October 28th, 2009 by aimeem

After a long sixteen weeks of blood tests being messed up and doctors not communicating with us (!) we finally have the results for the Angio-Oedemia. Thankfully they were negative so we are obviously very relieved; however we now have to enter into a whole new barrage of tests. I had to take her to the Alex last Friday where they did another chest x ray, an ultrasound of her face and her neck. They also did her bloods again to ensure the white cells had gone back up to a normal count. I am presuming they want to rule out all the nastiest I have previously told you about. I have also requested that they also go down the route of allergies as I have a sneaky suspicion it could well be allergy related. We so far only have the results of the bloods which were fine thankfully.

Sydney-Mae had her first measles injection last week as we have chosen to do the MMR individually and so far so good. We were slightly on edge due to the higher risk of seizures. She is currently cutting four teeth so is having us up in the night and moaning lots in the day unless she is being cuddled but I think that is all pretty age appropriate!

We have had a few good weeks with Sydney-Mae development wise. We are now three weeks into Conductive Education at The Dame Vera Lynn School for Parents in Billingshurst, and she really has come on leaps and bounds- all very small steps admittedly but all going in the right direction. She is now rolling a lot more and becoming more and more happy to be on her tummy. She now plays nicely on the floor lying down and loves picking up toys etc. At school we do ‘crawling’ practice and she really gets how to do it with her legs but her arms are another story. Her arms are so much worse affected than her legs but we are seeing that her arm function is slowly improving e.g. occasionally getting her dummy into her mouth and putting a biscuit to her mouth. She has amazing stepping and we are awaiting the arrival of a new walking frame that will hopefully give her more independence.

Our Physio is super excited by Sydney-Mae’s development and I wanted to share some notes she has written about her this past week-

17/10/09- Home treatment

Treatment with Ross. Fantastic session. Ross feels Sydney-Mae is using her hands well and rolling around a lot, yesterday he found if he supported her she “crawled” her legs but seemed unable to move her arms. We started off commando crawling into the kitchen. Sydney-Mae thought this was very funny and she liked the different floor surface. We then worked with her roll on high kneeling pushing her body up using flat open hands. Sydney-Mae was able to lift up her trunk independently on “command”. We also spent quite a lot of time in 4 point and low kneeling both with fantastic weight through open hands. Lots of giggling and gurgling. When sitting Sydney-Mae seems unbothered by trying too balance because she has finally discovered toys, she wants to hold them, mouth them, look at them and generally play! This means if she is propped forward she is not extending and so can balance. Now we need to perfect the sideways control. Another Thing Sydney-Mae did for the first time was to bend her leg, she can now internally rotate her right leg independently to side-sit. I am loving working with this princess and seeing her change!

That just says it all- we are so proud of her and celebrate her every little achievement.

Two of my fabulous work colleagues held a fundraiser for Sydney-Mae last Thursday and they made £97 which was just awesome. My line manager who makes a mean curry and one of our Admin ladies who makes the most scrumptious cakes, and they sold lunch of curry and cake for a fiver! Sydney-Mae also came along to the lunch as the guest of honour! Thanks so much to my fabulous colleagues who’s support we appreciate so much.

Finally we are off to New York in a month and we are so excited- I used to live out there as a nanny for four years and the family I nannied for are extremely close friends of ours and we are staying with them. Whilst we are there we are visiting NYU to get a second opinion on Sydney-Mae and a prognosis and information on therapies etc so watch this space. Our friends have just adopted a beautiful little girl so we will also be there for her Adoption Party, as well as Thanksgiving so we are really looking forward to two weeks of activity and catching up with old friends.

I began to write this blog entrance earlier this week but have been so busy I had to do it in instalments! Well I am so excited to be able to say that Sydney-Mae now sits up!! OK it is a little wobbly and she still needs me to be in close proximity and it will no doubt be a long while until she is ’safe’ at sitting, but hey- she can do it! We have waited so so long for this so I cannot tell you how proud we are of her. She also had a fabulous session with her Speech therapist yesterday who as ever was very impressed with Sydney-Mae and said that the way Sydney-Mae plays ‘turn taking’ with us with making noises is indeed the first stage of talking! All in all a good week!!

I will put some updated photos of her sitting etc in the next few days,

Aimee x

October 5th, 2009 by aimeem

On Friday 11th September Sydney-Mae started at her special needs playgroup. Half hour into the session I observed that her bottom lip looked a little blue and she was a little floppy and lethargic. I took her to the doctors straight away who told me she had a temperature of 103 degrees poor love so I took her home. I was advised if her temperature did not respond to calprofren within a few hours to take her to the Royal Alex. Later that day we went to the Alex and she was admitted over night. She had bloods done and thankfully they were all normal. We went home the following day and it took her the best part of a week to be back to her old self. I took her back to the Alex on the following Wed to have the bloods re done that they had so far managed to mess up three times previously. I found this visit to be particularly difficult as the consultant we are under for her puffiness around her face told me that if the bloods come back negative and she does not have Angio-Oedemia, they will need to arrange for her to have an ECG under a general anaesthetic to check her chest. I was confused by this and was informed they had to check for lymph node glands on her chest which would indicate Leukaemia. I was extremely taken back- during this conversation Leukaemia was mentioned about ten times. My Nephew had Leukaemia when he was much younger so we as a family have lived through it once and pray to God we never have to again. My Nephew has just started secondary school and is an amazing young man. They took her bloods again and whilst there took a full blood count (the same as they had done five days prior when she was admitted). Unlike last time where they were all OK we were told this time her white blood count was slightly low but not to worry! ‘Oh Ok then we wont, easy as that!’
She reassured me that so far there were no other signs to suggest Leukaemia but ‘it has to start somewhere!’ We were told the Angio-Oedemia Results would take two week and low and behold three weeks later are still awaiting the results so it has now been three bloody months and we are still none the wiser! It is safe to say I am not the Alex’s greatest fan at the moment!

As I mentioned we started a special needs playschool and am really sad to now have been told it is closing down at Christmas after fifteen years due to a lack of funding! It is so disappointing and frustrating as that means we no longer have any special needs playschool in this area. We are also going through the process of getting everything ready for Sydney-Mae to start mainstream nursery in Jan. I was initially told the LEA would fund a 1:1 for her but am now getting the vibe I may have to be prepared to fight for that a little so bring it on! It’s all about inclusion and she will not be able to be ‘included’ if she is left laying on the floor when the other children are playing musical chairs or whatever so she definitely needs a 1:1.

We started at ‘The Dame Vera Lynn School for Parents’ last week and it was just awesome! It was interesting as we had been told by our Osteopath Stuart Korth a few days earlier that he felt Sydney-Mae needed a kick up the backside and that she was capable of doing more than she is and both Ross and I agreed with him. She is indeed a little bit of a lazy madam and she was a little unhappy at the school that they made her, Princess Sydney-Mae, do some work! She made angry sounds I had not ever heard before and it did make me laugh! I am really positive about attending there and really hope they can help us bring her on. The most fabulous part of the day was meeting Dame Vera Lynn- apparently she pops in once a term and it just so happened to be our first day. I had a lovely chat to her and I had the opportunity
to thank her for providing the school to help parents such as ourselves who have been thrust into a life of uncertainty, the advice and support given at the school is just invaluable.

Finally- the saga that is the Disabled Facilities Grant! We are looking at plans to adapt our family home to accommodate Sydney-Mae if infact she cannot walk unaided. We had a meeting with our Occupational Therapist, Environmental Health Officer and a Surveyor. The grant we can get is £30,000 and the plans came to £68,000 so back to the drawing board with that then! We have been told that this entire process will take approximately two years so you will hear lots more about this I am sure!

To end on a more positive note Sydney-Mae has made some progress in the past few weeks. I am working really hard with finger feeding and she is really getting better with eating biscuits etc- not the healthiest but hey- whatever works! The awesome thing is that she actually bites on things you put in her mouth now and once it’s in her mouth she can continue to munch it and swallow it without gagging which we used to do a fair amount! She can also now at times pick her dummy up and put it in her mouth but bless her it really takes a lot of work. She is also rolling around more on the floor and showing signs of wanting to try to crawl but not actually doing it yet. We were told we have to start putting her on the floor more and it was right, let her go back to basics and do all the stages of development she missed out. Well Sydney-Mae you are doing well- keep it up! We love you and Taylor baby girl x