08.28.07
A Day Out
Tabitha has been sick all over the weekend. The only positive thing is that she hasn’t been too upset by it this time. Sometimes she can be both ill and very miserable. It’s much easier to cope with when she is just ill. Yesterday, we decided to use the free pass we had been given to a new local attraction, Puxton Park. We had a wonderful time. They have a huge play barn with loads of soft play equipment and slides. I started off being quite reserved, well you try to be respectable don’t you, but after a while I just thought to myself “sod it, I’m going to have fun”, and I did. I went down the slides, including one of the sheer drop ones, played on the spinning discs, climbed in and out of tunnels, and was only slightly embarrassed when I recognized and said hello to the guy who runs the local farm shop while I was walking over a rope bridge.
Tabitha didn’t enjoy it as much as I would have liked. She loved the slide at Ellie’s friends house the other day, and I thought she would enjoy the toddler slide there, but she didn’t. In fact, she just screamed if I took her near it, so in the end I let her sit back in her pushchair. She was still being a little bit sick, so maybe the motion of sliding was upsetting her while she still isn’t 100%. It was a shame, but it’s so important for us all to get out together for the day whenever we can. We have some more vouchers to use yet, maybe if she is fully better this weekend we can go out somewhere else for the day. I might even forget my age again.
08.26.07
How Sweet
Ellie found an old Christmas card today. She asked me who it was from, I read the name of the little boy who had given it to her, and she said “Frances loves him” (Frances being another of her friends). I then asked, “Who do you love, Ellie?” and without even pausing she replied “I love Tabitha”. It’s the little things that highlight how lucky we are.
08.24.07
It’s done
Tabitha managed to hold off the vomiting until after the procedure this morning thank goodness. We got there stupidly early, which involved me getting up at 5:10am (not pleasant), but at least we managed to get a free parking space for my efforts. Tabs was on fine form this morning, when the nurse came in to introduce herself, Tabitha was laughing hysterically at me walking from one side of the cot to the other. Anyway, she went down, and it was over in about 30 mins. When I went to collect her, the recovery nurse said she had only managed to get one set of obs, because after that, Tabitha woke up, ripped off the oxygen mask and the SATS monitor, sat up and said very loudly with all her body language “You can get all that stuff off me right now!” She can’t have had a lot of anaestetic because she came round very quickly.
Back on the ward, she was fine until I tried to give her something into her gastrostomy. In fact, she did nothing but vomit all afternoon. I was totally abandoned by all the nursing staff (just for a change) and in the end, when the sister popped her head round the door, I told her we hadn’t seen anyone for ages, and what was the plan. She agreed we could go if I was happy, and to be honest, Tabitha vomiting is hardly new. So we packed up and came home.
We won’t get the total results of this weeks investigations until October, but we did find out something of note today. Apparently, the human lung was three sections, the upper, middle and lower. The upper section is divided into three sections and the middle into two. But not in Tabitha’s case, they are reversed. No one thinks that is what has caused the problems, but it’s just another example of how she is built just that little bit differently.
08.23.07
It’s a busy week
Tabitha and I spent Monday night in the hospital. Nothing untoward, just a scheduled sleep study. I say just, it turned out to be a right palaver. Tabitha had to have straps around her chest and her abdomen, a SATS monitor on her toe, movement sensors on her leg and arm, ECG leads and finally, EEG leads. I told them there was no point in putting on the EEG leads while she was awake, she would only pull them off, so they waited until she fell asleep. She needed 9 leads in total. They got 8 on. It took 1.5 hours to get them on, and then she woke up, screamed the ward down for 40 mins, vomited everywhere about 4 times and generally caused havoc. In the next bed, someone else was having a sleep study too. Bet they didn’t get much data for him between 11 and 11:40 either. The outcome was they got the respiratory data, but not the EEG. Lets hope that paints a good enough picture.
Tomorrow, she is having her bronchoscopy. At last. We’ve been waiting about 14 months for this. The last time it was booked we had to cancel because Tabitha was having a sick period. Today, she has been sick 4 times. I’m not cancelling it again until the morning. I hate having to cancel these things when we’ve waited so long. Obviously if Tabs is unwell, there is no way it can go ahead, but she isn’t sick enough today to warrant a phone call. Fingers crossed we get it all finished. Then we should get some answers about her oxygen dependance, even if the answer remains that they don’t know, at least we’ll know the tests are done. Fingers crossed.
Helpful People
Yeserday I took the girls to the Library. Ellie has wanted to go for a while, so I took so proof of address, ID and went to get enroled. We got to the library at 12:30, it closes for lunch at 1. We didn’t take long working out what books we wanted to get, then we went off to sort out taking them out. There were two people behind the desk, and I could tell they weren’t overly happy to be booking in new people that close to lunch time. Anyway, one of them got on with it, and we got the books we found. I then wanted to ask if there was any chance that they either had or could get any of Ellie’s reading books. I was told , and I quote “Can you ask again after 2 ‘o’ clock please, we are now on lunch”. I take it they expected me to stand outside the front for an hour while they were closed, with two young children, just so I could re-enter at 2 and ask the same question again. I am considering making some kind of complaint actually. For a public service, they were extremely unhelpful and that just isn’t good enough.
08.19.07
School Uniform
Yesterday I took Ellie with a friend to see Scooby Doo live on stage. It was funny, very pantomime-ish and the girls enjoyed it which was the main thing. Ellie spent ages shouting “There’s a ghosty!”. I think when it comes to panto season this year, we may have to take her.
Anyway, as we were in town, we then went to the shops and found some bits of school unitform that she needs. When we got home, she put on the whole thing, polo shirt, pinafore dress, and cardigan. She looks so grown up. I wish we could keep them as kids for ever, but as a parent I suppose your job is to ensure they are able to go it alone. I now know what my parents meant when they told me “it’s hard to let your little girl go”.
08.17.07
You couldn’t make it up
My Mum has a foster child with her who has got into a bit of bother. Would you believe, the day this kid gets arrested is the same day I get called for Jury Service. I have requested to be excused my service because of Tabitha and the fact that no one else is able to look after her, especially not every day for 2 weeks. Bit of a shame actually, I’ve always fancied doing my bit for justice and was quite looking forward to the day I got called.
08.13.07
Slides
Tabitha has discovered slides today. We have put her on them in the past but not really let her go for it. It’s hard to do that when you can’t be 100% certain that she won’t fall over the side. Today I decided for the first time to let her go for it. It was the cutest thing I have seen in a long time. Tabitha sat at the top of the slide looking down, then she closed her eyes and shuffled herself forwards until she slipped down to the bottom, still with her eyes closed and giggling all the way. She was very eager to do it again and again, so we spent quite a lot of time on this past time today. Every time was the same. She loves sliding with her eyes closed I suppose. She certainly looks cute doing it.
Bargains
I went to the car boot sale yesterday. I used to go every week, but recently I’ve not had the money or the time and so I’ve not been for some time. Today though I managed to get a couple of bargains. Firstly, Chris and I drink a lot of sparkling water which costs 25p/bottle and causes us to creat a lot of pastic waste. Someone today wanted £1 for a working sodastream with 6 bottles. Lovely. Also, I have been thinking for some time I’d like to have a go at making my own pasta, but I wasn’t able to justify spending £25 on a pasta machine. I picked one up which has not been used for £3 (they wanted £5, but I beat them down!). Now I just need to get the motivation to make some!
08.10.07
Big steps forward
Ellie continues to astound me. After taking to reading like a duck to water (yes, she still remembers all the words she learned yesterday), today she swam with no aids for the first time. She just couldn’t do it to begin with, she kept going under the water and as a result she kept putting her feet down, and she was devastated when they told her she could have a Puffin badge yet again. She already has 3 of those. In the end, we managed, with lots of encouragement, to get her to do 5m swimming on her back, and so she got her 5m badge, the thing she has been wanting all week. She is one proud lady today.
