Hi everyone--
Just a quick update for this early Saturday morning. Grace had her opthamologist appointment this week, and her eyes are perfect. The concern was that given the proximity of the lesion to her eyebrow that somehow the muscles of the eye had been affected. Another concern is that such massive doses of steroids can cause cataracts and glaucoma. Fortunately, none of this has turned out to be the case.
For now, our attention has turned to Grace's First Communion tomorrow. My sister and her family and my parents will be here in a couple of hours, and I am really looking forward to it.
We have an appointment with the rheumatologist on Monday. I'll post that afternoon with any updates we may have.
Thanks for your cotinued well wishes!
Love,
Sabrina
Saturday, June 7, 2008
Thursday, May 29, 2008
We're just keepin' on keepin' on!
Thanks to all who have called or emailed asking how things are going. They are going fairly well, and we have settled into somewhat of a routine. Grace is going to the hospital less often right now. I've really discovered that the treatment of this type of condition can be a little bit of a moving target. She does not go to the hospital this week or next week. Instead, I am giving her injections at home. She still has many of the same side effects, but it is easier to not have her miss school, or spend those hours at the hospital! The injections at home are only the methotrexate--not the steroid, which is the more difficult drug on her body. Her weight gain is at about 10 pounds right now, but by far the biggest effect we're noticing is her emotional rollercoaster. As Rob so accurately put it, "it's like we have a 14 year old". If this is what puberty's going to be like, BEWARE!!!!
Thank you to those who have brought the Wednesday gift baskets. Please know that even though we're not going to the hospital as often right now, that the items are still coming in very useful because the day of the injection--even if I give it at home--she still feels a little run down, and often likes to play a little more quietly.
We have an opthamologist appointment on Tuesday to make sure that the eye has not been affected. It takes 3 months to get into see the opthamologist at Children's Hospital, so that is why we are just now going to see him about this. They have told me to expect a 2 hour appointment!!! Our next follow-up with the rheumatologist is the following week, and we should have a much clearer indication of the future course of her treatments. For right now, her next IV infusion isn't until June 12.
Though I don't think they read here, I'd like to publicly thank Grace's teacher and the secretaries at the school for being so great in working with her and her changing needs. It has been a huge help.
Right now, we are focusing our energy on something positive: Grace will receive her First Holy Communion on June 8. I am really looking forward to seeing all the family that will be coming for the event. I will be sure to post pictures!
I will also post an update after our upcoming doctors' appointments.
Thanks to everyone for your thoughts and prayers.
Thank you to those who have brought the Wednesday gift baskets. Please know that even though we're not going to the hospital as often right now, that the items are still coming in very useful because the day of the injection--even if I give it at home--she still feels a little run down, and often likes to play a little more quietly.
We have an opthamologist appointment on Tuesday to make sure that the eye has not been affected. It takes 3 months to get into see the opthamologist at Children's Hospital, so that is why we are just now going to see him about this. They have told me to expect a 2 hour appointment!!! Our next follow-up with the rheumatologist is the following week, and we should have a much clearer indication of the future course of her treatments. For right now, her next IV infusion isn't until June 12.
Though I don't think they read here, I'd like to publicly thank Grace's teacher and the secretaries at the school for being so great in working with her and her changing needs. It has been a huge help.
Right now, we are focusing our energy on something positive: Grace will receive her First Holy Communion on June 8. I am really looking forward to seeing all the family that will be coming for the event. I will be sure to post pictures!
I will also post an update after our upcoming doctors' appointments.
Thanks to everyone for your thoughts and prayers.
Saturday, May 10, 2008
One more update and a couple more pictures
I would like to take a minute to acknowledge all of Grace's aunt's and uncles, Jon and Eileen, Brian and Molly, Tad and Ali, and Jeff and Adrianna for going in together and purchasing her a new MP3 player to take to the hospital with her. Due to some shipment problems, it just arrived this week, and we just gave it to her this morning. Following are a couple of pictures of her opening it. Thank you so much for thinking of her. We appreciate it more than you will ever know. She is lucky to have a family like all of you.
Some updated pictures
Good Saturday morning to all of you!
A relatively quiet, uneventful week here in our home--at least as far as Grace's condition goes. The rest of our life was it's standard, chaotic state. Grace did not have an infusion this week, which was nice. I gave her an injection of methotrexate here at home, which was traumatic for her, but we got it done. This Thursday will be her next infusion at Children's.
I also found a First Communion dress for her! (Actually, my mom did. She is THE BEST at hunting clearance racks and finding bargains.) I have bought/borrowed two dresses for Grace, but because of the weight gain caused by the steroids, neither of them fits anymore. Understandably, I didn't want to spend alot on yet another dress, but my mom found one that will work perfectly!
I thought you might enjoy seeing a couple of updated pictures. The first one shows the lesion--you can see that it is less inflamed and that the color has faded to a more greenish/yellowish color. The surface of it is also much more smooth and less "stretched" looking for lack of a better description. The second one shows that Grace has gained a bit of weight--you can see it in the fullness of the face. However, she still has a great smile--when she chooses to show it!
The dermatologist we met with last week did say that the hair loss is likely permanent, which is too bad, but not unexpected. The above picture does not really show the area, as Grace is pretty self concsious about it. She also mentioned that plastic surgery would be an option to consider when she is a little older. Obviously, that is not something we will consider while she is still growing.
I'd like to take a moment to wish my mom a very happy Mother's Day--I hope it is a fabulous one. And to all the other mothers reading this post, I hope your day is a great one as well!
Thank you for your continued thoughts and prayers.
Sabrina
A relatively quiet, uneventful week here in our home--at least as far as Grace's condition goes. The rest of our life was it's standard, chaotic state. Grace did not have an infusion this week, which was nice. I gave her an injection of methotrexate here at home, which was traumatic for her, but we got it done. This Thursday will be her next infusion at Children's.
I also found a First Communion dress for her! (Actually, my mom did. She is THE BEST at hunting clearance racks and finding bargains.) I have bought/borrowed two dresses for Grace, but because of the weight gain caused by the steroids, neither of them fits anymore. Understandably, I didn't want to spend alot on yet another dress, but my mom found one that will work perfectly!
I thought you might enjoy seeing a couple of updated pictures. The first one shows the lesion--you can see that it is less inflamed and that the color has faded to a more greenish/yellowish color. The surface of it is also much more smooth and less "stretched" looking for lack of a better description. The second one shows that Grace has gained a bit of weight--you can see it in the fullness of the face. However, she still has a great smile--when she chooses to show it!
The dermatologist we met with last week did say that the hair loss is likely permanent, which is too bad, but not unexpected. The above picture does not really show the area, as Grace is pretty self concsious about it. She also mentioned that plastic surgery would be an option to consider when she is a little older. Obviously, that is not something we will consider while she is still growing.I'd like to take a moment to wish my mom a very happy Mother's Day--I hope it is a fabulous one. And to all the other mothers reading this post, I hope your day is a great one as well!
Thank you for your continued thoughts and prayers.
Sabrina
Friday, May 2, 2008
End of a long week . . .
Hi everyone--
Sorry for not updating before now. It has been a long week. I am having dinner with my friend Anne tonight, and I must say that I am looking forward to a quiet dinner and a strong drink!
Grace had her infusion on Wednesday this week. It was another tough one. For some reason, she was shaking so badly that the nurse "blew the vein" when trying to start the IV. This isn't as scary as it sounds, though Grace is sporting a nice bruise on her left hand. It simply meant that we had to try again on the other hand. Because of Grace's anxiety, they had a nurse who specializes in "hard pokes" come down to start the IV. I had hoped that once the line was in and the meds were hung that Grace would relax, but unfortunately that was not the case. Once again this time she was very nervous and very nauseated--two conditions which seem to make the other one worse. She spent much of the infusion with her head over a basin, though thankfully only vomited once. They sent a specialist from Child Life Services (or something like that) to come up and talk with Grace and help her calm down. She practiced deep breathing with Grace, and also gave her a cotton ball saturated with peppermint oil. Peppermint is supposed to help nausea, and inhaling it is usually helpful to many of these patients. Unfortunately, Grace wanted nothing to do with these ideas, and though she did participate, I could tell her heart wasn't really in it. In the end, we ended up giving another dose of Zofran, which once again worked wonders. I must say however--though this probably makes me sound like a bad mommy--that Grace had it in her head that only the Zofran would work, and wasn't really OPEN to trying anything else. We don't want to get into a situation where she is becoming dependent on the Zofran, hence the reason we tried other things first. Oh well, we'll try again next time.
Then on Thursday, Grace had an appointment with the pediatric dermatologist. By this point in her treatment, Grace has seen quite a few different doctors, and she had clearly had enough by yesterday's appointment. Let's just say that her attitude, demeanor and behavior were a little "challenging" to say the least. We'll just leave it at that, shall we?
Today, Grace leaves for two days on a Brownie camping trip. She is nervous about being homesick, but I think we can both use the break. I've got all her medicines sent along, and one of the leaders is a good friend of mine (hi Heather!), so I feel very confident that she will do just fine.
Grace is up to about 89 pounds now--which is a gain of just under 10 lbs. Medically speaking, she's doing great. Emotionally, this has been a hard week. I'm not sure if it's withdrawal effects from the methylpredinisolone (we didn't do an infusion last week), or just all of this starting to take it's toll, but this week has been the most challenging in terms of behavior--emotional outbursts, obstinance, temper, etc. As I said, both Mama and Daughter need a break this weekend!
That's about all. For those of you who don't see Grace on a regular basis, I will post a picture soon so you can see the improvement in the lesion!
(By the way, the appointment with the dermatologist was rather anti-climatic, as I expected it to be. She prescribed an ointment for the lesion that will further help with the inflammation, but other than that said she concurs completely with the rheumatologists course of treatment. She will continue to be another set of eyes to monitor Grace, but her main treatment will continue to be monitored by the rheumatologist at Children's Hospital.)
Until next time,
Sabrina
Sorry for not updating before now. It has been a long week. I am having dinner with my friend Anne tonight, and I must say that I am looking forward to a quiet dinner and a strong drink!
Grace had her infusion on Wednesday this week. It was another tough one. For some reason, she was shaking so badly that the nurse "blew the vein" when trying to start the IV. This isn't as scary as it sounds, though Grace is sporting a nice bruise on her left hand. It simply meant that we had to try again on the other hand. Because of Grace's anxiety, they had a nurse who specializes in "hard pokes" come down to start the IV. I had hoped that once the line was in and the meds were hung that Grace would relax, but unfortunately that was not the case. Once again this time she was very nervous and very nauseated--two conditions which seem to make the other one worse. She spent much of the infusion with her head over a basin, though thankfully only vomited once. They sent a specialist from Child Life Services (or something like that) to come up and talk with Grace and help her calm down. She practiced deep breathing with Grace, and also gave her a cotton ball saturated with peppermint oil. Peppermint is supposed to help nausea, and inhaling it is usually helpful to many of these patients. Unfortunately, Grace wanted nothing to do with these ideas, and though she did participate, I could tell her heart wasn't really in it. In the end, we ended up giving another dose of Zofran, which once again worked wonders. I must say however--though this probably makes me sound like a bad mommy--that Grace had it in her head that only the Zofran would work, and wasn't really OPEN to trying anything else. We don't want to get into a situation where she is becoming dependent on the Zofran, hence the reason we tried other things first. Oh well, we'll try again next time.
Then on Thursday, Grace had an appointment with the pediatric dermatologist. By this point in her treatment, Grace has seen quite a few different doctors, and she had clearly had enough by yesterday's appointment. Let's just say that her attitude, demeanor and behavior were a little "challenging" to say the least. We'll just leave it at that, shall we?
Today, Grace leaves for two days on a Brownie camping trip. She is nervous about being homesick, but I think we can both use the break. I've got all her medicines sent along, and one of the leaders is a good friend of mine (hi Heather!), so I feel very confident that she will do just fine.
Grace is up to about 89 pounds now--which is a gain of just under 10 lbs. Medically speaking, she's doing great. Emotionally, this has been a hard week. I'm not sure if it's withdrawal effects from the methylpredinisolone (we didn't do an infusion last week), or just all of this starting to take it's toll, but this week has been the most challenging in terms of behavior--emotional outbursts, obstinance, temper, etc. As I said, both Mama and Daughter need a break this weekend!
That's about all. For those of you who don't see Grace on a regular basis, I will post a picture soon so you can see the improvement in the lesion!
(By the way, the appointment with the dermatologist was rather anti-climatic, as I expected it to be. She prescribed an ointment for the lesion that will further help with the inflammation, but other than that said she concurs completely with the rheumatologists course of treatment. She will continue to be another set of eyes to monitor Grace, but her main treatment will continue to be monitored by the rheumatologist at Children's Hospital.)
Until next time,
Sabrina
Thursday, April 24, 2008
This week's update
Grace got to take the day off today from going to Children's Hospital. The timing was perfect, because her class had a field trip to the Woodland Park Zoo today, and she would not have been able to go if we'd gone for the infusion.
Tonight I administered the first methotrexate injection at home. (We've had MTX in the infusion center, but this is the first one I did at home.) Grace was a little bit scared, but I did great (if I do say so myself!) and the whole thing was over in less than a minute. The first one is behind us, and it is always the hardest.
Next week we go back to the infusion unit at Children's. However, we will be going on Wednesday intstead of Thursday so that Grace can go with her Brownie troop to the Encampment weekend. After that, we'll see what our schedule is.
Grace has an appointment with a top pediatric dermatologist in Bellevue next week. (She is impossible to get into, and is only doing this as a favor to the first dermatologist we saw in February. ) I'm not sure what--if anything--will come out of this appointment. She might give us some ideas of what we can do to minimize the appearance of the lesion. I will also talk to her about the area of hair loss, and if there is anything that can be done about that. I've read that the hair loss is permanent, but who knows?
Grace is doing well. As of this week, she has gained about 6 pounds, but it really doesn't show all that much, and she is thrilled about the new clothes she has gotten out of this! I am in search of a new First Communion dress for her, however, since the one I bought her no longer fits. Good thing I've got until June 8 to find one!
That's about all for tonight's update. Thank you so much for reading.
Tonight I administered the first methotrexate injection at home. (We've had MTX in the infusion center, but this is the first one I did at home.) Grace was a little bit scared, but I did great (if I do say so myself!) and the whole thing was over in less than a minute. The first one is behind us, and it is always the hardest.
Next week we go back to the infusion unit at Children's. However, we will be going on Wednesday intstead of Thursday so that Grace can go with her Brownie troop to the Encampment weekend. After that, we'll see what our schedule is.
Grace has an appointment with a top pediatric dermatologist in Bellevue next week. (She is impossible to get into, and is only doing this as a favor to the first dermatologist we saw in February. ) I'm not sure what--if anything--will come out of this appointment. She might give us some ideas of what we can do to minimize the appearance of the lesion. I will also talk to her about the area of hair loss, and if there is anything that can be done about that. I've read that the hair loss is permanent, but who knows?
Grace is doing well. As of this week, she has gained about 6 pounds, but it really doesn't show all that much, and she is thrilled about the new clothes she has gotten out of this! I am in search of a new First Communion dress for her, however, since the one I bought her no longer fits. Good thing I've got until June 8 to find one!
That's about all for tonight's update. Thank you so much for reading.
Friday, April 18, 2008
Another one down!!
Hi everyone,
Sorry this post is a day late. Thank you to those of you who called wanting to make sure that everything was OK.
Yesterday went much better than last week. Unfortunately, Grace did vomit on her way to the infusion. I think she was just really nervous given the events of last week.
When the meds were hung, I went to get her breakfast in the cafeteria. In weeks past, she usually becomes ravenously hungry about 20 minutes into the infusion. I became a little concerned when that did not happen this week, and the breakfast went untouched. She started to feel more and more nauseated. The nurse came, and suggested that because Grace had started the infusion with a totally empty stomach (due to the vomiting), that we had created a vicious cycle: Grace couldn't/didn't want to eat because of the nausea and fear of vomiting. The empty stomach, however, was make the nausea worse. If she had started with a little food on her stomach, she probably would have been OK, but we had just started out on the wrong foot.
The nurse called her doctor, who prescribed a dose of Zofran, which is a FABULOUS anti-nausea med used in patients receiving cancer treatments. Grace took the Zofran, and started to feel much better within just a couple of minutes. It was miraculous. She still didn't feel like eating much, but she felt better.
Selfishly, I was glad she felt better because we had plans to meet an old friend for a quick lunch yesterday. Typically, Grace is "amped up" after a treatment, and after she started to feel better yesterday, this proved to be true once again. So, we walked around U-Village for a few minutes and then met Lara for lunch. Grace managed to eat most of a hamburger and some fries. By then, Grace was starting to get very tired, which is also par for the course. So, we loaded her up in the car and brought her home. She spent most of the afternoon on the couch, and felt great this morning and was able to go to school.
We are taking next week off from the steroid (methylprednisolone) therapy. I will administer a methotrexate injection at home next Thursday. The following week, she goes for her infusion on Wednesday in order to be sure that she feels 100% healthy by Friday so she can go to Encampment with her Brownie troop that weekend.
Thank you to Christine for a wonderful dinner last night!
Thank you everyone for reading.
All my best,
Sabrina
Sorry this post is a day late. Thank you to those of you who called wanting to make sure that everything was OK.
Yesterday went much better than last week. Unfortunately, Grace did vomit on her way to the infusion. I think she was just really nervous given the events of last week.
When the meds were hung, I went to get her breakfast in the cafeteria. In weeks past, she usually becomes ravenously hungry about 20 minutes into the infusion. I became a little concerned when that did not happen this week, and the breakfast went untouched. She started to feel more and more nauseated. The nurse came, and suggested that because Grace had started the infusion with a totally empty stomach (due to the vomiting), that we had created a vicious cycle: Grace couldn't/didn't want to eat because of the nausea and fear of vomiting. The empty stomach, however, was make the nausea worse. If she had started with a little food on her stomach, she probably would have been OK, but we had just started out on the wrong foot.
The nurse called her doctor, who prescribed a dose of Zofran, which is a FABULOUS anti-nausea med used in patients receiving cancer treatments. Grace took the Zofran, and started to feel much better within just a couple of minutes. It was miraculous. She still didn't feel like eating much, but she felt better.
Selfishly, I was glad she felt better because we had plans to meet an old friend for a quick lunch yesterday. Typically, Grace is "amped up" after a treatment, and after she started to feel better yesterday, this proved to be true once again. So, we walked around U-Village for a few minutes and then met Lara for lunch. Grace managed to eat most of a hamburger and some fries. By then, Grace was starting to get very tired, which is also par for the course. So, we loaded her up in the car and brought her home. She spent most of the afternoon on the couch, and felt great this morning and was able to go to school.
We are taking next week off from the steroid (methylprednisolone) therapy. I will administer a methotrexate injection at home next Thursday. The following week, she goes for her infusion on Wednesday in order to be sure that she feels 100% healthy by Friday so she can go to Encampment with her Brownie troop that weekend.
Thank you to Christine for a wonderful dinner last night!
Thank you everyone for reading.
All my best,
Sabrina
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