It has been a few days since my last blog so I apologise. I only have a couple of hours in the evening to do the sorty out stuff and the last few evenings have been busy so I have been too tired to blog. The last few days have been a mix of good and bad. It's funny how new worries replace old worries that are starting to fade. There are always worries though.
Saturday was a fairly good day. We ate breakfast at a Waffle House, their blueberry buttermilk waffles with butter and maple syrup beat anything at RMH. Unfortunately, we were sat in the spot where the cold air from the air conditioning was coming down the wall and we all got cold. Millie was shivering. I think she gets cold without her hair although she was wearing a hat. In the afternoon we went to the Hands-on Children's museum. Which is less of a museum and more of a collection of themed areas for kids to do pretend play. There was a shop, a post office, a train area, a puppet area and a dressing up area with a stage to name a few. We also found a room for the three and unders which had loads of toys. Millie enjoyed that room. It was fun for her and a break for us but it was quite small with loads of people and pretty hot and stuffy. We will go again and have recommended it to others but we will ring beforehand to see if it is quiet. It is quite a good idea for an indoor play area but not sure how it would work in the UK. The effort required to keep it all clean and tidy most be enormous. However we weren't sure it was kept as clean as it would have to be in the UK to abide by h&s rules. The building looked a bit run down.
It was hot dogs again for tea so we decided to be brave and venture out for another meal. We chose the River City Brewing Company restaurant which is on the river near MOSH and Friendship Fountain. It was nice to be out and 'normal'. We sat at a table with a nice view of the river and boats, Millie was quite taken by the view and spent a lot of time looking out of the window. Which was good as it meant we could eat. Millie had some of my shrimps again - I will have to remember to get her some to herself next time! Millie took her hat off after a few minutes of being there. I found myself checking to see who was looking and what their reaction was. I spent most of the meal with half an eye on everyone else checking out our daughter. I felt self conscious about it, I am just glad she isn't aware of the stares. After the meal we went to watch the sound and light show at the fountain. It is a huge fountain and the view over the city, through the lit up water, was beautiful. We have nicknamed one of the many bridges here the blue bridge because it is. The blue bridge was behind the fountain and it had been lit up in blue lights. It was pretty cool. Just a shame that everyone stared at Millie. It was our first time out in real public since she has lost most of her hair - it was hard but I'm sure it will get easier as we get used to it, the hair loss and the stares.
Sunday was not a good day. It had it's moments, like eating fresh corn on the cob for lunch. They cost 20c each and I cooked them myself! But that was probably the only moment of the whole day. Millie started a different medication in the morning and appeared to react badly. One of the anti-epileptic medicines that she is on is not available out here so the doctor here has given her something that is similar. Within 30 minutes of having her first dose she was wobbly, drowsy, spaced out and moody. Oh boy, was she moody - all day. We had the biggest tantrums we have ever had. It was hard enough trying to manage her behaviour for the day, it was harder thinking that it might be the medicine and she was supposed to have 3 doses in the day. It was scary. That night I emailed our radiotherapy consultant and asked if she could get one of the neuro consultants to check her medication. This particular drug was only supposed to be used in the short term whilst they sorted out the other main anti-epileptic drug. However, we were sent out here so quickly that it was decided not to change anything whilst we were here. I got a response within 24 hours suggesting that the dose could be reduced over time and Millie could come off the drug completely. That would be good.
I also emailed our local oncology pediatric nurse and explained the situation. The response from them was also very quick. By 11am they had all had a chat and decided to reduce the dose drastically, hoping that her reaction was due to an overdose. Her behaviour returned on the Monday morning within half on hour of having her first dose. And that was after being happy to play with her cuddlies in bed for an hour whilst we dozed. Fortunately, the smalled dose seems to have helped however she is still less balanced than she was a few days ago and that is causing us some concern still. I have contacted our nurse again and am hoping we can see them this week to discuss everything.
Just thought of another good moment from Sunday. We went over to Riverside Park, just across the river from here, to feed the ducks in the only pond we have found. The ducks weren't interested but the very green murky water suddenly came alive with turtles/terrapins and tiny fish. All wanting to eat the bread that Millie was throwing in! That was a fun experience that we will do again when we have an hour to spare and just need to get out.
Back to the proton routine on Monday. Number 17 of 33, 16 to go - over half way now - yeah!!! I have found myself saying how many are left rather than how many we have done. And, best of all despite everything with her medicines, Millie went through the whole process without a single complaint other than when the drip line was attached. Not sure why she doesn't like it but she doesn't. We will have to work on that. She was even calm when they put in the anaesthetic, she looked a little worried but did not cry. It was amazing. She was even better today, she got her wiggly out before Gina was even ready for it! Bless Gina she took advantage and hooked her up. She'll moan at everything tomorrow you watch!
We had a full day today - physical therapy in the morning, then proton, then occupational therapy in the afternoon. She was shattered especially as both therapists worked her hard. Despite not being able to balance as well as normal she is better at doing more and more things like sitting in a squat, climbing everything, climbing stairs without putting both feet on each step. However she is also taking more risks and getting herself into scrapes, not really something you want with a child with no hair. Somehow she looks more vulnerable. Yesterday she was swiffering our bathroom floor and enjoying doing it. Unfortunately, she walked backwards towards the bath which is quite low and fell backwards into it. I couldn't decide whether to laugh or cry! She was ok - just very shocked. Not sure she learnt though! Later on in the day she was having a tantrum in the room and managed to bang her head on the table. It came up as a bump which was very visible. I did wander whether they did proton with lumps. It had gone down by this morning although she now has a nice bruise - and they do do proton with lumps! This morning at physical therapy she decided she wanted to get a ball from the ball pool. She reached over the wall, which is about chest height for her, and almost in slow motion slid over the wall and went head first into the ball pool. The poor thing was not happy, suddenly finding yourself under lots of balls and unable to stand must be scary. But she recovered quickly. It will be interesting to see if she still likes ball pools. And I still don't know whether to laugh or cry. In normal circumstances I would be laughing, so I think I will allow myself a few smiles and consider her risk taking a positive development.
A quiet day tomorrow. Just proton and maybe some shoe shopping. Only 14 more to go. We should be done in 3 weeks and getting ready to fly home. Our thoughts are already heading in that direction - how on earth are we going to get everything home?!?
Saturday was a fairly good day. We ate breakfast at a Waffle House, their blueberry buttermilk waffles with butter and maple syrup beat anything at RMH. Unfortunately, we were sat in the spot where the cold air from the air conditioning was coming down the wall and we all got cold. Millie was shivering. I think she gets cold without her hair although she was wearing a hat. In the afternoon we went to the Hands-on Children's museum. Which is less of a museum and more of a collection of themed areas for kids to do pretend play. There was a shop, a post office, a train area, a puppet area and a dressing up area with a stage to name a few. We also found a room for the three and unders which had loads of toys. Millie enjoyed that room. It was fun for her and a break for us but it was quite small with loads of people and pretty hot and stuffy. We will go again and have recommended it to others but we will ring beforehand to see if it is quiet. It is quite a good idea for an indoor play area but not sure how it would work in the UK. The effort required to keep it all clean and tidy most be enormous. However we weren't sure it was kept as clean as it would have to be in the UK to abide by h&s rules. The building looked a bit run down.
It was hot dogs again for tea so we decided to be brave and venture out for another meal. We chose the River City Brewing Company restaurant which is on the river near MOSH and Friendship Fountain. It was nice to be out and 'normal'. We sat at a table with a nice view of the river and boats, Millie was quite taken by the view and spent a lot of time looking out of the window. Which was good as it meant we could eat. Millie had some of my shrimps again - I will have to remember to get her some to herself next time! Millie took her hat off after a few minutes of being there. I found myself checking to see who was looking and what their reaction was. I spent most of the meal with half an eye on everyone else checking out our daughter. I felt self conscious about it, I am just glad she isn't aware of the stares. After the meal we went to watch the sound and light show at the fountain. It is a huge fountain and the view over the city, through the lit up water, was beautiful. We have nicknamed one of the many bridges here the blue bridge because it is. The blue bridge was behind the fountain and it had been lit up in blue lights. It was pretty cool. Just a shame that everyone stared at Millie. It was our first time out in real public since she has lost most of her hair - it was hard but I'm sure it will get easier as we get used to it, the hair loss and the stares.
Sunday was not a good day. It had it's moments, like eating fresh corn on the cob for lunch. They cost 20c each and I cooked them myself! But that was probably the only moment of the whole day. Millie started a different medication in the morning and appeared to react badly. One of the anti-epileptic medicines that she is on is not available out here so the doctor here has given her something that is similar. Within 30 minutes of having her first dose she was wobbly, drowsy, spaced out and moody. Oh boy, was she moody - all day. We had the biggest tantrums we have ever had. It was hard enough trying to manage her behaviour for the day, it was harder thinking that it might be the medicine and she was supposed to have 3 doses in the day. It was scary. That night I emailed our radiotherapy consultant and asked if she could get one of the neuro consultants to check her medication. This particular drug was only supposed to be used in the short term whilst they sorted out the other main anti-epileptic drug. However, we were sent out here so quickly that it was decided not to change anything whilst we were here. I got a response within 24 hours suggesting that the dose could be reduced over time and Millie could come off the drug completely. That would be good.
I also emailed our local oncology pediatric nurse and explained the situation. The response from them was also very quick. By 11am they had all had a chat and decided to reduce the dose drastically, hoping that her reaction was due to an overdose. Her behaviour returned on the Monday morning within half on hour of having her first dose. And that was after being happy to play with her cuddlies in bed for an hour whilst we dozed. Fortunately, the smalled dose seems to have helped however she is still less balanced than she was a few days ago and that is causing us some concern still. I have contacted our nurse again and am hoping we can see them this week to discuss everything.
Just thought of another good moment from Sunday. We went over to Riverside Park, just across the river from here, to feed the ducks in the only pond we have found. The ducks weren't interested but the very green murky water suddenly came alive with turtles/terrapins and tiny fish. All wanting to eat the bread that Millie was throwing in! That was a fun experience that we will do again when we have an hour to spare and just need to get out.
Back to the proton routine on Monday. Number 17 of 33, 16 to go - over half way now - yeah!!! I have found myself saying how many are left rather than how many we have done. And, best of all despite everything with her medicines, Millie went through the whole process without a single complaint other than when the drip line was attached. Not sure why she doesn't like it but she doesn't. We will have to work on that. She was even calm when they put in the anaesthetic, she looked a little worried but did not cry. It was amazing. She was even better today, she got her wiggly out before Gina was even ready for it! Bless Gina she took advantage and hooked her up. She'll moan at everything tomorrow you watch!
We had a full day today - physical therapy in the morning, then proton, then occupational therapy in the afternoon. She was shattered especially as both therapists worked her hard. Despite not being able to balance as well as normal she is better at doing more and more things like sitting in a squat, climbing everything, climbing stairs without putting both feet on each step. However she is also taking more risks and getting herself into scrapes, not really something you want with a child with no hair. Somehow she looks more vulnerable. Yesterday she was swiffering our bathroom floor and enjoying doing it. Unfortunately, she walked backwards towards the bath which is quite low and fell backwards into it. I couldn't decide whether to laugh or cry! She was ok - just very shocked. Not sure she learnt though! Later on in the day she was having a tantrum in the room and managed to bang her head on the table. It came up as a bump which was very visible. I did wander whether they did proton with lumps. It had gone down by this morning although she now has a nice bruise - and they do do proton with lumps! This morning at physical therapy she decided she wanted to get a ball from the ball pool. She reached over the wall, which is about chest height for her, and almost in slow motion slid over the wall and went head first into the ball pool. The poor thing was not happy, suddenly finding yourself under lots of balls and unable to stand must be scary. But she recovered quickly. It will be interesting to see if she still likes ball pools. And I still don't know whether to laugh or cry. In normal circumstances I would be laughing, so I think I will allow myself a few smiles and consider her risk taking a positive development.
A quiet day tomorrow. Just proton and maybe some shoe shopping. Only 14 more to go. We should be done in 3 weeks and getting ready to fly home. Our thoughts are already heading in that direction - how on earth are we going to get everything home?!?
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