...MRI phone call...

.....The eagerly awaited phone call from The Royal London Hospital arrived around 1.30pm. It was confirmed that Maisie needed an MRI scan, and as Maisie needs to be put to sleep for it to be carried out, this could be done on 6th September 2011, We will need to be on the day stay unit for 7.30am & she is not allowed any food from midnight. Unfortunately its landed on the same day that Hailie starts back at school after the summer holidays! I did want to say it wasn't suitable because of Hailie, but at the same time I was too scared to refuse it & not know how long it would take to get another appointment, so I accepted it....

....We are hoping that they can tell us straight away what the MRI shows and means for Maisie's future...

Steph xxxx 

We've had a set back...26-07-2011

....Over the past week or so, Maisie has started to change. When she is walking with her push along walker her left leg seems to have turned out and her leg is further apart from the right leg than what it was the other week. Maisie has since started jumping followed by screaming while trying to fit her splint on a night time & is now also rubbing her back again like what she did before her open reduction in March...

...So, this morning we rang the surgeon's secretary and explained some of our concerns about Maisie. The secretary put me on hold & rang down to the surgeon, who told her to tell us to come to clinic and she will check Maisie over....

....When we got to the hospital we were seen really quickly, the surgeon listened as I explained the concerns we had with Maisie. The surgeon then watched Maisie walk holding my hands and was impressed. She then asked for Maisie's trousers to come off so she could examine her hip. She pulled, bent and stretched Maisie's left leg and said that for the length of time it has been since the operation and cast removal her hip is feeling good, however she was concerned about the things we had reported and asked us to take Maisie for an x-ray in two positions, 1 with the legs as straight as possible and the other with her legs abducted (knee's bent and open legs). Once the x-rays had been done we went back to the surgeons waiting area to be called back in. When we went in, she was busy checking Maisie's x-ray's. She said that Maisie's hip has not dislocated again and the socket has deepened even more, with an Acetabular Index of 27 now =) however, she could not interpret the x-ray and see what was going on, she also told us that she was really concerned that Maisie has taken so many good steps forward, to have gone back was a worry....

 

....I found this x-ray image from google. I wanted it so I can try and explain a bit better what Maisie's new problem might be...You can see where the ball at the top of the femur bone sits nicely in the socket on the left side of the hip x-ray, you can also see that it follows in line with the pubic bone, joining onto the other side of the hip (which yes is slightly out of socket, but irrelevant). As Maisie has left hip dysplasia its her right side that is running in line with her pubic bone, her left however although still in socket does not follow suit and run in line with the pubic bone. Our surgeon is wondering if the ball is sitting too far back in the socket and if her pubic bone is broken....

....Maisie's surgeon has a meeting tomorrow (27-07-2011) with the radiologists at The Royal London, and she is going to discuss with them if it would be better to do an M.R.I scan or inject her with the dye and do an examination, she needs to discuss which would give them all a better picture of what is going on with Maisie's hip. Either way Maisie will need to be put to sleep to have done as she needs to stay still. Which should only be a day stay at The Royal London. But, the anethasists waiting lists are massive, but she is wanting and will try to get Maisie seen ASAP. We have been told to carry on as normal with Maisie & to allow her to carry on as normal....

Steph xxxx

http://www.chiropractic-books.com/Hip-Dysplasia-Ortolani-Galeazzi.html

Getting on with talking.....

....Since having her operation, Maisie's speech has become fantastic, be it her age and a part of her growing and learning, or going from being able to walk to being immobile for the best part of the 3 months she was casted for, I'm impressed with her. As you can see in the video, these are some of Maisie's favourite words....

Steph xxxx

1st post Spica check up.....5th July 2011...

....It seems like a lifetime ago that Maisie was wearing her Hip Spica Cast, and the way it dominated hers and our lives in simple everyday activities. This has all now changed and we are focused on life without a Hip Spica. For now Maisie's Spica chair has been put away, we do plan on letting her use it again, when her leg is staying straight all the time, and we want to make the seat a bit softer.....

....Maisie saw her surgeon today, who is impressed with the standing and movement that Maisie has re-learnt herself to do in such a short space of time. She did all her checks on Maisie and gave us some light physio to do on Maisie during nappy changes - she did want it done at bath time too, but I told her we cannot keep Maisie still in the bath, she shuffles herself up and down the bath the whole time she is in it, which the surgeon was fine with. She now wants to see Maisie again in 4 weeks time. I also asked her about Maisie splint as it keeps getting loose and we did not know if it was right that it did that, but that Alan has been tightening it to keep it like it was when we first got it. Maisie's surgeon did not know anything about this, as it was the plaster technicians who deal with them and that we should give them a ring and speak to them about it as they can best advise...

....For the first week after Maisie's cast was removed she did very little if anything at all. It is now 2 weeks & 5 days since the cast was removed and Maisie is now able to walk pushing the push along walker, she has a huge limp, and she walks with her right foot flat on the floor, with the left only on her toes!! Things are finally starting to change for the better. I can dress Maisie so she looks like a "normal" baby again....

Steph xxxx

Thursday 16th June.......Cast removal day....

.....Today is the day that our 12 week wait has finally come around. Maisie's cast is being removed today, among the emotions of happiness are feelings of nervousness, anxious & terrified of the outcome. The appointment was not until 2.55pm, which made it a pretty long wait, with little to be able to do at home, we found ourselves pottering around, waiting to be taken to hospital. When we arrived there was a 45 minute delay as the surgeons were held up in theatre, but that was fine. We sat in the waiting area for around 5 minutes & then were called through by the plaster technicians. Maisie was asleep & had been for around 1/2 an hour, but we had to wake her up so they could start the process. I woke Maisie by lifting her out of the pushchair - which she wasn't too impressed with at all. The technician then explained that because of the vibration, she will cry, could hold her breath, turn blue and vomit. He said "to be prepared" I replied with "what to cry myself!"...

....There was two cast technicians in the room with us, the male marked Maisie's cast for where it needed to be cut as the female had never cut off a Hip Spica before & was unsure on where to cut. The female cut along the lines that had been drawn on, Maisie screamed at first then she settled into a gentle whimper every so often. The whole time I was holding Maisie's hands up and out of the way, constantly kissing her head, reassuring her that she was a "Good Girl", which she did repeat after me. Once they had got all the front of the cast cut the back needed to be cut as well, for this I held Maisie, so she was upright against me, I could feel the vibration through her body onto mine, but she stayed clinging onto me whilst the cast was being cut off, then he went on to use some scissor type things to prize the cast open & then some round ended scissors to cut through the bandage under the cast. The male technician then took her off me from under her arms and asked if I would remove her cast...which I did cautiously, I didn't want to hurt Maisie by taking it off, but he just reassured me that as long as I pull it apart before taking it of her legs she would be fine. I have to say the smell that came out of the cast was horrendous. Once the cast was fully away from her body I put her a nappy on "normally"....

....From there we were given a sheet of paper & told to go to the x-ray department. When we found it there was a little wait, but nothing too bad as far as waiting times go at hospitals. While we were waiting I took some closer photo's of Maisie's legs....

 .....This is Maisie's left leg, her skin is so hard and tender...

....This is Maisie's right leg, as it was only half casted there is only some slight irritation to the top part of her thigh...

....Eventually they called us for the x-ray, Maisie's nappy has to be completely removed for this, then once she was laid in a good position, a thick black board was placed in a drawer like thing under the bed and an ovary protector was placed over the pubic bone area to protect her ovaries. A second x-ray was required with a more straight leg approach, as we fiddled with her legs to straighten them we could not get them ideal, but the x-ray was taken, all the while Maisie was crying as she quite obviously did not want her legs to be like this. The man came back from checking the x-ray and said "it's not a perfect x-ray, but I'm not willing to put her under anymore stress" which I replied with "well, if they want another, they can arrange one for a later date at our local hospital!" He agreed, handed me the piece of paper back and told me to go back to Brian Roper Unit and wait to be called by the surgeon...

....We had to wait a while for our surgeon to call us through, but there was a few other patients there seeing her as well. She called us through, and asked how Maisie was etc. She then examined her & looked at her x-ray. She said that everything was looking good! Then she explained that Maisie would now go in to a Hip Abduction Splint for 3 months for bedtime only. I asked how to fit it, so we took it out of the packaging & I was allowed to "try it out" so that I knew how to use it, which it is pretty simple to do, however the cast technician said that if we needed any help with it, we can ring them and they will talk us through it over the phone. After he had left I asked the surgeon, what her personal opinion of what Maisie's outcome would be, she said that it was too early to tell, but she did show me the comparison of x-rays from the very 1st to this last one, she explained about the Accetabular Index and how its measured, Maisie's first x-ray showed an A.I of 50.2% - compared to this new x-ray which showed her A.I is now 32.6% the surgeon is very pleased with this result after just 12 weeks in the Spica, ideally her A.I should be no more than around 27% for her age. I also asked about the ball at the top of the Femur, this is still extremely small compared to her right (good) leg, the surgeon explained that this ball can do a few things, it might stay small, it might grow to size as the right, and sometimes they grow bigger. Each direction has its own path! The surgeon wants to review Maisie again in 3 weeks time, which is to be arranged....

.....Maisie of course had a bath when we got home. I put lots of bubbles in it for her, got everything prepared then stripped her and carried her through to the bathroom. As I started to place her lying down in the bath she started to cry, I got her in the bath but still holing onto her in comfort, Hailie was there too and she started to get hand fulls of the bubbles and put them onto Maisie's head, cheeks, nose, chin - this was making Maisie laugh a little, and it distracted her long enough for me to clean her body, as I was washing her hair she started to shake, which I did not like at all, so quickly finished off her hair then got her out of the bath and gave her a cuddle to cam her down....

....Maisie is now very fragile, she does not like her left leg to be touched at all. She tries to move about but it hurts her and she cries and sometimes screams. I can only describe this part of the journey as like having a top half 18 month old baby with a newborn baby for the bottom half.....

Steph xxxx

Gone......Where is it.....There it is...

.....We have had a few dates for the removal of the cast, first it was 23rd June, but that would mean the cast being on an extra week, so the surgeon wanted it changed to the week before, as of last week we had not heard a thing, and the time is coming very close. I rang & spoke to the surgeon last week, and she said the 17th June to have it off & she would get a letter sent out. That letter came today, 16th June 2.55pm is the appointment to have the cast removed, a splint fitting & any other examinations/tests etc that need to be done...

....It has felt like a lifetime that Maisie has been a casted baby, putting up with the funny looks in the street and the constant questions from strangers are almost over. I don't mind the questions.."aww whats happened to her leg" or something along the same lines, my easy reply is "she's had an operation" which most people have just taken that answer and left it at that, where a few others have asked for more information, which I have briefly provided "she was born with hip dysplasia". During the "casted time" Maisie has learnt to crawl with her cast on and has some amazing muscle strength in her upper body, Maisie has also taught herself how to stand with the cast on, she has fell over backwards a couple of times, but she does mostly remain strong and well balanced....

...We have a new game, which is very funny & can only be done when Maisie can access the part of the cast that covers over her belly, usually during nappy changes; Maisie will get her dummy or something else (anything that will fit) and she pushes it down her cast, breathing her stomach in to accommodate it, from there she will put both her hands out to each side and say "Gone" - with a shocked look on her face, then I have to say "where is it?"....a huge smile comes upon Maisie's face as she retrieves her object of choice and replies with "there it is!!".....

Steph xxxx

"Good Girl, Good Girl...."

....We have just under 4 weeks until Maisie will be freed from the cast, but she is growing stronger & stronger as the days go by....

....We were using Jelonet gauze on Maisie's wound and after about 5 days we noticed a rash that had formed on her left side, it was all over the wound, up through the cast to her chest. As is was a Tuesday when we noticed this I rang the surgeon as she was at our local hospital in clinic, I spoke to her secretary and explained what was happening, so she kindly went and spoke to the surgeon who said to stop using the Jelonet and go back to dry gauze. Unfortunately Maisie had an allergic reaction to the Jelonet - the 1 thing that would help her wound and she has a reaction to it! Oh well, lets just hope, we thought! Later on that day as I was changing Maisie's nappy, it was almost tea time, I pulled the dry gauze from her wound and there was the discharge & a few spots of blood there, Alan was straight on the phone to the GP surgery and we got an appointment within half an hour. Once we saw the doctor he had a good look at her wound. He did say it was only superficial but that he would prescribe some antibiotic cream to apply 3 times a day & to leave it uncovered. This is working a treat, I apply it with a glove on (so I don't pass any other germs to her wound from my finger), I can feel each time I apply the cream that its getting better, which is great. On the other hand however Maisie does not like her wound being touched at all, she will say in such a sweet innocent voice almost crying "good girl, good girl" to which I reply "yes, you are a good girl"!!!....

.....A slight adjustment has had to be made to Maisie's Spica chair too, where her legs are casted wider she does not fit in the seat properly - she slides forward, so what Alan did was, get a belt, (the material ones you buy on some jeans) and cut the belt fasteners off & has securely screwed it in the middle  underside of the seat to make a loop coming up the front of the seat, so when we put her in the chair we just thread the harness into it and this secures her comfortably on the seat!....A week later we had a follow up appointment with the surgeon, she is really pleased with Maisie & how she is adapting to life in her new cast. We did have concerns about Maisie trying to stand while she's casted, the surgeon was not too worried about this but did advise us to keep an eye on her when she's trying to pull herself up just in case she hurts herself. Apart from that, once the cast is off Maisie will go into a splint for bedtime only, which will put her in the position she is now to help the hip carry on growing, and will be reviewed in July to check her progress!....

....Apart from being unable to walk Maisie is getting around really fast and rather than sniping around the house she now uses her hands to walk (and drag her cast) like we would use our legs to walk is how Maisie uses her hands, the muscle in her arms is unreal, she is so strong. Maisie is constantly throwing herself from her back to her front, then onto her back again, she really is trying her hardest to do what she wants to do, nothing can stop her. With the new cast shape has come lots and lots of sleepless nights, maybe she's uncomfortable or just wants to know your their, but we have found that maneuvering the pillows in her cot and lying her a little flatter than before she is settling most nights now....

Steph xxxx