A note from mummy...

I can't believe we have come to a year down the line...this time last year we had a nearly 3week old perfect baby boy. Little did we know that in 2days time our world would come crashing down. On the 14th July 2010 at 11oclock I got a phone call from the health visitor to say she will be coming round at 1pm with a colleague. She kept going on about Ricky being there with me which he couldn't. This was only his second day back at work. I was supposed to be having Catherine round for lunch. The health visitor rang a second time just to make sure there was no way Ricky could be there. No I said. Still I didn't think anything was wrong, you don't do you. No parent expects to hear that their is something wrong with their perfect little baby. After speaking to Ricky he said he was coming home. I told him not to worry, it's probably just routine! Maybe I was just too tired and sleep deprived for the alarm bells to really kick in!

So 1o'clock comes, Ricky's home and there is a knock at the door. Theres Elizabeth (hv) and a lady called Pat. After a brief chit chat they get down to the real reason they came....I can still hear her saying it to us now...remember the exact words she said...something has shown up in Ethans heel prick results...have you ever heard of cystic fibrosis...

I think my heart skipped a beat there and it felt like time stood still while i took that in, was she saying there was something wrong with my boy. Of course we had heard of it but didn't have a clue what it was. Pat went on to explain basically in layman terms for us to try and understand what that meant. The one thing that stood out above everything she was saying was life threatening....life threatening! So my perfect 3week old gorgeous baby boy was going to die.... my boy, our boy! This cant be right, they must have got it wrong, got the wrong results, mixed up the blood test. Something, anything...it cant be true! I sat there with Ricky crying, just holding my boy, squeezing him. how can this be happening, I'm his mum, mums are there to protect their children, to help them, to make everything better yet there is nothing i can do about this. Helpless, sick, failure...those words barely even come close to how i felt right then!
Pat and Elizabeth were great, very supportive and explained things as much as they could. The next step from here was to go to the Royal Brompton hospital tomorrow for a sweat test to have it confirmed, then they left.

There we was, sat there faced with these horrible thoughts running through our minds! In the last hour our whole world had flip turned and crashed with a ten mile pile up. We had to make the call to our family and tell them what had just happened. How can you tell your parents that their first born baby grandson has a life threatening condition that will eventually kill him. One of the hardest phone calls i have had to make. We tried. through the tears, to explain it as best we could. Of course we missed out bits and forgot loads. The family rallied round to support us. That night went by in a blur, not only was we adjusting to life with a newborn baby, we had all this to contend with too. All night i had all sorts running through my head. How is this going to affect his life? will he look any different? how long have we got him for? all this was answered the next day.

After having the confirmation and talking to the team at the brompton things seemed a little clearer. He will not look any different, which i was pleased about as children could be so cruel and i didn't want him to be bullied through school for being different. The way they put it then was that he is just more prone to coughs and colds and if we don't treat it in time he could get quite poorly, they explained the physio and medication that he would need and sent us on our way. We had to go back the following week for full 'training' as it was and to be educated fully. We left there feeling slightly better about it all.

Still doesn't take away the thought that we could possibly out live our precious little boy. Although life expectancy has gone up to 37 now, that is still way too young. and only a percentage get that far, how do i know he will be one of those. All we can do now is keep Ethan in the best health we possibly can, keep him away from anything that could possibly harm him like people with colds and smokers, and keep up with all the preventative methods such as physio and medication to try and keep it all at bay. Keeping ethan healthy is my objective now, if i cant do that what can i do?

I pray every day that a cure will be found this month, this year, just as soon as possible before this horrible condition takes over my boy. Everyday we are reminded that he has this, we don't get a break, we just get on with it. But to have my boy each and every day makes it worth it. There is nothing i wouldn't do for him and if i could take it from him and give it to me i would do it in an instant. It breaks my heart knowing the facts and I'm always asking that question 'why him'  but am so grateful to have him, he is my absolute world and i cherish every moment with him. To reach his first birthday and in general be pretty well was fantastic, this time last year we didn't have a clue what the future held, we still don't but the first year was overall a healthy one.

Life is a time bomb no matter who you are,

But when it comes to my boy..... every day is a gift xx

Annual Asessments...

The coming of age.....being the grand old age of 1 I had a few different tests etc. I went to Great Ormonde Street Hospital for a lung function test. This was a repeat of the one I had back in September. I was given a Sleeping Syrup that induces a deeper sleep and they got on their way. Was exactly the same as the last one so at least mummy and daddy knew what to expect so was a bit easier on them. I had one long sleep that day :) but was back to normal the next day.

Next on my list was a bronchoscopy and a CT scan. The bronch I had last year but the ct scan was all new. It still didn't make it any easier on mummy and daddy when they took me down and I was GASSED!!! haha, sounds evil aye!! Just messing, although I was put to sleep with gas. It was a good hour and a half before we were reunited. I had a bandage on my foot where the cannula was and 2 little ones on either arm where they took blood. Rather that than they try and take the blood when I'm awake. So after I come round fully we went back up to our room where I had some lunch, I was just a tad hungry seeing as I hadn't eaten since mummy woke me up at 6am...Anywho, professor Bush who carried out the procedure came round about 5:30pm and gave me the all clear to go home, said everything looked great but obviously cant tell fully until they get the full results from the lab in a few days but he sounded pretty pleased! GO ME :)

2 days later mummy spoke to Katie my cfns (cystic fibrosis nurse specialist) and she said it looks as though the washings they took from my lungs were growing 'something'. I bet its that dam Pseudomonas! The next 2 days mummy was a nervous wreck, seeing as daddy was away training for work and my consultant had mentioned me needing to go in for IV's dependant on Mondays bronch. I have already had 3 courses of anti biotics for pseudo and they were reluctant to do a 4th. Pants!

Friday Katie called with the results....Clear!!! I know... I know how can it be clear, she said it was growing something. Well turns out it wasn't and there is nothing going on in there.... NO PSEUDOMONAS!!!! Now baring in mind I had the bronch 4days into my neb free month its anyones guess as to if i really have kicked it or if its going to come back this month. Doctor O'Callaghan from whipps said I don't need to go back until September now but I don't think mummy is very happy about leaving it that long so can see something happening at the end of this month, even if its just a cough swab....

Well that's us up to date for now anyway,

E x

25th June 2011.... My 1st birthday :)

Today I turn 1 year old....a whole year....wow. Mummy and daddy have a little party planned for me. Just close family...both Nana's and grandad-dads, aunties and uncles and a few extended family and friends. I had an excellent day, got lots of lovely presents and some money towards my swimming lessons. Daddy done a bbq and mummy made me a lovely mickey mouse cake, with a little decorating help from daddy. It was a very long day and as did the last party here, it ended with Nana Lott attempting to play football...was rather funny :) once everyone had gone I had my bath and hit the sack leaving mummy and daddy to tidy and clean up :)

Love 1year old E x

Results from clinic 20/05/11

So I had my clinic appointment on 20th May. After 3weeks of no nebuliser this is quite an important cough swab. Docs are a little concerned at my weight as I have lost a little, dunno how because I eat like a horse :) other than that I'm all good. And my Tongue is NORMAL :) definitely the colomycin....

Took a while to get the results of this cough swab as the doctor had gone on holiday! But after 2weeks of chasing them up we got it....positive...pseudomonas!! Looks like I can't fight it off completely. Not without the help from my neb anyway. So they decided 2week course of antibiotics and back on the Tobi for June. Next clinic is 1st July but my CF nurse wants me to have another cough swab done when I finish the Cipro. So on the 17th June I went back to Whipps cross for another one. Dr told mummy she would call on Tuesday with the results.

Monday 20th June we went to mummy's cousin Paul and Niki's wedding. Had a lovely day even if I did make a bottom burp right at the wrong time during the ceremony :) really enjoyed the day and love being around all the family. Niki looked lovely and paul didnt scrub up too bad either.

Tuesday...daddy has the week off so today we went to swimming as usual, then we went off to great aunty vicky and uncle peters in kent for a few days. Its lovely there, in the middle of nowhere... went to the aquirium and had fish and chips on the sea front. the couple of days went quick and we had to come back friday, reluctantly, as mummy and daddy had to get everything ready for my birthday.

needless to say the doctor from whipps did not call mummy on tuesday with the results and it took quite a few phonecalls to them befre we got them.... end of it is....CLEAR :) so after being back on the tobi nebuliser its kicked the pseudo again...fingers crossed it stays away...

E x