Goodbye April – Hello May

Another month is over and time to welcome in a new month. What a month April has been for us.  It has certainly been a rollercoaster of months. So time to say goodbye April – hello May.

Starting with C

There has been no change in her this month.  She is still bedbound and still in lots of pain.   I have been noticing that she is awake a lot during the night. This is due to her head and leg pains.  We had her Neurology appointment on Tuesday.  We last saw her Neurologist Consultant in December, so it was a catch up on how she is getting on with her new medication.  Honestly I have not seen any change in her and neither has she.

He does listen though, and when asked what other support we are getting, I told him none.  We do not see her Consultant and our GP will not doing anything without speaking to her Consultant.  So we just muddle along on our own as there is no one else.  He is going to talk to our Peadiatric Consultant about this.

Another avenue to try

My Aunt rang me a few weeks ago, after she had been talking to her neighbour and brought the subject of Lymes up again. C has been tested for this and the results came back negative.  In the end I agreed to talk to her neighbour, and I am so glad that I did.  Apparently the test the NHS does for Lymes rarely shows a positive.  We spoke about her illness and both of her sons and their recoveries.

I talked about C and her long list of conditions, even some I was not aware was a sign of Lymes.  She went to a private clinic in Germany and had blood tests carried out and treatment for Lymes and co-infections.  I am currently in the process of arranging this myself and after speaking with the clinic I now have a list of blood tests to be carried out.  I will hopefully be able to update you on how we get on next month.

Something that shocked me

When I was pregnant with C, I joined a pregnancy forum and joined a group of other expectant Mums due the same month.  We are all still in contact and even have our own little group on Facebook now.  At the beginning of April one of the Mums put a status up saying how heartbroken she was and RIP to her Daughter.  I read and re-read this not believing what I was reading.  Her Daughter who was born just days apart from C just collapsed and died the night before.  I still can not believe it now she was just 15 had her whole life ahead of her. When C woke up that morning  I just went in and gave her the biggest and longest cuddle telling her how much I loved her.

Birthday celebrations

It was my birthday on the 16th, as the weather was not going to be that good.  My husband and I decided we would go out and celebrate the next day.  My actual birthday was lovely and I was taken out for a coffee and cake by my husband and he cooked a lovely meal for us that evening.  The next day was beautiful sunshine and we headed of to London for the day.  We ate lovely food from Borough Market, had cocktails overlooking the River Thames,  My birthday celebrations carried on as we were out again with friends to celebrate.

Other News

It has been a relatively quiet month for any other news, I have been busy with everything above, that I have not had time to do much else.

How was your April, did you have a good one full of fun?

 

You may also like

18 comments

  1. I’m so sorry to hear that there has been no improvement in C’s health. It can be worrying when a child is ill. Let’s hope that the place in Germany can identify what she has. It helps to know what to treat.

    1. Thank you, we had her neurologist appointment yesterday and I came away relieved that he listens but so down as talking to him really highlighted just how alone we are in dealing with this. I am hoping that the tests show something which we can treat and we start to see an improvement in her health

  2. I hope you will find answers to C’s condition. It is so stressful for a parent to see her child ill. I pray this month will be better for you. My April was not that great too, but I am always hoping and praying for the best.

  3. I am sorry to hear about C’s health. I know how heartbreaking it is for parents to see their child being ill and I feel very sad when some children are taken away much too soon from their parents. I hope C’s health will show more improvement soon

  4. My birthday was on the 15th! Yay! Anyway, you must have enjoyed yours…your husband gave you such a good treat!

    1. Happy belated birthday, he did give me an amazing day out thank you, I hope you had a good birthdy as well x

  5. April was a great month for me but as always I have always hated MAY. Hope things could turn better for you this month. We can all hope for the best and aim for good health and happiness. I wish you Good Luck for this year.

  6. Sometimes it is hard to find the neurological issues and the right doctor to give the treatment. I have neurological issues and reports can come negative but the symptoms exist, so it is confusing for a doctor while giving treatment. Hope the test will help your child to find some relief. I wish your child recovers soon <3

    1. Thank you, it is hard I do understand that but watching your child suffer constantly for over 4 years is hard, and if I am honest it is only now she is getting this looked at properly so although she has suffered so long, it is early days still

  7. Seems like you have so many ups and down last April. So sorry to hear about C’s situation. Sending love and prayers and I hope everything will get better.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.