Another trip to London

       This week we had our appointment at Kings College.  Poppy was an absolute star and sat still (most of the time!) when the doctors needed to examine her!  They concluded that the scar tissue/opacification at the back of the eye that we believed was border line needing surgery was in fact not that bad.  The doctor said that he could see a good red reflex and so no treatment would be needed on that at the moment - great news, if a little confusing!  He did however say that he wanted her to have surgery to correct the turn soon.  It is getting worse and while I dread further surgery I am also quite eager for her to have it done as it should really help that eye develop better vision.  I feel that at the moment the only time it is really working is when she is patched - which is only 3-4 hours a day.  So the doctor said he would write to our local hospital and see if the surgery can be done there and if not then we will go back to London.  I have since had time to think and discuss with DH and we have come to the conclusion that going back to London has got to be the best thing to do.  we trust the doctors there, we know they have the experience and expertise. So I have been on the phone chasing them about this, eventually having to leave an e-mail that they will hopefully respond to on Monday.  Aside form that Poppy is doing great. She is growing in confidence with her walking every day now and her speech is coming along.  When I put her shoes and coat on before we go out she starts saying, "Bye" over and over, so cute!  The patching is still a daily struggle for us all.  We still have to use the arm splints or she will just pull the patch off.  She has got wise to this now though and is managing to slip the arm splints off, then the patch and leave them hidden in a corner of a room (along with her glasses) while she goes on her merry way playing with toys!  It is frustrating and upsetting and it is so easy to want to give up with the patches...but we know just how much good they are doing her eye...we have no choice but to soldier on.

These are a few pictures taken over the last six months:

This picture shows what we used to do before we got the arm splints - we tied her sleeves or put on scratch mitts or socks.  This worked okay for a while but she struggled to crawl or pick any toys up so she got very frustrated with it quite quickly.  So far the arm splints have been what has worked best for us as she is still able to crawl/walk, pick up toys with them on.  The only thing she cannot do is get anything in her mouth so we take them off for breakfast and lunch and just have to sit and watch her constantly!

Her first pair of shoes!

Her third pair of glasses - age 13 months

 

13 months old

Halloween 2013

Getting more mobile!

  With her big sister

 

Age 14 months, when we got the arm splints!

 

Supporting Children In Need - November 2103

 

Poppy wearing her prescription sunglasses - helps her eye on a bright day

 

With big sis again...love this one!

 

 November 2013 - Trip to London and play date with her friend who was also born with a cataract.

 

 

Wearing her build-a-bear glasses!

 Poppy the elf!

 

 

 

 

 

 

 

 

 

 Christmas 2013

 

 

Looking at her patches...a good one to end the post on!

A 1st Birthday...a 2nd Christmas...lots of patch-pulling!

Poppy is now 15 months old.  Since we last blogged she has grown so much!  She has had her first birthday and this week she has started to take her first few steps unaided!  I am so proud of her that she doesn't let her eye get in the way of what she wants to do.  She is very determined and strong-willed, I see that in her already.  She will shake her head in her high-chair when she has had enough to eat and say, "No no no no no no no..." over and over again, much to the amusement of the others who all laugh.  She loves saying, "Jay jay" and crawls around the house (or should I say walks on her knees which is her favourite mode of movement at the moment) looking for him, he is obviously her favourite!  We have had a lovely family Christmas - Poppy's second Christmas!  Although she is still so little still she has really enjoyed Christmas this year.  She was a bit dazed and confused on Christmas day morning being sat down in the lounge surrounded by presents, but she loved the Christmas tree, particularly the baubles and the chocolate treats!

Since she was 10 months old we have been battling with the patching every day!  In the early days she used to cry and then fall asleep as soon as the patch was put on.  Being told to patch for half her waking hours therefore meant that it had to be on pretty much all day as she slept so long.  It was very disheartening but as she got older she slept less and it started to get a little better.  But then she got aware of the patch and started pulling it off as soon as it was put on!  We had to resort to putting scratch mitts on and taping them on with microporous tape to stop her pulling the patch.  It was heart breaking to do that to her every morning and she struggled to crawl or pick up toys, it was so difficult.  We saw her consultant, Mr Chan, in the summer. Her pressure in the eye was fine, but the turn had got a little worse and the opacification had also worsened slightly.  We were told to continue with the dilating drops to help clear the visual axis and buy a little more time, but Mr Chan said to be prepared for further surgery to get rid of the opacification soon. 

We were still really struggling with the patching over the summer and decided to get arm splints.  I had seen pictures of other children on the facebook groups using them.  I remember when I first saw them I thought they looked so cruel and people do often make sympathetic comments when they see her wearing them.  But the thing is when you have to live on a daily basis of waking up, putting in her eye drop when I wash and change her and then putting on the patch, when you have to do this EVERY DAY and every day it is a constant battle of her trying to pull the patch off, then you will try anything.  The arm splints may seem cruel but she is actually not that bothered by them most of the time.  She is still able to crawl and pick up toys, the only thing she cannot do is get anything to her mouth so they have to come off at meal times (so normally the patch comes off then!).  The bottom line is that if we do not patch then she will not have a functioning eye...and that is why we do what we do every day.

After the summer we found out that Mr Chan was going on sabbatical for six months and so our next hospital appointment in October was with a locum consultant.  He did not instil much confidence in us, giving us different answers to things and totally confusing and unnerving me.  He suggested a EUA (examination under anaesthetic) as he said he couldn't get a good look at her eye while she was awake and said that he could check the pressure then too.  I said that Mr Chan was able to check her eye and the pressure while she was awake and he also emphasised minimising as many general anaesthetics as possible.  So I said that I was not happy about the suggestion of a EUA and asked to get referred back to Kings College hospital where we she had her original surgery.  I feel that the locum consultant at our local hospital does not deal with infants with congenital cataracts on an every-day basis.  It is after all not a common eye condition and so my gut feeling was that it is better to get her seen by specialists that deal with these issues every day, specialists in London.  We finally have a date to be seen at Kings College in a weeks time.  I am very nervous at the prospect of more surgery, but Poppy comes first.  I will do anything and everything in my power to ensure she gets the best treatment and care for her eye.