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.