Two weeks in and we are surviving the summer holiday and I am still sane (although of course everything is relative!)
We have mostly been chilling out doing things at home, because the next three weeks are going to be hectic. Puzzles have been very popular and Hannah has a new addiction for sew and lace cards. We had a lovely day at my friend Rachel's house on Tuesday. She invited us and some other friends over for the day. The kids played together beautifully (mainly!) and we relaxed in glorious sunshine in the garden.
The girls have made their own 'gardens' in planters which was a particularly messy experience. Each garden has a pond, a path, and some wierd totem pole things they made out of lolly sticks. Oh, and a few plants! As we have finally had a glimmer of summer like weather this week I decided to turn the sand pit into a paddling pool. There were a couple of good reasons for this; we have no sand, and it took about a thousandth of the time it would have taken to clean, inflate and fill the actual paddling pool.
I have been asked to speak at this year's CLDF conference about caring for a child with chronic liver disease! I feel very nervous about this and really hope I can do a good job. The conference is in 2 months so there is plenty of time to be terrified....sorry, I mean to prepare.
I have been doing the happy nappy dance for the last couple of weeks! Five years ago I was a week away from becoming a mum. I really do not want to think about how many hours of my life since then have been devoted to nappies. At last, there is light at the end of the tunnel. We are nappy free during the day! I feel like a new woman!
There is so much going on during the next few weeks that my head is spinning. This week we have William's birthday on Monday, then I need to get organised and get Caitlin some presents before Saturday! Then there is the girl's party on the 17th, Hugs and Hope day on the 19th, Hannah's bloods at Birmingham on the 21st, Hannah's endoscopy on the 22nd, Ethan's party on the 25th, and Hannah's birthday on the 26th. I can see the rest of the 'holiday' disappearing very rapidly.
I've been feeling quite down the last couple of days. I am scared about Hannah's endoscopy although I am trying not to be, and I just have an overwhelming desire to talk things through with Mum. I remember how when Hannah was ill as a baby I would be ringing her from the hospital every couple of hours. She was like my anchor. There are so many good and bad things that I just need to share with her and now I can't.
I am also missing a friend who I am used to sharing a lot of stuff with. She has a huge amount going on in her life at the moment and isn't around as much as I am used to. Thankfully it's just a temporary situation.
My Girls
Saturday, August 04, 2007
Tuesday, July 24, 2007
Summer holidays are here!
The last couple of weeks seem to have been quite busy. Of course the first thing after my last post was Hannah's Birmingham appointment. I made some lengthy updates to Hannah's blog about it, but forgot to mention it here.
So, a quick summary...
Hannah's appointment went very well overall. The only thing which is a slight concern is her Alk Phos level has shot up from its normal level. This can be caused by bile duct damage (what we don't want!) or bone damage, which in the case of children can be because they are having a growth spurt. It seems likely that growth could be the cause with Hannah but we just have to wait and see if the result trends downwards over time.
The other news is that Hannah's doctor has decided it is time for her to have an endoscopy to check for varices. These are internal varicose veins which are at risk of bleeding. We have also been invited to participate in a study to see whether treating large varices before a bleed is better than waiting for a bleed before treatment. We will only be eligible to take part in the study if the endoscopy shows that Hannah has varices which are at risk of bleeding - obviously we hope that will not be the case. If she does qualify, she will be randomly assigned to either the treatment group or the no treatment group. We haven't made a final choice about whether or not to take part yet, but at the moment we think that we probably will.
I have also booked a birthday party for the girls at the Jungle Junction soft play area. Their birthdays are two weeks and one day apart so the party is (almost) in the middle. As you can imagine they are very excited even though there is still over three weeks to go.
We have enjoyed seeing my niece Lisa who is back home at the moment after a year in Gibraltar. The girls love spending time with her and she has taken them out to have fun a few times.
We had fun watching the Godiva Festival carnival parade the other weekend, thankfully with a rare appearance from the sun! The girls chose some revolting multi coloured ice lollys which of course turned a muddy brown as soon as they started eating them, coating their clothes with unmentionable looking stains. We didn't go and look around the stalls though; although it is a 'free festival' there are plenty of things the girls would want to do which do cost money...bouncy castles, trampolines, helium balloons, face painting....so instead we went to the playground after the parade, which they enjoyed just as much, and I enjoyed more!
The school year has finished and thankfully the girls have been into relaxing more than doing so far. This is good because it is giving me time to chill out for a few days too! I did plan to take them to the library yesterday but they decided they would rather just read some of the books at home and so we snuggled together on the sofa for a story session. It was perhaps a good job we didn't do anything too interesting as a shopping trip to Asda sent them both into a giddy whirl of excitement! They have played very happily at home this morning, then we went to Grandad's for lunch and they burned up lots of energy racing around his garden.
I'm sure there is more but a rare rainless day has me in a frantic washing frenzy, and the latest load has just finished.............
So, a quick summary...
Hannah's appointment went very well overall. The only thing which is a slight concern is her Alk Phos level has shot up from its normal level. This can be caused by bile duct damage (what we don't want!) or bone damage, which in the case of children can be because they are having a growth spurt. It seems likely that growth could be the cause with Hannah but we just have to wait and see if the result trends downwards over time.
The other news is that Hannah's doctor has decided it is time for her to have an endoscopy to check for varices. These are internal varicose veins which are at risk of bleeding. We have also been invited to participate in a study to see whether treating large varices before a bleed is better than waiting for a bleed before treatment. We will only be eligible to take part in the study if the endoscopy shows that Hannah has varices which are at risk of bleeding - obviously we hope that will not be the case. If she does qualify, she will be randomly assigned to either the treatment group or the no treatment group. We haven't made a final choice about whether or not to take part yet, but at the moment we think that we probably will.
I have also booked a birthday party for the girls at the Jungle Junction soft play area. Their birthdays are two weeks and one day apart so the party is (almost) in the middle. As you can imagine they are very excited even though there is still over three weeks to go.
We have enjoyed seeing my niece Lisa who is back home at the moment after a year in Gibraltar. The girls love spending time with her and she has taken them out to have fun a few times.
We had fun watching the Godiva Festival carnival parade the other weekend, thankfully with a rare appearance from the sun! The girls chose some revolting multi coloured ice lollys which of course turned a muddy brown as soon as they started eating them, coating their clothes with unmentionable looking stains. We didn't go and look around the stalls though; although it is a 'free festival' there are plenty of things the girls would want to do which do cost money...bouncy castles, trampolines, helium balloons, face painting....so instead we went to the playground after the parade, which they enjoyed just as much, and I enjoyed more!
The school year has finished and thankfully the girls have been into relaxing more than doing so far. This is good because it is giving me time to chill out for a few days too! I did plan to take them to the library yesterday but they decided they would rather just read some of the books at home and so we snuggled together on the sofa for a story session. It was perhaps a good job we didn't do anything too interesting as a shopping trip to Asda sent them both into a giddy whirl of excitement! They have played very happily at home this morning, then we went to Grandad's for lunch and they burned up lots of energy racing around his garden.
I'm sure there is more but a rare rainless day has me in a frantic washing frenzy, and the latest load has just finished.............
Monday, July 09, 2007
Back to the land of the living (nearly)
I had a quiet week last week, needing some time to recover from the hectic two weeks before it! We got Caitlin's school report on Friday. It was very good and I am so proud of her! She tries her best, is happy and enthusiastic, is kind to the other children, and is doing well in her work!
On Saturday evening I went for a meal with my oldest and dearest friend Sarah to celebrate her birthday. We decided to repeat the celebration we had for my birthday in April by going for a Chinese buffet meal. I love the buffet restaurants because you don't have to choose what to have, you can just have a little bit of everything!
We also got a new lawnmower on Saturday. The old one had been poorly for quite some time (in fact since we lived at our old house) but I finally finished it off last week by mowing over one of the girls' garden tools - a metal hand rake with a wooden handle. It made quite an interesting noise.....
So, the new mower has: a blade that is straight and actually has a cutting edge (!) AND.....drumroll.........a grass collection box!!!!!!!!!!
Yesterday we went to the church summer fete. Amazingly it went ahead without a single drop of rain falling! Caitlin had a sprint race against her classmates. I told her the most important thing was to enjoy herself and she had a big smile on her face when she finished despite the fact she came last and lost her cap halfway! The girls had a go on the bouncy castle then we had some hotdogs for lunch. I had a yummy slice of chocolate cake and everyone else had ice creams. I had offered to help out with the kids games that PTA were running for a short while but I ended up being stuck there for ages because the woman who I was 'giving a break' never came back! While I was doing that Hannah ran off and Andy had to hunt for her, fortunately he found her quickly. I didn't get chance to look around the stalls but I didn't mind, I've been nearly every year of my life and it doesn't change much! After that I took the girls to get their faces painted. Caitlin had a lovely beach scene and Hannah had a blue butterfly. Unfortunately we forgot the camera so didn't take any photos. We finished the day off with a second go on the bouncy castle.
Hannah has her check up at Birmingham tomorrow (more on her blog) so I'm going to try and have a relaxing evening and not think too much.
On Saturday evening I went for a meal with my oldest and dearest friend Sarah to celebrate her birthday. We decided to repeat the celebration we had for my birthday in April by going for a Chinese buffet meal. I love the buffet restaurants because you don't have to choose what to have, you can just have a little bit of everything!
We also got a new lawnmower on Saturday. The old one had been poorly for quite some time (in fact since we lived at our old house) but I finally finished it off last week by mowing over one of the girls' garden tools - a metal hand rake with a wooden handle. It made quite an interesting noise.....
So, the new mower has: a blade that is straight and actually has a cutting edge (!) AND.....drumroll.........a grass collection box!!!!!!!!!!
Yesterday we went to the church summer fete. Amazingly it went ahead without a single drop of rain falling! Caitlin had a sprint race against her classmates. I told her the most important thing was to enjoy herself and she had a big smile on her face when she finished despite the fact she came last and lost her cap halfway! The girls had a go on the bouncy castle then we had some hotdogs for lunch. I had a yummy slice of chocolate cake and everyone else had ice creams. I had offered to help out with the kids games that PTA were running for a short while but I ended up being stuck there for ages because the woman who I was 'giving a break' never came back! While I was doing that Hannah ran off and Andy had to hunt for her, fortunately he found her quickly. I didn't get chance to look around the stalls but I didn't mind, I've been nearly every year of my life and it doesn't change much! After that I took the girls to get their faces painted. Caitlin had a lovely beach scene and Hannah had a blue butterfly. Unfortunately we forgot the camera so didn't take any photos. We finished the day off with a second go on the bouncy castle.
Hannah has her check up at Birmingham tomorrow (more on her blog) so I'm going to try and have a relaxing evening and not think too much.
Thursday, June 28, 2007
Happy, sad, peaceful
Caitlin's assembly went well this morning and was very cute. She had to say a prayer thanking God for the gift of sight. Caitlin read her part beautifully and Hannah sat on my knee the whole time, aided by a banana, a biscuit and a pen and paper. They also sang 'Prayer is like a telephone' which left Hannah singing her own versions of it for the rest of the day.
After that Hannah and I went over to visit Angie and Adam at BCH. Adam had an endoscopy yesterday which went very well, thank goodness. We met up with them for a couple of hours before they flew back to Northern Ireland. Adam is a lovely lad and so full of life and energy. He and Hannah got on so well even though there is such a big age gap between them, I think it's because they have very similar personalities! It was wonderful to chat to Angie and also to meet her mum Maureen.
Adam scoots Hannah round in the car
Adam and Hannah on the roundabout
Angie and me
Adam, Angie and Hannah
Unfortunately about 3 miles from home was when the crap part of the day started. The dual carriageway was coned off on the right hand lane. I was queuing up in the left hand lane, the one that was open, and just as I got to the part when the right hand lane finished the usual idiot came belting down the right hand lane and tried to jump the queue. This was a new breed of idiot though, who thought it would be a good idea to try and fit side by side with me in one lane. As my car began to be forced into the crash barrier I beeped my horn, to be told through the open window that I was a f***ing b***h, for trying to warn him he was about to kill me and Hannah. There really are some lovely people about.
Somewhat shaken, I arrived home to find that the food which I had allowed Hannah to eat in the car on the strict promise that she DID NOT MAKE A MESS had been crumbled into small pieces and spread all over the back of the car. Tears and tantrums followed, from me as well as Hannah. Eventually though the mess was cleared up and calm was restored.
A quiet couple of hours before we had to pick Caitlin up (she did an after school club, a gross motor skills development thing for the little ones) lulled me into a false sense of security. While I was waiting for her to come out her teacher came and spoke to me and said she had been very badly behaved that afternoon and hadn't done anything she was told. I had been so looking forward to seeing her and praising her for her assembly and how well she had done, and finding out if she enjoyed the after school club, and that totally took the wind out of my sails. I felt so down when we got back. The one thing I really wanted was to talk all these trivial but at the same time upsetting and annoying things out with Mum. She would always listen and give wise advice and most importantly she would make me smile again.
Something else happened though, to stop me feeling so sorry for myself. I checked my emails and saw that one of my friends who lost her precious child had updated her blog. I read her latest post, and some of the older ones too. It made me remember that I should never feel too down when I have both my girls to hold close to me whenever I want to, and that even when they are naughty and exasperating that they are the most important things in the world and I am truly blessed to have them. So no more tears; we had a quiet teatime and bathtime, and I got the time to sit down with Caitlin and share with her how well she did in her assembly.
After that Hannah and I went over to visit Angie and Adam at BCH. Adam had an endoscopy yesterday which went very well, thank goodness. We met up with them for a couple of hours before they flew back to Northern Ireland. Adam is a lovely lad and so full of life and energy. He and Hannah got on so well even though there is such a big age gap between them, I think it's because they have very similar personalities! It was wonderful to chat to Angie and also to meet her mum Maureen.
Adam scoots Hannah round in the car
Adam and Hannah on the roundabout
Angie and me
Adam, Angie and Hannah
Unfortunately about 3 miles from home was when the crap part of the day started. The dual carriageway was coned off on the right hand lane. I was queuing up in the left hand lane, the one that was open, and just as I got to the part when the right hand lane finished the usual idiot came belting down the right hand lane and tried to jump the queue. This was a new breed of idiot though, who thought it would be a good idea to try and fit side by side with me in one lane. As my car began to be forced into the crash barrier I beeped my horn, to be told through the open window that I was a f***ing b***h, for trying to warn him he was about to kill me and Hannah. There really are some lovely people about.
Somewhat shaken, I arrived home to find that the food which I had allowed Hannah to eat in the car on the strict promise that she DID NOT MAKE A MESS had been crumbled into small pieces and spread all over the back of the car. Tears and tantrums followed, from me as well as Hannah. Eventually though the mess was cleared up and calm was restored.
A quiet couple of hours before we had to pick Caitlin up (she did an after school club, a gross motor skills development thing for the little ones) lulled me into a false sense of security. While I was waiting for her to come out her teacher came and spoke to me and said she had been very badly behaved that afternoon and hadn't done anything she was told. I had been so looking forward to seeing her and praising her for her assembly and how well she had done, and finding out if she enjoyed the after school club, and that totally took the wind out of my sails. I felt so down when we got back. The one thing I really wanted was to talk all these trivial but at the same time upsetting and annoying things out with Mum. She would always listen and give wise advice and most importantly she would make me smile again.
Something else happened though, to stop me feeling so sorry for myself. I checked my emails and saw that one of my friends who lost her precious child had updated her blog. I read her latest post, and some of the older ones too. It made me remember that I should never feel too down when I have both my girls to hold close to me whenever I want to, and that even when they are naughty and exasperating that they are the most important things in the world and I am truly blessed to have them. So no more tears; we had a quiet teatime and bathtime, and I got the time to sit down with Caitlin and share with her how well she did in her assembly.
Wednesday, June 27, 2007
Wow, I've done loads!
Well, I have been so busy since my last entry! Caitlin's bedroom is finished!!!! (If I'm completely honest there are still one or two finishing touches to be made but they are going to have to wait a while longer). The hard work was definitely worth it, it is definitely a 'princess bedroom' just like she wanted.
I still have the huge task of sorting out all the toys into the new storage, don't want to face that one at all!
Then there was a mad rush to get ready for the holiday, with the house in complete chaos from the decorating. We had a lovely week just relaxing and doing holiday things. We have already spent 4 weeks in the area in the last two years and seen lots of the local attractions so we didn't bother doing that this year. We just did simple things to keep the girls happy like going to the pool, the adventure playground, the 2p arcades and that sort of thing. The weather wasn't good enough for the beach so we just had 3 or 4 short sessions down there. While we were there my friend Sarah drove over to visit as she lives close by. That meant that Caitlin got to meet up with her pen friend Amy. The girls played really nicely together while Sarah and I enjoyed a cuppa, choccy biscuits and most importantly a good chat. Sam (waves) has been telling me for ages I should make a montage so I had a play around with our holiday photos this morning and managed to create my very first montage! I'm reasonably pleased with the result although the photos are a bit blurry in it.
On Sunday it was Andy's birthday. We celebrated with a quiet day and a Chinese takeaway for tea :)
Then, on Monday, Hannah and I went down to Oxford to meet up with Elly and Sam. Sam and her family were having a break at the guest house owned by Elly's mum. I got lost in a different place than where I got lost last time I drove down to Elly's, but made it there eventually. It is always a joy to meet up with Elly and her beautiful boys and it was very exciting to meet Sam, her partner Tony and their daughters Bethany and Eloise for the first time. We all visited the Oxford University Natural History Museum, which looked absolutely fascinating but I missed a lot of it trying to stop Hannah from destroying the exhibits. She showed particular determination with the ones marked 'fragile, do not touch'. After a cuppa and a cake that were literally worth their weight in gold (!) Hannah and I set off home.
Unbelievably, Sam and Tony hadn't had quite enough of us on Monday, and it was lovely to have them and the girls here for tea yesterday on their way back up to Yorkshire. They brought my girls some lovely presents which have gone down a storm, how thoughtful and generous. There is one blessing from Hannah having liver disease which I see every day - the wonderful friends I have made who I never would have met otherwise.
Today I have had a Sharon day! I caught up with some paperwork and phone calls this morning while Hannah was at pre-school, and did the holiday montage. I relaxed while she had her nap and played some free poker. The girls went to Von's for tea so I did a few jobs and went out to the shops (by myself!). I feel refreshed having had virtually a whole day to myself.
Tomorrow I'm off again! Caitlin's class are doing an assembly in the morning and they all have something to say. After that Hannah and I are popping over to BCH to visit Angie and Adam. Adam is inpatient for a scheduled procedure (it was today, and went very well, thank goodness) so we are going to have some lunch and meet up before Adam is discharged and they fly back over to Northern Ireland.
Oh, my garden...never did I think I would say there was too much rain! The weeds are going berserk (although I have had a good cull in the last three days) and some of my plants which are in tubs without great drainage are dying from too much water! However, I do have flowers (yippee), and I am getting out there in between showers of rain to do some tidying up, so once that is done I will be out there taking pics.
I still have the huge task of sorting out all the toys into the new storage, don't want to face that one at all!
Then there was a mad rush to get ready for the holiday, with the house in complete chaos from the decorating. We had a lovely week just relaxing and doing holiday things. We have already spent 4 weeks in the area in the last two years and seen lots of the local attractions so we didn't bother doing that this year. We just did simple things to keep the girls happy like going to the pool, the adventure playground, the 2p arcades and that sort of thing. The weather wasn't good enough for the beach so we just had 3 or 4 short sessions down there. While we were there my friend Sarah drove over to visit as she lives close by. That meant that Caitlin got to meet up with her pen friend Amy. The girls played really nicely together while Sarah and I enjoyed a cuppa, choccy biscuits and most importantly a good chat. Sam (waves) has been telling me for ages I should make a montage so I had a play around with our holiday photos this morning and managed to create my very first montage! I'm reasonably pleased with the result although the photos are a bit blurry in it.
On Sunday it was Andy's birthday. We celebrated with a quiet day and a Chinese takeaway for tea :)
Then, on Monday, Hannah and I went down to Oxford to meet up with Elly and Sam. Sam and her family were having a break at the guest house owned by Elly's mum. I got lost in a different place than where I got lost last time I drove down to Elly's, but made it there eventually. It is always a joy to meet up with Elly and her beautiful boys and it was very exciting to meet Sam, her partner Tony and their daughters Bethany and Eloise for the first time. We all visited the Oxford University Natural History Museum, which looked absolutely fascinating but I missed a lot of it trying to stop Hannah from destroying the exhibits. She showed particular determination with the ones marked 'fragile, do not touch'. After a cuppa and a cake that were literally worth their weight in gold (!) Hannah and I set off home.
Unbelievably, Sam and Tony hadn't had quite enough of us on Monday, and it was lovely to have them and the girls here for tea yesterday on their way back up to Yorkshire. They brought my girls some lovely presents which have gone down a storm, how thoughtful and generous. There is one blessing from Hannah having liver disease which I see every day - the wonderful friends I have made who I never would have met otherwise.
Today I have had a Sharon day! I caught up with some paperwork and phone calls this morning while Hannah was at pre-school, and did the holiday montage. I relaxed while she had her nap and played some free poker. The girls went to Von's for tea so I did a few jobs and went out to the shops (by myself!). I feel refreshed having had virtually a whole day to myself.
Tomorrow I'm off again! Caitlin's class are doing an assembly in the morning and they all have something to say. After that Hannah and I are popping over to BCH to visit Angie and Adam. Adam is inpatient for a scheduled procedure (it was today, and went very well, thank goodness) so we are going to have some lunch and meet up before Adam is discharged and they fly back over to Northern Ireland.
Oh, my garden...never did I think I would say there was too much rain! The weeds are going berserk (although I have had a good cull in the last three days) and some of my plants which are in tubs without great drainage are dying from too much water! However, I do have flowers (yippee), and I am getting out there in between showers of rain to do some tidying up, so once that is done I will be out there taking pics.
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