Day 100…

….am I actually writing this? Is it really day 100? Have we really managed to get this far and hit this milestone? Yes, yes yes. I am excited today:-) After spending the day at the hospital yesterday for lots of examinations, we are having a quiet one today and it is starting to sink in that the first 100 critical days have passed since Benita´s transplant. We have just been trying to keep going and keep going but for the last week I have started to feel like everything is starting to ease a little and it´s not all about taking medication and being careful and spending hours at the hospital. Benita is just gorgeous and brings us more joy than I think we could ever have possibly imagined. She is full of life and has real spirit and we are truly blessed to have her and very thankful that we have made it through the last few months as well as this:-) We won´t know for sure what the outcome is of the blood tests for up to a couple of weeks but to be honest, I feel it in my heart that everything will be ok and she is just looking so much better; we are happy:-) The colour has returned to those little cheeks, which are now a lot chubbier than a few weeks ago and from the minute those eyes open in the morning until she crashes at night, Benita doesn´t stop! She seems to be understanding a lot more, especially what she shouldn´t be doing and entertains us by crawling up to the sockets, turning to see us and shaking her said and saying nononononono (or should I say, neinneinneinneinnein). It is hard not to laugh! At the danger of her first words only being in German, I am being strict and trying my best only to speak to her in English and I am looking forward to my Mum and Dad coming out at the start of October for some more input! So were does it all go from here? Actually at the moment, nothing will change in our routine for the next month or so. We have started to reduce the immune suppressant but until she is completely off this, she will still need the anti-fungal drug twice a week at the clinic. However, we move house at the beginning of October and if everything goes to plan, we won´t be spending Mondays and Thursdays at the clinic for much longer than then, which will free up a lot of time (and energy). We can also start introducing Benita back into the real world which means I can take her to the shops and we will soon be able to do things with other kids, but we are still cautious and won´t go over the top with this. Otherwise, we have a lot to look forward to and are planning a few days away from 11th-15th September and are looking forward to the U2 concert on the 15th. Then we shall be busy packing and moving and before I know it my folks will be here. It has been a hard few weeks and I was a bit low a couple of weeks ago but am feeling a lot better now. Long may it continue! I have decided to write a weekly update from now on to get back into a regular habit of blogging without it becoming a chore so please keep reading, new posts shall appear at the weekends. Here is one of the more recent pics of our girl:-)

Day 72 – time flies, sort of!

Well I know it has been a while but our days are full of a very active little girl and I honestly fall into bed in the evening! Apart from a pretty yucky bacterial infection and 10 days of a different antibiotic which ended yesterday, we are doing well and Benita still doesn´t cease to amaze us with her determination, willpower and energy! She is now a very professional crawler and is starting to pull herself right up onto her knees and inspect whatever might be on the coffee table etc. She was sitting on Stef´s knee the other morning, a little bleary eyed and with her usual runny nose and looked up at him with those big blues eyes, spat out her dummy and said “Papa”. Let´s just say he struggled going to work after that:-) She is a joy but really hard work:-) Everyone in the hospital told me that she would make up for lost time and yes they were right! We still have our routine visits on Mondays and Thursdays and it is getting a bit better as we start to see familiar faces and feel a bit more confident there. I will still be glad when we don´t have to go as often though! We have a day of tests on the 2nd of September which is around Day 100 and you know, it is starting to feel tangible and not just like a date at some point in the future. We are hoping to get away for a little break either before or after but we are still trying to work that one out. So it is pouring with rain here today and it doesn´t look like it is likely to stop anytime soon so we are kind of grounded. Benita has just gone back down for a sleep and I am going to hit the coffee machine I think. I will post a new video clip of Benita over the weekend and the latest photos.

Day 57

Stef is bullying me into blogging this evening, I still can´t really be bothered but he keeps saying that so many people are waiting to hear about Benita and so here I am. I really need some motivation to get me back into the swing of blogging. I have tried in vain a few times with Benita on my lap but she gets so much pleasure out of thumping away at the keys on the computer that I´ve given up trying! We are all doing well and I am feeling so much better. We had such a lovely afternoon together today, it was really precious. We spent the morning in the hospital and the coordination was not that great and so we rushed home making it just in time for Stef to get to work at 2p.m. I was ironing his shirt at 10 to 2 and he was shoving a roll down his throat and Benita was still in her car seat dumped in the hallway and she was quiet but all of a sudden came a very cute Mamamamamama and I thought my heart was going to melt! Stef ran off to work and Benita had a nap and when she woke up she was in great form. She has been almost crawling for a couple of days and today she really went for it. She has a set of plastic containers from Stef´s Aunt which all fit inside each other and she got one of them and hit it ahead of her and then crawled to get it, grabbed it, grinned at me heartily and threw it away again. She played her little game for ages and had such a look of determination about her it was quite uncanny (unheimlich!). I am so proud of my little fighter, she is really something very special! She is, of course, teething like mad, saliva just like a tap running out of her mouth and a bit moany at times but hey, she will just have to put up with it! She is also sleeping a LOT better thankfully which could be down to the fact that we let her jump into bed with us when she wakes in the night. She was SO cute last night, falling back asleep lying across our bed with her head touching me and her feet in Stef´s face! I watched her in the early hours crawling over to her Daddy and cuddling up to him and I have to say, I´m not sure who enjoyed it more:-) The other BRILLIANT news (more seems to be happening than I had realised) is that we got the house which we were dying to get which I mentioned in my last post and move in on the 1st October. We signed the contract on Tuesday night and are very excited about moving. We spent last weekend at Stef´s folks which was restful and stopped off at the new place for a wander on the way home and had coffee right at the lake and we loved it and are so glad that it has worked out! Things are definitely on the up:-) Please don´t read and run, it´d be good to read some of your comments for a bit of motivation!

Day 50!!!

…can you believe it, we are halfway there already! The significance of the first 100 days is that Benita will be examined on day 100 and it should be possible by then to establish how successful the transplant has been. We have a lot of restrictions and medication until day 100 and I can´t believe that we will now be counting down the last 50 days. Benita is doing well and is looking well. Her hair is starting to grow again! We were at the clinic today and the results of her standard blood test were fine and they are happy with her. Her white blood cell count is over 8.000 and she is starting to put weight on again. I am finding everything pretty tough. On the one hand I am just so glad to have her home but she is really hard work, full of energy and a huge sense of adventure. Obviously we are delighted that she is making up for lost time but I just seem to collapse into bed in the evening in the hope that I can get a couple of hours before she is awake again. I don´t know how she can keep going for so long! Her tummy and digestion aren´t the best, especially at night but it will get better and until then we just have to keep going! We are going to Stef´s folks tomorrow for a bit of respite for the weekend and the thought of getting stuff ready to go makes me want to curl up tighter on the couch but it will be worth it. Our other news is that we have been looking for somewhere new to live and are hopeful that we might have a bungalow to rent which would be great if it works out. So time is precious and there is only so much espresso I can drink so although there is lots more to say I am going to call it a night and hope that I feel a bit more in the mood for blogging soon!

The Latest!

Where to start??? My Mum and Dad are out with Benita for a walk and Stef is out for lunch with his cousin and I have a rare few minutes to myself and wanted to let you all know how things are. Firstly the medical side: we had our first hospital appointment in the day clinic yesterday. I found the place depressing but will get used to it like everything else. Benita was examined by the doctor we know and her Hickman was rinsed and she was given one type of medication through it which took about an hour. They took blood samples and then changed the dressing and the whole thing took about 2 good hours so it was bearable! The very good news is that her white blood cell count has gone up to 6.900 which really surprised us. This is probably due to the fact that one of the two drugs she has been taking to suppress her immune system initially was removed about 10 days ago. Fantastic news in any case. Her other levels were all fine too, like magnesium and calcim so she is getting enough from her food. Actually I can´t keep her fed! The problem is, that she is so busy making up for lost time discovering her environment during the day that she seems to think night time is for eating….we are all shattered today! Last night wasn´t so bad but the night before, she wanted to play at 1a.m. and didn´t go back to sleep until nearly 8a.m. I reckon the nurses have been playing with her more in the night than I had thought. Not that it matters though, it is just lovely to have her home and she is coming on in leaps and bounds! Her first tooth is shining through on the bottom which her Daddy is pleased about and she has started saying Mamamamamama all the time and so it makes up for everything else. My Mum and Dad are really enjoying her when she is at her best and make life easier for me when she struggles. It is hard getting back to some kind of normal but we will at some point! So I off now to sterilize bottles and get her medication ready for this afternoon and although she has only been out with my parents for just over half an hour, I am missing her cheeky little face! I will post pictures this evening once Stef loads them onto the computer…

HOME…

…sweet home. Yes, it is nothing short of bliss. I went to the hospital with my Mum and Dad this morning to find a very chirpy little girl. Luckily the doctor came and saw her early and by 10am she was sat in her car seat which Stef had brought with him and after getting her medal for bravery we ran out of the door, popped in to say bye to the docs and nurses in intensive care and jumped into the car. Mum and Dad followed us on the train as the car was pretty packed up. Madam fell asleep in the car and woke up all smiles. Stef had decorated all of the flat with balloons and streamers and all sorts as a surprise for both of us, it was lovely. The docotrs told us not to expect her to remember anything about home and it is hard to tell but I am certainly sure that she is happy to be here, even if she did wear herself out trying to take everything in! So she has crashed out now and I am thinking about following! Stef had to work this afternoon and isn´t home yet and so I am enjoying a few quiet moments…still can´t quite believe she is home…

Day 34

My sister-in-law called me last night with a great story. On Sunday they had been on a church outing which involved walking as a congregation to a different part of the city and then having a service. We are talking Bavarian Catholic Church all be it with a lovely priest! So anyway, when it came to the equivalent of what is the prayer of intercession in the Church of Scotland, the priest suggested that they would have an open mic and whoever wanted to pray for something should come forward. So my wonderful 5 yr old nephew took his 3 yr old sister by the hand and went to the front, was lifted up to the microphone and prayed in front of a lot of people, “Dear God, please make Benita healthy again.” What a little hero. He is not really that courageous and said to his Mum afterwards that he only managed it because he had his little sister with him. What a brilliant story. Well I reckon that our God heard him and believe it or not (and I won´t believe it until it really happens) we are hoping to get Benita home on Thursday, yes Thursday, as in the day after tomorrow. She has done so well this past week and there is nothing much to be gained in staying in the hospital so I am running around the flat getting things sorted! We are getting our baby home….still in shock! I won´t be around tomorrow night as my folks are arriving late but I will post on Thursday with the latest…