

made the angels pause. "Oh my," said the first angel "this one's

uhm...well...different." "Yes, she is unique" said the second

angel. "Well I think she is quite special," said the first angel "but

I don't think she will quite fit our standard wrapping procedures."

And the second angel added, "And we know she's special, but will

everyone else?" "Not a problem," said the third angel "obviously a

special miracle deserves extra special wrapping; and of course we'll

send her off with our most heartfelt blessings. Then everyone will

see how special she is." "What a wonderful idea!" replied the others.

So they searched the shelves high and low for their finest paper, and

their most delicate ribbons.

When they were done, they stood back and admired their

work. "Beautiful!" they all agreed. "Now for our blessings," said the

third angel "for it is time for her to go." "I will bless her with

innocence and happiness," said the first angel. "And I will bless her

with strength to face the many challenges that lie ahead" said the

second angel. "And I will bless her with an inner beauty that will

shine on all who look upon her" said the third angel. Before sending

her off the third angel, who was very wise, gently tucked a note

inside.

And it said,

"Dear Parents:


Today you have received a very special gift. It may not be what you


were expecting and you may be disappointed, angry and hurt. But


please know that she comes with many blessings. And, while there may


be pain, she will bring you much joy. She will take you on a very


difficult journey but you will meet many wonderful people. She will


teach you patience and understanding and make you reach deep inside


yourselves to find a source of strength and faith you never knew you


had.  She will enrich your lives and will touch the hearts of all who


meet her.  She may be fragile but she has great inner strength.

So please handle her with care. Give her lots of attention and shower


her with hugs and kisses. Love her with all your heart and she will


blossom before your eyes. Her spirit will shine like the brightest


star for all to see and you will know that you are truly blessed." 

Amen

Wednesday, December 15, 2010

Surgery Update

For my non-Facebook friends:  Surgery went well.  Throat was dialated again, one cyst addressed and the central line stayed in.  The anesthesiologist was unable to find adequate venous access (not for lack of trying judging by all the holes, tracks and blood streaks) so it was decided to leave the line at least through the winter months.  M was a total rockstar this time with the anesthesia and recovery.  She's been smiley and silly and just now fell asleep.  I just went and grabbed some dinner - a delectable tray of Lunchables (for old time's sake, P) and a muffin the size of my head!  The hospital is so full tonight that we are sharing a room - never thought that'd happen. Our roomie is awake and crying a lot so hopefully we'll catch a few winks here and there.  She was a July preemie and her mom is very sweet - we have a lot in common.  In any case, we should get the boot in the morning and be on our merry way back home. :)

Surgery

E came down with a terrible cold, too. :(  He stayed home yesterday where I pumped him full of Mucinex and fruit/veggie juice.  Today, he is much better and is at school.  M is still doing okay.  She's a bit congested, but her pediatrician said yesterday her lungs were clear.  She has had no fevers so at this point, surgery is still on for today.  She is scheduled for 2:00 p.m.  Hopefully all will go well and this will be the last throat procedure.  We're also praying for her central line to be removed.  I'm anxious to see what the ENT has to say about her throat.  She's been super gaggy the last few days and I'm hoping there's an easy, physical reason for it.  If he finds nothing, I'm afraid it's neurologic.  I'm a bit more nervous about this procedure since she had such a difficult time with anesthesia last time.  I'm hoping we have one of the anesthesiologists who is very familiar with her. 

M's disposition has also improved some.  So far, she is smiley and squealy today despite not being able to eat anything.  I'm sure that will change as the morning turns to afternoon and she can't figure out why her poor tummy is sooooo empty and worse, why mama won't do anything about it. :(

I'll try to update later.

Monday, December 13, 2010

Frustration

M is sick.  It all started last week when I sensed that something was awry.  She had no neon sign symptoms, but something seemed a little "off."  Smile on my face and optimism in my heart, I took her to the pediatrician expecting a simple UTI or an ear infection.  I was greeted in the typical manner with "what tests should we do today?"  No, she was not being sassy.  I LOVE our pediatrician.  She not only respects me as a medical professional, but as a mother who KNOWS when something isn't quite right.  She also respects the complexity of M's condition, her very difficult course and my uncanny ability to diagnose her at the first sign of trouble.  She examined her completely and we ran labs.  Everything checked out perfect.  My heart sank a little bit as I decided to take her home to watch her.  Not because she was seemingly healthy, but because being "off" and having normal lab work often means a more significant problem, i.e., a failing shunt.  The next two days she seemed a bit better, but this weekend something (or someone) possessed her.  She is C-R-A-B-B-Y!  She is crying....A LOT and it is totally unlike her.  She is giddy and squealing with delight one minute and is inconsolable the next.  She is not, however having any other signs to make me think it is a shunt issue.   Yesterday, I imagined I saw an eye tooth poking through - today, I don't see it.  She has never cried about getting teeth - or much of anything else for that matter.  She has had a cold for the last few days (of course she does, what with surgery scheduled for Wednesday and all).  We dropped her Sabril again last Friday and she continues to be more alert.  Could it be that she is merely "waking up" from her overmedicated, disorganized brain, seizurey (yes, it IS too a word) state and is just wanting more out of life?  In any case, I am at a loss.  I am exhausted and losing my patience.  It is hard for me to admit that.  It's not her I'm angry at, it's the whole damn situation.  I'm angry that there are just too many things to guess about.  A baby should not have this many possible serious medical complications to rule out.  I'm angry that I can't wave a magic wand and fix it - whatever it is.  I'm angry that at 17 months old she cannot roll over, sit up, crawl, run around, play with toys that might amuse her or communicate with me to give me any clue as to what's ailing her. I'm angry that her surgery on Wed could be postponed.....AGAIN!  Feeling so frustrated makes me even more angry because I know I'm not being the kind of mom I want to be.  I know I need to snap out of it.  I know she feels my frustration.  I know that it's not the end of the world if surgery is postponed.  I just want my happy girl back.

Monday, December 6, 2010

Gluttony

There is only one thing more heavenly than the Cadbury Creme Egg in April..........................






Chocolate Covered Cherries in December!


Please don't ask me to divulge how many BOXES have passed through our house over the past couple of weeks.

Wednesday, December 1, 2010

An Open Letter to Professionals

Below is an incredible letter written by Pia from her blog The Crack and The Light.  (Feel free to skip down to it if you're not up for my teary drivel).  It brought me to tears - several times actually. 

Sometimes, I find it pretty hard to find words that adequately express what I'm thinking or feeling.  Sometimes I just type to get it out and then hit "delete" lest I publish it and be judged, God forbid.  This is something that deserves to be spread around.  This is something every teacher, therapist, doctor, nurse, friend, or family member who has contact with parents of special needs children needs to read and reread again and again.  I don't ever expect anyone to understand what we go through or what our kids go through.  I don't expect anyone to even care.  I do, however, expect people to respect me and respect my feelings because I respect others.  I am a mother to two (and someday, hopefully three) children with special needs.  Their needs are of varying degrees.  Some of their needs are obvious, some are so very hidden.  My heart breaks....every....single....day.  It breaks not because they make me sad or because I don't love them or because I wish they were "normal."  It breaks because they hurt - physically and emotionally; they struggle; they put up with countless doctors, nurses and therapists; they will go through life being labelled, misunderstood, and underappreciated.  My heart breaks because I wish others could see the beauty and inspiration in my children that I see.

I think a big part of the reason this letter reached me on such a deep level is because it was written for me - a mom of kids with special needs.  It focuses on me and me is something I've kind of forgotten about.  Oh, I think about it now and again - I see the lines around my eyes and the grey hair on my head.  I feel the aches in my neck and back.  I think about it almost daily when someone says "you look frazzled" or " you sure look tired lately."  This letter touched me because it made me look inside myself and acknowledge that I do, indeed, feel all of the things she talks about.  It reminds me that while I do my best to hold it all together, inside, sometimes, I am falling apart and sometimes, that's okay.

An Open Letter to Professionals

Hello?

New teacher, or therapist, or doctor? Is that you?

Oh hello…


I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.
My slightly-broken, definitely-bruised heart.
Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…
You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….
You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…
But regardless of what you see, what you think, or what you believe, this is what you should know:
I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.


Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

Tuesday, November 30, 2010

Updates

It's been a crazy week and it's only Tuesday!  Yesterday, M had her casting and she did so awesome!  The guy doing it was really surprised how well she cooperated and tolerated it.  The whole process only took 1/2 hour.  It took three times longer for us to get there!  Anyway, her AFOs should be ready in about three weeks.  We (okay, I) chose a super-cute flower design for the overlay.  We were able to get a tiny bit of Christmas shopping done afterward as well.

Today, I finally dragged myself to the doctor to address my chronic headaches, nausea, and recent dizziness.  The doc discovered quite quickly that I have a pretty significant sinus infection.  This is the second time I've turned up with a sinus infection with no preceding illness.  She also looked back at the CT I had last year during that whole pseudotumor episode and shared with me that my sinus structure is looking pretty crappy and the radiologist remarked that I had "moderate sinus disease". That would've been nice to know LAST YEAR!  In any case, if things don't clear with the antibiotics, I will most likely find myself visiting with an ENT.

After my appt, we headed down to radiology for M's repeat renal ultrasound.  Her pedi called this evening with the report.  Kidneys still look fine, but no one knows what to make of her very full bladder.  She is obviously not emptying properly and while it's not a problem now, it could quickly become one.  She is putting a call in to the Peds urology team to get their recommendation.  We're hoping that if there are procedures to be done, they can be done in conjunction with her surgery on the 15th. 

This afternoon, E was able to be seen by neuropsych.  She had a cancellation and we snagged it.  It was an emotionally draining hour and a half.  It was also very informative.  I left feeling armed with a knowledge and power I need to try and help him.  Basically, on multiple levels, he fits the criteria for an autism diagnosis.  However, because he doesn't fit the mold completely, he escapes the label.  This is good.  His sensory issues are definitely worse.  His social skills have regressed.  He is easily overwhelmed by his surroundings.  His cognitive ability is a both a blessing and a curse.  He is learning at such an amazing rate, things are so much more overwhelming to him.  She is concerned mostly with his CNS development (or lack there of).  It's impossible to know if his lack of development and control is a result of prenatal factors, premature birth, toxin exposure, lack of sensory stimuli, or physical/emotional injury/trauma.  He needs therapies.  He needs occupational therapy, a speech/language pathologist, social skills training and possibly behavioral therapy.   I left the appointment, called the school district and set the wheels in motion for an IEP to be developed.  Armed with an extensive report from his neurologist and neuropsychologist, it wasn't a problem to get it going.  We have a long way to go, but we're committed to helping our little monkey be the best he possibly can be.

We got our tree up and decorated, the house decorated and it's beginning to look like Christmas around here.  We had some flurries today and Rudolph was on TV tonight - does it get any better? 

Here's a few pics from the last week:

Check out my crazy girl "jumping" and grooving!
M's "little room" (her resonance board is coming Monday)
 All bundled up waiting for the Christmas Parade

 Every Christmas, each kiddo chooses an ornament from their country/state of birth box.  Here are this year's choices.  Louisiana on the left and Kyrgyzstan on the right.
 Thanksgiving

My silly Christmas elves!

Friday, November 26, 2010

Shutterfly

I am so pumped about Shutterfly's Christmas Card Promo!  Since hearing about it and checking it out a few days ago, I've been addicted to surfing Shutterfly to try and decide which of their fabulous Photo Christmas Cards we're going to order this year.  I have a few favorites, but I can't tell you which - then it wouldn't be a surprise when you find it in your mailbox.  I was also stunned to find they have so many other awesome products to choose from.  The Photo Calendars are an incredible gift idea.  After all, who doesn't need a 2011 calendar?  With E's recent calendar obsession, I think I may make one for him with pictures from each corresponding month this year.  I know he'd get a huge kick out of seeing himself starring in his very own calendar.  The Photo Coffee Mugs are great, too.  Perhaps Daddy needs one of these......shhh.....don't tell him!  Anyway, I strongly encourage you to go to Shutterfly.com and check everything out.  I know I've found a new favorite photo product site!

Tuesday, November 23, 2010

Neurosurgery Report

Our appointment yesterday was, as I expected, just wonderful!  It's amazing what happens in six months, though.  The elder neurosurgeon retired and moved to Kenya with his wife (who was also an NP there).  He never performed any of M's procedures, but I do recall (vividly) my first encounter with him last December.  We came in and had an emergent procedure done by some super hot highly qualified adult neurosurgeon because our beloved Dr. I was out of the country - I know, how dare he.  Anyway, the peds nsg checked in us the next day.  He opened with: "I see you adopted her from Louisiana.  What'd you do that for?  Couldn't you find any healthy, white kids around here to adopt?"  Oh, yes he did!!  Turns out he has a pretty twisted, and very dry sense of humor.  We got talking about how he takes mission trips to Kenya to do hydro surgeries and when he retired he and his wife would move there.  I still never got any warm, fuzzy feelings about him, but I digress - he and his wife have left.  So, there is a new nsg.  Our favorite NP, J, has also left.  She was like my best friend during our 10 week stay earlier this year.  She did most of M's shunt taps, checked in us almost every day and occasionally just stopped by for a sweet, M snuggle.  I really loved her and am going to miss her dearly.  So, there are two new NPs.  There is also, of course, a new resident whom I met yesterday.  I wasn't particularly crazy about the last one - he'd be the one that ignored all of the signs that she was bleeding during her hemorrhage in February until I got there, found Dr. I and told him that she was white and neurologically bizarre.  This one appears to have just graduated - from middle school, that is.  They come and go pretty fast and so far, no one has measured up to our very first resident - he was great!  I am happy to report that the person that was there doing a fellowship for our last two months in the hospital is gone.  He was a prick - cocky, rough, sloppy.  I couldn't stand the sight of him and from what I gathered yesterday, no one else could either. 

Overall, Dr. I was pretty happy with M's status.  He's a man of few words, but his expressions tell the story.  He gave us another six month pass.  Barring any "issues" she'll have an MRI and another visit next May.  I completely forgot that he would have no idea about her IS diagnoses since she was diagnosed just after our last visit with him.  She started having clusters of spasms just after her post-op hemorrhage in February and ALL THREE neurologists that followed her in the hospital repeatedly blew us off.  They thought it was muscular, med-related, or just "healing".  Therefore, it took three months to get an IS diagnoses.  That's three months of unnecessary damage.  At hundreds of spasms a day, that's a lot of damage to add to an already very damaged brain.  Anyway, when I told him, he was so sad and so disappointed.  He knows that her outcome could've been completely different had it been treated right away. 

In spite of everything, I think although developmentally she's not where he was hoping to see her, he was thrilled to see her smiling, squealing, laughing and being silly.  We're pretty happy, too!

Sunday, November 21, 2010

A Mish Mash

Nothing really new to discuss, but I have some updates all the way around.

E scored an appointment with his neuropsychologist for Dec 13.  We're on the short list if they have a cancellation earlier.  The nurse that called me back said the doctor was anticipating this visit - whatever that means.  I guess it probably means he's following a typical course and this is around the age kids have difficulties?  In any case, I'm grateful we get to see her so soon.  Incidentally, the last two days have been pretty good.  Other than the typical "boy stuff," he's been fairly happy and peaceful.

Kevin scored a deer this morning, roughly 16 minutes after getting out in the woods!  YAY for my mighty hunter putting food in the bellies of his family!

M gets to see her (and my) most favoritest doctor in the entire world tomorrow!  We have gone SIX WHOLE MONTHS without a visit to neurosurgery - a record!  While it may sound twisted, I'm so excited to go tomorrow.  There is a peace and a happiness I feel when we see that doctor - strange since he's cut into my little girl's head 14 times.  Truth is, we LOVE him - truly.  We've been through hell and back with M's neurosurgical status and he's seen us through it all.  He's fought just as hard as she has and never once even considered giving up on her.  He has always been there for us - anytime day or night, in person, on the phone.  He has never acted like we were a bother.  If we ask for him, he is there.  I can't wait for him to M and all that she has accomplished in the last six months.  Prior to her appointment, she'll have an ECHO to check the status of her distal shunt catheter.  I am praying it is still happy and comfy where it sits and we don't have to replace it.  Although, I'd be slightly surprised at that considering how much she's grown!

Christmas is coming - in case you didn't realize.  I feel like I'm pretty far ahead at the moment.  There's a nice big, green tote downstairs full of presents - clearly marked (and booby-trapped, of course) for all to KEEP OUT of.  My sweet, lovely babies were wide awake at 4:45 this morning, so rather than fight the sleep monster, we got up, showered, ate and headed off shopping.  E is so anxious to get the Christmas decorations up.  I've promised him we can do it next Sunday when Daddy gets home from hunting.  I've started a baking list, but it's a bit to early to tackle it yet. 

I guess that's about it for today.  I'll try to report on the big appointment tomorrow afternoon.

Friday, November 19, 2010

Difficult

In parenting, specifically parenting children that come with uncertain history and, for lack of a better word, "baggage", we all like to try and make it appear that we've got it all together.  I know I try - not only to appear that way, but really keep it all together.  E has provided us with challenges ever since he giggled his way into our hearts on April 24th, 2007.  He had some obvious, albeit minor medical problems.  As the months went on, it became clear that he had some not so obvious emotional and neurologic problems.  The years have passed and we have worked diligently at responding to his needs and giving him the space, the resources, and encouragement he needs to thrive - even if that means he doesn't follow any sort of predictable (aka "normal") course.  He has done well overall, has made tremendous progress and overcome many obstacles. 

Early this Spring he underwent extensive neuropsychological evaluations at the recommendation of his neurologist.  To back up a bit, his neurologist is certain that he has neuro damage, the extent of which or the etiology of, we are uncertain.  It has been her feeling that putting him through an MRI, EEG, etc., wouldn't change our course, so why subject him to it.  Anyway, the neuropsych eval revealed that he definitely has Sensory Processing Disorder and most probably ADHD.  She gave us recommendations and we have followed them.  He's continued to grow leaps and bound in cognitive development, but lately, has begun to regress emotionally/socially.  It's difficult when you have to try to explain these types of "hidden" problems to people who don't live it.  People are quick to write behavioral issues off to a child being unmanageable, a product of bad parenting, or "just being 4 1/2."  With a child like M, you can rattle off the laundry list of medical diagnoses that explain her problems.  They are tangible and people accept them even if they don't understand them.  E's issues go much deeper, are more complicated, and are very obviously tied to his SPD.  Lately he has had very adverse reactions to things that six months ago didn't bother him.  He can't stand to have his nails trimmed, his ears cleaned, his teeth brushed.  He picks at his food and won't eat anything that has "spots" on it, is a certain color, or is of an undesirable texture.  He is having strong reactions to sounds and odors.  He is afraid of the dark, afraid of the house falling down, afraid of storms, afraid that everyone's going to leave him.  He panics if there is a mark on his skin, a scratch, bruise, paint/marker.  No one should have to live with that much fear - especially not an innocent child.  Initially, I tried to write it off as a phase or as him just testing his limits.  Now I see that, selfishly, I was probably trying to avoid admitting that he very possibly is regressing or having new issues.

Yesterday, I took him for a haircut.  For about the last year, he has done great!  It's not his favorite activity by any stretch, but he has tolerated it.  He sits, gets his hair cut, plays with the water bottle and leaves with a sucker and a smile on his face.  Yesterday, he went into a full-blown panic almost immediately after the girl started.  He was screaming, swinging, trembling - saying it hurt.  It took me back to his first 2 years of haircuts when it was a 4-man job.  I guess that was my slap in the face wake up call.  I have requested an emergent appointment with his neuropsych (which will, unfortunately, probably land us an appointment in Feb). 

It infuriates me to no end that something most likely happened during his first year of life that caused damage to his brain and caused these problems.  You hope that you can just love your kids enough to give them eternal happiness, but sometimes, love is not enough.  I hate watching him struggle.  I hate that he has to work harder than anyone else to get his body to do what he wants it to do.  I hate that people don't understand him.  I hate that I don't have all the answers.  I hate that I can't shelter him or make it all better.  I know we have to address these problems.  He is a kiddo that is so smart, so funny and so full of spirit.  I don't want anything to get in the way of that.

Please keep our little monkey in your prayers.

Thursday, November 18, 2010

643,000

...is how many hunters will be in the woods of Wisconsin this Saturday morning.  That's a whole lot of men (and some women, too) with guns!! All the men in my family will be out scouting for the perfect beer, I mean deer.  Be safe out there, guys!!

Wednesday, November 17, 2010

Victories

After last Wednesday's conversation with 'Lil Miss "I'm a 20-year-old, uneducated, bitchy insurance call center rep with a chip on my shoulder" left me totally frustrated and dissatisfied yet again, I decided it was time to pull out the big guns.  I sent off a quick email to our Senator's office, whose assitant, Cindy, has always been extremely helpful and supportive.  She has provided assistance in the form of a "gentle nudge" to MA twice in the past and both times the cases in question were immediately resolved.  Today I got a call from M's pedi's office that she has suddenly been approved for 5 doses of Synagis and will receive her first shot next Wednesday.  So, not sure if it was Senator magic again, some other divine intervention, or the fact that everyone was finally sick and tired of hearing from me, but I'm thrilled that we can put this month-long fight to rest.

Yesterday, we also were delighted to receive new photos of K, who is now 3 weeks post-op and looking INCREDIBLE!!  For some reason, I feel like this fight is coming close to resolution, as well.  I sure hope I'm right about that!

I have had a difficult week and half.  I've had a headache, sometimes mild, many times severe for about 10 days now.  It's very similar to how I was feeling when I had pseudotumor last August.  With our new (and much crappier) insurance, I hesitate to run off to the doctor.  I'm praying it resolves soon.

Friday, November 12, 2010

A Quick Update on M

M had back-to-back appointments yesterday - pretty big ones!  She had a renal ultrasound which, unfortunately, showed that she's having significant urinary stasis.  This means that her bladder is not emptying properly.  As is common with kiddos like her who have little no muscle tone, things like bladder and bowel function are often affected.  We've got her to a point where she poops once or twice a week (if you're not interested in this part, feel free to skip ahead) and it is nice and soft.  However, that means that on the days when she's not pooping, there is likely extra pressure on her bladder and urethra.  Potential complications of stasis are frequent infections and kidney damage, just to name two.  First thing we have to do is get her pooping daily - easier said than done, but we're going to give it a try.  She'll probably have a VCUG when she is hospitalized for her next throat surgery in December. 

At her neuromuscular rehab appt, it was decided that it's time to cast her for bilateral AFOs.  Her achilles' are extremely tight and her little feet are starting to change form (not in a good way).  Since she is a long way off from crawling or walking, her AFOs are going to be solid and fixed, their use primarily to give a nice stretch to her legs/ankles/feet and hopefully prevent further tightening.  We had a brief discussion about Botox, but we're a ways off from considering that as a potential treatment.  Her overall tone, the Doc felt, was a little worse - when I call her my noodle, I'm really not kidding!  Good news is her left arm and hand appear to be stable with the Mckie splint she has.  Her head throwing, head/chest hitting, face scratching seem to be sensory.  M LOVES to be in motion.  She loves to swing and be thrown gently tossed in the air.  She needs vestibular input and we're searching for ways to provide it for her.  She can't be in her Jumperoo because she bangs her head and face.  She's too heavy for her infant swing.  She doesn't sit, roll or crawl.  Her vision impairment prevents her from getting visual sensory input.  We'll be trying out some equipment when we go to the Rehab clinic for casting and see if we can't find her something to satisfy her need for motion.  We're adding one new medication to her regime to see if we can get her a little stronger and improve her endurance a bit.  Overall, a very good, very informative appointment.

Lastly, it was EEG time - the most dreaded of all appointments.  M cannot stand to have her head touched.  She barely tolerates having her hair combed.  Attaching all the EEG leads and then subsequently taking them all off is a big ordeal for her (and the poor tech that gets stuck with us).  Luckily, she's so worn out after getting them on, she goes right to sleep for the actual test.  While we don't have the "official" read on the tracing yet, the techs there are never shy about letting me take a look and comparing to previous tracings.  This one looked better than any she's ever had.  She had very little disorganization and the tracings were almost....get this....symmetrical!  This is HUGE!  I have to say that it correlates nicely with her clinically.  She's had very few seizures since starting the Tri-Leptal last month.  We haven't seen a spasm (knock wood) in several months.  She's been more alert, happier, more interactive and sleeping better, too. 

I also drew labs on her last week and all is looking perfect!

We're still fighting the insurance to get her Synagis for the season.  It's an uphill battle, but little do they know who they're dealing with.  Sometimes I get the feeling they try to ignore you long enough in hopes you'll go away.  Not happening!!

I got word today that the anterior trunk support vest that was not ordered with her wheelchair is FINALLY in (after FIVE WEEKS).  We also lost a couple of very important parts of the chair and those are on order.  Next Thursday I'll make the trek to the medical supply place for a re-fitting, "installation" of the vest, and hopefully repair. 

I guess this wasn't a very "quick" update after all.  That's what's going on with our girl right now.

Wednesday, November 3, 2010

Surgery 6000 miles away

Finally....after two years of trying..."baby" K had her first cleft surgery by the German craniofacial team that travels to Bishkek.  We are so incredibly grateful to all of the people involved in making this happen.  I am absolutely blown away by the results.  She is exactly one week post-op and the surgery looks to be a huge success.  She was beautiful before, and she's beautiful now!  There's lots of healing to take place so as long as there are no complications, the repair will continue to look better and better.  I only wish she could be recovering at home with her family.

August 12, 2010

November 2, 2010

Tuesday, November 2, 2010

Happy Adoption Day, Dolly!

One year ago today, our amazing, little miracle baby officially became part of our family.  Little did I know then how much she would change our lives.  This last year has definitely been a roller coaster - a little scary at times and a whole lot of fun!
We are celebrating tonight with a cake that big brother desperately wanted to make for his little sis and Thursday we'll all take the afternoon off, go out to lunch, take a very exciting trip to Department of Homeland Security for our one billionth set of USCIS fingerprints (okay, that MIGHT be a LITTLE dramatic), and then back to school for E's 4K Halloween Party that was cancelled last week due to a power outage.

Here are M's stats from her 15 month well-child appointment yesterday:

head circumference - 42.2 cm (below 3%)
length - 28.6 inches (7%)
weight - 21 lbs 8 oz (30%) - quite a feat considering she started life out at 1 lb 7 oz!!

This little lady has taught us so much over the last 12 months!  We love you, Dolly, and we are grateful for you!!

November 2, 2009



November 2, 2010





Monday, November 1, 2010

Halloween weekend

Cookie making

REAL men wear Crayon hats!

Is there anything more fun than playing in the leaves?

E started basketball last week.  This is the "seriously, Mom, take the picture, you're embarrassing me" pose.

Building a caterpillar treehouse.

My silly, blue crayon.

My very happy, purple butterfly.

Ready to go Trick-or-Treating!

Walking around collecting candy is HARD work!

Friday, October 22, 2010

Two more sweeties coming home!

My great friend, Michelle, and her super-husband, Keith, are leaving tomorrow to bring home their beautiful new daughters from Ghana.  Please pray that they have a safe, uneventful journey - it's been a long time coming for them.

Thursday, October 14, 2010

Another fight, a milestone and fall fun

I'm on a mission to have Synagis covered for M this season.  She got it last season because she was a 25wk preemie under 12mos old.  Now she is almost 15mos and while still gestationally under 12mos, MA says she doesn't qualify.  Some of the conditions that DO qualify are cardiac problems, lung disease, congenital airway conditions, neuromuscular conditions, etc.  Hmmm.....subglottic stenosis, subglottic cysts, strider, cerebral palsy, hydrocephalus, epilepsy, infantile spasms, and extreme prematurity - I would think one (or more) of those things would fall into a category.  I, however, seem to be more logical than insurance companies.  So, yet another battle ensues.  At $1500 PER SHOT (it's given monthly for six months), we just don't have any way to pay out-of-pocket for it.  I feel like such a failure that I can't give my fragile daughter this simple protection.

In happy news - M hit a milestone, sort of! Yesterday, she was napping in the living room. I heard fussing so I came in and this is is what I saw. Okay, not exactly this. Despite her distress, I ran to get the camera, rolled her back over and waited a second to see if she'd do it again. I know, mean mommy! This is her first official solo roll!! 


We've been having a great fall.  The weather has been incredible and we've made it to Pumpkin Farms and have been able to play outside a lot.  We're headed up North this weekend for a party with friends.  Here's a few photos of our recent fun and of some of M's new gear.

Two weekends ago at one of the many Pumpkin Patches we've visited - it was COLD!

The Otter - M is LOVING it!  She can finally enjoy a relaxing, SAFE bath! 

Last weekend's "Boys' Camp Night"


M's new rig - it is so great!

Another Pumpkin Patch - warm this time! 

Is this not just a really cool picture?