Harriet’s Ten/Eleven Month Update And First Annual Review

Somehow I’m behind on monthly updates so I’m going to squash two into one. I can’t actually believe that Harriet is going to be one next month! It makes me so sad to see time racing by in the blink of an eye so I make sure I appreciate every moment of it. Harriet has had a busy time as always, days out with the family, cheering Daddy on doing The Great North Run and celebrating Mam’s birthday. We are heading off on her first holiday this week as well so that should be fun!


The most fun is going to be getting her to sleep in the travel cot… yep, I failed at getting her into her own room and cot! I don’t give up on things easily and really thought I had it in me to persevere but after two weeks of no sleep I quit. The final straw came when she cried so much she was sick all over herself, sleeping bag and cot. Argh! I had been letting her cry but going in every few minutes to settle then leave. This particular night I went in and stood there in a daze for a few seconds thinking where on earth do I start here?! I managed to strip her off and clean her up a little then bundle everything into the washer. The only light relief in almost all of this was Harriet’s older sister’s reaction. Anyone who knows Nancy knows she is not a fan of going to bed so when all this was going on I asked her if she wanted to get out of bed to help mammy as she was still awake (shocker).


Her response was ‘no Mam, I’m tired.’ What?! She’s not daft! I even sat Harriet on her bedroom floor while I ran downstairs with the soiled bedding and she complained that she stunk!! She is so funny. So that was the end of that and I gave in. She’s back in our bed which isn’t ideal but it’s basic survival for me. I have a travel cot at the bottom of our bed, it’s been there for two weeks and she’s been in there for a grand total of five minutes. We will try again at Christmas when my husband is home to help.


At the beginning of September Harriet caught a cold which then turned into another cough resulting in another course of extra antibiotics. I am not looking forward to winter but then again it couldn’t be worse than the last six months as the longest we have gone without extra medication is five or six weeks. What I can be thankful for is that she has never needed to be hospitalised or grew any nasty bugs. She’s building her immune system like any other baby so fingers crossed we will have longer periods of being well.


What hasn’t helped is cutting a few teeth too. She now has five with more on the way if her cheeks are anything to go by – nice and ruddy most days! She has lots of new tricks too; she will give cuddles, clap hands, wave etc and is a demon in her walker. She manoeuvres herself ever so deftly around the furniture and scares the hell out of the poor dog who slopes off to the furthest corner whenever she’s in it!

All cystic fibrosis patients have an annual review around their birthdays – bad timing, eh? Harriet had hers this month and thankfully it went very well. Our clinic’s practice is to give patients an X-Ray and take blood, the latter I was dreading the most. We saw all of our team and they were all so pleased with her progress. It was quite emotional as we saw the doctor who probably knows the most about Harriet as he was the first to see us post-diagnosis. He had a registrar in with him and he was telling her Harriet’s back story and how far she had come. Hearing it all back was really remarkable; you almost forget everything she’s been through.


The final part of the night was the blood test and my girl did not disappoint. She dealt with it in her usual laid back way. She was sat on my knee with me holding her tightly, and another nurse holding her other arm, squeezing it. The third nurse went in with the needle and she didn’t even flinch. Just sat and watched. I couldn’t believe it and neither could they. She is so tough it puts us all to shame!

I came away feeling so proud of her. We really do have so much to be thankful for and so much to look forward to.

The Great North Run for The Cystic Fibrosis Trust

By the time this post goes up, one week will have passed since The Great North Run – the world’s greatest half marathon don’t you know?! I have always found the run to be emotional but this year more than ever. I remember watching every year, listening to all the runners stories and getting rather teary so I was prepared for this one, our first for The Cystic Fibrosis Trust.


Since our daughter Harriet was born last year and diagnosed with CF, we have decided to do as much as we can as a family to raise funds and awareness for the condition. We hope that with our help, along with many others, new life changing treatments will come into play. Amongst many other fundraisers, my husband decided that he would sign up to do The Great North Run as we are lucky enough to live right by the runners’ route. He had always wanted to do it so for him this was exactly the right time and reason.


I was worried in terms of his training as he is always so busy with work and I didn’t want him to go into this without a decent amount of prep behind him but by gosh he did it! The furthest he had done before the big day was eight miles (ish) so he was fully accepting of the fact that  on the day he would walk a little of the thirteen mile course. Aside from stopping a few minutes to speak to us and his parents, he ran the WHOLE way. How amazing is that? I am so so proud; what an achievement! Running with him was his sister, Emily, who I am sure helped him keep going through those tough final miles.


While they were running we were camped at just over the half way point with our CF Trust banners, balloons and t-shirts! When I first arrived on the roadside I was almost in tears for quite a while, filled with so much admiration for all these people going by, all helping to change lives. After I had settled and armed myself with oranges, I set about looking for all CF Trust runners and giving them some much deserved encouragement and support – hopefully we spotted most of you!


When Chris and Emily arrived they looked so good! You wouldn’t think they had just ran over seven miles in very warm conditions. It was a beautifully sunny day, perfect for spectating – maybe not so much for running! We also had two other runners for The CF Trust that day, and good friends of mine, Marie and Emma.


Both of them did so well and between them raised such a fantastic amount. My cousins’ daughter, Lucy, also participated in the Mini Great North Run the day before the main event. To think that all these people are willing to give up their time, put in so much hard work and effort for our girl and all others affected by CF is very humbling. We can’t thank them enough. We also can’t believe the generosity of those who sponsored all of our runners. Even now, sponsors are still coming in but we have raised over two thousand pounds. Wow!


Even though I didn’t participate I think I enjoyed it just as much as the runners! We made such a day of it, cheering everyone on with our family at the roadside. Despite some sore legs for the next few days, Chris and Emily are now signed up for the foreseeable future and, fingers crossed, one day I will be able to do it with them! Hopefully Team Corr will grow each year and we can continue to help all with Cystic Fibrosis. Please let me know if you fancy signing up for next year!

 

Coping With A Child In Hospital

I truly hope that the majority of people reading this will never, ever have to face a hospital admission with their child. That said, lots do; some for minor ailments and others more serious. All equally as worrying to a parent. I am by no means an expert; there are so many other parents who have spent months living in a hospital room at their child’s bedside. My tips are obviously based on my experience of having a child with cystic fibrosis who has undergone surgery at birth then further surgery at six months old.


The emotional stress of seeing your child in pain and suffering is truly horrific. Feelings of abject helplessness overwhelm you every minute of every day spent in the hospital. I used to be quite squeamish and pathetic when it came to all things medical but pretty soon after witnessing my precious newborn go through the full works of poking, prodding and then surgery I knew I had to man up.


For certain procedures like taking blood, the doctors would always ask if I wanted to leave the room. At first I think I did as it is very hard to get blood out of teeny tiny veins so I knew it was going to be traumatic. As I sat in the parents room I began to regret my decision to leave her immediately. How totally selfish I was leaving her to go through this alone. Lesson learned. I have not, and will not, ever leave her for any procedure no matter how big or small. I have also learned that I will never complain about anything medical I have to go through after seeing Harriet deal with everything so bravely. Usually I would fret a little about needles, injections and such; now I would face anything and not dare bat an eyelid. My little baby has taught me so much in such a short space of time.


Being in hospital not only affects your child but also the people left at home probably feeling totally helpless too. In our case we have a three year old daughter who was ultimately passed around family members when dad had to be at the hospital with us. I don’t know how she has coped with this but all outward signs show that she is and was fine. In fact I think she had a whale of a time being spoiled by grandparents, aunties and uncles! My husband brought her up to visit almost every day to see us. More for my benefit than hers as she typically got bored very quickly and would just wreak havoc around our tiny room, eating all the lovely things visitors had brought me and wanting to go to the playroom on the ward all the time!


In terms of visitors I would organise them so I had at least one person coming per day just to keep me sane! Days and nights can be very long in hospital, especially on weekends. There’s always noise, hustle and bustle so there’s little chance for rest either. One morning I decided to pop to the cafe in the hospital to pick up a coffee and came back to find Harriet tangled up in her gown and wires so from then on I didn’t leave the room for more than a few minutes – visitors really saved me!

Luckily I was breastfeeding Harriet both times we were in hospital and their policy was to feed breastfeeding Mams. This was a huge lifesaver. Although hospital food isn’t the best, it’s a lot better than having to organise something yourself during times of such great stress. One less thing to worry about so I was so grateful for that. I am not looking forward to any future spells in hospital when I will have to fend for myself. Hopefully we won’t have to deal with this though and Harriet will stay well.


The last thing that really saved my sanity was technology! For our second planned stay in hospital we decided to buy an iPad. Best decision ever. When we were first in after Harriet was born I very quickly used up my data allowance and spent so much money adding on data. Having the iPad was such a bonus as I found I couldn’t concentrate on anything for long so books were out of the question. Facebook, Twitter and YouTube were about all I could manage as minor distractions.


I hope and pray that we won’t have to spend any time in hospital as it is such an upset to family life. That said, the staff have always been fantastic and at least as a parent you know that you are in the best place for your child to make a speedy recovery.

If anyone has any other tips to survive hospital admissions do leave a comment below as I would love to hear them.