Tuesday, August 01, 2017

Heart Issues, Part 982

As I've shared before, Buddy was born at 36.5 weeks because of his heart. He had an arrhythmia that the woman's hospital corrected by restarting his heart. Luckily, we didn't know about that until later. Then they transferred him to the children's hospital where it was all about getting his lungs under control, other body systems, and continuing issues with the structure of his heart.  Luckily, he was 10lb 1oz (and no, the doc didn't miscalculate) and they were able to treat him right away rather than having to wait until he was bigger. The longest 16 days of my life,

Over the last six years we've gotten a lot of conflicting and confusing information. At one point the doctors at the children's hospital considered Ebstein anomaly, but dismissed it. Ryan made them put IN HIS CHART that "Mom is not to be told" because it would have been caused by my lithium. Of course it was on the first page of his discharge papers that I saw before Ryan could hide them. I'm not a fan of lying to your partner, but sometimes it's a kindness, especially considering the circumstances--c-section, preemie, hormone craziness, postpartum depression, etc.

We've stayed with the children's hospital because they have his records from 2 days before he was born. They are good, but oh, the frustration. Getting an appointment is nearly impossible and if you have to reschedule--with ample notice--they ask you why. The appointment (echocardiogram, ECG, and meeting with the doctor) takes about four hours, which is always great fun with a small child. He has a special bag that we fill with snacks and books, my Nook with interactive children's books, crayons/markers, journal, blankie, "stuffy," etc. etc. etc. It's still an ordeal.

Our issues with the doctors start with they still don't know what's wrong with him. And every third time we have a new doctor who reviews his chart while we're in the room. This is when Buddy is at his least patient. We have bounced around from different teams, but we're currently with cardiomyopathy even though that's not really his issue. Or maybe it is. They say that it's left-ventricular non-compaction, but are open that it's not really it. His left ventricle is misshapen as are both atria, but it seems to be functioning moderately normally although there is definitely some abnormality with that as well.

Then they always want to do a Holter monitor. This is an absolute pain in my/Ryan's butt.  First, you have to schedule two days off work--one for the appointment and then the next day to monitor him while he's attached to wires. Twice they told us that they didn't have one on hand so we'd have to come back the next day--and maybe they'd have one. Too bad about your schedule.The second time I just parked myself in the waiting room--with the boy--until someone returned one. The most fun was that they wouldn't look at the results until out next visit 3-6 months later. Once they found tachycardia--two beats--that Ryan was convinced was due to him tearing his leads off during naptime.

Holter monitor with a little cross-body pouch for the device that is about the size of a deck of cards or a computer mouse. Much easier than when he was little and we had to tuck it into his onesie. 
Yes, we watch Wheel of Fortune.

And do not even get me started on the nurse who is nice enough, but completely useless.  It takes days for her to return a phone call about minor things like sending his damn prescription to the pharmacy. And then telling us after years of twice daily doses of this compounded medicine that insurance won't cover that it was only recently to a therapeutic dose. Mother of pearl! At least he finally can swallow pills.

Oh, and each trip is about $2,000.  With insurance. And finally, there was the trip--when I was alone with Buddy because everything weird happens when Ryan isn't there--when we were getting ready to leave and the nurse handed me a note to give to the school when he started kindergarten saying that he should be allowed to carry a water bottle and NO P.E. What the actual ---! I was trying to get out of the room without sobbing. Buddy is ridiculously active and if he isn't life is not good. He crawls up the walls and gets anxious and antsy and angry and... Ryan called for clarification and after a few days got to talk with the doctor. He said that we need to be cautious and when he gets old enough for team sports he needs a stress test and most likely he should stick with things like jogging, swimming, golf... We talked with the P.E. teacher for his Montessori kindergarten and were assured that he wasn't running a boot camp. I will never, never, never forgive them for just lobbing that at me without explanation,

So, we talked to Buddy's pediatrician and she referred us to another cardiologist. She did the basic tests (echocardiogram, ECG, Holter monitor). Thanks to Ryan spending an afternoon walking up and down the Medical Center to get his records, she was able to see the results from that weird Holter monitor and although she said it wasn't tachycardia it was something else troubling.  So she wanted him to have an MRI. She said that it would probably be about three hours and since Mr. ADHD can't sit still for three minutes he had to be sedated. Thanks to videos on YouTube we were able to talk about what he was going to do. He did well although he threw up as he always does with anesthesia.  We're waiting on the results and we have an appointment soon.

Right before the MRI--watch Wild Kratts and snuggling his new Scentsy bunny, Sally, who was a fundraiser for the March of Dimes and smells like pine, which is a surprisingly comforting scent. She has a little hat that they gave her so she'd look like the doctors.

UGH. I know I should be thankful for good insurance and a wide array of doctor to choose from, but it is exhausting. SO much fighting. Six plus years and it's never going to end. We have to fight to get the care he needs. We need an assistant to deal with all of the details and paperwork. And a couple million more vacation/sick days. Mainly, though, my OB/GYN had a feeling that something was wrong at my 36 week appointment and so we didn't lose him before he was even born. I feel ungrateful because any trip home from the Medical Center with a child in the back seat is a success. There are so many parents who don't get to do that. We're very, very lucky that these are our worst issues.


Tuesday, July 18, 2017

Being Involved

They're trying to build a mid/low rise across the street from us. There are a number of reasons it's a bad idea:
-random location in residential area
-will block sunlight
-lot they are trying to annex is deed restricted
-infrastructure isn't good enough for what we have now--giant car-swallowing sink hole recently in the middle of the intersection that is bordered by this development
-previous attempt by another builder died because they couldn't sell 50% of the luxury condos--for the same amount (or less) you can buy an enormous house with four stories, a rooftop deck, and a pool

So, I went to a City Council Planning Commission meeting along with some other neighbors since I'm home. I spoke, which terrified me. I wrote a script so I could read it if I froze. Ryan said he was watching on the interwebs, which made me a little nervous (don't embarrass yourself in front of the "boyfriend), but mostly comforted. I basically said it was a bad idea and I live directly across the street.

The developer said that we're ridiculous and constantly complain and they eventually get their way because the deed restrictions for the entire neighborhood are bogus. She also said that (although they haven't shown anyone any plans) they are going to build a SIXTY-FOUR car garage. Riiiight. The lot can barely fit that by itself.

The city basically said that even though the neighborhood association produced copies of the original application and the form that the developer signed saying that they knew about the restrictions the deed restrictions weren't valid because the original paperwork wasn't filed correctly they couldn't be enforced. One guy likened it to the city saying you can't say no black people. Um, duh, but not the same thing. They didn't object to the content of the deed restrictions, just that they weren't done correctly. Maddening. So, maybe they'll fight more. Maybe (we and) the city will get them as they attempt to build and realize it's not practical. And finally, like I said, I doubt they'll get enough buyers. Who wants to spend $1million+ for a condo looking out onto a crummy intersection and looking into townhouses' fourth story windows? As another neighbor pointed out, we're not opposed to progress and we live in a townhouse, but this particular project is a bad idea. We shall see..

I took the bus (sans sweater, so just a cami and I. Did. Not. Care), but some of the neighbors saw me walking to the bus stop and offered me a ride. Why, yespleaseandthankyou!

When I was in college I could barely call Domino's and order a pizza--every other Sunday. I would agonize. It was terrible. Well, look at me now!
.


Wednesday, March 29, 2017

Evaluating Buddy: It's Hard to be a Kid

Buddy has never been good with change--more so than average, I think. Preschool "graduation" last spring was tough. After that his friends started to scatter. Kindergarten was just across the street from day care and around the corner from home so that helped. A little. The first week was a dream, but after that was rough. Rough.

First day of school:


Kindergarten has been hard for him. He's in a class of 40 kids (kindergarten, preK-4, and preK-3) with two teachers and two aides. He loves everyone and everyone seems to love him. I think that sometimes he gets lost and often in between activities he gets lost and wanders and then gets into trouble. He has already been to the principal's office a few times for fighting. It's exhausting trying to keep up.

For a while he was sitting listlessly on the rug at school, unresponsive. He was crying and begging to stay home, suffering from mysterious, imaginary ailments. He did have growing pains (just below both knees since he grew 3/4in. in a month). Then his test scores were lower than we expected. I think our concern is 98% our egos and 2% lack of communication from the school. They say he's doing okay and from what we can see, he is. I don't get it.

At the suggestion of his pediatrician he is being evaluated for ADHD or whatever. I don't want to be one of those parents who wants a label for something that is really Five-Year-Old-Only-Child Syndrome. On the other hand, his doctor is super old school and conservative. If she thinks something might be there it's worth pursuing. He is being evaluated by the school district and we have already filled out a thousand forms and we're meeting with someone later this week while various adults at his school fill out forms as well.

In addition to the school district he going to see the behavioral people at Texas Children's Hospital where he's been seen since he was barely 24 hours old. Apparently, being a preemie and having a heart condition can lead to some crossed wiring (it's a real medical term, haha). While I am open to medication if it is necessary, I would like it to be far down on the list of solutions. Additionally, he does need help with his behavior. Buddy is generally sunny and delightful, but he has his times of being unable to deal with change or frustration. He gets angry and tries to break things. We're working on that. Hopefully they can help with that, too.

I talked to someone today about how to prepare him for tomorrow and it sounds like it will just be lots of "playing" from his perspective. I'm not sure if she'll talk to us since we filled out those zillion pages of forms.  We shall see.

I like to think that I always had compassion for parents of "special" kids, but this is a different perspective for me. It's not pleasant. I am a ball of nerves. I have been sniping at Ryan in a way I haven't since Buddy was first born and we were adjusting to our new roles as I was fighting severe postpartum depression. I have a hair trigger and I hate that I seem to always assume the worst. I also hate that he's going through this, too, and I should be more supportive like he is. We'll get through this and help Buddy.

It's hard to be a kid.

Thursday, June 30, 2016

Yet Another Cardiology Post

Our last visit to the cardiomyopathy team seemed pretty normal. I took Buddy alone because Ryan couldn't take the time off work.  A regular visit is:

Check in and wait
Go to the echo waiting room
Echo (usually Clifford or Arthur on the TV)
Back in the waiting room
ECG
Wait for doctor
Meet with nurse and then doctor

Usually three hours. I try not to complain because we have this amazing hospital 15 minutes from our house.

This past time (about two weeks ago) the doctor said that his heart is still not quite normal, particularly something called left ventricular non-compaction. In addition, both of his aortas (aortae?) are enlarged. His heart looks a little heart-shaped.

The doctor remains concerned about what it might do and this time I got more of a feeling that there might be a concern that it actually might rather than just being cautious if that makes any sense.

Up until now Buddy has been able to run and play, running up to three hours a day in Houston summers (under a giant tree). This visit we got a form to give to his kindergarten in August saying that the doctor doesn't want him to do PE. The nurse was talking about 504s and I was just choking back tears. I couldn't think straight enough to ask more questions: could he still play at school, do soccer, swim...??? I just took him down to the ground floor of the hospital to see the enormous collection of toy trains.

Ryan flipped out. He wanted to know more. What could Buddy do? What would he do during PE time? Ryan called and talked the doctor the next day, He got clarification and the doctor said it's okay to play and do his low-pressure soccer class. He's most concerned with long periods of running and not being able to self-regulate. Buddy's also allowed to have water if he needs it. And once he gets to the team sports stage they'll do a stress test.

Then there was lots of drama about getting his new dosage for his medication (beta blocker). Two weeks. I don't want to get into it other than the 9 million calls Ryan and I both made and then the in person visits I made to Walgreen's. Buddy's introverted parents will do anything for him.  And now he has it.

Next up is school and dealing with the 504 paperwork and then homework and everything awesome about that. Honestly. Next cardio appt. is in October with the fun Holter monitor.

I am thankful that we're so close to good care.
I am thankful that my boy can run and jump and play.
I will not fear the future.

In the meantime, he is struggling with the summer before kindergarten. He's ready to start. He's thrown in with the big kids, but he doesn't really want to be with the littles. His adorable north-African French-speaking teacher is helping. He's having some issues I won't share, but this is hard. He's going to LOVE kindergarten, but I think we're all ready for it to just start already.

He's now 4'1" and 54 pounds.
I can still pick him up.
The boy who had to switch swimming classes because he was afraid of jumping off a tower jumped off a diving board for the first time today. Twice.








Friday, January 15, 2016

Welcome back to blogging or why I got tired of Facebook

Who cares. I have some things to say and some photos to share. Maybe someone's still out here.

Buddy is 4 and a half. He is 48.5 inches tall and 50 pounds. He is enormous. He looks like a 6 year old, but acts his age. Sometimes people give me attitude about my ill-behaved kindergartener and I have to just get over it. We never know about other people's kids and what their struggles may be. We're lucky that ours is healthy. Very healthy.

He is delightful and wonderful and sometimes we just have to pray and try not to yell every minute.

He is trying to kill me, especially. After opening his windows and leaning out of his 3rd floor window, Ryan found a way to block him. Then after getting his dresser back in his room after a year of being out he climbed up the side of his bunk beds and sat on the dresser like a gargoyle.  Then he climbed up to the top of the bed and pushed the ceiling fan blades (going down to turn it on to make the blades where he can reach them).  Last night he fell asleep on the top bunk.*

Here we are at a playoff game for my school's football team. It was at the UH stadium.  Sock monkey glove/mittens. Oh, the cuteness.

I love him.


*The bunk beds belonged to Ryan as a child and his parents drove them across country for us. They're enormous and wood and huge, but they have sentimental value and where else are we going to put them? We can take off the top bed (it's just two on top of each other), but then what will he start climbing?

Sunday, January 25, 2015

Big blue monster

Little Buddy and I went on a road trip a few weeks ago.  It was full of adventure (20 minutes crouched in the nastiest truck stop bathroom complete with cigarette smoke coming in from somewhere.  As in the next stall?  He was successful, which was a huge relief to me for a number of reasons including not having to drive down the highway with a small boy screaming that he has to poop.  Now).

Rules are fluid on road trips.  For example, we stopped at Braum's in Ennis on the way there and then on the way back.  I got him a cone.  A regular cone.  Yeah, that's giant for someone under four feet tall.  And the second time she gave it to him in a waffle cone and filled it up.  WILD SUGAR MONKEY.  No one in the house slept that night!

 The shirt matched, although not intentionally.  The pants had aqua stripes.  Totally pajamas.

Who can resist "birthday cake" ice cream?  The blue stuff is whatever kid flavor is really and it had pieces of white cake in it.  Pretty darn good.  He shared it with me and I was eating it as fast as I could... so it wouldn't melt all over him...
And just because I'm sharing photos, here he is wearing a footie sleeper.  I know I'd be more comfortable if I could travel in one!  The fireman rain boots are on the small side so shoving the footie part in there was not fun, but when you're three and a half, if the shoes are cool enough you will find a way to get over any discomfort.  I find this to be true for me sometimes.

Ryan is not a huge fan of eggnog, but he loooooves Braum's eggnog.  We live about 150 miles from the closest one, so we usually don't have any.  Little Buddy and I surprised him with this half-price, after-Christmas half gallon.  Ryan was touched and pleased.  Plus, when someone who looks like this gives you something, how can you be anything other than pleased?



Thursday, April 24, 2014

Three!

Little Buddy's three year appointment was today.  He's:
38lb 2 oz
40.75 in

HUGE.  Yet he's lost all his baby chub and looks like a little boy.  No more baby.

Running with his dad on his birthday at the park down the street.


Thursday, December 12, 2013

Little Boy

Two and a half!  I love this child so much!  While I still miss the constant cuddles of a baby, this little dude talks and plays and is just a delight.

He is...
  • 38 pounds
  • 41 inches
  • Talking constantly
  • Loves to run
  • Wants to do everything himself. "Iiiiiii do it!"
  • Is Mama's boy when it comes to sleeping.  You go into his room in the morning and he'll smile at you and then say NO about getting up.  This morning he said, "I go back to sleep" and then turned over.  We're in serious trouble when he's 16!
  • He's doing well with potty training during the day.  He still has accidents. but he's getting better.  On the other hand, we went to the grocery store the other night and in spite of FOUR trips to the restroom his father carried him out wearing only a shirt and dad's pea coat wrapped around him.  I am in love with the Tip Pee Toe folding stool--it's genius!
  • He sings constantly and knows a million songs from school (daycare).
  • He remembers things that you promised him and he's still expecting me to take him to the playoff football game for my school.... that was a month ago.  We had a bad afternoon nap experience and I let him sleep through it.  Poor monkey.
  • We're trying to take him to church and we've stumbled upon sitting on the side near the front so he can see.  He gives a running commentary in an unfrozen-shouting-Austin Powers volume, but at least he's squirming less and not screeching.  He wants you to "pickeeup," which is good fun when he's so heavy and it's like wrestling.  Most people seem pretty good natured about it, although last week a woman shushed him, then he slapped me in the face and we both went outside for a time out. 
  • He is transitioning from one class to another at school and he's having a hard time with it. 

So, your basic 2.5 year old.  He wears me out, but I can't imagine life without him.



Monday, July 15, 2013

Having a tall kid is great?

Was I just not crowing about how my boy was the tallest and smartest and greatest child in all of the land?  Yeah, well, I can't babyproof by putting things up.  The other day he was being a book-tearing pill so I put his good bedtime books up on the FOURTH shelf on his large IKEA bookshelf.  The problem is, he's 39" tall.  With long monkey arms like him Momma and Daddy.

The top is just under 5 feet.  We should be good another, what, 3 months?  Seriously, I'm in the process of going through the entire house and moving/getting rid of anything dangerous or valuable and moving it to our room.  In a bin.  In the closet.  When he finds it, it will be like the government warehouse in the Indiana Jones movies.

We have a heavy wooden chest in our living room that's technically a "pie safe" whatever that means.  Safe from flies or safe from me and my fork?  It's a beautiful piece of furniture that we "inherited" when my grandmother sold her house and it's full of all of our china and serving pieces and all of the party stuff we use once or twice a year, maybe.  It has a delicious round knob and Buddy likes to check it periodically just to make sure that the child safety lock is still on.  At some point that I don't even remember, he scored a small container of little plastic cocktail forks (from a different lifetime).  That didn't last long and since the pie safe is nice and tall they've been sitting on top for quite some time. 

You know where this is going, right?  He got them down in the middle of a lazy afternoon rather than right before we had to leave before a doctor's appointment?  I did have enough presence of mind to have to him put the picks into a bowl rather than the tiny plastic sleeve they came in.  And I do like that he's in a clean-it-up stage right now.  Or maybe he always will be, but I'm not getting my hopes up on that one.



Haha, he's going to be an engineer like his daddy.  Haha, he's going to support us in our old age.  Hahahahahahaha.... please don't break my wedding china, okay?

So, yes, I say along with moms and dads everywhere, THIS is why we can't have nice things.


Sunday, May 19, 2013

MY kid is the best kid in the entire world*

Stats at 2 year appointment:

35lbs
38.5 inches
Giant melon head

He's off the chart as far as percentiles. Those silly predictors say he'll end up at 6'4"-6'6".  Mine were wrong by an inch (I was shorter), so we shall see...

Part of me is pleased because he's big as if that makes him better.  The other part knows that I'm going to be walking around with a kid who looks 4 and is still in diapers. We're going to take out a second mortgage to feed him. And he is clearly a little boy now.  No more baby.  Except in my heart.



* Of course I think so.  He's my baby.

Little Boy

Look at Little Buddy jumping and you see why this was the crib's last day. 
Ryan says that every time he does a project, Buddy climbs into his lap to "help."  Ryan says he actually looks forward to really working together.



Little Buddy has his own tools, although his make less noise than Dad's.  He cried and cried whenever he used it.  

Toddler bed is in place and he hasn't run amok just yet...