*side note:

The dentist said that Corrigan’s teeth were “beautiful” to which Connor replied, “Well he doesn’t eat anything, they should be! They’re practically just for show!” ha! Someone was a bit bitter that there was a teeny tiny cavity on one of his back molars (*ahem*) but all joking aside, did you know that tube-fed children actually can have more decay than children that eat normally and should be seen more frequently by a dentist?

It seems contrary doesn’t it?  The act of chewing creates saliva which helps to remove bacteria from the teeth and children that rarely/never chew miss out on that process.  Plaque buildup can cause chest infections and lead to bad breath and tube-fed kids often have reflux issues which cause acid to come back up and lay on the teeth.  Also, chewing exercises the gums and tube fed children can also have gum issues. If you have a child that has oral sensitivities on top of all of that, the fight to even get a tooth brush in the  mouth is a twice daily event and can cause added stress and further refusal to take things by mouth.

Thankfully Corrigan likes a toothbrush, which is really strange since a spoon and fork freak him out, but he opens willingly for me and will even scrub his own teeth pretty well by himself.  He evens lets me floss his front teeth!  I have to be very careful with toothpastes because he does not know how to spit but our diligence on his dental care is paying off.  I cannot imagine the issues we would have if he had a cavity and needed a filling, full sedation I suppose would be needed, but thankfully everything continues to look good and there have been no problems! 

Okay, so back to the morning…

A trip through the drive-thru didn’t brighten his spirits and he fell asleep with a french fry in his hand and a single tear on his cheek. It was pathetic.  When we got home he threw up once and then fell asleep for less than an hour.   I felt oddly calm about it, I feel fairly confident that his ammonia is stable but something is definitely working on his system. It would make sense that he picked up something because he was in church on Sunday, went to school all three of his days this week, and has spent a lot of time in a hospital in the last two weeks.

By this afternoon he was perked back up to his normal energy levels, the Motrin knocked out his fever and it hasn’t yet returned and he seems okay.  I was on the phone with his dietitian, discussing his amino lab report and whether or not to institute his sick-day protocol, when I spotted a big fat arch of color out of my kitchen window.  I ran up to grab Corrigan and we stood on our side deck ooohing, and ahhing, over his first real life rainbow!

He is absolutely smitten with rainbows and loves to point them out in books and on signs, but this was the first time he noticed one in the sky and it was so close to our house that it must have been amazing for him.  He pulled his Daddy down to his level and said, “A wainbow….whoa!”

It isn’t the prettiest view outside of our doors, and who knew that rather than a pot of gold there is actually a tattoo parlor at the end of the rainbow, but whoa….indeed.

I love the wonder in his eyes…

He didn’t want to come back inside, and apparently I was all kinds of “in his way” here…
 (Mom, move! You’re blocking the wainbow!)
…but baby, Mama just got her camera back out of the shop and I missed shooting your beautiful face!

Enjoy your weekend…may it be happy and healthy!

Corrigan is delayed.

Corrigan is delayed a lot but that is not a big shock. Watching him being tested was painful and because I’m pretty much the only person on Earth that understands what he is saying, they allowed me to be in the room while he was tested. It was difficult.

Corrigan is not a good tester. Standard tests are not good at identifying his strengths and the results paint a bleaker picture than what is actually true. Corrigan takes awhile to warm up to a new room, a new table and a new person, so when you take him into the windowless location, plop down some pegs and a peg board and introduce yourself to him for the first time, you’re not likely to get good results because Corrigan needs time. Testing never allows for a lot of time.

It went poorly. So poorly that the second day’s testing was cancelled and the folks that do the testing decided to simply observe him playing instead.

New hospital. New playroom. New people. Not enough time to really get a good feel for Corrigan, but it is what it is.

Corrigan knows his alphabet, both upper and lower case. He can tell you what sound those letters make as well. He can count to twenty, both up and back. He can read and say 15 sight words and also can read the spelling of colors, and yes, he recognizes all of his colors in rainbow order. Corrigan, academically, could kick kindergarten butt but guess what? Three-year olds shouldn’t be concerned with sight words and phonics. It is great that Corrigan can identify a bunch of separate things in a picture book but he is absolutely unable to apply it to the life around him.

Corrigan knows what a cup is. He can both speak the word, read you each letter, tell you what sound each letter makes and sign it for you in American Sign Language but when that cup is one of four pictures on a page and you ask him “Corrigan, which one do you drink with?” he stares at you blankly.

He doesn’t call me by a name. I am not Mommy, or mama. He doesn’t identify Daddy by name either. He doesn’t understand the concept of hot or cold, or more importantly, safe or danger. He doesn’t know what feelings are (happy, sad, mad etc.) in a way that he can explain, and doesn’t show any change of expression if he sees another child upset or angry. He doesn’t engage in imaginary play, like pretending to be Buzz Lightyear while playing in his room, but he can tell you Buzz’s catchphrase in a mumbly, garbled way.

His ability to not only understand the world, but interact naturally within in it is nearly non-existent. He needs different kinds of therapies than he is currently getting and, thankfully, his IEP meeting is coming up soon. We need to change his goals and we need to find new ways to achieve them. We need to find ways to help him learn, and navigate, in ways that are totally foreign to him and to be honest, someone needs to teach me how to teach him too. I’m at a loss at how to teach something that normally comes easily for most other humans.

Corrigan is a complex kid for someone that seems so simple. He isn’t just some robot spouting off letters and numbers in an automatron kind of way. He looks into my eyes and I can see his desire to impress me. He wants me to be proud of him and basks happily in my enthusiastic, cheerleader-style encouragement. He doesn’t want to be confused. He doesn’t like not being able to understand what the boy in the grocery store is saying to him. He wants to be normal, whatever that means. And I think he will get there. Given enough time.

Sure, I wish it were now. I wish that I didn’t have to check a thousand “no’s” on the booklets I had to fill out prior to testing, “Does he follow two-step instructions?” No. “Does he know at least four body parts?” No. “Is he able to say his name?” No. “Can he pour a glass of water?” No. “Is he potty trained?” No. “Does he show you where he is hurt when he injures himself?” No.

But is he hilarious? Oh mercy, yes. His laughter is infectious. When Mark, Connor and I are all singing a song that he loves, he will tilt his head backwards a bit, smile so big that I can see every tooth in his head and then fall backwards with glee when we finish. He can light up a room with his cheers of happiness. There is a light in his eyes that burns so brightly it can take my breath away when he looks into mine.

He is musical and has an uncanny rhythm for his age. He doesn’t just bang on the piano, he spreads his little fingers out as if he is about to play a chord and moves his two hands separately, in imitation of a real pianist. He will sit for long periods of time, without touching the keys, on the bench beside a pianist while they play. His little body sways with the sound and sometimes, against his will I think, song will burst from his mouth, though Chopin doesn’t have lyrics.

You can’t teach someone to feel music the way that Corrigan does.

We bought him a toy drum set and set up a playlist, on YouTube, that is full of other youngsters banging away on their kits. The moment I put the videos on the tv, he runs to get his sticks and sits down to bang along. Even when his videos are not on, he will sit at his drums and sing a song, Row Row Row Your Boat perhaps, and using both hands independently, tap out a beat while he sings. He has taught himself, by watching videos, how to tap the bass drum pedal while playing. Not yet in perfect rhythm, but he will get there. If he continues to show interest in the drums, a junior drum kit may be his birthday gift this year. He plays so fast his drumsticks seem invisible in photos…

(strategically placed drum to protect modesty)

Corrigan doesn’t enjoy being read to. Maybe he doesn’t like my attempts to give the characters a “voice?” I know that when I read “There’s a Monster at the End of this Book” to Corrigan, in my very best Grover voice, Connor shakes his head and leaves Corrigan and I behind. I have no idea why, I mean, my Grover voice is spot. on. Okay, fine. It isn’t, but I try. Corrigan isn’t interested but every day, several times a day, he will get out all of his books and sit among them, and on top of them, and “read”. Sometimes I wonder if he can read, he takes his time and when I watch his eyes, they move along as if he is silently following the story.

Often I will tip toe into his room and find him quietly “talking” in his closet, books spread all around him, and watch as he slowly goes through his favorite books, studying each page and sometimes babbling out loud.

He loves rainbows and turtles and his grumpy old dog. He would take ten baths a day if I let him and never cries if the water gets in his eyes. In fact, he laughs if you pour water on his head, another chance for me to witness indescribable joy at the simplest thing. He thinks that crayons are the best invention ever, so long as they do not break and will fill a coloring book with scribbles, not leaving a single page blank. He lights up when he sees his brother and clings to Connor’s hip like a koala. He loves to show me how high he can jump. He is an excellent jumper.

Corrigan isn’t just a number on a test result. He isn’t defined by whatever IQ they decide he sits. He is loving and joyful and fearful and unbelievably brave in the face of his disorder and I love him so much that it causes me physical pain when he struggles with properly lining up those stupid pegs in less than 60 seconds. He is wonderful and I am so very blessed that such a unique, and sometimes confounding, little boy lives in my house.

We have work to do. Brand new instructions with brand new goals and I like a challenge. I think that Corrigan will meet those challenges, given enough time, and if he doesn’t…so be it. He is fearfully and wonderfully made and that is good enough for me.

I’m tired and could probably take a nap if it weren’t for the 6 cups of coffee roaring through my veins.

Corrigan is back in school and handling his new medication pretty well.  While I still have to hold him tightly and nearly pry his mouth open to give him his dose, he is losing his fight and slowly realizing that a little bit of cooperation leads to a quicker end, and a congratulatory sip of root beer to wash it down.  We head back down to DC in a few days to check his levels and make sure that everything is working the way it should.  I don’t anticipate any issues but this is Corrigan we are talking about, we can’t rule it out.

How is it almost February and we have yet to have any significant snowfall?  We have had a few light dustings but nothing that even comes up over the tops of the grass blades.  I just want one nice-sized storm and then I am happy to welcome Spring.

Just a tiny bit of snow like we had in 2010. That is all I am asking…

(Our dog, Jericho, frolicking in the monster storm of 2010)

We bought new furniture this past summer (and my goodness, how quickly a toddler can trash a sofa) and each time I make a major purchase I make a mental note of what to look for the next time.  This furniture has the tiniest floor-to-couch-clearance in the world. Probably only three inches of space, and that is being generous.  It makes retrieving Corrigan’s toddler flotsam from under the furniture difficult and without the suctioning power, and long nozzle, of my ShopVac nearly impossible.   Once a week, or sooner if something beloved has rolled underneath, I can be found splayed obscenely on the living room floor, cheek pressed tightly against the hard wood and flashlight in one hand, while navigating the bendy nozzle towards the Lightning McQueen car that rolled, of course, to the farthest possible corner underneath.

You can call me The Extractor, I’m very good at my job but the crumbs in the ear, that part sucks…

(all of this under one couch)

The trouble is compounded by the fact that we have hard wood floors, instead of carpet, so everything just soars underneath like there is a magnet pulling it there and it is also a huge three-piece sectional, everything all hooked together, making it impossible to simply move a loveseat a bit to retrieve a lost toy.  Next furniture purchase I will be checking that clearance, though ideally zero clearance would be nice if you have a small child, or a pet. We shall not speak of the dog-hair creatures that are forming under there and are likely planning some sort of mutiny.

Flotsam and Mutiny in one post?  I’m feeling all sea-captainy today. Speaking of sea captains, I just tripped into a rescue boat, so nothing I posted here is my fault.

Oh, news-related humor.  I am surely no Andy Borowitz.

And that, folks, is all I have today.  Riveting, right?

Be happy!

(hanging out in the hotel)

It has been a rocky transition due to the fact that the new drug is not currently able to be administered through the g-tube so we have had some struggles with Corrigan taking it orally, but he took 100% of his morning and afternoon dose today and I think that in a few days it will become less of a struggle for him.

(snuggled in before bed)

We had some interesting conversations with child psychologists about Corrigan and I will post more about that later this weekend but we are happy to be home and look forward to finding out, next week, how his labs return after a full week on the new drug.  Not looking forward to DC traffic again but thankful that we live within driving distance of experts at Johns Hopkins and Children’s National in DC.  I don’t know how we would handle this disorder if we lived in the rural midwest.

(Crayola Twistable crayons are awesome-but FYI not washable)

(looking for airplanes)

(“Cheese!”)

One of the best parts of our time in DC was that I was finally able to meet my friend, Sairah, face to face! Her little boy was born with the same disorder as Corrigan but was successfully transplanted nearly two years ago and is doing great! We have been “internet” friends for a long time but to finally be able to hug her, to look into her eyes and make that connection was such a blessing. I’ve said it on Facebook so many times and probably said it many times here, but there is just something special about UCD families. I’m sure it is the same way for all of the other disorders and diseases. Support is key and I have had the distinct pleasure of receiving so much love and support for others living with Urea Cycle Disorders, I don’t know how I could have made it this far without them. Whew, to be able to see our two boys playing together…laughing and smiling…it takes my breath away. I wish we lived closer but the internet erases the miles.

(Sairah!-she brought us cupcakes. TRUE FRIEND, right there!)

You know what else I loved about being in a children’s hospital? There were no looks of pity from people when they saw Corrigan with his feeding tube backpack on, or when I needed to bolus his feeds.  There were lots of kids with the tell-tale little white tubes peeking out of their shirts, and tiny backpacks on tinier toddler backs.  No one felt sorry for us or told us “Bless your hearts.”  We were among “our people” and there wasn’t an ounce of judgement, not a lick of pity, not a hint of people trying not to look but totally looking.  Other than the man who helped take the bags from my trunk at the hotel, there were no “what’s wrong with him” remarks.

It was a comfortable place to be and when the new children’s hospital opens, April 29th, at Johns Hopkins we will likely find ourselves solely among “our people” again but in a different building.  Where the kids are not disorders, they are simply kids…kids with bald heads or wheelchairs or long white tubes carrying nutrition directly in to their tummies.

For those of you that knew about our trip in advance, thank you for your prayers and offers to help us while we were in the city.  We are so grateful for your love and support every step along the way!

More than a year ago, Corrigan’s metabolic doctor brought up IQ’s and stunned us with her prediction as to where Corrigan will likely land on that scale. It was a hard conversation for us and I don’t remember a lot about that day but I do remember one specific remark. She told us to make sure that we taught Corrigan to be kind and polite. She said that even if he has obvious limitations, he will be received more positively, throughout his life, if he was kind and had very good manners.

It wasn’t advice that felt important in the grand scheme of things but it stuck. It took a few weeks to shake off the idea that he might never reach a normal IQ and we needed a bit of time to grieve in that regard but with time came a certain amount of peace and that brief comment about politeness became a big focus.

Corrigan could sign “please” and “thank you” pretty easily but didn’t always use it in the proper context. Over time, though, he caught on and eventually added the words. What was once “mease” for over a year has recently turned into a far better understood “pease” and his sweet “dank do” now has a humorous “ca-ca” tacked onto the end. He now says “dank do, ca ca!” which I suddenly realized was his rendition of “thank you” and my always immediate reply of “you’re welcome!” He used “dank do, ca ca” quite frequently while he was in the hospital last week and also charmed the staff with lots of blown kisses and jovial “hi’s” when greeted.

He absolutely was treated better because he was sweet and polite and because of his manners they forgave the fact that he often firmly said “BYE BYE!” the moment they walked in the door. He might be polite but he also isn’t interested in being fussed with every hour.

While we were admitted there was a sweet young man in the room next to ours. I am terrible about guessing ages but I would say he was probably 11 years old, approaching 12. He was alone most of the time, though we spent a lot of time hiding in our own room so I can’t say for sure it was all day, every day, but such is the situation for many parents of kids with chronic disorders. Sometimes the child needs to stay hospitalized for long periods of time and the parents have to continue to work to pay the rent on the house for that child to come home to. Some parents hire sitters and others rely solely on the nursing staff to keep an eye on the patient until they can get there in the evenings.

From a distance though, I noticed this young man had a beautiful smile and lovely manners. The staff seemed genuinely affectionate towards him and let him hang out with them behind the nurses station at times. He was a genetics patient, like us, though I’ve no idea his disorder (nor should I) but our nurse mentioned that he was a “frequent flyer.”

Every Wednesday, the folks from Child Life Services do a hospital BINGO over the closed circuit tv channel. Each child is given a BINGO board and watches the channel to play along and can pick a prize among dozens that are displayed at the start of the event. They allow 8-10 winners per round and they play three full rounds. The patient can win once per game, but not twice in one match.  Every child is given a prize just for playing and it is a wonderful little respite from the monotony of hospital life.

We had three back-to-back doctor/Ortho/dietary interruptions during BINGO so we missed out on a chance to win a big prize but we have won something many times in the past and didn’t feel slighted.   Our nurse was also assigned to the boy next door and later that evening he told me what occured. At the start of BINGO the specialist reminds the kids to jot down, or have an adult write down, at least 3-5 prizes they might enjoy should they win. That way if someone else picks the prize they want, they will have others in mind to pick instead. Our neighbor, bless his heart, had only one item written down. During the first round, he didn’t win but was not discouraged. During the second round our nurse told us that he won and was so excited because he saw, during the prize preview at the start, a Philadelphia Eagles pillow pet. His older brother loves the Eagles and he knew that if he won, he wanted that pillow for his brother.

Not for himself, mind you. He didn’t have his eye on the video games that would make his afternoons a little less boring, or the cool racing cars or magic kits but instead, he only had eyes on something for someone else. I was incredibly emotional for most of our stay and when our nurse told me this, I burst into tears. How selfless, how wonderful that this sweet boy, who has no doubt had countless hospitalizations, who has had more trauma and stress than most kids his own age, was raised to be so generous.

But it gets better because, you see, after the ten minute break between rounds, that boy cleared his board and in what I believe was Divine recognition for his generosity, won again. This time, I’m told, he picked out the prize he had secretly wished for since the start of the game but never admitted he wanted in the first place. He won TWO prizes and my heart exploded with the beauty and fairness of the moment. A prize for his brother and a prize for himself.  Kindness leads to more kindness. Selflessness really is a beautiful thing and the rewards are greater than a toy prize. I’m recommitted to teaching Corrigan these things in honor of our sweet hospital neighbor and be an even better example of those things for him.

My goodness, kids really are the best teachers.

Good character is the best tombstone. Those who
loved you and were helped by you will remember
you when forget-me-nots have withered. Carve your
name on hearts, not on marble.

~ Charles Spurgeon

(my Mother-in-law loaned me her point-and-shoot camera for the weekend. It was a nice treat.)

Still limited to cell phone photos over here.  I put my camera in the shop on December 7th and then all hell broke loose in our lives, not to mention so many weeks of missed work so the repair fee isn’t in the budget, that it still sits, ready to be picked up, downtown.  Surely they wouldn’t sell it, would they?

I have about a gajillion photo apps on my phone though and I love being able to edit from the palm of my hand.  They would probably never print very well, but I am super thankful for the camera phone!

We are home from the hospital.  We got home a little after 9 pm last evening.  Corrigan napped the second half of our trip so that when we walked in the door he was so jazzed at being back that he, literally,  danced and skipped around until 11:30pm.   I came home to a spotless house and a fluffy, nice-smelling dog.  I don’t know how my Mother-in-Law performs such miracles but I could have cried at how amazing everything looked.

We were so lifted up these last 6 days.  My Dad drove into Baltimore every single day to sit with me for hours…to give me the support I so desperately needed.  Tuesday morning was a bad, bad one…all of the hospital errors were compounding by the hour and as hard as I was trying to hold it together, more crap kept flying at us until I was sobbing into my phone while my Dad listened.  His appearance that afternoon gave me the strength to get through those that followed and I am forever grateful.

The phone calls, emails and texts were full of love and support, I don’t even feel worthy.  While Corrigan isn’t aware of all of the stuff that was going on around him, I am sure he felt the stress and a calmer mommy is a better mommy.  There is a switch that gets flipped when our kids get sick and it keeps us from melting into a puddle of emotion and allows us to focus without distraction on the task at hand but my switch has been broken by weeks and weeks of stress that compounded and pounded me into the ground.

I wasn’t the strongest Mom on the unit these last six days but I’ve learned a lot from everything and I am working hard to get a grip on some things that have prevented me from being the Mindy that I should be.  I need to do better and be stronger.  Pronto.

Corrigan is doing well.  We didn’t leave the hospital with the perfect numbers we were hoping for but they are far better than they were these past few months but the longer we stayed in the hospital, the more dangerous it was getting for Corrigan.  We couldn’t afford for him to catch the RSV or stomach viruses that were filling the hospital, his system just couldn’t take the hit.  We head back down next Friday to see how he is responding to a new diet plan and then we will be heading into DC, near the end of January, to participate in a Long Term Clinical Trial for a drug that we hope will be a true blessing for Corrigan.

But for now we are thrilled to be back with Mark and Connor and look forward to some quiet days.  We all need some fresh air and sunshine and it looks like the weather might cooperate.  Stay well!

The heat is finally back on in our unit and we are starting to thaw out. I hope that never happens again!

I had an entire post typed but it didnt post. Ugh. Long story short, the heat has been out on our unit all night with freezing air blowing out of the system and no way to turn it off. Warming packs were delivered around 6am. It has been a long, miserable night. It is less than 60 degrees in our room with a hard breeze from the vents. We are layered in street clothes over top of our pajamas. Im so fed up with this place.

Corrigan is back in the hospital but this time at Johns Hopkins. It’s been years since we’ve been admitted here for a hyperammonemic event but this time his ammonia reached 240 and we were fortunate to be in the area visiting family.

Corrigan has been here since Saturday morning and as of today his ammonia is back to his “normal.” However, this is the second hyperammonemic event for him in 14 days so his team wants him to stay hospitalized while they wiggle some things around with his diet and meds to see if we can get him metabolically stable.

He hasn’t had perfect labs since June and the changes they are making at his regular appointments aren’t helping to improve his amino acids. Taking a step back ( closer to June’s diet and meds ) can destabilize him a bit so he needs to be here until at least Wednesday…maybe longer ( groan).

Since we came through the ER for the first time in over two years, Corrigan was given a new Project Linus blanket. I don’t know how to link on a phone post but if you Google ” project Linus” you can learn more about the wonderful folks using their talents to bring comfort to sick kids in hospitals across the country.

In the photo above you can see how faded the tag is on Corrigan’s favorite Project Linus blankie. Sadly he has many beautiful Linus blankets but the pink, blue and white one is the lovey he cannot live without. In fact, I joke that when we hear Corrigan retching, about to vomit, the proper reaction is to first save the blanket and THEN lift the child to make sure he doesn’t choke. And by “joke” I mean, “I’m dead serious.”

A puked-on blanket means nearly two hours of washer and dryer time and when you need to take a sick and frightened child to the ER you MUST HAVE BLANKIE!

He will not eat, drink or relax without it at least nearby but his new blanket has piqued his interest and is now always entwined with his old one. I dare to hope we may have a backup blanket but I can’t force that kind of connection.

I do know that I’m so thankful to those that hand-make these beautiful blankets. I was excited that this new one had the actual name and address of the lady who made it…I’m going to send her a photo and a thank you note.

Corrigan is doing great here. His ability to adapt is something to marvel…especially if you know how active he is when he is not hospitalized…I hope his patience holds for several more days!!

(This is the first time I’ve ever blogged from my phone so please forgive me if this is wonky)