I don't even know where to begin sometimes. There is so much in my head threatening to spill out and I try to marshal it, corral it, and rein it all in, but often it is too much.
The death of Blake has naturally hit our little community hard. The WS-mommy bloggers (as I refer to us) have been together for some time now. I think I was the first to start three years ago, but our numbers have exploded over the past couple years. There are so many of us now I cannot keep up with everyone (thus why I only have a select few linked on my blog). It's amazing to have this close group of friends, the majority of whom I have never even met in person. We have been there for each other through it all - the highs and lows, the triumphs and challenges. We have counseled, supported, and loved each other on the phone, via e-mail, through our blog posts and comments. We have been there through those tough days, nail-biting tests and evaluations, multiple echos, caths, procedures, and surgeries. But this is the first time we have experienced death in our community. That one of our precious children is gone. And, at least to me personally, it has sent me reeling.
My heart just aches for Whitney, Troy, Brandon, and their family. I cannot begin to fathom what they are going through. I pray I never have to find out. Yet I know this has been another dose of reality of how fragile many of our children are. Last night, as I said my final good-nights to Jamie and Clare, I leaned into Clare's bottom bunk. She was sitting there in her blue airplane hand-me-down boy pajamas, her crazy curls standing on end, and wearing dress-up earrings, a bracelet, and a ring (which she must have smuggled in her bed sometime during her afternoon nap). She looked so beautiful, so sweet, so tiny. I gave her a big squeeze and whispered, "Mommy loves you so much." She touched my face and whispered back, "I love you." That's what keeps me going.
Friday, February 29, 2008
Wednesday, February 27, 2008
In Memory
Baby Blake
July 6, 2007 - February 26, 2008
Your time in this world was not long, but what an impact you made on us all. You are loved. We are praying for you and your family.
Tuesday, February 26, 2008
Blurb
In our own little neck of the woods, Simon is back on his feet. His lungs, ears, and eyes were clear at the doctor's yesterday, and his oxygen levels were back up to 99. Jamie and Clare only got a touch of the sniffles, as did Shawn and I.
In my larger WS-community, however, life is not as good. It makes me feel helpless that, many times, all I can do is tell someone I am praying for them. I am such a do-er kind of person - making meals, watching kids, anything to make someone's life a little easier in the practical sense when faced with such hardships. I cannot take away people's worries or stress or fear, but I can make sure they don't have to be concerned about getting dinner on the table. However, being far away from the majority of our WS-blogging mommies, I wish I could do more. All I can say is that my prayers are serious. We have been saying the rosary as a family every night this Lent, and there have been many special intentions for our WS-friends out there. We continue to keep you in prayer.
Update - Ava is home now and slowly on the mend. Thank you to all my family and friends who keep our friends with Williams syndrome in their thoughts and prayers as well.
In my larger WS-community, however, life is not as good. It makes me feel helpless that, many times, all I can do is tell someone I am praying for them. I am such a do-er kind of person - making meals, watching kids, anything to make someone's life a little easier in the practical sense when faced with such hardships. I cannot take away people's worries or stress or fear, but I can make sure they don't have to be concerned about getting dinner on the table. However, being far away from the majority of our WS-blogging mommies, I wish I could do more. All I can say is that my prayers are serious. We have been saying the rosary as a family every night this Lent, and there have been many special intentions for our WS-friends out there. We continue to keep you in prayer.
Update - Ava is home now and slowly on the mend. Thank you to all my family and friends who keep our friends with Williams syndrome in their thoughts and prayers as well.
Thursday, February 21, 2008
Reality Check
As I mope and complain about how tough things have been around here lately with illnesses, I have to stop and think about those who would give anything to just be at home with their kids right now. As I write this, I am thinking about Baby Blake and Ava - two kiddos with Williams syndrome who are currently in the hospital and have been for some time. Ava is very sick, Blake is fighting for his life, and it hits me hard with a dose of reality. It reminds me that I need to take a step back and count my blessings, not my woes. To hug, love, and kiss my kids even when I am fatigued, and thank God that we are (relatively) healthy. That Simon is slowly getting better and did not end up in the hospital. That Clare has gone five months without needing a cath. That Jamie is running around, playing, and being his normal bundle of energy. I say a special prayer tonight for those two children and offer my challenges, frustrations, and worries of the day as a sacrifice to them.
Tuesday, February 19, 2008
When It Rains
... it not just pours, it's a monsoon.
After battling various illnesses over the past three weeks, Simon was diagnosed with RSV and bronchial asthma yesterday. After running around town to find a nebulizer last night and getting our baby breathing easier (his oxygen levels were low), I took him back to the pediatrician today for a re-check of his lungs. Now it is not RSV, but pneumonia. Plus another double ear infection and a double eye infection. With Simon and Clare combined, I am administering 20 doses of medication daily plus nebulizer treatments every four hours. And Shawn is away on business. Join my pity party please! And pray for Simon to kick this pneumonia and be back on the road to health.
After battling various illnesses over the past three weeks, Simon was diagnosed with RSV and bronchial asthma yesterday. After running around town to find a nebulizer last night and getting our baby breathing easier (his oxygen levels were low), I took him back to the pediatrician today for a re-check of his lungs. Now it is not RSV, but pneumonia. Plus another double ear infection and a double eye infection. With Simon and Clare combined, I am administering 20 doses of medication daily plus nebulizer treatments every four hours. And Shawn is away on business. Join my pity party please! And pray for Simon to kick this pneumonia and be back on the road to health.
Saturday, February 16, 2008
First Haircut
I need a haircut! I can't go around and let the girls see me like this. What is that thing sticking up in the back? I look like such a baby with this hair.
Hey, this is fun! Wow! A big boy haircut. At the same place and with the same woman that Daddy and Jamie go to. I am one of the guys now. Woo hoo!
Actually, you know what? I really am all done with it. This is no longer fun. No, I mean it, quit holding my face, pulling my hair, spraying water on my head. Just stop it. NOW!
The finished product - a handsome 9-month old with a big boy haircut. (Or as Daddy likes to call them - My First Mugshots.)
Thursday, February 14, 2008
Busy Week
It's been a busy week in our household. Clare has had some sort of thing going on every day, we've had some wicked weather, and poor Simon is still sick.
Between freezing rain, icy cold temperatures, snowfall, and flooded streets, we've been fairly housebound all week. Jamie had a snow day on Wednesday, so three days in a row without school has been tough. He is definitely at the age where he is not content to just be at home all day with me and the "little" kids anymore. Everyone goes stir crazy being cooped up in the house all day. With Simon being sick, plus everywhere you go is a sheet of ice these last few days, it has not been ideal conditions to even take a break by going to the bookstore, mall, Target, anywhere!
My sweet happy baby finally turned into a monster. I jinxed myself by bragging what a good boy he was even with all his ailments. By the weekend, he spiked a fever and was miserable (to put it mildly). He stopped taking naps and slept horribly at night. By Tuesday, he had also developed a deep, hacking cough and sounded wheezy when he breathed. So it was back to the doctor's office to add diagnoses of a double ear infection plus a worsening skin rash, which in turn means antibiotics and steroid cream. Slowly we are seeing our Simon come back to us from this red, speckled, unhappy baby we have had all week. (Spattergroit, anyone?)
Clare has had a busy week. Besides OT on Monday and PT on Tuesday, the feeding team came out on Wednesday, and she had her special education evaluation with the school department on Thursday. The feeding team spent an hour and a half at our house, and the only thing we got out of it was to try adding pureed cauliflower to Clare's macaroni and cheese. Shawn and I were not as impressed with the feeding team this time. We both feel Clare is at a point now where she physically has the oral motor skills to eat almost every kind of food. However, she is at the picky, opinionated 2-year old phase of life, and we see her exerting her control over what she eats and, more importantly, does not eat. Clare does have a lot of sensory issues going on when it comes to food, so her OT has been working weekly on that with Clare. I think Wednesday was our last visit with the feeding team. Although they scheduled a six-month follow-up for August, I just don't feel the need to have Clare seen by them anymore. I feel it is a waste of time for everyone involved. Clare will be discharged from Early Intervention in six weeks, but we have already arranged with her OT to continue feeding sessions once or twice a month. They have a good rapport and her OT is enthusiastic about coming up with new ways to get Clare to at least explore different foods, so I feel comfortable continuing with this route.
Since Clare was already evaluated by OT, PT, and speech last month, the school department only needed an evaluation done by a special educator. The educator did the same tests that Clare has done a million times, and Clare certainly acted like the kid that has been there, done that. For example, the educator asked Clare to stack blocks. Clare stacked two, gave a bored look, and questioned, "All done?" For each activity, Clare did the bare minimum, then stated "all done." She would then sit in the little chair with her chin rested on her folded hands on the table and just stare at the educator until a new activity was presented. I thought it was rather comical. I am not too concerned about what the educator writes up because Clare's January evaluations are very thorough. The next step is to meet with the school department's team, go over the results of the evaluations, and discuss Clare's placement in the preschool. Then one week after that meeting (which is in early March), we will sit down with the team again to write Clare's IEP. Six weeks and counting until the first day of school.
One day and counting until the weekend!
Between freezing rain, icy cold temperatures, snowfall, and flooded streets, we've been fairly housebound all week. Jamie had a snow day on Wednesday, so three days in a row without school has been tough. He is definitely at the age where he is not content to just be at home all day with me and the "little" kids anymore. Everyone goes stir crazy being cooped up in the house all day. With Simon being sick, plus everywhere you go is a sheet of ice these last few days, it has not been ideal conditions to even take a break by going to the bookstore, mall, Target, anywhere!
My sweet happy baby finally turned into a monster. I jinxed myself by bragging what a good boy he was even with all his ailments. By the weekend, he spiked a fever and was miserable (to put it mildly). He stopped taking naps and slept horribly at night. By Tuesday, he had also developed a deep, hacking cough and sounded wheezy when he breathed. So it was back to the doctor's office to add diagnoses of a double ear infection plus a worsening skin rash, which in turn means antibiotics and steroid cream. Slowly we are seeing our Simon come back to us from this red, speckled, unhappy baby we have had all week. (Spattergroit, anyone?)
Clare has had a busy week. Besides OT on Monday and PT on Tuesday, the feeding team came out on Wednesday, and she had her special education evaluation with the school department on Thursday. The feeding team spent an hour and a half at our house, and the only thing we got out of it was to try adding pureed cauliflower to Clare's macaroni and cheese. Shawn and I were not as impressed with the feeding team this time. We both feel Clare is at a point now where she physically has the oral motor skills to eat almost every kind of food. However, she is at the picky, opinionated 2-year old phase of life, and we see her exerting her control over what she eats and, more importantly, does not eat. Clare does have a lot of sensory issues going on when it comes to food, so her OT has been working weekly on that with Clare. I think Wednesday was our last visit with the feeding team. Although they scheduled a six-month follow-up for August, I just don't feel the need to have Clare seen by them anymore. I feel it is a waste of time for everyone involved. Clare will be discharged from Early Intervention in six weeks, but we have already arranged with her OT to continue feeding sessions once or twice a month. They have a good rapport and her OT is enthusiastic about coming up with new ways to get Clare to at least explore different foods, so I feel comfortable continuing with this route.
Since Clare was already evaluated by OT, PT, and speech last month, the school department only needed an evaluation done by a special educator. The educator did the same tests that Clare has done a million times, and Clare certainly acted like the kid that has been there, done that. For example, the educator asked Clare to stack blocks. Clare stacked two, gave a bored look, and questioned, "All done?" For each activity, Clare did the bare minimum, then stated "all done." She would then sit in the little chair with her chin rested on her folded hands on the table and just stare at the educator until a new activity was presented. I thought it was rather comical. I am not too concerned about what the educator writes up because Clare's January evaluations are very thorough. The next step is to meet with the school department's team, go over the results of the evaluations, and discuss Clare's placement in the preschool. Then one week after that meeting (which is in early March), we will sit down with the team again to write Clare's IEP. Six weeks and counting until the first day of school.
One day and counting until the weekend!
Tuesday, February 12, 2008
Valentine Fund
Valentine's Day is naturally a day that is connected with hearts. While we are thinking about hearts, we always think about the heart that needs our help and support the most - Clare's heart.
"The Williams Syndrome Assocation was formed in 1982 by, and for, families of individuals with Williams syndrome. The WSA is the only group in the U.S. devoted exclusively to improving the lives of individuals with Williams syndrome and their families. The WSA supports research into all facets of the syndrome, and the development of the most up to date educational materials regarding Williams syndrome." (from the WSA website) The WSA has helped our family personally by hosting events where we have had the opportuntiy to meet other individuals with Williams syndrome and their families. The WSA also bestows grants to researchers such as Dr. Carolyn Mervis, who we took Clare to see this past November.
With your help, our dream of a better future for individuals with Williams syndrome can become a reality. Please send your love to Clare this Valentine's Day in the form of a contribution to the Williams Syndrome Association Valentine Fund. You can view Clare's Page here. Happy Valentine's Day!
"The Williams Syndrome Assocation was formed in 1982 by, and for, families of individuals with Williams syndrome. The WSA is the only group in the U.S. devoted exclusively to improving the lives of individuals with Williams syndrome and their families. The WSA supports research into all facets of the syndrome, and the development of the most up to date educational materials regarding Williams syndrome." (from the WSA website) The WSA has helped our family personally by hosting events where we have had the opportuntiy to meet other individuals with Williams syndrome and their families. The WSA also bestows grants to researchers such as Dr. Carolyn Mervis, who we took Clare to see this past November.
With your help, our dream of a better future for individuals with Williams syndrome can become a reality. Please send your love to Clare this Valentine's Day in the form of a contribution to the Williams Syndrome Association Valentine Fund. You can view Clare's Page here. Happy Valentine's Day!
Thursday, February 07, 2008
The Picture of Health
Simon is an oddity in our house. He has never been to the pediatrician's office for anything other than his well-baby visits. Unbelievable! I get questioned about how much he weighs, and I proudly declare, "I don't know!" He rarely gets weighed! He takes no medication, has no diagnoses, and is the picture of health.
So when some little bumps appeared on Simon's skin recently, I chalked it up to a mild reaction to recently introducing dairy in his diet. We cut out the yogurt, but the bumps did not go away. Then I realized that it was eczema, something that Jamie battled in his infancy as well. It was not until the rash spread over his entire body that I thought something more might be going on. Simon is child #3 and we have seen many illnesses come through our house, so I figured that Simon had a little virus that ended in a rash, which is common. Then his eyes started to goop, and the rash on his cheeks became quite painful-looking. So I finally decided to call the pediatrician and have them take a look at Simon.
And don't you know it, it's not just a rash. In fact, Simon has Hand, Foot, and Mouth Disease (complete with blisters in his mouth and throat as well as the full-body rash), an eye infection, a skin infection around his eye from the resulting drainage from his eye, impetigo on his face, and fluid in his left ear (which is not an ear infection yet, so hopefully that will go away on its own). Each of those individually is really not a big deal and we have had each one in our house at some time. But not all at once. To the same kid. So now Simon is on a bunch of medications, including one to fight staph infection (not that he necessarily has one, but impetigo can be caused by staph, so the pediatrician wants to make sure it gets treated ASAP).
Through it all, Simon remains my sweet, happy baby. He is having trouble sleeping at night, but the doctor said his mouth blisters could be more painful at night and a dose of ibuprofen before bed would help him sleep better. In fact, he was grinning away the entire time the pediatrician was examining him. Hopefully in about a week, he will be the picture of health once more.
Monday, February 04, 2008
Potty Talk
Potty-training... going fabulously! I was super nervous about even training Clare because she is... (whisper) a special needs child. With Jamie, we did the whole "sit-on-the-potty-get-an-M&M" routine for a couple months when he was about 2 years old with small success. Then Clare was born, life got crazy, we moved, and potty-training took a backseat. Or as I like to call it, we took a more laidback "when-he's-ready-to-train-he-will" approach. And Jamie did. Woke up one morning shortly after his third birthday, wanted to buy Spiderman underwear (which we promptly did), and was trained in two days. It was almost too easy. So I've been having internal freak-outs about training Clare.
One thing I knew for sure was that I was not going to use Clare's handicaps, delays, special needs, whatever as an excuse. I borrowed a couple books from the library about "toilet training your child with special needs." And there was nothing in there that was "special." Nothing! Everything they talked about was stuff we did with Jamie, which made me laugh. It also made me realize, once again, to treat Clare normally. Obviously we were not going to start physically training Clare until she could actually walk herself to the bathroom. But I started talking about it with her everytime I changed her diaper. There has been lots of potty talk in our house lately! Then we brought out the little potty and just sat it next to the big one. One day, I asked her if she wanted to sit on the potty. She emphatically stated "no" and left the bathroom. I casually asked again a couple days later and received an even louder "no no no." I had one more trick up my sleeve before taking a break. Elmo and M&M's - Clare's two favorite things. I asked Clare if Elmo could go to the potty and get an M&M. She was all for that idea. So she solemnly watched as Elmo sat on the little potty, then proudly received an M&M. Clare wanted a turn. Fully clothed, mind you, but sitting on her little red and blue throne was enough for an M&M reward.
Flash forward a few weeks, and Clare has graduated to refusing the little potty. She insists on only sitting on the regular toilet (with her potty seat on top or else I think she would fall right in!) and almost always pees. She even asks now to go "pee on potty" and, if I ask her about it, she dances around singing "potty emmies potty emmies." (Her word for M&M's.) She eagerly wants to sit on the potty now. We are working towards the big deal of doing the #2, but I am so pleased with Clare's progress. She is still two months shy of turning three. Another teaching lesson for Mom - don't shortsight my kid. Don't make excuses for her. Let her be a normal kid - potty and all.
One thing I knew for sure was that I was not going to use Clare's handicaps, delays, special needs, whatever as an excuse. I borrowed a couple books from the library about "toilet training your child with special needs." And there was nothing in there that was "special." Nothing! Everything they talked about was stuff we did with Jamie, which made me laugh. It also made me realize, once again, to treat Clare normally. Obviously we were not going to start physically training Clare until she could actually walk herself to the bathroom. But I started talking about it with her everytime I changed her diaper. There has been lots of potty talk in our house lately! Then we brought out the little potty and just sat it next to the big one. One day, I asked her if she wanted to sit on the potty. She emphatically stated "no" and left the bathroom. I casually asked again a couple days later and received an even louder "no no no." I had one more trick up my sleeve before taking a break. Elmo and M&M's - Clare's two favorite things. I asked Clare if Elmo could go to the potty and get an M&M. She was all for that idea. So she solemnly watched as Elmo sat on the little potty, then proudly received an M&M. Clare wanted a turn. Fully clothed, mind you, but sitting on her little red and blue throne was enough for an M&M reward.
Flash forward a few weeks, and Clare has graduated to refusing the little potty. She insists on only sitting on the regular toilet (with her potty seat on top or else I think she would fall right in!) and almost always pees. She even asks now to go "pee on potty" and, if I ask her about it, she dances around singing "potty emmies potty emmies." (Her word for M&M's.) She eagerly wants to sit on the potty now. We are working towards the big deal of doing the #2, but I am so pleased with Clare's progress. She is still two months shy of turning three. Another teaching lesson for Mom - don't shortsight my kid. Don't make excuses for her. Let her be a normal kid - potty and all.
Wednesday, January 30, 2008
Happy Birthday, Jamie!
Dear Jamie,
Five years ago today I had no idea how my life would change. I knew that life would change - after all, I had recently quit my job, weighed 40 pounds more than normal, and could feel a little person doing somersaults in my belly. I just did not know in what form those changes would be. Motherhood has been beyond my wildest expectations. No one can prepare you for how incredibly hard and how incredibly amazing it all is.
I read all the parenting books, but no one told me how I would erupt in fits of giggles watching you dance or listening to your knock knock jokes. I watched friends play with their babies, but no one clued me in that I would
willingly brandish a sword and refer to myself as "Donatello" or "Splinter" as we marched around the house. No one warned me that I would love you so much that it would make my stomach feel funny and my chest tight and even fill my eyes with tears. Or that I would start welling up over the Johnson & Johnson baby commercials when, before having you in my life, the only movie that ever made me cry was Dances With Wolves.
As you grow, I know that each day is a gift for what it brings. I realize that, even though you are no longer my baby, I still love to watch you sleep at night (but not in the
scary way, like in the book Just In Case You Ever Wonder). I love to hold you on my lap and read books together. I love how the majority of my photos of you are very sweet and slightly goofy. I love to watch you carefully hunt in your I Spy books, pose your ninja turtles just so, and arrange your stuffed animals before bedtime - all with the careful precision and attention to detail that you have inherited from me. It has been a wonder and a privilege to be your mother over these past five years.
Five years ago today I had no idea how my life would change. I knew that life would change - after all, I had recently quit my job, weighed 40 pounds more than normal, and could feel a little person doing somersaults in my belly. I just did not know in what form those changes would be. Motherhood has been beyond my wildest expectations. No one can prepare you for how incredibly hard and how incredibly amazing it all is.
I read all the parenting books, but no one told me how I would erupt in fits of giggles watching you dance or listening to your knock knock jokes. I watched friends play with their babies, but no one clued me in that I would
willingly brandish a sword and refer to myself as "Donatello" or "Splinter" as we marched around the house. No one warned me that I would love you so much that it would make my stomach feel funny and my chest tight and even fill my eyes with tears. Or that I would start welling up over the Johnson & Johnson baby commercials when, before having you in my life, the only movie that ever made me cry was Dances With Wolves.As you grow, I know that each day is a gift for what it brings. I realize that, even though you are no longer my baby, I still love to watch you sleep at night (but not in the
scary way, like in the book Just In Case You Ever Wonder). I love to hold you on my lap and read books together. I love how the majority of my photos of you are very sweet and slightly goofy. I love to watch you carefully hunt in your I Spy books, pose your ninja turtles just so, and arrange your stuffed animals before bedtime - all with the careful precision and attention to detail that you have inherited from me. It has been a wonder and a privilege to be your mother over these past five years.We love you, Jamie! Happy Birthday!
Monday, January 28, 2008
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Saturday, January 26, 2008
Awareness
Around the breakfast table this morning, Jamie was questioning us about the day's activities (it is very important for him to know the itinerary of each day). He asked, "Do I have school? Do we have swim class? Does Clare have physical therapy?" As I answered "no" to each question, I explained that today was the weekend and a day to play at home all day long. Then Jamie asked, "Does Clare have Williams syndrome today?" I was floored and taken aback by the unexpected question.
We have briefly explained to Jamie in the past that Clare has something called Williams syndrome. One time, he overheard us discussing it and asked what that was. But I have no idea how much sinks in. Jamie is a very intelligent almost 5-year old, but you never know what they really pay attention to. So I explained to him that Clare will always have Williams syndrome. I told him that was the name for why Clare has her heart boo-boos, took a long time learning how to walk, has help from Jen and Kelly (her therapists) to teach her how to do things. Jamie grasped this simple explanation and added, "And why Clare doesn't like to eat anything!"
It was an eye-opener to hear Jamie ask about Williams syndrome. I know that he will know all about it someday. It will always be as much a part of his life as it with Clare's and our entire family's. I was just surprised it would happen so soon.
Wednesday, January 23, 2008
Endocrinology Fun
No, those two words really don't go together. But Clare did have her regular 3-month endocrinology appointment today. Usually the appointments are fairly routine - Has she missed any doses? Nope. Do you see any symptoms? Nope. Let's check her levels and see you back in three months. Great.
Today, however, was one of the best endocrinology appointments of all time. (Might be a stretch, but not really, if you've ever endured an endocrinology appointment.) First, Clare's blood pressure was 104/58. I don't think I have ever seen it that low! She sat so still while the nurse took her blood pressure. Then like the good little heart patient she is, she offered her second arm for another measurement (many times, Clare has to have her pressures checked in all four extremities). It was her lucky day that the nurse only needed one blood pressure measurement. A big relief that Clare's increase in her medication dose did the trick in bringing her blood pressure back down. With this news, when we see her cardiologist in March, I am fairly confident we will not be sent to have an MRI done of Clare's renal arteries.
Second big news was how much Clare has grown! She now measures 34.5 inches and weighs 23 pounds, 4 ounces. That's an increase of over 2 pounds and an inch. She has actually made it onto the growth chart for height (at the tenth percentile) and has more of a curve in weight (she will probably never be on the chart for weight, but a curve is better than a flatline).
Our third big news is that Clare's endo is trialing her off her thyroid medication. By age three, the crucial brain development stage when the thyroid is ultra-important has passed. The thyroid is still very important, but it's a safe time to see how Clare does without taking Synthroid, the synthetic thyroid hormone. In the long run, coming off her medication for six weeks won't harm her. Clare's dose has never increased since she was diagnosed with hypothyroidism at six weeks old. So her body is producing some of its own thyroid hormone, and her endo feels she is a good candidate to trial off the medication. He will test Clare's thyroid levels in six weeks and see how her body does on its own. I am excited to trial her off the medication (one less med would be great!), but I am also not holding my breath since Jamie was also trialed off at the age of three and his levels plummeted. He is now on Synthroid for life. Clare's endo is also going to check her calcium levels in six weeks. If they are in the solid normal range (as they have been for the last year), then he states the chances of Clare developing hypercalcemia are slim and she is in the clear. We will do a couple rounds of blood work on her thyroid levels and see the endocrinologist again at the end of April.
So now the fun.... enjoy our crazy, adorable, sweet, lovable children!
Today, however, was one of the best endocrinology appointments of all time. (Might be a stretch, but not really, if you've ever endured an endocrinology appointment.) First, Clare's blood pressure was 104/58. I don't think I have ever seen it that low! She sat so still while the nurse took her blood pressure. Then like the good little heart patient she is, she offered her second arm for another measurement (many times, Clare has to have her pressures checked in all four extremities). It was her lucky day that the nurse only needed one blood pressure measurement. A big relief that Clare's increase in her medication dose did the trick in bringing her blood pressure back down. With this news, when we see her cardiologist in March, I am fairly confident we will not be sent to have an MRI done of Clare's renal arteries.
Second big news was how much Clare has grown! She now measures 34.5 inches and weighs 23 pounds, 4 ounces. That's an increase of over 2 pounds and an inch. She has actually made it onto the growth chart for height (at the tenth percentile) and has more of a curve in weight (she will probably never be on the chart for weight, but a curve is better than a flatline).
Our third big news is that Clare's endo is trialing her off her thyroid medication. By age three, the crucial brain development stage when the thyroid is ultra-important has passed. The thyroid is still very important, but it's a safe time to see how Clare does without taking Synthroid, the synthetic thyroid hormone. In the long run, coming off her medication for six weeks won't harm her. Clare's dose has never increased since she was diagnosed with hypothyroidism at six weeks old. So her body is producing some of its own thyroid hormone, and her endo feels she is a good candidate to trial off the medication. He will test Clare's thyroid levels in six weeks and see how her body does on its own. I am excited to trial her off the medication (one less med would be great!), but I am also not holding my breath since Jamie was also trialed off at the age of three and his levels plummeted. He is now on Synthroid for life. Clare's endo is also going to check her calcium levels in six weeks. If they are in the solid normal range (as they have been for the last year), then he states the chances of Clare developing hypercalcemia are slim and she is in the clear. We will do a couple rounds of blood work on her thyroid levels and see the endocrinologist again at the end of April.
So now the fun.... enjoy our crazy, adorable, sweet, lovable children!
Tuesday, January 15, 2008
Evals Here, Eval There, Evals EVERYWHERE!
Clare had her six-month evaluation with Easter Seals today. Her OT, PT, and a speech therapist (along with a student shadowing our PT) came to our house and spent the afternoon with us. I had the joy of 1) observing Clare's evaluation while pretending to not observe so Clare would not be distracted while 2) making sure Jamie stayed out of everyone's way while at the same time making him feel involved and useful and not missing out on the fun while 3) entertaining, breastfeeding, rocking, swinging, bouncing Simon while 4) answering loads of questions about Clare's current activities while lastly 5) overseeing the furniture repairman who was repairing a gouge in our new bunk bed set. It was a challenging afternoon for all involved!
Clare continues to lag behind when it comes to gross motor skills. She is currently at a 12-14 month level, which is up from her pre-walking 10-month level at her June evaluation, but still very low. I know Clare’s hurdles are that she does not climb. She cannot run or jump, has trouble on uneven surfaces, does not do stairs, and cannot even manage stepping up and down on curbs. She even panics when faced with a low threshold that she has never encountered. She has the three floors of our house down pat, but wants to hold hands when at someone else’s house and needs to step from a carpet to wood floor (which has an almost nonexistent difference in height). We are working on the stairs and encouraging her to step up and down alone, but she prefers to be carried.
All evaluators noted Clare's difficulty with visual perception and focus. We will be exploring in the near future having her seen by the special developmental opthamologist and researching vision therapy. There are pages I could write about everything they noted in that area. Bottom line is that Clare is having trouble, and we are going to try to fix it!!
Clare’s speech and fine motor skills are more at a 24-month level. Her vocabulary has exploded, and she chats all the time (about 50% is understandable). The cats and baby dolls get lots of scoldings these days (apparently there is a lot of biting going on in the house because I hear many “no bites” and see frequent finger-shakings at animals and dolls – I do feel bad for them because the time-out spot of choice is in the play kitchen oven). Clare has started telling knock knock jokes. Okay, she has a repertoire of one, but I am pretty impressed with it, especially since she came up with it all by herself:
Clare: Knock knock
Who’s there?
Clare: Midnight
Midnight who?
Clare: Meow
The speech therapist noted that although Clare can manage almost all the consonant sounds, she has a lot of soft sounds (such as soft “b” and “p”). She foresees that Clare will definitely have speech therapy added to her schedule once she starts school.
On the positive side, Clare is at age-appropriate levels in her receptive language skills and self-help skills. We were very pleased to hear this (even though we knew she was doing well in those areas). Following Dr. Mervis’ advice in not coddling Clare, we are encouraging her to be more independent and do things for herself. She sleeps in a bottom bunk bed now, helps with dressing and undressing, brushes her teeth, washes in the bathtub, and has recently started potty-training (very recent, many M&M bribes, and Elmo is learning, too). Clare is slightly afraid of our small potty, so we are taking it slow. But it is gratifying to hear that our hard work is paying off in that Clare is where she should be in that area. These are the skills that Dr. Mervis said will make a difference in Clare’s adult life. We are even experimenting with no more coddling when it comes to food. Clare is served what the rest of the family eats and we go from there. I have seen her eat things I thought she would not be able to eat, and now we are wondering how much of Clare’s eating frustrations are due to her oral motor skills and how much are due to her wanting her own way.
The next step is for the school district to review Clare’s evaluation and set up their own. We were told they will most likely want at least an evaluation by an educator, since there was no educator present at today’s evaluation. Whether the school department wants OT, PT, and speech evals is up in the air. We should be notified about 6 weeks before Clare’s third birthday when her evaluation with the school’s team will be. Then there will be classroom placement, IEP writing, and more. We are at 10 weeks and counting until Clare starts preschool. A date that seemed so far in the future is now looming closer and closer.
Clare continues to lag behind when it comes to gross motor skills. She is currently at a 12-14 month level, which is up from her pre-walking 10-month level at her June evaluation, but still very low. I know Clare’s hurdles are that she does not climb. She cannot run or jump, has trouble on uneven surfaces, does not do stairs, and cannot even manage stepping up and down on curbs. She even panics when faced with a low threshold that she has never encountered. She has the three floors of our house down pat, but wants to hold hands when at someone else’s house and needs to step from a carpet to wood floor (which has an almost nonexistent difference in height). We are working on the stairs and encouraging her to step up and down alone, but she prefers to be carried.
All evaluators noted Clare's difficulty with visual perception and focus. We will be exploring in the near future having her seen by the special developmental opthamologist and researching vision therapy. There are pages I could write about everything they noted in that area. Bottom line is that Clare is having trouble, and we are going to try to fix it!!
Clare’s speech and fine motor skills are more at a 24-month level. Her vocabulary has exploded, and she chats all the time (about 50% is understandable). The cats and baby dolls get lots of scoldings these days (apparently there is a lot of biting going on in the house because I hear many “no bites” and see frequent finger-shakings at animals and dolls – I do feel bad for them because the time-out spot of choice is in the play kitchen oven). Clare has started telling knock knock jokes. Okay, she has a repertoire of one, but I am pretty impressed with it, especially since she came up with it all by herself:
Clare: Knock knock
Who’s there?
Clare: Midnight
Midnight who?
Clare: Meow
The speech therapist noted that although Clare can manage almost all the consonant sounds, she has a lot of soft sounds (such as soft “b” and “p”). She foresees that Clare will definitely have speech therapy added to her schedule once she starts school.
On the positive side, Clare is at age-appropriate levels in her receptive language skills and self-help skills. We were very pleased to hear this (even though we knew she was doing well in those areas). Following Dr. Mervis’ advice in not coddling Clare, we are encouraging her to be more independent and do things for herself. She sleeps in a bottom bunk bed now, helps with dressing and undressing, brushes her teeth, washes in the bathtub, and has recently started potty-training (very recent, many M&M bribes, and Elmo is learning, too). Clare is slightly afraid of our small potty, so we are taking it slow. But it is gratifying to hear that our hard work is paying off in that Clare is where she should be in that area. These are the skills that Dr. Mervis said will make a difference in Clare’s adult life. We are even experimenting with no more coddling when it comes to food. Clare is served what the rest of the family eats and we go from there. I have seen her eat things I thought she would not be able to eat, and now we are wondering how much of Clare’s eating frustrations are due to her oral motor skills and how much are due to her wanting her own way.
The next step is for the school district to review Clare’s evaluation and set up their own. We were told they will most likely want at least an evaluation by an educator, since there was no educator present at today’s evaluation. Whether the school department wants OT, PT, and speech evals is up in the air. We should be notified about 6 weeks before Clare’s third birthday when her evaluation with the school’s team will be. Then there will be classroom placement, IEP writing, and more. We are at 10 weeks and counting until Clare starts preschool. A date that seemed so far in the future is now looming closer and closer.
Monday, January 07, 2008
Old Man Winter
We have already been hit hard this winter with snow, snow, and more snow. (Snowiest December on record for over 100 years and still coming.) I love it. I don't mind the freezing cold mornings, bundling kids in layers upon layers, navigating our badly-plowed road (it may be a different story come March, though!!). Jamie loves the snow. He treks out every chance he can get. Unfortunately, it is not as often as he would like since neither Clare nor Simon want to be out in the snow. But we have gotten a few good days of snow play. I even got the chance to snow blow all by myself during one huge storm while Shawn was gone for a couple days! (I am not usually allowed to touch the toys... I mean tools.)
We are settling into our winter, post-Christmas life. Clare has (and had) a round of doctor's appointments and evaluations coming up - orthopedic, neurology, feeding team, Early Intervention evaluation, preschool evaluation, lung scan, and, of course, the ever-present cardiology and echo (but we're still a few weeks away from that one). More updates as we check the list off one by one!
Clare had her "annual" eye doctor appointment before Christmas. It it is supposed to be annual, but the trauma of experiencing her first appointment when she was just a few months old was enough for me to keep pushing it back and pushing it back. (Trauma for both mommy and Clare - as in inserting a speculum to keep Clare's eyes open.) Finally, after being questioned by almost every doctor and her therapists whether Clare had her eyes checked recently, I realized that I could not hide any longer. I am pleased to say that 1) no speculum required this time and 2) no problems with Clare's visual acuity, no drift, no strabismus, nothing requiring glasses. (Although many of Clare's WS-buddies wear glasses and are adorable, I have to think it is also a pain in the butt. I have enough pains in that area.) However, both Clare's OT and PT noted that Clare has problems with visual perception. We are discussing the option of having her evaluated by an opthamologist who specializes in this and looking into vision therapy. Also, since Clare does have some vestibular issues and trouble having her eyes follow and focus on objects without moving her head, we may try an astronaut spinning program with her as well. There is a whole bunch of technical mumbo jumbo to go along with this, but I am running on empty today, so I am not going into it all. Let's just say that the fun never ends around here!
While we may be adding doctors and specialists to our busy life, we are also trying to knock them off one-by-one. Clare was officially discharged from her neurologist last month. He does not see any neurological issues coming into play with Clare at this time. So now he has seen her, knows her, tracked her baseline, and if anything comes up in the future, we can take it from there. We had Clare's orthopedic appointment as well. It is also official that there will be no more AFO's (which is good since they have been sitting in the living room closet untouched for about four months now!). Clare does roll in on her ankles when walking; other than that, she is very steady on her own and does not need any special shoes, supports, or braces. Clare is doing great walking indoors. Outside is still very iffy. I have not really pushed her on the outside portion with winter. Ice, snow, slush, puddles - just not fun learning conditions! Come spring and summer, we're going to concentrate on Clare becoming more comfortable walking outside. The orthopedist did take a look at Clare's left foot because of her toes and stated she does indeed have a clawed toe. (Her toe right next to the big toe curls down and the big toe and third toe lap right over it.) Her first joint is very stiff there and her toe muscle seems weak. Right now, it is not impeding her walking and is not causing any pain or discomfort (or at least Clare does not complain about it). It will have to be surgically-fixed in the future if it becomes a problem, but for now, the doctor is going to keep an eye on it. Clare does not need to return to orthopedics for a year.
As much as I love the Christmas season, I do look forward to getting back into our routine. Back to preschool drop-offs and pick-ups, swim classes (of which Simon has joined the ranks), and all the appointments. Plus we're gearing up for the Ninja Turtle birthday party some nameless-almost five-year old is having in a few weeks!
We are settling into our winter, post-Christmas life. Clare has (and had) a round of doctor's appointments and evaluations coming up - orthopedic, neurology, feeding team, Early Intervention evaluation, preschool evaluation, lung scan, and, of course, the ever-present cardiology and echo (but we're still a few weeks away from that one). More updates as we check the list off one by one!
Clare had her "annual" eye doctor appointment before Christmas. It it is supposed to be annual, but the trauma of experiencing her first appointment when she was just a few months old was enough for me to keep pushing it back and pushing it back. (Trauma for both mommy and Clare - as in inserting a speculum to keep Clare's eyes open.) Finally, after being questioned by almost every doctor and her therapists whether Clare had her eyes checked recently, I realized that I could not hide any longer. I am pleased to say that 1) no speculum required this time and 2) no problems with Clare's visual acuity, no drift, no strabismus, nothing requiring glasses. (Although many of Clare's WS-buddies wear glasses and are adorable, I have to think it is also a pain in the butt. I have enough pains in that area.) However, both Clare's OT and PT noted that Clare has problems with visual perception. We are discussing the option of having her evaluated by an opthamologist who specializes in this and looking into vision therapy. Also, since Clare does have some vestibular issues and trouble having her eyes follow and focus on objects without moving her head, we may try an astronaut spinning program with her as well. There is a whole bunch of technical mumbo jumbo to go along with this, but I am running on empty today, so I am not going into it all. Let's just say that the fun never ends around here!
While we may be adding doctors and specialists to our busy life, we are also trying to knock them off one-by-one. Clare was officially discharged from her neurologist last month. He does not see any neurological issues coming into play with Clare at this time. So now he has seen her, knows her, tracked her baseline, and if anything comes up in the future, we can take it from there. We had Clare's orthopedic appointment as well. It is also official that there will be no more AFO's (which is good since they have been sitting in the living room closet untouched for about four months now!). Clare does roll in on her ankles when walking; other than that, she is very steady on her own and does not need any special shoes, supports, or braces. Clare is doing great walking indoors. Outside is still very iffy. I have not really pushed her on the outside portion with winter. Ice, snow, slush, puddles - just not fun learning conditions! Come spring and summer, we're going to concentrate on Clare becoming more comfortable walking outside. The orthopedist did take a look at Clare's left foot because of her toes and stated she does indeed have a clawed toe. (Her toe right next to the big toe curls down and the big toe and third toe lap right over it.) Her first joint is very stiff there and her toe muscle seems weak. Right now, it is not impeding her walking and is not causing any pain or discomfort (or at least Clare does not complain about it). It will have to be surgically-fixed in the future if it becomes a problem, but for now, the doctor is going to keep an eye on it. Clare does not need to return to orthopedics for a year.
As much as I love the Christmas season, I do look forward to getting back into our routine. Back to preschool drop-offs and pick-ups, swim classes (of which Simon has joined the ranks), and all the appointments. Plus we're gearing up for the Ninja Turtle birthday party some nameless-almost five-year old is having in a few weeks!
Monday, December 31, 2007
Friday, December 28, 2007
Christmas Season
The plethora of photos and videos are to make up for my lack of actual words written lately. But we are finally digging ourselves out from under the pile of Christmas presents, cookies, and decorations, so here we go!
Christmas seemed to come so fast this year. Shawn and I made a pact to sit back, relax, and enjoy the holiday season. I try to get the majority of my shopping done before Thanksgiving, so I do not have to face the mall, traffic, or the hordes of people in December. I am proud to say that goal was accomplished at least. But there are still always the zillion last-minute runs to Target and the grocery store. And, after bemoaning the fact that Walgreens was actually advertising it would be open on Christmas Day (my words: "Isn't Christmas sacred anymore? Who needs to be at Walgreens on Christmas Day. The tin foil can wait."), I had to eat my words with a run to Walgreens on, yes, Christmas Day for the batteries and baby food that Santa forgot to bring.
This year, I had to remind myself over and over to SIMPLIFY. That was my Christmas theme. And we did. We cut back on the amount of gift exchanges we were involved in. We went to one less Christmas party. We decided not to put out all the Christmas decorations this year, but just a select few. Shawn and I even instituted a 2-gift rule for each other. I admit that at times I was still overwhelmed by everything that needed to get done before Christmas (or I felt needed to get done) and had a couple of Christmas panics. But, on the whole, I feel like we did very well in keeping the chaos to a minimum, the consumerism at bay, and the true meaning of Christmas in abundance. Several nights, we packed the kids in the car after dinner and drove around admiring Christmas lights. I baked more cookies this year than I ever have. And not by buying the mix at the store that you add water and an egg to, which I did last year in a feeble attempt to make some cookies. Everything was from scratch - lemon squares, M&M cookies, special Christmas brownies, sugar cookies, you name it. We faithfully lit the candles of our Advent wreath every night, reading Bible passages and singing songs as we prepared ourselves for the birth of Jesus. Jamie and Clare did extra good deeds throughout Advent, and we wrote them down nightly on little slips of paper to put them in a special Jesus stocking we hung on the tree. They then bought baby Jesus a birthday present (this year he received a stuffed pony), which was carefully wrapped. Both the stocking and present were left under the tree on Christmas Eve. This was the first year Jamie started singing Christmas carols and learned "Jingle Bells," "Silent Night," "The Twelve Days of Christmas," and "We Wish You A Merry Christmas" by heart. Instead of her normal "hi," Clare greeted everyone with "ho ho ho." Simon was the only child who was all smiles sitting on Santa's lap. Now we are counting down the twelve days of Christmas until January 6, the Epiphany of the Lord, the Feast of the Three Kings, when the wisemen came to pay homage to Jesus. (Which also happens to be Shawn's birthday!) That will be when our Christmas season truly ends.
I want my children to remember the traditions we have in our family surrounding Christmas. They may not remember that this was the year that Santa brought Jamie the ninja turtle van or Clare her baby doll stroller or Simon his train, but I hope they remember the joy, fun, laughter, and wonder we had getting ready for Christmas. I know I will.
Christmas seemed to come so fast this year. Shawn and I made a pact to sit back, relax, and enjoy the holiday season. I try to get the majority of my shopping done before Thanksgiving, so I do not have to face the mall, traffic, or the hordes of people in December. I am proud to say that goal was accomplished at least. But there are still always the zillion last-minute runs to Target and the grocery store. And, after bemoaning the fact that Walgreens was actually advertising it would be open on Christmas Day (my words: "Isn't Christmas sacred anymore? Who needs to be at Walgreens on Christmas Day. The tin foil can wait."), I had to eat my words with a run to Walgreens on, yes, Christmas Day for the batteries and baby food that Santa forgot to bring.
This year, I had to remind myself over and over to SIMPLIFY. That was my Christmas theme. And we did. We cut back on the amount of gift exchanges we were involved in. We went to one less Christmas party. We decided not to put out all the Christmas decorations this year, but just a select few. Shawn and I even instituted a 2-gift rule for each other. I admit that at times I was still overwhelmed by everything that needed to get done before Christmas (or I felt needed to get done) and had a couple of Christmas panics. But, on the whole, I feel like we did very well in keeping the chaos to a minimum, the consumerism at bay, and the true meaning of Christmas in abundance. Several nights, we packed the kids in the car after dinner and drove around admiring Christmas lights. I baked more cookies this year than I ever have. And not by buying the mix at the store that you add water and an egg to, which I did last year in a feeble attempt to make some cookies. Everything was from scratch - lemon squares, M&M cookies, special Christmas brownies, sugar cookies, you name it. We faithfully lit the candles of our Advent wreath every night, reading Bible passages and singing songs as we prepared ourselves for the birth of Jesus. Jamie and Clare did extra good deeds throughout Advent, and we wrote them down nightly on little slips of paper to put them in a special Jesus stocking we hung on the tree. They then bought baby Jesus a birthday present (this year he received a stuffed pony), which was carefully wrapped. Both the stocking and present were left under the tree on Christmas Eve. This was the first year Jamie started singing Christmas carols and learned "Jingle Bells," "Silent Night," "The Twelve Days of Christmas," and "We Wish You A Merry Christmas" by heart. Instead of her normal "hi," Clare greeted everyone with "ho ho ho." Simon was the only child who was all smiles sitting on Santa's lap. Now we are counting down the twelve days of Christmas until January 6, the Epiphany of the Lord, the Feast of the Three Kings, when the wisemen came to pay homage to Jesus. (Which also happens to be Shawn's birthday!) That will be when our Christmas season truly ends.
I want my children to remember the traditions we have in our family surrounding Christmas. They may not remember that this was the year that Santa brought Jamie the ninja turtle van or Clare her baby doll stroller or Simon his train, but I hope they remember the joy, fun, laughter, and wonder we had getting ready for Christmas. I know I will.
Tuesday, December 25, 2007
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