This is the Day....

that The Lord has made...I will rejoice and be glad in it!

Reasons to rejoice??? Counting my blesings...OK Here goes

We had people to turn to to ensure the other children were taken care of before and after school...in order that we did not have to worry about them whilst taking Eve to hospital!

We had a safe journey...made good time and arrived at the hospital in good time!

Knowing God is the Lord of parking spaces we confidently drove around the hospital and found a space right outside the main entrance!

We found the Clinic first time!

The receptuionist was kind and smiley and handed us the X-Ray form immediately without me having to wrestle it from her!

We had a nice walk around in a complete circle in order to find the lifts to go back to B floor and X ray!

X Ray was almost deserted and we were calle din within minutes! The first two X Rays were fine and we were heading out and back to clinic via the WRVS coffee shop in record time!

Dispite the fact that the volunteers behind the counter had lost their ability to smile or look us in the eye and the fact that everywhere is set on putting coffee into cardboard bups making it totally undrinkable..I was able to satisfy myself with a bottle of cold drink and we headed back to the clinic!

The interminably long wait to see the Dr was made less horrendous by the cherful demeanor of the staff. Ok so they waited until we were 55 minutes past our appointment time before they told us the Consultant was running an hour behind...then we waited another 40 minutes before being calle din....where we sat and waited another 20 minutes before the Consultant actually showed his face....mind you during that 20 minutes we were kept amused by listening to the consult before us...thankfully we had no idea who they were and their distress and concern was not somthing we could do anything about....it made for a slightly less boring wait!

The Conusltant once he was focused on Eve was charming! He came into the room smiling and hand hel;d out to shake as he said oh it is good to see you again though I dont suppose you are quite so pleased to need to be seeing me! he meant every word too.... he is a lovely man as well as a very good Consultant!

Trying to find blessings in the next 15 minutes was not quite so easy. Maybe someone can find them for me?

Eve's curves have now exceeded 90 degrees. It is a deffinite that this is haveing a detrimental affect on her breathing. It is also highly likely that the mitochondrial myopathy is contributing a large proportion of the causitive factors! What we do about it is a total conundrum. The Consultant who is also I am told an excelent Surgeon, wants to get the oppinions of all of Eve's other professionals before we discuss surgery as an option. He assured us that had Eve been a typical comple Cerbral Palsy then he would not hesitate to begin to convince us that surgery was the best way forward. However taking on board Eve's autonomic problems, he Mitochondrial diagnosis, her breathing issues and the fact that she displays some very Bizarre characteristics of most of the difficulties then he is not so sure that surgery is the best option. He feels that should we go for surgery she will need a long term tracheostomy. He is also convinces she will be in for a long and stormy recovery.

I suppose the blessing that jumps out of all that is that we have such a fantastic Conusltant who is prepared to look at the whole child not just the mechanical bits he wants to fix! That is actually a huge plus and one not frequently found in surgeons in our experience! Jonathan's heart surgeon is in fact the only one we have come across that is anything like as good!

So having dictated a letter to all the relevant professionals he asked us what questions we had...My only one was what was the prospects if we decided against surgery...he assured us that there were options to protect the airway...cpap, bipap and tracheostomy would all be points to consider.
We said we felt a need to try and get our heads around all the new information as well as that still reeling in our heads since last July...he agreed and said he would give us a safety net appointment in 6 months but that once we had come to a point where we wanted to discuss things further with him we should contact him via his seceratary.

We left the hopsital in another state of shock really....we had always known this would be a difficult appopintment but it had surprised us with it's complexity and the fact that here was so much involved inmaking the decisions before us. Everyone of the professionals we deal with for Eve will have an important input to the decision.

So in need of food and retail therapy we ended up at Ikea...bought some things for Jonathan;s room and found the perfect chest of drawers and wardrobe sadly we had no room wo will have to order them online but managed to get a bargain in laminate flooring which will hopefully go down this week! Then we had a nightmare journey across Nottingham hitting at least 100 red lights on the way I am sure! It took us 20 minutes to travel 6 miles...our carer at home after school had another commitment that meant she ought to leave ours for 5.30...we made it home at 5.29!

Another safe journey and well cared for happy kids at home and good friends concerned for us too!

So This is the Day that The Lord has made I will rejoice and be glad in it!

I may also shed a tear and feel sad...but Blessed are the broken hearted!

hugs
Tina