Bella's Operation

(We felt this is such an important opportunity for Bella to have the operation as soon as possible to give her the best chance of walking independently that we are borrowing the remainder of the money and will continue with the fund raising on our return).  Bella's operation is booked for 29th April 2010.

Our trip to USA

26th April 2010 

10.45am All arrived safely last night.  Very tired and meeting Dr Park and his team at 12 midday!  Our apartment is within walking distance of the hospital so is very convenient especially during the first few days following surgery when we will spend alot of time there.

6.15pm. Have now met Dr Park who is very nice and he is confident that Bella will be independently walking within a year following surgery with the help of lots of physio.  We will be returning to the hospital on weds morning at 7.30am for her pre op. Still all very tired!  Will post more info and some pictures later in the week.

29th April 2010- Op Day

05.45am Arrived at Hospital. Her surgery took place between 8.50am and 10.50am approx. Dr Park came to see us just before 11am to say all went well with her operation and she was doing fine.

She has been given lots of medication for the pain and also to help her sleep.  Whenever she wakes she is getting upset as it's all strange for her and some discomfort is to be expected.

Have briefly check her legs and the right ankle seems to be less tight so we are hopeful that it has been a success for her.  She has stayed overnight in the Intensive Care Unit so it's been a long night. 

30th April 2010 - 1 day post op

This morning she is still sleeping alot but is still doing well so will be able to go to a ward later in the day. She has asked for her twin brother who is sitting on the end of her bed so this is a good sign she is ok.  Dr Park came to see Bella and is happy with her recovery.

1st May 2010- 2 days post op

Last night there was a really bad storm and Tornado warnings up til 3am in the city which was a bit scarey. Luckily it never reached the city. This morning Bella is still doing well. She has eaten for the first time since weds night and is more alert. The staff at St Louis Children's Hospital are all really taking care of us.  Bella's Mum and Dad are with Bella all the time and take turns staying with her at night sleeping in a pull out chair. She got very upset when she heard her brother was going to the sibing playroom as she wants to go too but is not well enough to get up yet.

Below are pictures of Bella's surgery cut on her spine.  (The other lower mark on her back is just a pen mark). They don't stitch the wound up but use some kind of special glue. Some bone is removed during surgery but this will grow back with time.

 2nd May 2010 -3 days post op

Bella had physio at her bedside at 9am today which was really just to show us how to sit her up and put her in her buggy safely with minimum discomfort for her. She was awake most of the day and we took her down to the therapy room for physio at 1pm for an hour. She was very tired before starting so it was very hard for her. Even things like holding her head up is hard at the moment. They are concentrating on improving her upper body strength first which should come quite quickly.

She cried alot but did manage to enjoy playing catch and throwing frogs at a target!

3rd May 2010 - 4 days post op  

It's been a busy day for Bella as she had two lots of physio each lasting an hour. Lots of hands on learning how to do some of her stretches she has to have daily, lots of crying, but getting stronger. We have been given leg splints for night time use. (or immobilisers as they are called here). Sure she will still find a way of getting out of bed in the night!

Too much helping to actually video or take pictures today. She walked across the room with the help of two of us holding her. Mum holding her hands whilst the physio supported her bottom when she got weak. Its the start of getting her legs stronger.
She should be discharged from hospital tomorrow morning after her first physio.  That will be a relief for the whole family.

4th May 2010 - 5 days post op 

Bella had physio today at 8.30am, she did very well and managed to do sit to stand, and walking with the aid of just one person. She even got to ride a bike and did some pedalling herself.(pictured below and sitting on a chair on a swing). To see Bella ride her bike please click on link below:

 http://www.youtube.com/watch?v=uV0qU_dQXv8

Later this morning she was discharged from hospital and was able to return to the apartment. She still has to go daily to the hospital for physio as an outpatient for the next few weeks.  She has been given some tylenol to take home for any pain and also valium to help with any muscle spasms which is usually given at night.  She discovered tonight that she can crawl without too much discomfort and has learnt to come up and down on her side to not hurt her back. (As in from lying to sitting with help and lying down from crawling) She needs alot of support to get around and has to be carried much more than usual.

6th May - 7 days post op

Today Bella got to go on the treadmill in physio. She is struggling to put her right foot down flat but can nearly do so when she tries. (hoping second op will help with this). It is early days so still alot of potential for stretching and improving her hamstring muscles.

 She has 2 physiotherapists and today she saw Michael who is great and lots of fun. He let both Bella & Ben ride bikes at the end of the session and took them in the lift to another floor and they basically rode around one level of the hospital. Only nearly ran over one security guard!

7th May 2010- Day 8 post op - 

Bella went on the treadmill at physio and did lots of standing activities trying to get her legs strong again. She also did a bench press using her legs. Still concerned about her right leg being stiff and the foot not coming flat but will discuss this with the consultant on 12th May re her muscle lengthening surgery on that leg.

We are doing her stretches 2-3 times a day and she is tolerating her night time leg splints very well.

 10th May - Day 11 post op

Bella is getting stronger and she can get up to sit onto the sofa by herself. It's the 1st day she has shown an interest in using her walker. We started slowly encouraging her to do short distances with it and she has got her confidence back.  She even insisted on using it to go into physio. She got her new walking tripods/canes but unfortunately they had been ordered too small so will have to wait til next week now. She tried some they already had in physio and got very frustrated with them so they will be a learning curve for her!

Below pictures of Bella doing some high kneeling at home whilst drawing to strengthen her hips and her first attempt with the physio's walking canes.

 13th May 2010 2 wks post op

Bella is doing well - she can just about walk with me holding her left hand. We saw Dr Dobbs yesterday re the muscle lengthening surgery on her right leg next thursday 20th May.The appt was 8.10am but was running nearly an hour late so we saw him for 5 mins as Bella was then late for physio. He will be doing muscle lengthening on the right hamstring and calf and doing lesser work on her left leg too. Day surgery will call us on weds to let us know what time to be in surgery again. Poor Bella. She really does need it though.

Below Bella in her night leg splints and with her walker. You can see the right foot is still not flat so hopefully the surgery next week will help.

14th May 2010 -  15 days post op

Bella had her new leg splints fitted.  They separate into two pieces so she has a shorter dafo and longer outside one that comes up just below the back of her knee for extra support. She also has special insoles for times when she is less mobile which can be fitted inside trainers.  She hasn't had much physio the last 2 days due to this and fitting the new back wheels to her walker.  The new ones will let her go backwards with her walker which the previous ones didn't. She has borrowed the physio walking canes for a few days whilst we wait for hers to come in but every day we practise a few times with those. She isn't strong enough to walk with them without help and is learning the correct pattern to use them.

Please see pictures below of Bella proudly wearing her new trainers and having her new dafos fitted! They check for places were they may rub or cause pain after wearing them for a little while. They then can add extra padding or blow out with heat any badly fitting bits or worse case they have to send them back for adjustments.

May 15th 2010 - day 16 post op

Bella and mum went shopping for 2 pairs of new trainers. A first for Bella as she normally has to wear special supportive shoes. She still needs support but this is coming from the new dafos (leg splints).  We need 2 pairs of shoes as one to go with the splints and another to use with just inserts when Bella is less active. She definitely walks better wearing the new dafos and puts her right foot flatter so this is great. Roll on thursday for the next operation.

Please click on link below for a video of bella walking with her new dafos and walker.

http://www.youtube.com/watch?v=Wy2oyV8tHx0

May 17th 2010 - day 18 post op

Today Bella had physio at 3pm at the hospital and did some practising with the walking canes. Still waiting for her ordered ones to arrive.  She can stand a little with them but needs help to walk so you usually have to stand behind her and hold the canes.  She did some more bench presses and had her new dafos checked for bits where they are rubbing on her feet. New patches were put inside both especially the left one as it is felt that this foot is bending inwards a bit inside the dafo and needed extra support to keep the ankle from rolling inwards.

Today is Bella's mums birthday so we went out for dinner at Applebees after physio.  Only 3 days now til Bella's next operation!

 May 18th 2010- day 19 post SDR 

Bella went on the treadmill in physio and again had her dafos checked afterwards for bits that rub and another insert went in. Lorrie her physio today put some weights on her borrowed canes to make them more stable to hold onto and we practised with those.
After physio we went to the mall and spent some time in Macys. Bella did alot of walking around the mall with her walker and dafos on which is very good for her. Everytime she got tired she went in the buggy for a rest but was soon up again. Don't think I've ever put her walker up and down so many times before!

To see Bella on the treadmill today please click on link below

http://www.youtube.com/watch?v=cjR_mx40J2g

May 19th 2010 - day 20 post SDR

Today Bella had physio at 10am. She was in a great mood and worked very hard.  Michael her physio did some cane walking with her and she went on a new machine where she lifted her leg and it would show on a graph on a computer screen how high her leg was going.  It does one leg at a time and Bella really enjoyed this. She went on the bike (her favourite) at the end of the session and went around the physio room several hundred times. (or so it seemed). Only crashed once!

We had a call from Same Day Surgery this afternoon to say we would have to be at hospital for 6.15am tommorrow to prepare for Bella's operation with Dr Dobbs on her leg muscles.  This evening Bella did some really lovely walking in bare feet with her walker and when I told her to put her right foot flatter she kicked her leg out further and did!  It was great and something she couldn't do before. Her feet roll inwards still but this is why she needs the support of her dafos.

Sadly it was the last session Bella will have Michael as he has taken some leave next week so we insisted on having a picture with Michael so we could see his face and not the side of his head whilst working!  Michael has made hard work fun for Bella. Pictured below pulling silly faces.  Didn't know Bella's mouth was that big.....

 May 20th cont.....

Bella is more tired and cross this time but doesn't seem to be in any pain which is great. She was given some morphine and really wants to sleep.  Her legs are wrapped up like mummies!

By 10.45am Bella is moved onto a ward and is doing well. Still exhausted but manages to eat some cereal and drink some juice. Hopefully we will be able to return to the apartment tonight but they have reserved the bed for the night just in case. They don't let you go home until they know she will be comfortable.  The physio will pop by around 2.30 to check her legs and try to get her out of bed. 

It's been a long day and Bella has been sick from the anesthetic but she is doing well and was discharged at 5.30pm.  It's a relief she doesn't have to stay overnight.  She is very wary of you touching her legs and with the bandages it's hard to see where the wounds are.  She will be weak now for quite a while and it generally takes 6 weeks to get up to full strength again.

 May 21st - 22 days post SDR 1 day post 2nd op

Bella had a relaxing day as she wasn't up to doing much. She can't walk or weight bear on her feet yet as it's too uncomfortable. At the end of the day she discovered she could crawl a little bit but is timid of doing so.

May 22nd - 23 days post SDR - 2 days post 2nd op

Bellas right foot looked much more swollen then her left foot this morning and as it's saturday I didn't want to wait til Monday to check this was ok. We went over the hospital and spent about 2 hrs getting it checked out. Nothing to worry about. Her dressings were changed (bandages were tight on the right side) and her wounds checked. All fine so she was mummified again and sent on our way. Dread to think how much we will be billed for that but had to be sure she was ok!

May 23rd - 24 days post SDR-3 days post muscle lengthen op

The bandages came off today and Bella is still weak. She can weight bear a little bit. We were able to do some very small leg stretches and I can see a difference in both legs. The left one is brill and the right seems to be improved too! Where her left foot was rolling inwards (noticeably on stretching) and when wearing dafos, it seems that it is also straighter. No red marks at all on the inside of her ankles when you take her dafos off. How brill is that!

Tommorrow Bella has her post op check up with Dr Park at 2pm and physio at 3pm. Looking forward to seeing what Dr Park will say and also it will be good to see how she gets on in physio. She is still weak so it is going to be hard work for her. 

Pictured below with Mummy at the Botanical Gardens and reading a classic with her mummified legs.

May 24th-25 days post SDR- 4 days post muscle op

Had a busy day today. Very hot and humid. Went to the Zoo (it's free!) before our appointment with Dr Park at 2pm and were nearly late getting carried away stroking sting rays! Dr Park checked and stretched her legs and was pleased with them. He says we need to get her to walk as much as poss when she is strong enough (with flat feet) and he is still confident she will walk within a year.
Overall I think the two ops together have given her a better range of movement, much looser legs and we are looking forward to her getting stronger! We are very proud of her as she has been through alot and taken it in her stride (excuse the pun).
At 3pm Bella had physio and was given some more night splints to wear. These are more like her day time splints and stretch her calves and keep her feet at a right angle. She will wear these together with the other night time immobilisers. (Yes thats 2 pairs together). Poor thing but she didn't seem to mind wearing them tonight.

Pictures below: the man himself, smiling Dr Park and Bella at the Zoo trying to stand up in her buggy. Good for leg strenthening!

May 25th 2010-26 days post SDR -5 days post muscle op

It is Bella's last day today and she had physio at 11am. We went through all the time scales for wearing the various different types of leg splints, dafos, inserts. We finally got Bella's new canes just in time to carry them home! They filmed Bella doing a little walking (wasn't sure she would be able to yet but she managed a little with her walker). She did really well and was the first time I have seen her walk using her heels, can take longer strides and can kick her feet out further so her toes are up more (instead of walking on toes). Was great to see!
Tommorrow morning we are catching an early flight home! It's been a good month and has gone really quickly. Looking forward to Bella getting stronger so we can see what she can do with her new legs!

To see Bella doing some walking today with her walker please click on link below:

http://www.youtube.com/watch?v=ve9dwu5n_wM

May 27th 2010

Arrived safely home in the early hours of this morning! Bella has her first private physio session on saturday at (CPPC) Cerebral Palsy Physio Centre in Flitwick, Bedfordshire, so hoping they will see a big improvement.

To see further updates on Bella's progress from now on please go to 'Bella Post Op' link at top of page.