3rd March 2011....day 2

....Work is going well on Maisie's Spica Chair, changed the design slightly, but it should look really really nice, Alan & Dean are doing such a good job on it for her, they've measured and cut all the wood now, so its all as it should be and the right sizes etc, and some of the support beams have been glued on to the sides, so they are now being left overnight to dry properly then its full steam ahead tomorrow to get more done, I must say though when Alan called me through to see what they have done so far, I got a lump in my throat, and welled up a little. But it is looking more than just some planks of wood now, and it starting to form the look of a chair!!! On a good note, Maisie has had a good day today, it is starting to look like her limp is getting worse, but not long now until her op....

Steph xxxx

2nd March 2011...

...Alan and our friend Dean started building the Spica Chair for Maisie today. It took them a while to figure out the measurements on the wood, but once they figured it out, things moved rather quickly, i must say! Although Dean told me they were actually building a boat haha! I asked Alan how long he thinks it will take them to get all the wood cut etc, Alan recons another few days for cutting & sanding to be done, then all it will need it to have primer painted on, then the base colour, then the design added on top....It's all getting to be real, the Chair is in process, and it's not going to be long before it's finished, i cant wait, but it really upset me once the curve at the bottom had been made, it's quite sad to think of Maisie in it with her cast on, but at the same time it will be such a useful piece of furniture for her! I do have huge thanks to Trent for the instructions, and to Dean for agreeing to help Alan to build it for Maisie....

 

Steph xxxx 

...and the countdown begins.....

...Well well well, it's now 1st March 2011, and this is our "big" countdown, 22 sleeps until we go to the Hospital, and 23 sleeps until my little Maisie Moo Moo goes in for her operation...not too sure how I'm feeling about it all, kinda worried that it's all going to come crashing down around me and I wont know where I am or what I'm doing, don't really want to get like that....sleep is a bit of an issue for myself, I've not been able to get to sleep until early hours, which is not good when looking after an 8 year old and a 15 month old. I have a huge urge to plan plan plan, which after asking some others who have been through this, have assured me that the way I feel and the things I'm doing are normal and that its part of the process....ladies from the Baby Centre also advised me to write down things that I think Maisie will need as I think of them to ease on the stress of remembering everything, that way I can review it too, so I have bought a small notebook to write my lists in!! I suppose in a way I don't want any unnecessary stress of not having what we need etc, best to plan ahead ay?! Alan and Dean are starting to make Maisie's Spica Chair this week, so it should be fun, I am extremely excited about it, handmade means so much more, plus looks better and can be however you want it to be, I have my design all planned out, but its a secret, I'm not telling anybody what its going to look like, just the base/main all-over colour will be candy cane!!! I will be taking pictures too of the progress, but once the main colour is on, no more piccys of the design will be going up until its completed! I am dreading Maisie in this cast, she loves her freedom so much, it seems cruel to take it all away from her...go on say it...."its for the best".....maybe so, but its plainly not fair! Anyway i am planning an early night tonight, I really do need the sleep, 3am last night, 4.30am the night before, 2am the night before that....so yes I think I'm going to bed after my programs tonight, or at least try and get an early night.....ugh.....I'm starting to loose patience with facebook too..or possibly the lack of energy to be bothered to do it anymore....I hate feeling like this, but I don't feel depressed, which is a plus, I think my mind is just exhausted, constantly thinking and wondering from the second I wake up until the minute I drop to sleep, things just whizz around in my head!!!!.....

Steph xxxx

23rd February 2011......

...We have been getting prepared for Maisie to have her operation, accommodation is sorted for as long as we need while my Maisie Moo Moo is in hospital..great, that's a huge weight off, plus it wont cost us anything as the Children's Trust have a scheme going where they have big houses to accommodate family's around the UK (each house can accommodate different amounts around the country), but we have it booked, which is brilliant as it means that we don't have to find £400 to stay in London for what could be 5 days could be less could even be more...and i would not like the "on the night price" for a travelodge, not in London! My mum as bought a huge thick blow up chair, with a pink throw to put over it to make it comfy for Maisie after her op! i have also bought some size 1 nappies, invested in "on offer" nappy cream and a few other things in the past week...today we bought the wood that's needed to build Maisie a Spica Chair ;-) all thanks to a new friend that i have made on a Hip-Dysplaisa forum, who has very kindly gave us the instructions on how to build the Spica Chair....we are so grateful for him just taking the time to send it to me so i can understand it, no doubt i have done his head in, as i have asked many questions, but he has answered them all, which is appreciated, i am so thankful to him, and i don't doubt he understands the feelings of having a child with Hip Dysplasia awaiting an operation to correct it.....Alan and a good friend are going to build the Spica Chair together, which is great, i cannot wait until it is finished, still deciding on a design though, not sure what to choose, although i do have a base colour ;-) this is a good start....when i can get hold of the paint that is...need to do some hunting around for the right paint that we need.....

Steph xxxx

18th February 2011.....

...O.M.G.. I rang the secretary's office today to try and find out if there had been any improvements on info about a date...there was no answer so I listened to the recorded message, in it it says that if i ring back the switchboard, and ask to be put through to an orthopaedic surgeons secretary they can try and help...so i did that, spoke to a different secretary, and i explained what i was trying to find out, unfortunately she cannot help with other surgeons appointments, but did say that if i rang the operation waiting list that they might be able to help, anyway, i spoke to a lovely lady who deals with the operation waiting lists, and i explained the situation and asked if she could help, so she took Maisie's full name, d.o.b & address.....as i waited for her to get the information up on her screen it was slightly nerve wracking.....but i patiently waited for what seemed like forever, but am sure it was only a matter of seconds....for her to turn around and say......"YES THERE'S A DATE FOR HER HERE, you will receive a letter in the post!".....my response was..."really?? oh that's great"...all said with a very very shaky voice, heart pounding faster than anything, legs readily jellied and ready to just flop on me....i don't think I've ever experienced a feeling like it.....it's made this whole ordeal properly real...i was nearly in tears, and told her that, explaining that i really don't want to have her put to sleep and operated on but i know that she has to have it done...i asked her if she could tell me what the date was...and told me that it was 24th March 2011.....wow that's not far away, that's not long at all.....need to get some propper preparation started, and ring the really important ones, and let others know.....

Steph xxxx

The Waiting Game......

....Well, after the outpatients appointment we just had to wait for them to contact. After talking with two family members who work with the NHS, we were told by both of them not to just leave them to get in contact with us, as this would not get anything done anytime soon, so me and Alan both agreed that we would ring the surgeons secretary once a week to find out if anything has come to light about dates etc,. We rang the hospital on 20th January 2011, and were informed that the surgeon was off for a week and that she would be back 1st February 2011....so we just had to wait until then to see what was going on.

We then rang the surgeon's Secretary on 2nd February 2011 to find out what's moved forward with regards to a date...were told that our surgeon was talking to another surgeon (who i guess was a higher surgeon than she is) to arrange an operation date, and because she has already seen Maisie at out local hospital there was no need to have an unnecessary outpatients appointment with her at the Royal London....try again next week it is then....

We have started to notice that Maisie's right leg (the good one) is now starting to give way or buckle under her when she's walking..could this be too much muscle pressure with all her weight....or is this leg dislocating as well...as worrying as it is, we had to have it checked out, and although we don't want Maisie to have another x-ray, we knew that we had to be sure before she went in for her surgery....the doctor reluctantly let us have another x-ray and did warn us that the radiographer might say no to having it done so soon after her last one, GP also would write to the surgeon and tell her our concerns about Maisie's deteriorating and worrying state....

...So, the next day 9th February 2011 we took Maisie for her x-ray, and they did let her have it, when they told us to ring our GP in a weeks time, we expressed our concerns and explained Maisie's condition, so they found a Consultant to check the x-ray over for us...which was really nice of them to do that...luckily it came back that her right leg looks normal..which is fantastic!!!! We also spoke to the secetary again today, and were told that our surgeon has left a message for the other surgeon to arrange an operation date and that they would contact us as soon as they have a date for Maisie!!!....

 

Steph xxxx

11th January 2011.....Outpatiens Appointment

...Today is the day that we meet the surgeon who is going to be performing Maisie's operation, 10am! The Surgeon was running around 20 Min's late, but that's not too bad for a surgeon. When we went into the room, Maisie's x-ray was up on the computer, and she explained to us that Maisie will need "open surgery" in an attempt to fix the hip dysplasia!....deep breath.....took that one rather well....the surgeon then checked Maisie's hips, like the same test that's done at birth and at their 6-8 week checks, she told us that she could feel where the left leg didn't move as much as the right leg, and that she could feel some muscle tightness in Maisie's groin area. We asked her if she had any idea on how long Maisie will be in hospital for, the surgeon said it is usually around 3-5 days, but did stress that it all depends on the patient as every patient is different! then we will need to go back after the cast has been on for 6 weeks to have it changed, and while there changing the cast they will also x-ray her hips to see how its getting along. We have been advised from the surgeon that should there be no bone growth Maisie will need a 2nd operation, most probably before her 2nd Birthday. The surgeon also explained that we must not give Maisie calpol to help the aches/pains that she gets as hiding the pain with painkillers will result in Maisie not feeling the pain, doing more, causing more damage, but we are just to let her walk around as she wants too, because Maisie will stop once it aches or if she gets any pain. Maisie is being referred to The Royal London hospital for her operation. Link at the bottom of the post. We were then told to wait for a phone call for a date for Maisie's surgery, but that we would be looking at around April, which we think is too long for such a small child to wait, but we could get a cancellation appointment, so this left us with a waiting game....

Steph xxxx

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