Well, we are in the midst of letting the drug "wash out" of Sara's system. While the rash is better each day, we can tell she is coming off the drug. Last night she wouldn't eat dinner and dinner ended when a bowl of applesauce went flying off the table and dumping onto my carpet (yet another reason we will be getting hardwoods installed before the end of the year). Bedtime was fine, except that she didn't fall right to sleep when she went to bed and called for daddy once (something that hasn't happened in the two weeks on the drug). Last night she woke up in the middle of the night for the first time in two weeks. She came to bed with us, but was awake for about two hours (or so it seemed in my half awake brain) and was very emotional and defiant. She slept "late" this morning and seemed to be in a good mood, but we will see how today goes at daycare.
I spoke to the nurse that oversees our case at the phsycartrists office yesterday. They can't get me in until the 18th to discuss a new drug therapy, so we are just going to have to wing it until then. I think daddy and I are going to have earlier bed times so we don't get behind on sleep again. She did give me a list of drugs that could be possibilities for our next try. I researched all of them, and while each carry their own risks and side effects, none of them have the sun sensitivity like this last one. That is good news for a family that will be spending a lot of time at the beach this summer!
Tonight Nigel has a work thing, so sissy and I are on our own. I need to grocery shop, so we may do that. The other part of me wants to blow off the grocery shopping and snuggle on the couch with my sissy... we will see what wins out!
Tuesday, June 9, 2009
Sunday, June 7, 2009
Starting over
UGH.... everything was going so well and yesterday we spent the day at the beach. Yesterday morning, we noticed that Sara was starting to get a rash. She has such sensitive skin, we chalked it up to the sunscreen I put on her as it started shortly after that. We gave her some Benadryl, bought different sunscreen and laid around on the beach.
Last night she came home with a good bit of sunburn, even after gooping her up with sunscreen over and over again yesterday. This morning, the rash was now covering her from head to to and I was started to get concerned. We went and had bagels and while sitting there, we realized that it was time for her to get looked at.
After waiting forever in the ER... Ok, it was less then two hours... but it felt like forever, a dr took one look at her and said she definitely has a drug rash and we were to stop her medication immediately. BUMMER.
After getting out of the ER, I called the psychiatrist and the on-call dr told me to stop immediately, give her a dose of Benadryl and call the office in the morning to get something else. Total bummer, because I think we liked this medication.
It will be interesting to see if she sleeps tonight or not when she doesn't receive her regular dose tonight. In the meantime, we are all going to lay done and take a nap. This sucks.
Last night she came home with a good bit of sunburn, even after gooping her up with sunscreen over and over again yesterday. This morning, the rash was now covering her from head to to and I was started to get concerned. We went and had bagels and while sitting there, we realized that it was time for her to get looked at.
After waiting forever in the ER... Ok, it was less then two hours... but it felt like forever, a dr took one look at her and said she definitely has a drug rash and we were to stop her medication immediately. BUMMER.
After getting out of the ER, I called the psychiatrist and the on-call dr told me to stop immediately, give her a dose of Benadryl and call the office in the morning to get something else. Total bummer, because I think we liked this medication.
It will be interesting to see if she sleeps tonight or not when she doesn't receive her regular dose tonight. In the meantime, we are all going to lay done and take a nap. This sucks.
Friday, June 5, 2009
Such a good girl!
Today my Sara had to have a blood draw to test her medication levels. While that seems so routine to most, having a child with several issues... we were prepared for a fight. Early this week, I went back and forth on if I should tell her before hand or not. I decided to tell her.... and then doubted my choice. Tons of screaming and tears about getting shots. For the last several days she has been telling everyone she is getting a shot. Lots of tears and whining (and a little screaming on top of that) every time the subject came up.
We recently found out that Sara will eat refried beans from a little Mexican place on the way home from school. This is actually a good thing because with her sensory issues and the texture of refried beans, we are surprised she would eat them. Additionally, they are pretty fattening and Lord knows my little stick of a child could use the fat. So, we told her that if she was good (meaning no screaming... we are ok with tears, but not screaming) we would take her to get refried beans on the way home from school today.
This morning was a struggle. She knew it was the big day, but did not like that she couldn't have her beloved juice cup this morning (it was a fasting blood test, so no food or drink). So, lots of tears and screaming this morning. I let her choose a snack to eat once we were done and she got in the car finally and sucked her thumb and didn't make a peep all the way to the lab.
When we got there, she was glued to me. We had a bit of a wait, so she climbed up in my lap with bunny, blankie and her thumb and was very quiet, but asked several times to make sure she could have juice and a snack when we left.
When we were called back, the staff was SUPER!!! They did their job quick so she didn't have time to throw a fit. She sat in my lap, they put the rubber band around her arm and found a vein. Another tech came in, held her arm (which is when the tears started... she hates to be held down) and POKE! BIG tears, and then they were gone. They took four vials of blood and the tears were gone before those vials were filled. She watched intently at her blood filling them up. A neon green band-aid and she was done.
Then we got another surprise... time to pee in a cup. Anyone ever tried to get a kid to pee in a cup on command?!?!? In the past, this has been a HUGE struggle for us. It usually requires me to get pretty inventive with putting a bowl in the potty to catch the urine and then pouring it in the cup. But, of course, my little girl shocked me. I got her giggling about not peeing on my hand and she filled that cup up! YAHOO!!! Success!
Last night we all went out to dinner to celebrate the end of a long project for me. She did great and ate like a horse (still not gaining any weight according to her weight last night, but at least she is eating). She has been sleeping well, actually she has been sleeping AWESOME! While we notice an increase in a lot of good behaviors, we also notice that the tears and whining haven't really stopped either. Not sure what that means exactly, but I meet with the doctor again on the 18th, so we will see what they have to say then. She is just VERY emotional, although the outbursts usually don't last very long.
As a another note, she had a GREAT day at therapy yesterday. She actually squished Jello between her fingers and toes. This is a HUGE, HUGE thing as she is usually very reluctant to have anything weird go on with her feet. Very awesome. Since starting therapy several months ago, we have seen an increase in the amount of times she is willing to "try" something. More often then not, she will try new foods now instead of simply turning up her nose. She has zero fear of water (a good and bad thing), and has even started going under water. She still has a lot of issues with going in circles on a swing, but is at least willing to try it each week in therapy, which is progress.
It has been a long week for this family. A work project has kept me at a high anxiety level and cranky and tied to my desk for long hours. Nigel has had work issues of his own and is not his usually joking self. And Sara has had her own worries this week with this blood draw. On top of that the painter was here earlier this week, so our house has been in shambles. Very soon the older kids will be here and there is a lot to get done. BUT, tomorrow, we are taking a break from it all and heading to the beach again. The three of us had such a great time last weekend, that we are going to do it again. It was super relaxing and so nice to soak up some sun. This time I will slather on the sunscreen so I don't get as much sun myself, but all of us need some time where the phone isn't ringing we are only focused on being a family.
Much Love to all who read this.
We recently found out that Sara will eat refried beans from a little Mexican place on the way home from school. This is actually a good thing because with her sensory issues and the texture of refried beans, we are surprised she would eat them. Additionally, they are pretty fattening and Lord knows my little stick of a child could use the fat. So, we told her that if she was good (meaning no screaming... we are ok with tears, but not screaming) we would take her to get refried beans on the way home from school today.
This morning was a struggle. She knew it was the big day, but did not like that she couldn't have her beloved juice cup this morning (it was a fasting blood test, so no food or drink). So, lots of tears and screaming this morning. I let her choose a snack to eat once we were done and she got in the car finally and sucked her thumb and didn't make a peep all the way to the lab.
When we got there, she was glued to me. We had a bit of a wait, so she climbed up in my lap with bunny, blankie and her thumb and was very quiet, but asked several times to make sure she could have juice and a snack when we left.
When we were called back, the staff was SUPER!!! They did their job quick so she didn't have time to throw a fit. She sat in my lap, they put the rubber band around her arm and found a vein. Another tech came in, held her arm (which is when the tears started... she hates to be held down) and POKE! BIG tears, and then they were gone. They took four vials of blood and the tears were gone before those vials were filled. She watched intently at her blood filling them up. A neon green band-aid and she was done.
Then we got another surprise... time to pee in a cup. Anyone ever tried to get a kid to pee in a cup on command?!?!? In the past, this has been a HUGE struggle for us. It usually requires me to get pretty inventive with putting a bowl in the potty to catch the urine and then pouring it in the cup. But, of course, my little girl shocked me. I got her giggling about not peeing on my hand and she filled that cup up! YAHOO!!! Success!
Last night we all went out to dinner to celebrate the end of a long project for me. She did great and ate like a horse (still not gaining any weight according to her weight last night, but at least she is eating). She has been sleeping well, actually she has been sleeping AWESOME! While we notice an increase in a lot of good behaviors, we also notice that the tears and whining haven't really stopped either. Not sure what that means exactly, but I meet with the doctor again on the 18th, so we will see what they have to say then. She is just VERY emotional, although the outbursts usually don't last very long.
As a another note, she had a GREAT day at therapy yesterday. She actually squished Jello between her fingers and toes. This is a HUGE, HUGE thing as she is usually very reluctant to have anything weird go on with her feet. Very awesome. Since starting therapy several months ago, we have seen an increase in the amount of times she is willing to "try" something. More often then not, she will try new foods now instead of simply turning up her nose. She has zero fear of water (a good and bad thing), and has even started going under water. She still has a lot of issues with going in circles on a swing, but is at least willing to try it each week in therapy, which is progress.
It has been a long week for this family. A work project has kept me at a high anxiety level and cranky and tied to my desk for long hours. Nigel has had work issues of his own and is not his usually joking self. And Sara has had her own worries this week with this blood draw. On top of that the painter was here earlier this week, so our house has been in shambles. Very soon the older kids will be here and there is a lot to get done. BUT, tomorrow, we are taking a break from it all and heading to the beach again. The three of us had such a great time last weekend, that we are going to do it again. It was super relaxing and so nice to soak up some sun. This time I will slather on the sunscreen so I don't get as much sun myself, but all of us need some time where the phone isn't ringing we are only focused on being a family.
Much Love to all who read this.
Tuesday, June 2, 2009
Emotions... or going thru the motions
It's a busy week in our house. I was hoping to be able to blog every day at least until we were sure this was the right medication therapy for Sara, but I am already falling behind.
Work is kicking my ass this week with a super, huge project that will be over soon, but in the meantime, late hours and load o' headaches. On top of that we are having the upstairs painted, while it's WONDERFUL to have some color in this house finally, not sure why I picked this week to do it! It is beautiful though. Walking upstairs feels like you are slipping into a warm cup of hot chocolate. Super nice.
As for my Sara... we heard that she had a great day at school yesterday, but she told Nigel that she got sent to timeout for calling someone an alien?!?!? Not sure that was a true story or not. :) We did spend a few minutes in the pool last night and she slept great again. The sleep seems to be doing wonders for all of us right now.
Sara is VERY, VERY sensitive to change, so when she came home last night to the upstairs being painted and the house in disarray, I was hoping that it wouldn't spark some sort of a meltdown. She was totally fine and was happy 'cause Mr. Paul (the painter) was here to "play." WHEW!
Now my only worry for this week is a blood draw. I have made an appointment and made sure they knew it was for a toddler.... one that has an issue with shots and needles. Do I tell her before hand, wait until we get there, wait until that morning? SIGH.... I just don't know. What I do know for a fact is that this is not going to happen with out a struggle, so that should be just dandy. Oh, and it's a fasting blood draw, so that just makes things that much more fun to look forward too.
I have a nasty sunburn that has blistered in a couple of spots... but come hell or high water, my arse is going to be on the beach again this weekend!!! Time for relaxation and fun times with my little one (and Nigel too! LOL!)
Work is kicking my ass this week with a super, huge project that will be over soon, but in the meantime, late hours and load o' headaches. On top of that we are having the upstairs painted, while it's WONDERFUL to have some color in this house finally, not sure why I picked this week to do it! It is beautiful though. Walking upstairs feels like you are slipping into a warm cup of hot chocolate. Super nice.
As for my Sara... we heard that she had a great day at school yesterday, but she told Nigel that she got sent to timeout for calling someone an alien?!?!? Not sure that was a true story or not. :) We did spend a few minutes in the pool last night and she slept great again. The sleep seems to be doing wonders for all of us right now.
Sara is VERY, VERY sensitive to change, so when she came home last night to the upstairs being painted and the house in disarray, I was hoping that it wouldn't spark some sort of a meltdown. She was totally fine and was happy 'cause Mr. Paul (the painter) was here to "play." WHEW!
Now my only worry for this week is a blood draw. I have made an appointment and made sure they knew it was for a toddler.... one that has an issue with shots and needles. Do I tell her before hand, wait until we get there, wait until that morning? SIGH.... I just don't know. What I do know for a fact is that this is not going to happen with out a struggle, so that should be just dandy. Oh, and it's a fasting blood draw, so that just makes things that much more fun to look forward too.
I have a nasty sunburn that has blistered in a couple of spots... but come hell or high water, my arse is going to be on the beach again this weekend!!! Time for relaxation and fun times with my little one (and Nigel too! LOL!)
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