'Hope' Has Arrived.....

....The day after Maisie's 3rd Birthday, 28-11-2012, a parcel came with the postman. I had no clue what it was and Maisie assumed it was another Birthday present for her! So we sat together and opened it to see what was inside. It was our copy of Hope the Hip Hippo!...

....Hope the Hip Hippo is a story book for a child to read with their parents about the journey of having DDH, things that will happen and shows you with the help of Hope how things may change for a short while. It has fantastic explanation from the child's point of view!....

....Maisie loves her new book, she knows it is a book that MUST be kept safe and well looked after, because it's important. We have to thank Gina and Julie on writing this book for ours and anyone else's children who are affected by DDH. It adds an additional speciality that the book has a dedication section and little Maisie Moo or Maisie-Bug (as Gina calls her)'s name is amongst them! =)....

....This book is available to buy direct from the publisher or from Amazon. There is a Hope the Hip Hippo picture, clicking this link will take you direct to where to buy from Amazon. Money goes to the International Hip Dysplasia Institute to assist with research to try and find a better way of treating DDH than the way they have been doing for years and years...

Steph xxxx

Just beautiful....

....This beautiful piece was posted on the Hip Dysplacia facebook page by one of our mum's, it's lovely join us here: http://www.facebook.com/groups/Hiptoddlers/?fref=ts ....

FOR YOU PARENTS!!
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualise God hovering over earth selecting his inst

ruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realise it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Steph xxxx

Physiotherapy, Hydrotherapy & another check up

....So much has happened since I last posted. Following on from Maisie's last check up, we started Physiotherapy, this consisted of some exercises for us to do on Maisie every day to strengthen her muscles and improve blood flow. Simple exercises were quite hard to do with Maisie as she refused to allow her leg in the positions needed to do the physio! Unfortunately I cannot upload the physio sheets we were given, but if you would like a copy of them please leave your email address in the comments & I will email them over! We were also advised by the physio to buy Maisie a space hopper/exercise ball to assist with the stretching of her legs, this too was no good as she would not open her legs or allow you to open her legs. Even though the physiotherapist could do it to her!....

....Our physio referred Maisie to hydrotherapy, Maisie absolutely loved this, 6 half an hour sessions, this was brilliant and Maisie loved going every week. It did take a little longer than 6 weeks because the heating system for the pool was broken for two weeks. The staff in the hydro team were impressed with how well Maisie did from her first session where she would hardly move at all, to practically swimming on her own and doing most of what was asked of her. All this was great for Maisie, even if she did pull the emergency cord while I was getting her dressed at one of the sessions....

....We saw the physiotherapist after all of Maisie's hydro sessions were finished, Maisie's angle improved 10 degrees, which is great and matches the good leg. Although we were told this anticipation was still in my mind over what the xrays would show on 25th September....

....Maisie's appointment at Royal London, upon arrival Maisie was sent for two xrays, one with her legs straight and the other with her legs almost in the Spica position but ankles together, as always Maisie was great having her xrays done. Once they were done it was back up to clinic to wait to be called by the registrar - they were on a very nice 50 minute delay! Eventually we were seen, however nothing has changed compared to her last xray before the physio and hydro. It is fantastic that nothing has changed by means of getting worse, but the problem is that nothing has got better either! The registrar advised us to stretch Maisie's legs at least twice a day in sets of two for 10 seconds minimum each time, regardless of how much she resists - easier said than done when your not trained to do so! Also we are now going onto consultant lead appointments, which will mean that we will only see Maisie's consultant and not the registrar - which is great for me, I prefer it that way! There is a little muscle what I would describe as being behind the groin, this little muscle needs to be stretched, if left alone or does not get stretched then over time it will push Maisie's femur head out of the hip socket. Lots of exercise or as much as Maisie can handle. We go back in February 2013 for more xrays and a check up to see how things are going, the AVN cannot be left to develop any more. For now Maisie is enjoying life and we are trying to be as "normal" a family as possible, taking away every time she falls we panic and check her over and over, every time she cries for what seems no reason is questioned, our panic over her running or walking too fast, we do pretty well at being a normal family....

Steph xxxx

A Check up 8th April 2012

....As always it's a stressful day, making sure we have everything to take with us. The trip itself into London is only a half hour drive, but still, it's a pain! This time was made worse because RLH now has a whole new hospital, located next to the old building, but for a first time, not knowing how to get into it etc made things worse...

....When we arrived at the hospital, spoke to an ambulance near by to ask how to get into the building, we found a very nice clean building, but without the knowledge of which lift to go for as each lift takes you to different parts of the hospital, after about 20 minutes of not knowing how to use the lift and Alan going and asking different members of staff we eventually found we needed, lift core 9 - that would take us to outpatients on the 7th floor. Knowing what lift we needed was great, it was then operating the lift, if you step inside the only buttons are emergency buttons and open/close door buttons, we stood looking and not knowing how to operate the lift. Luckily a staff member came and asked where we wanted to be, she must have seen the confusion a mile off! Anyway, there is a little box outside of the lift with numbers on, you press what number floor you want then wait until it tells you which of the two lifts we should get into. Very confusing, but now we know...

...The reception staff we great and fully understood why we were a little late. Plus the fact clinic was running late by an hour and a half! We were given the xray form as usual and sent on our way to hunt out where children's xray was, luckily it was only on the next floor or so. We were down there for around half an hour, Maisie cooperated really well and allowed them to xray her hips without a fuss. We easily found our way back to the clinic waiting room and literally just waited, a member of staff told us that there was 5 people to be called before us, so Alan nipped out to make a call, then when he got back I nipped out to go and get us all something to eat...

...Time passed quite quickly until we were called, just as Alan was getting a cuppa from the machine. We followed the registrar to his room, spoke a little about how Maisie has been since she was last seen by them in January. We explained that we had her xrayed in February because she was constantly complaining her left side was sore and the result of that was that her hip is laterally subluxed, but that Mr Paterson was aware of it and he was fine to leave it and wait until this appointment. The registrar watched Maisie walk up and down his office, then she was put on the bed with her trousers off while he examined her legs. After a few minutes he said that he was going to get someone else to come and have a look, while he was gone Alan noticed that he had left his computer screen open with two of Maisie's xrays visible, December and January's xrays, so me being me, took a quick picture on my phone;

 

...This xray really shows how different her hips actually are. The registrar returned with Ms Maizen, Maisie's original surgeon. She watched Maisie walking and examined her on the bed. After some careful examinations and trying to force Maisie's leg to tilt to the side while in the abducted position, she said that she wants Maisie to have some physiotherapy to try and ease off this restricted movement of her left hip. Also because of the restricted movement in her hip her AVN has become worse and rather than her ball being mostly bone, what's there of her ball is mostly cartilage, which if it was left would cause the ball to become deformed which is something we don't want to happen. We are scheduled to go back to RLH at the end of September for more xrays. Fingers crossed the physio works...

Steph xxxx

5 weeks - post Spica removal check-up

....I'm struggling to realise that it has been 5 weeks since Maisie had her Spica removed!....

....Maisie has been continuing to grow & learn, her walking has become fantastic, her left foot is now flat to the floor the majority of the time. Running is a bit of an obstacle. But, over the last 5 weeks, day by day Maisie has been maturing into an intelligent two year old, with regular tantrums! ....

....Tuesday 10th January, Maisie had a 5 week check-up! Maisie was so good while she had her x-ray, we sang twinkle twinkle little star together. When we arrived back to the clinic, Maisie found herself a friend, in the form of a teenage girl who was sitting in the waiting room. Maisie had her new "friend" reading stories to her, with a new book every few minutes. Clinic was running about 45 minutes late, but we were seen at around 10.45am. This time we saw the surgeons registrar, who said that Maisie's hip remains in a good position, AVN has not got any worse. I asked if Maisie was allowed to start dancing, the registrar told us that, she would probably not be able to perform at the Royal Ballet, but some basic dancing if Maisie enjoys doing it would not hurt her. So hopefully sometime in the next few months, we will allow her to go dancing. Our next appointment at RLH will be in May 2012, where we will be in the new hospital that they have built, 7th floor, I am slightly dreading the gravity buzz that we might feel, but I cannot wait to see inside the new hospital, the pictures on the Internet & Twitter are amazing....

Steph xxxx

A crazy final 6 weeks, plus a cast removal....

....This past 6 weeks has seemed like it was forever. Although the days, nights & weeks have flown by, looking back it seems like such a long time ago that Maisie had her cast changed! There was problems getting her appointment for her "cast removal" which was then changed to a "cast change" we ended up with two appointments - 6th December in clinic & 8th December on the day unit! We only found out on the 5th December which appointment we had to go to, which was the 6th in clinic!...

....Due to our surgeon leaving there was a lot of problems in sorting Maisie an appointment for anything to happen, resulting in lots of phone calls between us and RLH....

....We were a little early for the clinic appointment, but even though they wern't open, they still let us wait inside because it was freezing, plus we were only 5 minutes before they opened! We saw Maisie's new surgeon - Mr Paterson - he told us that he wanted an x-ray done of Maisie's hip before he could confirm it was being taken off, he wanted to be sure the hip looked good enough to have the cast removed. We were back from x-ray within 30 minutes and only waited a few more minutes before the surgeon came out and said "casts coming off". We had to wait a little while for the plaster technician to come. At first Maisie started crying while he was sawing her cast off, but that soon turned to laughter and her thinking it was tickling her! Once off, Maisie's legs were not in too bad a condition, obviously there was a lot of dry skin, but none of the black hairs like there was last time. We cleaned her up a little & put her nappy on properly and went back to the waiting room to wait to be called by Mr Paterson. We only waited around 5 minutes, at this point Maisie only had her vest on because we didn't see the point in putting her clothes on to have to undress her for the surgeon to check her over. Mr Paterson said that her hip is looking really good, is in a good position, he did some movement checks on her leg and said that the movement is as good as can be expected. There has been some restricted blood flow to her hip bones, but he is not concerned about this and said that it should sort itself out over time, we asked how long it would take, which he said would be months rather than weeks, but he is not concerned about it and will just keep an eye on it at check ups. Also this time Maisie doesn't have to wear the hip abduction splint or any other type of splint/brace, he thinks her hip will do fine without the use of one. We go back in 5 weeks for a repeat x-ray to check that eveything is still doing ok and growing as it should be, he also said that where her hip was subluxed before her 2nd operation there is still some wear on her ball, but that over time it should go back to how its supposed to be!....

....48 hours post cast removal and Maisie started walking with the aid of her dolls pushchair and push along walker, she is growing stronger and stronger as the days are passing, we are all so glad that Maisie is out of her cast in time for Christmas! Now we just have to hope that her hip stays in place and that will be the end of her operations, here's hoping 2012 will be a better year for us all, it has been such a whirlwind year....

Steph xxxx

Cast Change....27th October 2011

....Getting up at 4am is a little too early, but we have to be dressed for 5am for the Ambulance Transport to arrive to take us to The Royal London Hospital for Maisie's cast change. We woke Maisie at 5.45am so that she could have a drink of juice before her 6am cut off...

...The ambulance arrived at 6am. We arrived at the hospital at 7am, I was really surprise how busy the roads were into London that early in a morning. Arriving at 7am meant that we were half an hour early, as the ward didn't open until 7.30am. Once the ward was open we were shown to Maisie's bed where she loved playing with the buttons on the side & moving the bed up & down! The registrar came to see us & told us that she would be replacing Maisie's cast and x-raying her to check the position of the hip. Also if the hip seemed unstable she would try and do a closed reduction, but if she couldn't get it in or it seemed very unstable that she would just re-cast her and have our consultant ring us with an appointment to discuss further treatment as she would not open Maisie up without talking to him first. The registrar also informed us that Maisie was 3rd on the list. Next to see us was the anesthetist, talked through the same old stuff about how she will go to sleep, what they will do once Maisie is asleep etc. We have heard it that many times! Then the nurse came around to get her part of the paperwork out of the way...

...Maisie was eventually called to theatre at 11.45am, she was hungry, thirsty and very grumpy by this time. It doesn't take very long for Maisie to fall asleep with the gas now, yes she screams, but that is better because she takes deeper breaths in, with the mask over her face she gets more of the gas & goes to sleep after only 2 or 3 big deep breaths. Once that was over with, me & Alan went for something to eat, even though we didn't enjoy it. Just as we got back on the ward at 12.50pm, theatre rang to say Maisie was ready to be collected. We were back on the ward for around 1pm, Maisie was lying on Alan's chest on the bed & I was sat in the plastic chair, we all fell asleep until 2pm. At this time the registrar came to see us & told us that Maisie's hips looked very stable, though very stiff, which is to be expected, her wound has healed nicely. We had noticed some rough parts on Maisie's cast that were touching her skin, the registrar rang the cast technician to ask him to come and check over Maisie's cast. Maisie will next be seen in clinic in 6 weeks time to have the cast removed and x-rays taken, if the hip has dislocated in this time we will discuss further treatment, same for if it dislocates again after the cast has come off, we will discuss where to go next. When he came he cut some of Maisie's cast at the front and put some fleecy type stuff over the top of all the rough edges....

...That was it, we had seen everyone we needed to see, all that's left is for Maisie to eat something and keep it down so we can be discharged home. Maisie ate a slice of toast, half a sandwich & 3 bourbon's, we were definitely allowed to go home...

....It was 4 days ago that Maisie was put to sleep for the 5th time this year & you wouldn't think there was anything wrong with her to watch her play, find new ways to play. It's wonderful to be able to watch her grow and cope with her Hip Spica...

Steph xxxx