**Taking a breath**
Once again, I've been meaning to update since the last boo hoo post about Rylan's anemia, but I just haven't gotten it together. I have just been bumbling through my days lately, more so than ever before, accomplishing with struggle only the bare minimum of tasks. My children are fed, clothed, played with, loved on and happy, but pretty much everything and everyone else is neglected. Now that I get a full night of sleep every night, I should not be this tired and lethargic and unmotivated... I am not sure if it is a physical or emotional/mental issue fatiguing me, probably some of both. I definitely had a major pity party and several meltdowns after the anemia issue was slammed in my face. I slumped into a very negative attitude about the whole thing and about our whole future. And, of course, I engaged in way too much Googling and worked myself into a complete tizzy, convinced that Rylan was doomed to a life of foggy ineptitude, if not on the verge of death at any moment. Many tears and rants later, some good visits with family and friends, and a bit more research has revealed that Rylan's health situation isn't nearly as dire as I had thought. I really struggled to pull it together though. I don't think I've ever been truly "depressed" before, but had some really down days this past couple weeks. One Sunday I didn't even want to get out of bed, and only did so in the late afternoon that day because I had to get up and get ready for company coming to stay with us... That is NOT like me. My family deserves better than a depressed, unmotivated, negative-dwelling momma, so I am working on finding happiness in my current life situation (more on that later in another post).
I feel MUCH better now that we've got a handle on Rylan's (relatively minor) health issue. Once I calmed down, I went back to our family physician the next week with a list of questions, and got a copy of Rylan's lab report and had the doctor go through it with me and explain each of the numbers. Rylan definitely has "hypochromic microcytic anemia consistent with iron deficiency", but he's not nearly as severe as I had thought based on glancing at the lab printout the first time. The number value "5" I had seen initially refers to his ferritin level, not his hemoglobin. The values that Canadian labs use are different than the ones that the American labs (and therefore all the websites) use. So Rylan's hemoglobin is definitely on the low end, and is out of the normal range, but *just* out. So he's not severely anemic, just moderately. The doctor said that his case is probably is not chronic, and should be amended fairly quickly with the iron supplements. Although I don't love our doctor and wish she was more proactive with getting on things earlier and without the need for us to nudge her along, she was pretty good during and reassuring during this last appointment. She agreed to my request to test him next month (rather than in the fall as was initially on the order), to ensure that the iron deficiency treatment is working and that his iron stores are going up. She also agreed to test his TSH (for hypothyroidism, which I have) and his B12 levels next time we do bloodwork. I feel a lot more confident that we can work though this and get at least his physical health up to par and THEN we will tackle his developmental delays. It's really encouraging that he's started eating a bit more lately and is now up to a whopping 32.5 pounds (naked morning post-poop weight).
Unfortunately the poor kid broke out in a nasty rash exactly one week after starting the Fer-In-Sol. The eczema-like rash covered his hands, feet, legs, knees and elbows and was SUPER itchy for him. We ended up skipping preschool and rushing off to the doctor the morning of the initial breakout, convinced he had some other nasty illness, but nope, it was his first allergic reaction. The doctor didn't think it was the iron supplement because most people don't react to it, but there have been No other changes in his environment that we can pinpoint. The rash continued to get worse, so against the doctor's input, we stopped giving him the supplement two days later. And wouldn't you know it, the rash stopped developing and is starting to clear. A pharmacist we talked to said an allergy to iron is extremely rare, and thought it was probably a dye or something in the mixture of the supplement, but she didn't have any other alternatives. Another pharmacist yesterday suggested we try Palafer, which is ferrous fumerate (instead of ferrous sulfate in the other one). This new supplement is also suspended in a mixture of other artificial ingredients, so we'll see what happens... In the meantime, Rylan's been offered a lot more red meat and other sources high in iron, with *some* success. Ariana LOVES meat, so I don't think we'll be seeing this same issue with her... (Though I'm sure she'll have her own quirks-- already she's not into breads or cereals and won't eat one bite of any veggie!)
So although the worry for Rylan's health has lightened, that leaves me to once again wonder about how come he's so far behind his peers in language, cognition, etc. I am the kind of person that wants answers-- I want to know WHY! If we can't entirely blame severe anemia, who/what do we blame?? Why is my son constantly mistaken for a two or three year-old?? ((This just happened today in Costco when an elderly woman commented on my children being about a year apart. When I said that he is four, she seemed shocked! She then commented on how small he is, but I'm sure his goofy babytalk contributed to the perception of him being TWO as well.)) I go back to the self-defeating questions of wondering what we could have done wrong as parents.... (You know, the real helpful questions like: Did I drink too much aspartame during pregnancy? Probably. Did we allow him to watch too much TV from a young age? YES. Did I make a mistake in going back to work at one year? Not sure. Did I make a mistake in choosing a play-based home family daycare rather than a more structured group daycare centre setting? Don't think so. Do Kyle and I spend too much time in front of the computer or TV ourselves, rather than engaging in activities with our children? YES. Did we not read to him and get him doing art projects, baking and experiments enough? YES. I have more, many more, but I won't go on...) The rational side of me says that we have strived to do the best we can with the time, energy and resources we have-- but we could have done better. We should have done better. But we can't change these past four years, we can only do better with today and tomorrow, so I am continuing to stop the useless self blame. Rylan's delays are not huge and they are not the end of the world. He may catch right up, or he may end up going to school 'on the short bus', and it will be okay. It may turn out to be a case of just him being HIM, doing his own thing on his own time and developmental scale. And I'm okay with him having a longer learning and growing journey than most kids, as long as he's happy and he's healthy-- that is the bottom line.
So it comes back to the same thing it has been since that early ultrasound-- this being MY journey of accepting my son for who he is. There are flashes of "normalcy" here and there that fuel optimism that he might one day be 'a regular boy'. For example, on Saturday he actually CHOSE to wear underwear instead of pull-ups and went almost the full day without an accident. This was huge for him because he never cared about wearing 'big boy' underwear before. That day he also chose to eat a whole hotdog IN THE BUN- not something Rylan would normally ever do. But then later when were at my mom's he killed the excitement when he pooed in his underwear and didn't say a word about it. He's now the ONLY four year-old I know that is not toilet trained. And he couldn't care less about that. As soon as preschool is done next week, there will be NO MORE pull-ups during the day. Just going to have to force it and deal with the accidents until he gets it... My pride aside, it is time for this kid to be toilet trained. "On his own time" is just not working for this toileting issue...
Anyway, I'm much more at peace with the fact that I need to continue on this path of doing everything I can to help him reach his full potential. Yesterday I actually read an article by a local parent in a local magazine that really struck home with me... Her son was kicked out of a daycare for having too many challenging behaviours. Thankfully this has never happened to us-- clearly not all of Rylan's caregivers and teachers over the past 4 years have been thrilled with him, but most have given him the time and attention he deserves. (And the daycare provider we've had since he was 15 months old has been nothing short of amazing, loving him fully for who he is and always highlighting his strengths. That is why I still continue to send him there on Fridays-- even though I can no longer afford it!) Anyway, I could write myself what this mom wrote about her son:
"More and more, I am recognizing that however my son develops, it is not my job to compare him to other children. It is my job to love him unconditionally, and support him the best that I can, helping him to develp a strong sense of self-worth, no matter his strengths and weaknesses. This doesn't mean that I should be blind to his shortcomings, but rather help him to develop strategies and the strength to deal with these challenges. It can be incredibly difficult to find the right approach to parent children who don't fit into the mold, but it can also be a wonderful opportunity to learn and grow ourselves, and to experience the pleasure of being part of hleping our children to become the best possible versions of themselves. My son is not normal-- but he is perfect. I am excited to see him grow. There will be challenges, tears, and mistakes and hurt along the way, but ultimately we are all just doing the best we can, and I am excited to be along for the ride!" (From "What's Up Magazine", June 2011)
I'm really thankful to have the additional professional support of the Early Intervention Program. Rylan has an appointment with a Speech Language Pathologist for a speech assessment next week. Then the following week we will meet with a Supported Child Development Consultant whom will work with us to help Rylan get the most out of preschool for the coming year. My hope is that he will make some huge leaps and will be able to start Kindergarten on time with his peers in September 2012. A momma can hope and dream :)))
I feel MUCH better now that we've got a handle on Rylan's (relatively minor) health issue. Once I calmed down, I went back to our family physician the next week with a list of questions, and got a copy of Rylan's lab report and had the doctor go through it with me and explain each of the numbers. Rylan definitely has "hypochromic microcytic anemia consistent with iron deficiency", but he's not nearly as severe as I had thought based on glancing at the lab printout the first time. The number value "5" I had seen initially refers to his ferritin level, not his hemoglobin. The values that Canadian labs use are different than the ones that the American labs (and therefore all the websites) use. So Rylan's hemoglobin is definitely on the low end, and is out of the normal range, but *just* out. So he's not severely anemic, just moderately. The doctor said that his case is probably is not chronic, and should be amended fairly quickly with the iron supplements. Although I don't love our doctor and wish she was more proactive with getting on things earlier and without the need for us to nudge her along, she was pretty good during and reassuring during this last appointment. She agreed to my request to test him next month (rather than in the fall as was initially on the order), to ensure that the iron deficiency treatment is working and that his iron stores are going up. She also agreed to test his TSH (for hypothyroidism, which I have) and his B12 levels next time we do bloodwork. I feel a lot more confident that we can work though this and get at least his physical health up to par and THEN we will tackle his developmental delays. It's really encouraging that he's started eating a bit more lately and is now up to a whopping 32.5 pounds (naked morning post-poop weight).
Unfortunately the poor kid broke out in a nasty rash exactly one week after starting the Fer-In-Sol. The eczema-like rash covered his hands, feet, legs, knees and elbows and was SUPER itchy for him. We ended up skipping preschool and rushing off to the doctor the morning of the initial breakout, convinced he had some other nasty illness, but nope, it was his first allergic reaction. The doctor didn't think it was the iron supplement because most people don't react to it, but there have been No other changes in his environment that we can pinpoint. The rash continued to get worse, so against the doctor's input, we stopped giving him the supplement two days later. And wouldn't you know it, the rash stopped developing and is starting to clear. A pharmacist we talked to said an allergy to iron is extremely rare, and thought it was probably a dye or something in the mixture of the supplement, but she didn't have any other alternatives. Another pharmacist yesterday suggested we try Palafer, which is ferrous fumerate (instead of ferrous sulfate in the other one). This new supplement is also suspended in a mixture of other artificial ingredients, so we'll see what happens... In the meantime, Rylan's been offered a lot more red meat and other sources high in iron, with *some* success. Ariana LOVES meat, so I don't think we'll be seeing this same issue with her... (Though I'm sure she'll have her own quirks-- already she's not into breads or cereals and won't eat one bite of any veggie!)
So although the worry for Rylan's health has lightened, that leaves me to once again wonder about how come he's so far behind his peers in language, cognition, etc. I am the kind of person that wants answers-- I want to know WHY! If we can't entirely blame severe anemia, who/what do we blame?? Why is my son constantly mistaken for a two or three year-old?? ((This just happened today in Costco when an elderly woman commented on my children being about a year apart. When I said that he is four, she seemed shocked! She then commented on how small he is, but I'm sure his goofy babytalk contributed to the perception of him being TWO as well.)) I go back to the self-defeating questions of wondering what we could have done wrong as parents.... (You know, the real helpful questions like: Did I drink too much aspartame during pregnancy? Probably. Did we allow him to watch too much TV from a young age? YES. Did I make a mistake in going back to work at one year? Not sure. Did I make a mistake in choosing a play-based home family daycare rather than a more structured group daycare centre setting? Don't think so. Do Kyle and I spend too much time in front of the computer or TV ourselves, rather than engaging in activities with our children? YES. Did we not read to him and get him doing art projects, baking and experiments enough? YES. I have more, many more, but I won't go on...) The rational side of me says that we have strived to do the best we can with the time, energy and resources we have-- but we could have done better. We should have done better. But we can't change these past four years, we can only do better with today and tomorrow, so I am continuing to stop the useless self blame. Rylan's delays are not huge and they are not the end of the world. He may catch right up, or he may end up going to school 'on the short bus', and it will be okay. It may turn out to be a case of just him being HIM, doing his own thing on his own time and developmental scale. And I'm okay with him having a longer learning and growing journey than most kids, as long as he's happy and he's healthy-- that is the bottom line.
So it comes back to the same thing it has been since that early ultrasound-- this being MY journey of accepting my son for who he is. There are flashes of "normalcy" here and there that fuel optimism that he might one day be 'a regular boy'. For example, on Saturday he actually CHOSE to wear underwear instead of pull-ups and went almost the full day without an accident. This was huge for him because he never cared about wearing 'big boy' underwear before. That day he also chose to eat a whole hotdog IN THE BUN- not something Rylan would normally ever do. But then later when were at my mom's he killed the excitement when he pooed in his underwear and didn't say a word about it. He's now the ONLY four year-old I know that is not toilet trained. And he couldn't care less about that. As soon as preschool is done next week, there will be NO MORE pull-ups during the day. Just going to have to force it and deal with the accidents until he gets it... My pride aside, it is time for this kid to be toilet trained. "On his own time" is just not working for this toileting issue...
Anyway, I'm much more at peace with the fact that I need to continue on this path of doing everything I can to help him reach his full potential. Yesterday I actually read an article by a local parent in a local magazine that really struck home with me... Her son was kicked out of a daycare for having too many challenging behaviours. Thankfully this has never happened to us-- clearly not all of Rylan's caregivers and teachers over the past 4 years have been thrilled with him, but most have given him the time and attention he deserves. (And the daycare provider we've had since he was 15 months old has been nothing short of amazing, loving him fully for who he is and always highlighting his strengths. That is why I still continue to send him there on Fridays-- even though I can no longer afford it!) Anyway, I could write myself what this mom wrote about her son:
"More and more, I am recognizing that however my son develops, it is not my job to compare him to other children. It is my job to love him unconditionally, and support him the best that I can, helping him to develp a strong sense of self-worth, no matter his strengths and weaknesses. This doesn't mean that I should be blind to his shortcomings, but rather help him to develop strategies and the strength to deal with these challenges. It can be incredibly difficult to find the right approach to parent children who don't fit into the mold, but it can also be a wonderful opportunity to learn and grow ourselves, and to experience the pleasure of being part of hleping our children to become the best possible versions of themselves. My son is not normal-- but he is perfect. I am excited to see him grow. There will be challenges, tears, and mistakes and hurt along the way, but ultimately we are all just doing the best we can, and I am excited to be along for the ride!" (From "What's Up Magazine", June 2011)
I'm really thankful to have the additional professional support of the Early Intervention Program. Rylan has an appointment with a Speech Language Pathologist for a speech assessment next week. Then the following week we will meet with a Supported Child Development Consultant whom will work with us to help Rylan get the most out of preschool for the coming year. My hope is that he will make some huge leaps and will be able to start Kindergarten on time with his peers in September 2012. A momma can hope and dream :)))