Friday, 10 February 2017

New Hospital...Bad News

We have moved house!! Exciting times! With the new house brings a new hospital! We had a choice of which hospital we wanted to go to, so naturally we chose the one of the best! Appointment was on time, which is rare but welcome! Maisie went for her X-Ray and we only waited a few minutes before being called to the Dr's room. Usual examination, the registrar got Maisie's new xray up on the screen. We saw straight away it wasn't good. It looks terrible from the one she had in May 2016 - only 8 months ago! The registrar went and spoke to the consultant after taking a photo of her last xray from my phone, they don't have Maisie's notes from RLH yet. They both came back in, the consultant examined Maisie and he has advised us that Maisie is to undergo an arthriogram & CT under General Anesthetic to determine what procedures need to be done to help her. The AVN is still very much present and she's also developed Functional Arthritis, meaning that he aches more towards the end if the day after being active. This could easily turn into Juvenile Arthritis if not helped. So we wait.....

Stephy xxxx

Saturday, 15 March 2014

12th March 2014 - 6 month check up

The day has come around again where we had to take Maisie to The Royal London Hospital for xrays and a check up! Maisie had specifically asked if we could go via train. So we did. Maisie loved the train, wasn't so keen on the tube. It was a lovely sunny day. Being already stressed, the train was late, we got the wrong tube by accident. Tried phoning the clinic from the tube to no avail. I was getting more and more stressed. We ended up being around half hour late for out appointment. As we approached the reception desk in clinic 3, the regular receptionist stated to another staff member "see, I told you they'd be here" - she knows we travel from outer London. We were once again given a sheet to take Maisie down for her xrays. I took Maisie down to xray while Alan went for some sandwiches for us all. As normal Maisie was very well behaved during her xray, laying perfectly still whilst the big camera takes a photo of her hips in two different positions. We went back up to clinic 3 to wait to meet Alan and wait to be called. We saw one of Miss Maizen's registrars. He confirmed straight away that Maisie's hip is looking really good, he also did the usual physical exam. We told him that our local physiotherapists had provided Maisie with a 1cm instep just over a month ago to be inserted into all her footwear. He commented that her walking was good with the instep in and her range of movement was good too. They still want to see Maisie again in 6 months, he explained that anything can change while she grows so the checks need to stay at 6 monthly. The difference since August 2013 is amazing.

Steph xxxx

Friday, 23 August 2013

21st August 2013 - 6 month check-up

It was supposed to be 19th August, but apparently clinic days were changed. Of course the patient gets minimal notice of this change of appointment, no thought that we have plans, the kids have plans. We had to arrange someone to look after Hailie and Alan had to change a very important appointment at the last minute. We took the usual journey to The Royal London Hospital in Whitechapel, being an appointment at 10.20am means even though we are only a half hour drive from London, we still needed to allow for catching the back end of rush hour. We were pretty early, so went to the shop first, whilst we were standing outside, reducing the stress levels I said to Alan that in a way, it feels like our second home. This is saddening. We still had 10-15 minutes before Maisie's appointment, we decided to go up early, because she needed xrays first, logically thinking, if we get things sorted early, we have a chance of being seen quicker! When we got to clinic 3 and approached the desk, the receptionist recognized us and knew it was Maisie she needed to look for. This upset me a little inside, as it shows how many times we've been here. The lovely receptionist gave us the form for xray and sent us down for that. It looked quite busy in the waiting room, I think it was about 20 mins in total. Maisie as usual was good as gold having her xrays, doing as she's told and laying still on the bed. Once back up at clinic 3 Maisie went off to play with the toys they provide, I had to stand as there wasn't a seat, Alan had gone for more stress relief! I was standing for around 10 mins then a seat came available, we went to sit, literally sat for 30 seconds then the registrar called us. I have learnt that we only see the surgeon when things don't look very good, but still have some worry as they could call her in at any time. He sat us down asked how she is in daily life, pain etc. The registrar was silent while he loaded up Maisie's xrays and checked them over. He turned and told us that there is improvement on the femur! Yayy happy dance! We have bone growth, the left femur looks more like it should. He did say that the hip has a long way to go before they are happy with it and it can still dislocate at any time, we are not out of the woods completely, but we are getting there slowly and that is the main thing. After discussing the xrays, we asked about the instep that was requested last time - we still haven't received the appointment for this. He watched Maisie walking, went off and spoke with the physio and brought her into the room to discuss this with us. They measured her leg length and although there is still a slight discrepancy they both recommended that an instep being fitted now could cause more problems, plus so far she's done ok without it. We go back in 6 months for another check-up. For now, check out the xray!! The single hip is the left. The double is Maisie's left hip from February 2013 on the left and the new xray on the right. You don't need a degree to see the improvement!!

Steph xxxx

Monday, 4 February 2013

Another check-up

Today we had another check up at RLH. I had already told Maisie about this visit on Friday. Because she is now 3 and is capable of understanding things, I thought it would be best to tell her. We discussed that they were going to take pictures of the tops of her legs and have a feel to check they are getting better. Maisie seemed to understand. She asked questions over the weekend - which is what I wanted her to do! All was fine Sunday day time. Our eldest daughter Hailie was staying with Nanna to make things easier in the morning and so she didn't have to get up earlier with us.

The alarm was set for 6.30am. We had to get to London for 9.40am. Whilst getting ready, Maisie claimed her ear was hurting, she honestly convinced me & Alan her ear was sore, so we gave her some calpol. Most of the way there she claimed she felt sick and thought she was going to be sick, to the point she was gagging.

From arriving, we were, as always sent to the xray department. This time was slightly different from the last. This time she was able to keep her knickers on, before she was in nappy's so they had to be removed. I also was taken behind the screen. This alone makes Maisie so brave, laying there nice & still while they take each of the two xrays needed.

Waiting to be seen back in outpatients wasn't too long a wait, which was good. While in the waiting room I noticed a sign with Mr Paterson's name on, it said that in December 2012 he retired. Maisie is now back under the care of her original surgeon Ms Maizen.

Upon being called through, we firstly looked at Maisie's xrays, which are the best we've seen them! Although there is still a lot of growth needed, her femur head is now shaping to look somewhat like her good right hip. There is a noticeable hip socket height difference, that's just something she will have to live with. We explained our concerns over her recent rapid increase of pain, her refusing to walk short distances, and told how she now goes to nursery and dancing, generally more active. Maisie being more active coupled with growing and the below freezing temperatures are the probable causes for any pain and/or discomfort that she has felt. We then watched Maisie walk, first with her shoes on, then without shoes, socks or trousers. All other necessary checks were made on the bed and we're all fine. While Maisie was on the bed, I explained that while I was examining Maisie at home I noticed what felt like extra bone along side her hip socket, only a slight feel was needed before she explained, it is where they had to cut to do her open reduction, which was performed twice. The bone should have stuck itself back together, but Maisie's hasn't so has been left with a dip. As she grows and gets more weight around her hips it will become less noticeable and is just a deformity that she will have to live with. Maisie's leg lengths were measured too, there is still a discrepancy somewhere between 1/2 - 1cm for this to aid Maisie and relieve some of the pressure on Maisie's hip, we have been referred to Mile End Hospital, Whitechapel to have Maisie fitted with shoe inserts. We will go back to RLH in 6 months, more xrays and to see how the instep is going.

Steph xxxx

Thursday, 29 November 2012

'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

Wednesday, 17 October 2012

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: ....

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