I have really tried, not to think.

But then the Community Peadiatric nurse came and gave all those little things I had been pushing out of my conscious thought, permision to bombard me!

OK so I asked her to come....I aked her to come because I was not coping with everything medical happening here! I aksed her to come because I needed to voice the mish mash of thoughts that was churning round my head like a cement mixer. I asked her to come becuase I was jut not sure of how much was hapening and how much I was imagining! i asked her to come because in the past when I have been inundated with concerns for the medical issues of my children I have ben accused of being over anxious, paranoid, even making it up!

Yesterday the physio's visited and they were really concerned over the change in Eve, really worried about the strugle she was putting in oher breathing efforts...but still Eve smiled, laughed teased and really had a go at out witting the physio and attempting tolurch herself backwards ofthe physio's knee....she nearly won! but despite these atempts Eve is obviously more frail, less energetic, weary, just plain worn out ith the effort of breathing.

Is this my imagination? Am I seeing somthing that isn;t there....did she alway breathe like this?

Last week we had a visit from the Social Workers...evestopped breathing a few times, becam oxygen dependant for a while, sruggledto maintain brething even when i sather on my lp with her head well supported and backas sraight as I could manage! She was reallyputting all her energy into just drawing breath.....or was she? Am I just seeing something because I want her to be?????

Weput together all of thechanges thathav made an impact on herlife over recent months...18 months ago Eve lost her ability to swallow....she had never had a safe swallow, but had managed on oral feeds for the first two years of her life...then had inermitant problems wih swallowingthen lost the abilty all together... Eve has had a hump to her spine ever since we have known her. It used to straighten when she was held upright. It was felt to be due to her general poor tone. Then it didnt pull quite straight, then it developped dramaitcally and now it is so noticable everyone can see it! eve has always had the ability to stop breathing...it was a positional hing, it someimes waslinkd to feeding, more often it was to do with her head and back control and a swift change of position would sort her out. Then amonth ago she stopped breathing, changing her position did not resolve things totally, we ended up in hospital...needing Oxygen, needing sensetive nuring, change of position monitoring....no one could workout why it was happening...it semi resolved....but he breathing was more laboured and noisy and posit ion was vital. Sleep agravated things, but laying her on her left side was fairly safe!
Putting all these changes together and with some suggestion...we looked into Arnold chiari malformation. I wa reminded of other pices of information given in passing during our adoption introductions...things just kept ringing a bell. I knew it was not likely, i felt I was probably putting 2 and 2 togethr and making 64...but the thought was there now and I had to have it officially written off. Soi aked the question and was not lauhed off.

Now I am left with churning thoughts, THe community nurse mentioned lightly, asif it was almost expected....hmmm they may talk of a tracheostomy you know. this was a trickling thought that had forced itselfintomyconcious mind a few timesand I had firmly batted it away...as she left she again said...dont be suprised if they want to do a trachy! Determined notto allow myself to go tomorrow with any preconcieved ideas I have refused to give it any rom for thought all afternoon....then I was on my own in the lounge with the computer on my lap....I typed tracheostomy into the search engine! Now I am in panic mode!

BUT what if the ENT surgeon says there is nothing wrong when we get their tomorrow? Maybe I am imagining it all?????

I am not going to go with preconcieved ideas....I need to wait and know what is goin to be said....Quietness and Trust.....Be Still....When peace Like a River????

I believe help thou my unbelief.

your prayers are anticipated and apreciated!
Tina

OH PS we also managed to get onto the topic of end of life plans for the girls...havin been terrified by the instabiiy of rosie's epilepsy we felt it apropriate to open discussion about what is in rosie's best interests in different crisis scenarios...of course because of the way our conversation had gone we included Eve too. We have not really even begun to make any actual plans, just talked about various options for wording and recording our wishes.
We are left now to await the coming appointements and then get backtogether to discuss our thoughts.