25 1/2 months old.

It has been a few weeks since there was a Corrigan update and I know that many of you only stop by to check on Little C… so I thought I would quickly review how things are going.

Diet: We finally made the transition from formula to milk.  I actually had the new “recipe” of milk+ (pfd-1)+meds for several weeks but did not want to change a thing until we reached his “Yay Hooray!” day on July 3rd.  No more Carnation Goodstart for this big boy, he is now drinking straight out of the fridge (in carefully (very carefully!) measured amounts) and we also made the switch to not give any more medications by mouth.  There is no need to subject his tooth enamel, taste buds and esophagus to the harsh medications since he has a nice little avenue straight into his tummy now.  The only thing that goes into his mouth,  (with the exception of a little added special mix made for inborn errors of metabolism), are regular foods and drink.

(disclaimer: All changes in Corrigan’s regimen were made by his Doctor at Hopkins and I only implement those changes as instructed. Do not ever make ANY changes to a UCD diet without the order from your child’s team.)

I had hoped that he would be more willing to drink his daily allotted fludis once we took the strong medicines from the mix but actually, I think that he had grown quite used to the flavor and now fights me for every ounce. *sigh*  It is never easy with Corrigan.  I try not to let it stress me too much since I know that I can always tube feed whatever he does not drink but I dream of the days when the only thing we use that tube for are medications.

Sleep: *^&$%*&@!%@@!*#@  <—and I mean that. Every single symbol.  He tricked me for awhile by sleeping from 9pm until 5am.  He did that for three consecutive nights, not long ago, and it was glorious. (Not that I went to bed at 9pm…oh no…that would make too much sense. Instead, I was certain that he was going to trick me so I stayed up and waited far too long)  Then, on the 4th evening, he woke at 3am and refused to go back to sleep. From that day since, he goes to bed (willingly and gladly!) at 9pm but wakes between 2:50am and 3:30am and is up until 8 or 9am.   No amount of scolding, trips back to his bed, bottles of delicious juice to lull him back to sleep…not a single thing works.  He will either get up, play awhile in the pitch black of his room and then scream and kick his door…or he will lay in bed and scream until he throws up.

I can count on both hands(and maybe half of the toes on one foot) the number of nights that I have slept more than three consecutive hours since Corrigan was born.  I am completely worn out, suffering from small anxiety attacks late at night now, and some days feel like a ghost.

Yet, Corrigan is worth it all.

Therapy (development): It does not feel as if we are making any great strides in Corrigan’s speech. Eye contact is still very lacking and I think that his lack of eye contact is preventing him from watching how speech is done physically and no amount of holding things next to my mouth and repeating the word a thousand times is working to help him learn. This is actually a very frustrating aspect of Corrigan’s care right now.  His only new words, in 2 months, are “car” (which he pronounces CA-OOH) and “shoe” (which he says so clearly that it is startling) Once in awhile he holds up five fingers and says, “Bive” but not often.

Recently, one of his therapists noticed that he cannot sit up from a prone position without hooking his feet under the couch or tv stand. I had noticed he was doing this lately and also spotted sores on his toes from doing this on the hard wood of the entertainment center but I thought that he was just being lazy.  Apparently, he has some issues with his core muscles (stomach) and may need some physical therapy.  It also explains why he still runs so haphazardly and falls quite a bit.

His balance has always seemed “off” to me but I recall way back, when Corrigan was only a few days old, that one doctor or another mentioned that kids with Urea Cycle Disorders are often clumsy and have issues with stumbling etc.  No one ever explained why to me but it has hung out in my head for awhile now.  We have noticed that his ankles, especially his left ankle, seem to be turning inward more than normal but we are not experts so we need to get him to see an expert soon.

Mood: Corrigan has a wicked temper. The tantrums that included head-to-floor banging have gone away, and he is learning to settle down far more quickly than a few months ago, but he still seems full of rage at times.  He swings so wildly from happy to angry but I know that this can be common behavior for 2-year olds so I am waiting it out a bit before I get too concerned.  Connor was such a mild-mannered kid that this “terrible-two’s” thing is new to me.  When I am feeling especially strong (emotionally) I will log into BabyCenter and check in on the moms and kids that were all born the same month as Corrigan (May 2008) and I log off feeling okay that these mood swings are probably typical for his age considering the amount of posts on the board that begin with, “Help! What happened to my sweet and happy baby?!?!?!”  haha.

There is a pretty good possibility though that these temper/mood issues could be the result of damage/irritation to his brain from his hyperammonemic (high ammonia) episodes.  Behavioral problems, learning disabilities, ADHD etc are pretty common among those with Urea Cycle Disorders and we have tried to prepare ourselves for this but we are struggling with how to discipline a child that may, or may not, be able to help the way that he acts. I have considered books on discipline for the difficult child but at this point it is really just hard to get Corrigan to focus on us at all, let alone attempt a discipline style right now.

It feels like that if we do not start figuring out how to handle these issues now we are looking at a world of trouble a few years down the road. It is already hard enough being the parent of that kid when I take him out grocery shopping, or when we lose our minds and think that we can try eating out in public, but people are slightly more understanding because he is a short little cutie-pie with cherub curls, chubby cheeks and looks like a young toddler…that all changes when he is 7 years old and flipping out at Walmart.

Yeah, I know. I care far too much about what other people think.

Medical Procedures: We finally have a date for his repeat endoscopy.  On August 16th, at 7:45 am, they will go back in and see if Corrigan’s ulcer has healed and if any of the polyps have degraded into more ulcers. At that time they will remove the garden hose from his tummy and replace it with a “button.”  If all goes well, this is a planned same-day procedure and afterward, we will spend the day and night at PapPap’s watching him closely before returning home.

Other Issues: Corrigan’s insurance was cancelled. It is a long, convoluted story that would take me far too long to type but I only got 2 hours of sleep, last night, so I think I will summarize as easily as possible.

Someone with the ability to turn our lives upside down with their carelessness made an error. It is pointless to try and make anyone own up to anything. Everyone is now aware of the urgency of this situation. We have a wonderful advocate in Cor’s insurance case worker (Thank you S.  Without you, these past weeks, I would have given up) and together we have bothered the right people endlessly to get some answers and get things back to where they need to be.  We are not there yet. In fact, we are not even halfway there…yet…and it is a scary place to sit.  Corrigan’s typical 3-day hospital stays are around $16,000.00 and his one medicine, alone, is over $1800.00 a month. (Possibly more at his current dose, I am terrified to ask)  That medicine is due to be refilled in the next 9 days and it keeps Corrigan alive. Without it, within 4-5 days, he would not be with us here anymore. You can see why someone else’s carelessness (and all of the subsequent “couldn’t-care-less-ness” of the people in charge of the insurance decisions) has me gasping for air at 2am.  I am hopeful that things will work out soon. We certainly still qualify for his MA financially (and the income amount is generous in Maryland) and we have filled out all necessary paperwork and faxed a million pages of information…it is now just about waiting. And praying.

Overall, Corrigan is exhausting but amazing all at the same time. He is so joyful and sweet the majority of the time but the feeding struggles, the lack of sleep, the temper tantrums, the developmental delays that keep getting bigger and bigger and the worry with his insurance, have left me feeling hollow and, quite honestly, sad.  This morning was a particularly bad morning for me, emotionally, and I am quite embarrassed at my lack of self-control.  We do not have it that bad. My child is stable, he is surrounded by people who love him and professionals who want to help him. Mark is back to work, we have a roof over our heads and food in our cupboards. We are not watching our child struggle with cancer or planning his memorial service like so many others have to do each and every day. We are incredibly fortunate and I feel ashamed to feel so overwhelmed but I am only human.  I just want the very best for Corrigan. I want to know that I have done the very best for Corrigan. Some days are a lot harder than others to be the best mom that I can be for him. Both of my boys deserve someone that is 100% up to the task of being the parent that they need. I am still working on that. Tomorrow will be a better day.

Mindy

5 thoughts on “25 1/2 months old.

  1. Hi Mindy, I really love this photo. I’d love to know some technical aspects of this image, if you will. Now I know that you have a terrific subject, no question about that, but may I ask what lens you used and how you metered for this exposure? I try these kind of photos but I’m not nearly as succesful as you. You can send it to me at my email address, if you will, instead of replying hear on your blog.

    gcriff@msn.com

    Thanks.

    Like

  2. Mindy, I do want to add one other thing. I know that the one thing you can’t teach me is the love and caring you have for your family. That is something that comes across in a strong way through your posts and photos. I know that you can tell me the technical aspects of this photo but there is no way you can explain, other than the way you already have, the love that is in your heart for you husband and son’s… 🙂

    And I think that’s cool…

    Like

    • (emailed to you Glenn but will copy information here too in case anyone else wants to know)

      As you can tell from so many of the same (similar) shots that I do love window shots! Mainly because I have terrible lighting in my house, and am only adequate in the use of my external flash and window light is readily available! Also, with Corrigan, he loves watching the cars go by the house so it is often the only time I can snap him being somewhat “still” (even in this shot though you can see that his hand moved!)

      I shot this with my 50mm 1.8. The nifty fifty. It is the best lends for the poor lighting in my house but can be pretty cramped to try and shoot considering its focal length. I am dreaming of the 35mm.

      I will be honest with you, this was just practice for me (these photos) because I usually shoot with my old digital rebel but am borrowing a Canon 20D for some “real” shoots that I have coming up in the next few weeks ( I have generous and trusting friends, eh?) I think that I only had the camera for one day when I shot this series of photos. I was trying to learn the settings.

      I love shooting wide open, at 1.8, but I find with Corrigan I get a better “keeper” ratio by shooting stopped down a wee bit and, earlier, someone said that they thought that the “sweet spot” on the nifty-fifty was around 2.5 so I tried using that aperture here since I had plenty of light from the window.

      The window was recently cleaned (by my husband, no less!) so I knew that I was going to be getting prob. an F stop more of light than with my usual dirty windows but the window is North facing which gives me pleasing light and I shot later in the day, around 7pm, so I was not going to get the harsh shadows (especially under the nose) like I can get when the sun is higher in the sky.

      When it comes to metering, TRUE metering, I will admit to being WAY less than an expert. Especially on the 20D but I am studying. From what I understand the 20D does not have spot metering. I have it set on evaluative. Basically, I point the camera at his face, I think that I locked the exposure on this but maybe I tried that later in the series, but I shoot one, check the histogram and adjusted my exposure. I do believe that if he were more backlit I would have chose partial metering, I will have to try that today.

      When I shoot these kind of window shots, I almost always underexpose deliberately because I know that the black and white post-process tends to blow out any hotter spots…especially on his smooth, pale little face. Oh, and my ISO was at 400…this camera can handle much higher ISO than my Rebel (for sure!) but I knew I was going to underexpose it and didn’t want too much grain in the shadows which ALWAYS happens with me.

      I uploaded the SOOC shot for you here to check out…the histogram shows that it is def. underexposed but I think that, aside from the obvious white balance issues ( I like a little red in my shots that I know I am converting to black and white!) , it is not all that bad.
      https://mooneyequalsmc2.wordpress.com/?attachment_id=3132

      It is so easy to blow his skin when I shoot him so I just shoot a notch or two underexposed and bring it back to what I need in Camera Raw but this series, for some reason (prob. me messing with settings as I was practicing on this camera that was new to me) I shot in JPEG only. Good thing I didn’t blow the skin terribly!

      As far as set up…anytime I do a window shot, I like the background to be as dark as possible so I turn out all of the lights in the room or try and hang something to block the light behind the subject. In this case, an old green fleece blanket. It is nothing but bright white walls behind him otherwise.

      I hope that this helps you some. If YOU have any advice for me on metering I am a willing subject. I do have a light meter around the house somewhere but I think that the newer digital cameras do a pretty good job in-camera so I never took the time to learn how to use it. Should I?

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      • oh and I wanted to add that after I processed this shot in Black and White I can def. see that the skin on his upper cheekbones now seems blown. I have not pulled it up in Photoshop to check but I can almost bet I blew that part of his face. It doesn’t bother me too much, I have always liked the sharper contrast of light and dark in these kinds of shots, but I have not had it printed yet so I wonder what it will look like when I do see it on paper. Hmmm. I also debated on bringing back some of the detail on the back of his hair, his curls, rather than such a deep black but, again, I love the sudden drop-off of light on shots like these, I call them my “ying and yang” shots because of the way the light just goes to black…here are a few links to other shots I have done like this..

        http://www.flickr.com/photos/rhidundantx2/116152867/in/set-112382/

        http://www.flickr.com/photos/rhidundantx2/176523480/in/set-72057594100559719/

        and this shot was the 1st time I knew what I wanted to achieve (51 months ago according to Flickr) and posted a result. Titled it “Ying and Yang” too. lol. How original, eh? not! (whoa heavy over sharpening Batman!)

        http://www.flickr.com/photos/rhidundantx2/135973670/in/set-72057594100559719/

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  3. Oh dear. I feel for you! If it is any consolation — my children are the worst sleepers in the world. I can count on my hands how many nights that my children have slept through the night in their own beds. So I am sending you strength because I know how hard it is to stay sane without sleep. And as to the mood swings, my daughter just outgrew the twos and you described her to a tee. I offer you the hope of him outgrowing it. You are so amazingly strong and I am always inspired by you. Stay strong and know that there are many out here cheering you and your 2 “C”s on.

    Take care.
    🙂
    Traci

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