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Hey Lara that is excellent news that you don't have to go back to the hospital for 2 months! And also great to hear that she was able to be taken off the zantac too! \:D/
Sounds like things are going really well with you guys, I'm so happy for you :)
I hope her little cold is better by now too...
Katanya, Alana hasn't had the flu shot and her Paed never mentioned that she should get one. Frank and I just got ours (I have a huge red mark from it-ouch!). Though I did mention it to our GP and he thought that she would be to young. But now that your specialist has said something I am going to email Alana's Paed and see what he says. So I will let you know.
Special Child we are doing great (except for this problem I have about not being about to SLEEP!!!!!) Alana is doing fantastic. She has enzymes (1 1/2 caps) before each feed and salt powder once a day. Her dose of enzymes is quite high unfortunately.
So glad to hear the Samual is doing great. Hope he doesn't have to stay to long in hospital for his tune ups.
Yes Lara I would talk to your Specialist about it, as when I rang the GP they told me no it was not given to children under 12. When I told them that our respiratory specialist had recommended it they looked up the book(immunisation guide) and sure enough it had a section on children at high risk and the conditions included CF, which is why I ask. They give half of a normal dose and then in a month they give it again.
We have to wait a couple of weeks as he's back in hospital in a week's time, and I didn't want to risk a reaction before his biopsy.
To be honest another needle doesn't thrill me, but as the specialist said for babies like ours a chest infection is a lot more of a threat than to the average child..
I hope you find out why your not sleeping, is it stress? Because my Mum used to be such a bad sleeper until she resolved things that were worring her. I know when I am stressed I wake up thinking all night, can't turn my brain off. Anyhow I hope you get a good nights sleep soon!
Thanks Katanya for the flu shot info. I must say that it would make me feel a little better if she was able to get one.
I think that my sleeping problem is stress. I simply cannot turn my brain off. In the last 6 months so much has happened and I think that it has affected me more than I like to admit. Its not like I'm sad or depressed and can't handle things. I just can't wind down. And I worry about things more than usual. I think about things that haven't even happened and stress over it. ](*,) I don't really want to resort to tablets.
Oh well, I'm sure as time goes on I will hopefully start to relax. I HOPE!
Iris, I'm not suprised that you find it hard to relax. I think that motherhood in itself is stressful without the added worries that CF brings. Have you thought of using any alternative relaxation methods like acupuncture or massage or reflexology or aromatherapy etc. They're certainly a better option than pills.
Lara it is natural for you to not be able to turn off, I know that my effectiveness with coping has it's good times and bad. People say to me "oh you are dealing with it so well" I think I am dealing with it because I have to, because if I get too down, then what will Felix do? I don't mean that in a Matyr kind of way, but realising that you are needed kind of kicks in that survival mode and enables you to cope.
I wonder if you are going through this too, sometimes when nothing is going on (no Drs visits or tests) it is then that I feel like I am sinking..I know that I have times where I say awake thinking about big stuff and the small stuff.
Is there any way you have access to that councillor still you mentioned at some point?
The suggestions that dachlostar mentioned are excellent, I know if you are anything like me, setting aside "me" time is SO hard, but it's got to fit in somewhere!
dachlostar those are good options. I've always wanted to do yoga. Maybe I should check that out. I work for a health food company and we have a product called Composure, which is suppose to help with anxiety etc, so I have started to take that. I'll give anything that not a sleeping tablet.
Katanya Alana's specialist has given the go ahead for the flu shot. He said either in half or quarter the adult dose. So I'll ring our GP and get it done this week. I'm not thrilled that Alana has to get a needle either. But I do feel some what relieved that she can get it. I would rather her have the needle than a chest infection, as you said.
I can see the councillor anytime, but I really don't want to. But I am going to a dinner on Thursday night for newly diagnosed with CF through CF victoria. So I get to meet some other familes with CF. My mum is coming with me as she looks after Alana when I'm at work on Tuesday and Thursdays. Frank can't come as he is a baker and starts work way to early. I'm looking forward to it, but I'm always shy when meeting new people. I know I won't sleep Wednesday night worrying about it! LOL! Having mum there might help though.
Gosh, I've gone on enough!
Lara that dinner sounds GREAT, what a fantastic support network to enable you to socialise and meet other families affected by CF! I can understand why you don't want to see a counsillor, I'm not convinced it would be the answer for me either, I tend to be able to talk to friends and family anyhow.
Shame that your partner can't go to the dinner but great that your mum is able to come too. Have a great time and hope you meet some new friends!
That is good about the Flu vac, I am having second thoughts about getting it to be honest, and I am wondering if I got it instead, that maybe the antibodies would be passed along through my breast milk? I will talk to the specialist, because a friend told me that they dont prevent you getting the flu anyhow?
Excellent to see Alana's progress!!
You're doing a great job coping (and you too Kat), but there are red flags waving. All this stress and anxiety can put you guys at higher risk for depression. This is a very good reason for you to find the time for yourselves. OK?, very important!!!!!!
*taking off my bossy boots again*
Valerian is good stuff too, Iris - but you probably knew that, where you work!
Kisses
LuLu your not bossy at all. Actually its nice to come on to BB and feel that you have support, I don't always feel that from my friends. I guess they are all preoccupied with whats going on in their lives.
It has concerned me a few times about depression, but I'm very lucky to have Frank as he is a real hands on Dad and is cool with me having time out. He works really hard himself, so he gets timeout by going down to the farm. Tomorrow I'm getting my hair done, so some me time. Yay!!!
I have considered the Valerian. I just want to try a few other things before that. My mum thinks I go to bed to early. I generally go between 8:30-9:00. So I am going to try staing up a little later the next few nights and see how I go.
Thanks!
Alana is a lucky girl having you two as parents, you're both obviously emotionally intelligent people.
YAY! for getting your hair done, I always feel 100% after I have mine done. My hairdresser is a close friend so we get to catch up, but she is also the most BRILLIANT one I know. She always does it exactly the way I want, only better! Man, I'm booking in for next week!
Hi Lara! Have only just read this thread fully, and just wanted to say hi here coz I don't see you in the vic thread much. Sounds like you're doing brilliantly with Alana, she looks so gorgeous and happy. Lindsay has worked a lot with CF kids as a children's nurse, and tells me how hard it can be. Tai Chi would be my relaxation suggestion, I knew someone who teaches it and it sounds great. Maybe I'll get around to it one day, wine and chocolate are what I relax with now, lol.
Alana obviously has great parents, & it sounds like you and Frank are looking after each other too. O:)
Thanks Yvette! It can be hard at times. Not so much looking after her, as honestly thats pretty easy. Its the worrying about her getting sick. The hardest thing I have found is when we go out, I know this sounds nuts, but I stress about people wanting to hold her and smoking. And unfortunately not everyone understands my anxiety about this. I am hoping as she gets older and I get more use to her CF that I will calm down. I don't want her growing up with issues.
I have sorted the sleeping concerns by going to bed later. Stupid I know. You think that I would have realised this myself, but it was my mum. #-o
Thanks again!
Iris I just have to say you have every right to not want people to smoke & hold Alana. It is Huge. My cousin grew up with her parents smoking in the house & they didn't know any better at that time. (you think it sounds reasonable now, but I guess 27 years ago things were different..) anyway when her mum moved her to live with us for a while and there was a no smoking policy in my house, she got so much better. She was struggling and in hospital for around 3 months of most of her life, and once in our house she never went to hospital at all... only after she moved out & in with one of her mum's boyfriends who, you guessed it smoked. Then she was in hospital within 2 months. So, contact with passive smoke must affect them, and maybe gently letting people know who want to hold her that because her lungs are at a great risk its better for her not to be too close to passive smoke. Sorry for the epic, but I want you to know it is okay to be firm about this. O:)
Lara I don't think it's nuts at all worrying about people smoking around Alana or wanting to hold her. I can't stand being around smoke myself, and I certainly don't want it around my kids. You've reminded me of a time I went to a party at my cousin's house, and as soon as she opened the door, a friend of hers I'd never met tried to take Angus off me for a hold. I wouldn't hand him over! I'd never even met her before. I love to hold other people's babies, but would wait for an offer. Usually I'm happy to hand my kids to other people, but when I want to and feel comfortable doing so. If you have a child who is vulnerable like Alana, it would be only natural to be more cautious & protective of her. Some people are a tad lacking in common sense and sensitivity.
We go to bed at 6.30 ourselves! We have a tv in the bedroom and watch it til we fall asleep, which for me atm can be as early as 9.00 some nights. The kids come in and out til it's their bedtime, and we're up and down a bit til they're all settled, but it feels like that's our knock off and relax time.. We've been meaning to try to stay up later & sit in the loungeroom instead. Maybe after the new babies are settled we'll get better at it.
Lindsay says he's happy to talk to you about caring for CF kids anytime, he loves to use his nursing experience & chat about medical stuff. I'm sure you already have heaps of support & good advice, but he's here reading all my posts and taking an interest. If he does start talking to people directly I'll have to get him to create his own forum name. Maybe that way I can find out what goes on in the men only threads, lol.
Thanks Christy and Yvette! And Yvette say thanks to Linsday. I really appreciate his offer and will take him up on it. Maybe he will need his on BB name.
Hiya Lara
It's Lindsay here..........Yvette's DH. I thought I'd better get my own membership, as Yvette suggested........I don't think I'll get much of a 'look-in' sharing hers, somehow :D
I will be pleased to help in any way I can, though as Yvette has said and, as I know from experience, there prob isn't too much you aren't already aware of as regards CF.
No matter..........just let me know. My particular areas of interest/expertise/knowledge etc are all aspects of medicine, anatomy, physiology etc but of course I will gladly help with anything at all at any time, if I'm able to :)
Keep well and best regards
Lindsay
Lara I just peeked in to see what you guys are up to, and I read the part about smoking..believe me I get irrate at people just walking past Felix with a Cigerette!
The thing that IRKS me is whenever I visit the Gold Coast Hospital there is only 1 entrance and there are ALWAYS heaps of dregs smoking out there, and I have to pass through it with Felix, it makes me furious everytime, and I have decided that I am going to print up some flyers telling them about Felix and what them smoking could do to affect him further..I have to do something because I am ready to have a run in with them :evil:
Anyhow sorry to vent on your thread but I have a feeling you'll understand.
Katanya I do understand. Frank and I always discuss this. I have become a smoking nazi and just do not tolerate it at all. And mind you I once smoked. Yuck!!!!!
Monash hospital is the same. I think that it should be definitely banned from outside of entrance ways to hospitals and even shopping centres.
Being an ex-smoker (2 1/2 years) I realise how selfish I was. I had no concerns for what it would do to others, like Alana and Felix. I must admit I do have some guilt about it. I know how hard it is to give up so I certainly don't want to make people feel bad.
Hey Linsday aka Bloke D'Yvette. Thanks very much for your interest in Alana. It can be a relief sometimes when somebody knows about CF so you don't have to explain everything. And feel free to ask any questions aswell. Frank and I have an open policy in regards to Alana's CF. I don't want her growing up feeling embarrassed or ashamed of it. We figure if we talk about it freely then Alana will know that its not that big of a deal. IYKWIM.
I think the thing that annoys me about these people is they are usually patients and they seem to have no regard for their own health let alone anyone elses..My DP just gave up smoking and he was ALWAYS a very considerate smoker, NEVER smoked around me while pregnant, and NEVER around Felix, even before that he always smoked outside..I guess I am just used to him and think everyone is like that..obviously not..
The worst thing is there is a courtyard inside the hospital ground that they obviously created to try to deal with the issues, but still they perch out there..I just can't go to them now because obviously it would make the problem for Felix worse..so I thought I could write it out and hand out the flyers..they'll probably stub their cigerettes out on it but at least I will feel better..:)
I was the same, I like to think, when I did smoke. I gave up in 1993. I always tried to keep away from anyone whom it might offend and was very mindful of it doing so.
As an ex-smoker, I'm now so anti-smoking that I find it intolerable to be anywhere near smoking. I guess it's only through quitting that one can fully realize just how dreadful it is to be in the company of smoking.
As for anyone with a chronic and/or acute respiratory issue, of which CF certainly is, it's an absolute no-no for them to be anywhere near to anyone smoking or smoke of any kind. Some people will just never get it and, even if they did, would be far too ignorant/arrogant to be mindful of it anyway.
If you think you may have over-reacted, you should see me!!
cheers and best regards
Lindsay
I'm the same with my kids. If we're out somewhere and someone lights up, I nicely ask them to put it out or move right away.
Apart from the whole passive smoking thing, Zeke still has a stridor (sp?) from his first heart surgery (the surgeon nicked a vocal cord with the scalpel and he has a paralysed vocal cord).
I was out at the park yesterday, and there was a mother there with her baby son smoking away while she held him. It's just not worth the risk IMO.
Smoking - blergh! I remember the days of working in an office with a chain smoker sitting opposite, and wondering why smoking was allowed in restaurants. Now my dreams have all come true, almost. Pubs are next (now that I rarely go into one). Next stage entrances! I hate walking past the smokers to get into any building anywhere, shopping centres, hospitals, office buildings. I hold my breath, but my baby can't do that. And don't get me started on the buts! I've had guests at my house who smoke, and given them an ashtray for outside, and still find buts in the garden.
But hospitals, that's just obvious isn't it. A letter to the hospital perhaps Katanya - let them be the ones who have to do the flyers. Sounds like a good Current Affair story....
Oh, and hello to the new guy....
Just wanted to give an update on Alana's weight. She put on close to 1300g in two months, so she now weighs 8120g. I am thrilled and so will her paed. We see him on Monday. I bet we have another two month app. Woo Hoo!
Great news Lara!
Lara that's really good news... I just checked out your little blossom's web site too, and may I say that she is an absolute stunner with all that dark hair!
Yay Alana!!! Just had a look at her website too Lara, she looks like a little doll :D
Thanks! I like to think she's a stunner too!LOL! Actually we have been told so many times she looks like a little doll. Its all the hair.
YAY Lara - that is fantastic news!!! \:D/
She's gorgeous! Love that hair too! WOW!
We saw Alana's Paed today and he was thrilled. She is now in the 50th percentile, which is great considering when we first went to him she was in the 10th. It was a quick appointment and we don't have to go back for another 2 months! YAY!
Also saw her Dietician and we are now starting on meat. For some reason I feel a little nervous about this. I guess its that "am I doing this right" thing. She also wants me to feed her solids first and then her formula. Don't know how Alana is going to like that. Poor Mum she will have to deal with the first feed like that tomorrow. I'll be a work.
Anyway all is good.
That is awesome news Lara! Congratulations on the jump! And I had a quick squizz and I have to say she's as cute as a button, I love all that hair! I hope the feeding goes well!
*hugs*
Cailin
That's great Lara. Hope the feeding goes ok. It's a tricky one with the bottles & solids. We kept trying it both ways. Bottle first means not room for as much solids, but then if they're thirsty they won't settle enough to have their solids til they've had some bottle. And it's pretty tricky convincing a baby to have just a bit of bottle, or just a little water instead. Good luck with it. Btw, I've never been able to get my kids to use a sippy cup, but the ones with a straw are great. They seem to get the idea of sipping through a straw really easily, so it's great for little sips of water.
Alana is just doing SO well, it's great to hear! 8120g :shock:
best of luck getting her to eat the meat, hope you have better luck than us ;)
I looked her website, she really is the most adorable little girl, I think it's more than her hair, she has a very doll like face too!
Oh thanks Shannon. It was lovely to read your post. And please don't apologise for not posting sooner. I fully understand how difficult it is for people to respond to hearing news like this. Its even harder for people when they are standing right in front of you.
You just have to find something positive. I have never lived my life dwelling on things and I won't start now. Frank and I made a decision very early on that we would just get on with it and I like to think that that has helped Alana do so well.
But don't get me wrong I have my days and I worry alot about Alana, but I just have to live day by day. One thing Frank and I have found the most important things is dealing with the now. We don't ask about treatments or how Cf will affect her in the future. When she gets there we will ask the questions. It keeps us sane.
Thanks again Shannon it has meant alot.
Lara, you're an anbsolute trooper, and She's so very lucky to have you as her Mummy, your both blessed to have her.xx :hug: 4 u both
Lara- how rude of me not to visit this thread until now. It is so good to hear that Alana is doing well, and good to know that she is the same weight as jessica and 3 weeks younger as well.
I also wanted to tell you how lovely it was to meet you, funny I kept thinking you looked familiar but I think that was because I had seen pics of you with Alana on the website, so I did know what you looked like.
Anyway I will be sure to pop in here more often to keep up with Alana and hope she manages to escape the colds and yuckies that are going around.
Best wishes Michelle
Well Michelle its so funny that you had posted this, as I was just about to post about Alana getting her first cold since being diagnosed. I must say Frank and I are little stressed about it, but trying to not blow it to far out of proportion.
She started to get abit snotty yesterday afternoon, but didn't seem to bad. She went to bed and then every 1-1/2 hours she woke up crying. She was so snotty and it was making her cough because she was swallowing it. Usually if she has any mucus she can poo it out, but she is badly constipated, which is a whole other story. Lets me say there was not much sleeping happening here last night. Anyway her paed is away until Monday, so I was able to speak to the CF nurse, who said to get her on antibiotics (luckly we have prescriptions already-just incase) and she will be coming here tomorrow to check on her. She hasn't wanted to sleep all day. But I think that has to do with lying down making her feel worse. She is at the moment asleep on the couch with Frank. The only problem we have is that we are really struggling with getting her antibiotics down. She is absolutely cracking it. hopefully the CF nurse can help there aswell.
Anyway she is also constipated, which is really concerning me, as it has been going on to long. We have her on coloyxl drops and they are doing nothing. I am worried that she has a bowel problem, which could be associated with the CF. I don't know. Her paed is aware of it and i have emailed again with my concerns, but won't hear back until next week. Will let the nurse know and she can decide whether we need it checked out asap or if it can wait until next week.
Okay! Sorry for the long post, guess I needed to get some stuff out.
oh thats really hard *hugs* Its so hard to see them unwell & knowing that for your special girl being sick has a whole new meaning. & with constipation that doesn't help. I hope the CF nurse has some help for you!
Whenever Matilda gets sick(we've had two bouts of tonsilitis in the past few months) she's up all hours & struggles to lay down with her breathing. Have you propped up one side of the cot mattress? I don't know if you can, but when Matilda was smaller & not as mobile I would put a rolled up blanket at one end of the cot to elevate her head to help keep the snot at the right place ykwim? & she always sleeps better on the slope. HTH
Awwww, poor Alana!! I hope she isn't hit too hard with the cold and she manages to get some better sleep in tonight.
I hope that you are able to get some good advice from the nurse when she visits.
Take care.......