We had a pretty uneventful Summer holiday overall. Seraphina had a hospital admission in June/July with a line infection which involved her going to Theatre to have her Port a cath removed and a different type of I.V line (a broviac) put in. She was extremely sick at the time and it gave us a bit of a wake up call on how lethal Sepsis can be.
However she recovered and was home just in time for the school Summer holidays. Mostly we just enjoyed being together as a family but the highlight by far was spending a long weekend in August at Donna's Dream house in Blackpool.
The Dream House is a holiday home for life limited/terminally ill Children and it was totally a dream come true for all of us. There was a hot tub, Sauna, huge playroom, Teens chill out room and even its own Cinema complete with popcorn and sweets!! we also got given free tickets to Madam Tussauds (which Seraphina thought was extremely funny!?!), the Zoo and the Cafe on the corner for our evening meals. The kitchen was also well stocked with yummy food which we were free to use.
The only complaint that we had was that it went far too quickly!! :), it did us all good to just kick back and 'chillax' for the weekend...huge thanks goes to the wonderful Hanna McKearnen for nominating us and of course to the Dream house owner Len, who allowed us to visit!
Life with the Broviac has not been simple purely and simply for the reason that Seraphina will not leave it alone, at every opportunity she rips the dressing off it...the infection risk with her pulling it off every day is huge, and cleaning down an IV trolley and scrubbing up at 2 am is no laughing matter either!
Besides the day to day challenge of keeping Seraphina infection free we have had some added complications..strange and increased allergic reactions to things...from nappies ( again), to lots (and I mean lots) of different line dressings. she has come up in horrible blisters which hae broken down and started weeping and raw patches of skin. then to top it all off she came out in hives all over which didnt respond to antihistamines, she ended up on steroids in hospital to bring them down, which we then continued at home, but as soon as they stopped, althoguh the hives didnt return, this itching did...she scratched and scratched until she bled. After the Nurses saw how bad she was they spoke to Sheffield Childrens who put her on a high dose of IV Piriton twice a day which she is to stay on until she sees an immunologist to try and get to the bottom of the itching and reactions.
Seraph is also having bloating and bleeding in her bowel on and off, Sheffield have now made the decision that they cannot do anything more for her and referred her to Great Ormond Street Hospital in London for a second opinion. This is sad in one respect because it really does hammer home that she is really sick now but on the other hand we have heard so many good reports we are hopeful that the Consultant she has been referred to will have some good ideas/strategies for treatment of Seraphinas intestinal failure.
It is very easy to let all the 'horribleness' of Rett syndrome get me down..and yes it has and does from time to time,particularly when I am sleep deprived and grumpy...But then I look at Seraphina... she her bravery, her love of life.. see her as God sees her...perfect and beautiful and someone who God loves so much more than I do. Then I know that I cant 'give up', I just need to change my thinking.
I want to be a woman who sees beyond my natural situation regardless of how hopeless or desperate it may seem and looks into the supernatural realm with the eyes of Gods spirit.
There I see a God who loves and cares and heals. I see as a whole rather than focusing on this one.
'' For I know the plans I have for you '' declares the Lord ''plans to prosper
you and not to harm you,plans to give you a hope and a future '' Jeremiah 29:11
No matter how bad things look I know Gods plans are for good. My prayers for healing for my little girl are what God wants too. How and what form that healing will take I dont know, whether it will be a new wisdom from the Drs point of view to see what the root of her gastro problems are whether it will be ''THE CURE'' for Rett that I and many other parents are hoping for or whether it will be a supernatural moving of the Holy Spirit which will miraculously heal her I dont know...ALL are equally possible with my God in control,with God you have to think outside of the box. Honestly I'm not sure what the future will hold.
One thing I do know though... I have HOPE.