Clare had her appointment with the geneticist today. His role in this whole process is similar to an overseer or coordinator of care. The geneticist follows suggested medical guidelines for children with Williams. He makes sure Clare is being taken care of according to those guidelines. Her other doctors are focused on a particular area, so the geneticist brings these separate areas together to assemble a complete picture of Clare and the manifestation of WS in her. His main words today - "Kudos to Mom & Dad."
This is our bragging post! We are doing a great job with Clare. Even though there are some very tough moments where I doubt my abilities, somewhere deep inside, I really do know that we're doing a great job with Clare. I don't mean to sound all righteous, but I do feel that Shawn and I have coped very well with Clare's multiple diagnoses and managing her care. It showed to the geneticist that we're on top of things, and he was impressed and encouraged with Clare's progress. We were able to answer every question he asked. We've taken care of getting Clare checked out by the necessary doctors, and, other than continuing on our present course of treatment (especially with her heart), there is nothing new we need to be doing for Clare right now.
And good news about Clare's tests results from her endocrine lab work a couple weeks ago - her thyroid levels are only very slightly out-of-range (the endocrinologist feels this is still her body working out the too-high dosage of 12+ weeks), so she's finally on the right dose. Her calcium levels were within range, so she is not hypercalcemia, which means I can continue breastfeeding exclusively and not supplement with any low-calcium formula. Yeah! It's so nice to hear good news for once!
Monday, August 29, 2005
Monday, August 22, 2005
Another Echo & Rescheduled Catheterization
Clare had her echo and cardiology appointment on Friday. Sorry for not updating sooner, but it was a busy weekend! Shawn came home from Seattle on Saturday, so the whole family was excited to have Daddy back.
I am starting to really hate echos. They always spell bad news. At least right now they do. Clare's heart is worse than it was pre-cath. The narrowing in her pulmonary arteries has worsened, and the narrowing in her aorta has worsened even more. To the point where the cardiologist does not feel it is safe to wait 6 weeks for another cath (her second cath was scheduled for October 7). It is very important to get the pressures down on the right side of her heart, so Clare needs some more dilating on her pulmonary side ASAP.
To some degree, this was to be expected. It is the nature of Williams Syndrome that this narrowing continues to happen. It just seems to be happening very fast in Clare. There is only so much the doctors can do during the cath because of the dye contrast used on her little body, and Clare has to wait about 8 weeks between caths because of the dye contrast coming out of her system. But she needs these caths faster than they can do them. It seems like Clare may have a cath every 8 weeks, if her heart continues at this rate. And, once again, open heart surgery looms in the near future.
Needless to say, Shawn and I are upset by this news. We knew she was having more caths in the future, and her second cath is only going to be 3 weeks sooner than anticipated, but it's the continual shock that is more upsetting. Her first cath was scheduled under these same circumstances. With this second cath, we were more relaxed because Clare showed improvement post-cath so she was essentially healthier, we knew the cath was coming, it was scheduled 3 months in advance, and we had plenty of time to make arrangements for our stay and Jamie's care during those 3 days in Boston. Now it's a big BOOM again - we're getting to another critical point with Clare's heart which makes the cath that much scarier, the cath is sooner than expected, we are scrambling to make all new arrangements, and everyone is a little on edge (okay, some days, we're A LOT on edge).
We know God is watching over Clare and our family. And He does send us peace. Just the fact that it's barely nighttime and the other three members of my family are already sleeping is peaceful!
I am starting to really hate echos. They always spell bad news. At least right now they do. Clare's heart is worse than it was pre-cath. The narrowing in her pulmonary arteries has worsened, and the narrowing in her aorta has worsened even more. To the point where the cardiologist does not feel it is safe to wait 6 weeks for another cath (her second cath was scheduled for October 7). It is very important to get the pressures down on the right side of her heart, so Clare needs some more dilating on her pulmonary side ASAP.
To some degree, this was to be expected. It is the nature of Williams Syndrome that this narrowing continues to happen. It just seems to be happening very fast in Clare. There is only so much the doctors can do during the cath because of the dye contrast used on her little body, and Clare has to wait about 8 weeks between caths because of the dye contrast coming out of her system. But she needs these caths faster than they can do them. It seems like Clare may have a cath every 8 weeks, if her heart continues at this rate. And, once again, open heart surgery looms in the near future.
Needless to say, Shawn and I are upset by this news. We knew she was having more caths in the future, and her second cath is only going to be 3 weeks sooner than anticipated, but it's the continual shock that is more upsetting. Her first cath was scheduled under these same circumstances. With this second cath, we were more relaxed because Clare showed improvement post-cath so she was essentially healthier, we knew the cath was coming, it was scheduled 3 months in advance, and we had plenty of time to make arrangements for our stay and Jamie's care during those 3 days in Boston. Now it's a big BOOM again - we're getting to another critical point with Clare's heart which makes the cath that much scarier, the cath is sooner than expected, we are scrambling to make all new arrangements, and everyone is a little on edge (okay, some days, we're A LOT on edge).
We know God is watching over Clare and our family. And He does send us peace. Just the fact that it's barely nighttime and the other three members of my family are already sleeping is peaceful!
Thursday, August 18, 2005
A Hard Day
Today was a hard day. In retrospect at the (almost) end of the day, it was just an eye exam, doctor's appointment, and blood work. But add to it that the patient was 4 1/2 months old, her 2 1/2 year old brother was dragged along, and they were in the company of a very tired Mommy who hasn't seen her husband in 5 days, makes for a very long day!
Clare saw the pediatric opthamalogist for the first time today. It was a long exam for Clare. The good news is that Clare's eyes look great - no signs of strabismus (common with WS) or any other eye disease. Her vision is great! Clare will follow-up annually with her opthamalogist unless a problem is noted otherwise. The bad part of the exam was that she had her eyes dilated (hated the four sets of eye drops that were put in). Then the doctor had to insert a lid speculum onto each eye so Clare's eyes would remain open during the exam. Thankfully (and I am selfishly grateful for this!), I was holding Clare so I didn't actually see the speculum on her eyes and the room was dark for most of the exam. But I know Clare didn't like it. The poor baby cried nonstop during the exam.
Then we were off to the endocrinologist. Because there have been some bumps in the road with Clare's thyroid medication, we saw a new endocrinologist today. Not because we didn't like the old one, but because the new doctor has more available office hours at our clinic, so it was easier to get Clare in right away. So we went through the initial paperwork again, and I had to fill the new doctor in on Clare's history. I like the new doctor - he was great with Clare and very thorough. He said she looks great from an endocrine standpoint and just wanted to check her thyroid and calcium levels. If the tests come back normal, then we don't have to see him for another four months. He does want blood work done every 6 weeks to monitor her levels. Fortunately, the next blood work coincides with her catheterization, so she can have that done in the hospital. The blood work was the last straw for Clare today. She was already wiped out by the time we saw the endocrinologist and was not in any mood to be examined by another doctor. Then, to add injury to insult, she had blood drawn from both arms since the phlebotomist could not get enough blood out of her first arm to do all the tests (Clare apparently has rolling veins). There was a point in the blood draw, where I told phlebotomist that if she didn't get her blood soon, I was calling it a day. Clare was extremely worked up - the worst I've ever seen and I admit I was getting on edge over it. But it was over soon, the necessary blood was taken, and I was able to nurse Clare into a peaceful sleep. I have to say again that she is such a trooper. She goes through so much, yet she can still smile at me after all this was done while she nursed.
Jamie was also a trooper during this whole day. We had a couple almost-meltdown moments. It's a long day for an energetic little boy, confined in tiny exam rooms. He was particularly upset when Clare was having her blood drawn. I think Clare's crying upset him. I explained to him that she would cry and why it was happening, but it was a lot to take. Since it took two phlebotomists to draw the blood and I was keeping Clare confined, Jamie had to stand against a wall on the other side of the room, so he wouldn't be in the way. He did not like this arrangement and there was much verbal protest from the other side of the room, but he listened and stood where he was asked. This was a day when I was blessing the Jelly Belly people - and the inventor of stickers!
So it was a hard day. I admit that at the end of a day like today, I feel like crying. Some days, I indulge myself and do cry. Today I didn't. Probably because both kids are sleeping now, I talked to Shawn on the phone who commiserated with me, and I am getting ready to take a nap myself. When I look back, I think, "It wasn't so bad. It could have been worse." Ask me how I feel tomorrow after another long day at the doctor's for Clare's echo and cardiology appointment! Luckily, at the end of tomorrow, I will have the loving support of my parents and sisters to turn to and my dad's hot tub to sink into.
Clare saw the pediatric opthamalogist for the first time today. It was a long exam for Clare. The good news is that Clare's eyes look great - no signs of strabismus (common with WS) or any other eye disease. Her vision is great! Clare will follow-up annually with her opthamalogist unless a problem is noted otherwise. The bad part of the exam was that she had her eyes dilated (hated the four sets of eye drops that were put in). Then the doctor had to insert a lid speculum onto each eye so Clare's eyes would remain open during the exam. Thankfully (and I am selfishly grateful for this!), I was holding Clare so I didn't actually see the speculum on her eyes and the room was dark for most of the exam. But I know Clare didn't like it. The poor baby cried nonstop during the exam.
Then we were off to the endocrinologist. Because there have been some bumps in the road with Clare's thyroid medication, we saw a new endocrinologist today. Not because we didn't like the old one, but because the new doctor has more available office hours at our clinic, so it was easier to get Clare in right away. So we went through the initial paperwork again, and I had to fill the new doctor in on Clare's history. I like the new doctor - he was great with Clare and very thorough. He said she looks great from an endocrine standpoint and just wanted to check her thyroid and calcium levels. If the tests come back normal, then we don't have to see him for another four months. He does want blood work done every 6 weeks to monitor her levels. Fortunately, the next blood work coincides with her catheterization, so she can have that done in the hospital. The blood work was the last straw for Clare today. She was already wiped out by the time we saw the endocrinologist and was not in any mood to be examined by another doctor. Then, to add injury to insult, she had blood drawn from both arms since the phlebotomist could not get enough blood out of her first arm to do all the tests (Clare apparently has rolling veins). There was a point in the blood draw, where I told phlebotomist that if she didn't get her blood soon, I was calling it a day. Clare was extremely worked up - the worst I've ever seen and I admit I was getting on edge over it. But it was over soon, the necessary blood was taken, and I was able to nurse Clare into a peaceful sleep. I have to say again that she is such a trooper. She goes through so much, yet she can still smile at me after all this was done while she nursed.
Jamie was also a trooper during this whole day. We had a couple almost-meltdown moments. It's a long day for an energetic little boy, confined in tiny exam rooms. He was particularly upset when Clare was having her blood drawn. I think Clare's crying upset him. I explained to him that she would cry and why it was happening, but it was a lot to take. Since it took two phlebotomists to draw the blood and I was keeping Clare confined, Jamie had to stand against a wall on the other side of the room, so he wouldn't be in the way. He did not like this arrangement and there was much verbal protest from the other side of the room, but he listened and stood where he was asked. This was a day when I was blessing the Jelly Belly people - and the inventor of stickers!
So it was a hard day. I admit that at the end of a day like today, I feel like crying. Some days, I indulge myself and do cry. Today I didn't. Probably because both kids are sleeping now, I talked to Shawn on the phone who commiserated with me, and I am getting ready to take a nap myself. When I look back, I think, "It wasn't so bad. It could have been worse." Ask me how I feel tomorrow after another long day at the doctor's for Clare's echo and cardiology appointment! Luckily, at the end of tomorrow, I will have the loving support of my parents and sisters to turn to and my dad's hot tub to sink into.
Sunday, August 14, 2005
She Rolls Again
Clare continues to impress us! This afternoon she rolled from her back to her stomach. We thought it would be a couple more weeks before she was able to do this. She has been rolling onto her side and working on getting all the way over, but that last flip is very hard. Her therapist warned us that she may have a lot of trouble getting that last step because of her low muscle tone. But Clare proved us all wrong! Good girl! I think she was as surprised as the rest of us that she did it. She had a stunned look on her face like, "What did I just do?" Now that she knows she can roll, she has been trying all afternoon to do it again. I am constantly amazed how Clare does not give up. She doesn't know she's challenged and not supposed to be able to roll so soon! And that's just wonderful!
Saturday, August 13, 2005
She Rolls!
Clare made a big step today... or should we say, roll! She rolled! She rolled from her tummy to her back towards the left side. This is very exciting for two reasons:
1 - She rolled! (Can you tell we're excited??) Just the fact that Clare rolled on her own is a big milestone. We are unsure how delayed she is going to be, but right now, she is still on track. So, a big HOORAY for Clare!
2 - She rolled using her left arm. Her left side is weaker than her right, so it is great that she has enough strength in her left to force herself over.
We marveled over every milestone that Jamie accomplished as a baby and, before Clare was born, couldn't help but wonder if we would be as excited over our second child's milestones. We soon learned that you are! Even if Clare was not a special needs child, we would marvel at her strength and determination. She is such a hard worker already. You can see the strain on her face as she works on this. We are so proud of our baby girl! Keep on rolling!
1 - She rolled! (Can you tell we're excited??) Just the fact that Clare rolled on her own is a big milestone. We are unsure how delayed she is going to be, but right now, she is still on track. So, a big HOORAY for Clare!
2 - She rolled using her left arm. Her left side is weaker than her right, so it is great that she has enough strength in her left to force herself over.
We marveled over every milestone that Jamie accomplished as a baby and, before Clare was born, couldn't help but wonder if we would be as excited over our second child's milestones. We soon learned that you are! Even if Clare was not a special needs child, we would marvel at her strength and determination. She is such a hard worker already. You can see the strain on her face as she works on this. We are so proud of our baby girl! Keep on rolling!
Doctor's Appointments, Doctor's Appointments
This month Clare has a slew of doctor's appointments. Besides her weekly OT sessions, she has six doctor's appointments. It also happens to be the first month of Shawn's new job, so he was in New Jersey for 2.5 days one week and in Seattle for 6 days another week! Then add onto that Jamie came down with strep throat (high temp of 104.3 - eek!) and seven days after being on amoxycillin, he broke out in hives from head to toe. Turns out he is allergic to amoxycillin, just like his Daddy. The doctor switched his antibiotic, but he was "speckled" for days! So it's been a busy month.
The good thing about all these doctor's appointments is that we're basically getting a review of all Clare's systems. She saw the pediatrician and was updated on her vaccinations. Other than not laughing and squealing, he said she was fairly on-track developmentally for a 4-month old. Then we met her Ears, Nose, & Throat doctor for the first time. He examined her ears, nose, and throat (surprise surprise!) and said everything looked fine. Our main visit for this appointment was to have her tongue examined, since she is tongue-tied. We discussed the option of "releasing" it (a nice to way to say "clipping"). Her ENT doctor is all for releasing her tongue soon, especially since Clare may have speech difficulties due to the Williams. We don't need something else to hinder the process. However, we don't know if Clare will need an antibiotic before having any procedure, so she did not get her tongue released that day. We will follow up in a month after she's seen the cardiologist and release it then, if the cardiologist gives her approval. I want to have it done early because if we wait until Clare is older than she will have to be under general anesthesia to have it released. If we do it in the next couple months, the doctor can just use a local anesthestic. The ENT doctor also wants Clare to have hearing tests every six months, so we scheduled her first one for October. He explained that with some genetic conditions, the hearing can decline as the person gets older.
This coming week is Clare's first visit with the pediatric opthamologist, a new endocrinologist, and her follow-up echo and cardiology appointment. So I will continue this post after we see all those doctors.
Our last visit is at the end of the month with the geneticist. He has not seen Clare since she was diagnosed at 6 weeks old.
The good thing about all these doctor's appointments is that we're basically getting a review of all Clare's systems. She saw the pediatrician and was updated on her vaccinations. Other than not laughing and squealing, he said she was fairly on-track developmentally for a 4-month old. Then we met her Ears, Nose, & Throat doctor for the first time. He examined her ears, nose, and throat (surprise surprise!) and said everything looked fine. Our main visit for this appointment was to have her tongue examined, since she is tongue-tied. We discussed the option of "releasing" it (a nice to way to say "clipping"). Her ENT doctor is all for releasing her tongue soon, especially since Clare may have speech difficulties due to the Williams. We don't need something else to hinder the process. However, we don't know if Clare will need an antibiotic before having any procedure, so she did not get her tongue released that day. We will follow up in a month after she's seen the cardiologist and release it then, if the cardiologist gives her approval. I want to have it done early because if we wait until Clare is older than she will have to be under general anesthesia to have it released. If we do it in the next couple months, the doctor can just use a local anesthestic. The ENT doctor also wants Clare to have hearing tests every six months, so we scheduled her first one for October. He explained that with some genetic conditions, the hearing can decline as the person gets older.
This coming week is Clare's first visit with the pediatric opthamologist, a new endocrinologist, and her follow-up echo and cardiology appointment. So I will continue this post after we see all those doctors.
Our last visit is at the end of the month with the geneticist. He has not seen Clare since she was diagnosed at 6 weeks old.
In God's Graces
S-During Clare's first Cath I mentioned this prayer I read just that day. It was on a pewter cross that Mike & Michelle gave to her on her Baptism. We keep it in our kitchen right above our sink, so I think I was trying to finish up some last minute dishes as I read this and it struck me. This is what it said:
"On the day of Baptism the angels said a prayer that God would always bless you and keep you in his care."
Reading this made me realize that this is all part of God's plan, and there is nothing for us to do except accept it and live through it all the best we can. I have recently started a new job and I just came back from two days of training in New Jersey. The first night of training I was out to dinner with another of the new reps and we were getting to know one another. We got onto the topic of children and I discussed everything that Clare was going through...the guy didn't know what hit him. Anyway, he said to me that it was remarkable how I was handling everything. That made me feel a little uncomfortable, should I be a blubbering mess? Should I be in denial? Should I look at this with all doom and gloom. I told him that this was our life now and we just accept it. There are so many things in our life that we cannot control or change, getting yourself all worked up just leads to undue stress and Gray Hairs (trust me those are coming fast enough on their own). Trust in God, he loves us and he only wants what is best for us. Sometimes we can't understand why he thinks this is best for us, but then sometimes Jamie doesn't understand why he can't have ice cream for dinner. We just have to accept it. By the way, why can't we have ice cream for dinner?
"On the day of Baptism the angels said a prayer that God would always bless you and keep you in his care."
Reading this made me realize that this is all part of God's plan, and there is nothing for us to do except accept it and live through it all the best we can. I have recently started a new job and I just came back from two days of training in New Jersey. The first night of training I was out to dinner with another of the new reps and we were getting to know one another. We got onto the topic of children and I discussed everything that Clare was going through...the guy didn't know what hit him. Anyway, he said to me that it was remarkable how I was handling everything. That made me feel a little uncomfortable, should I be a blubbering mess? Should I be in denial? Should I look at this with all doom and gloom. I told him that this was our life now and we just accept it. There are so many things in our life that we cannot control or change, getting yourself all worked up just leads to undue stress and Gray Hairs (trust me those are coming fast enough on their own). Trust in God, he loves us and he only wants what is best for us. Sometimes we can't understand why he thinks this is best for us, but then sometimes Jamie doesn't understand why he can't have ice cream for dinner. We just have to accept it. By the way, why can't we have ice cream for dinner?
Saturday, August 06, 2005
Another Big Thank You
We want to thank everyone who continues to post comments to our blog. I cannot respond to individual comments on the blog, so I don't want people to think that we aren't reading them or don't care. We see every comment and are touched that so many people care about Clare and are reading about her journey.
So another big thank you!!
So another big thank you!!
Monday, August 01, 2005
Starting Occupational Therapy
Clare started her occupational therapy (OT) today. Jessica, her therapist, came over to the house for the first time. Clare's OT will concentrate on her fine motor skills right now - such as grasping objects with her hands, bringing them to her mouth, etc. Since OT and PT overlap, Jessica is also going to work on helping Clare learn to roll and gain better head control. Once Clare is a little older, she will most likely have an occupational therapist and a physical therapist, but for now, she will do only OT once a week.
We really liked Jessica. She was super-friendly and great with both Clare and Jamie. It's hard for Jamie to not be the center of attention (after all, he is so used to it - with all his adoring aunties, uncle, and grandparents!!), so he often tried to "help out" with the therapy session. Jessica was very patient with him, and we are incorporating Jamie into Clare's therapy so he is included. I was told by a good friend (who has a disabled daughter) that the siblings are sometimes the best therapists because they will push their sibling beyond what the parents will. Jamie doesn't care if Clare is turning away from a toy or starting to fuss - he continues to play with her and get her to play with him. But I am digressing....
Anyway, Jessica commented that Clare has made a lot of progress since her initial evaluation a month ago and was very pleased with what she saw. Clare is doing very well with continuing to develop her skill at grasping objects and bringing her hands together. She is right on track developmentally when it comes to rolling (can get almost all the way from front-to-back and back-to-front), but will most likely have a little trouble with the last step because of the weakness in her left side. She needs more tummy time but that gets a little tough because Clare does not like tummy time since it is very hard for her, and we aren't supposed to let her get too worked up because of her heart. But she needs the tummy time to strengthen her neck muscles and head control and the lifting up on her arms will help increase the strength in her left side. It's a bit of a Catch-22, but we've developed a plan to do a little tummy time many times throughout the day instead of doing a lot all at once. So that's one of our main concentrations right now.
In other news, Clare's second catheterization is scheduled for October 7. It is our understanding that the plan, at this time, is to re-dilate the four pulmonary arteries from the last cath plus dilate some of the smaller ones as well. Clare sees all her doctors this month plus meets a new doctor (her ENT doctor who will most likely clip her tongue-tied next week), so we are eager to hear how everyone thinks she's doing.
Clare continues to do great at home. She is getting back into her sleep pattern again, so Shawn does not have to drive her around every night anymore! It is hard to believe she is already four months old. In some ways, it feels like she has been with us forever, but in other ways, I am constantly reminded of how time flies when your children are growing before your eyes.
We really liked Jessica. She was super-friendly and great with both Clare and Jamie. It's hard for Jamie to not be the center of attention (after all, he is so used to it - with all his adoring aunties, uncle, and grandparents!!), so he often tried to "help out" with the therapy session. Jessica was very patient with him, and we are incorporating Jamie into Clare's therapy so he is included. I was told by a good friend (who has a disabled daughter) that the siblings are sometimes the best therapists because they will push their sibling beyond what the parents will. Jamie doesn't care if Clare is turning away from a toy or starting to fuss - he continues to play with her and get her to play with him. But I am digressing....
Anyway, Jessica commented that Clare has made a lot of progress since her initial evaluation a month ago and was very pleased with what she saw. Clare is doing very well with continuing to develop her skill at grasping objects and bringing her hands together. She is right on track developmentally when it comes to rolling (can get almost all the way from front-to-back and back-to-front), but will most likely have a little trouble with the last step because of the weakness in her left side. She needs more tummy time but that gets a little tough because Clare does not like tummy time since it is very hard for her, and we aren't supposed to let her get too worked up because of her heart. But she needs the tummy time to strengthen her neck muscles and head control and the lifting up on her arms will help increase the strength in her left side. It's a bit of a Catch-22, but we've developed a plan to do a little tummy time many times throughout the day instead of doing a lot all at once. So that's one of our main concentrations right now.
In other news, Clare's second catheterization is scheduled for October 7. It is our understanding that the plan, at this time, is to re-dilate the four pulmonary arteries from the last cath plus dilate some of the smaller ones as well. Clare sees all her doctors this month plus meets a new doctor (her ENT doctor who will most likely clip her tongue-tied next week), so we are eager to hear how everyone thinks she's doing.
Clare continues to do great at home. She is getting back into her sleep pattern again, so Shawn does not have to drive her around every night anymore! It is hard to believe she is already four months old. In some ways, it feels like she has been with us forever, but in other ways, I am constantly reminded of how time flies when your children are growing before your eyes.
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