Alana and Cystic Fibrosis

Well some you will already know that Alana was diagnosed with cystic fibrosis at 7 weeks. CF is a genetic condition, which is passed on by both parents carrying a CF gene. CF affects the Lungs, Digestive and Reproductive systems. There is no cure for CF.

I'll try to keep this shortish LOL!

We received a phone call from Monash Hospital from their genetic councellor saying that Alana's heel ***** test (that was done when she was born) result came back showing that she may have CF. This test basically showed that she carried one gene of CF. I had heard of it, but had no idea what it was. DB had never even heard of it. As you could imagine we were in complete shock.

We had to go in the next day (Thursday) to get a sweat test. This would test the level of salt in her sweat. People with CF have higher content of salt in the sweat. We unfortunately found out the next day that they did not collect enough sweat and the test would need to be redone. They also wanted a poo sample to test the amount of fat in her poo. As CF affects the Digestive system, food may not be digested properly, coming out as fat in the poo. But it could not be done until the following Tuesday. I was devasted. We had to wait another 5 days to see whether our precious daughter had this life threatening condition.

Tuesday came and we did the sweat test. The genetic councellor came to talk with us also. What I thought was just a friendly chat was actually her breaking the news to us that they retested her bloods again and infact she carried two of the CF genes. Which basically meant she had CF. I felt like someone had just ripped my heart out of my chest. I just broke down in tears. Db was lost for words.

Alana now has many new friends-her CF paed, dietician, Physiotherapist and her two favorites are Racheal and Sarah, the mobile nurses that come to our house to visit.

Alana is doing great. She takes enzymes to help her digest her food, which she has to take before every feed in apple puree. And we do physio on her lungs everyday, which she loves. It makes her go to sleep.

I'll admit it has been hard some days, especially at the moment. I wonder why this had to happen to us. DB felt really guilty in the beginning, as he felt that it was his fault that Alana got CF. But when her face beams at us with a huge gummy smile, we realise that Alana is the best thing we ever did in our 30 years of living.

Hey Lara,
I'm not sure if you noticed, but you did get another lovely response to your post, unfortunately it has dissapeared along with the rest of Jan 10 :(
I'm not sure who wrote it, but hopefully she will respond again!

I hope all is going well with Alana atm.
You are doing such an amazing job Lara, please never doubt that you are a wonderful mother... Alana is a beautiful and special little girl, and the luckiest in the world to have you for her mummy. :)

I have to second that! Alana is indeed a beautiful and special little girl!!! She's very lucky to have such a wonderful and caring Mummy!!

I will also re iterate that your daughter is absolutely adorable, she is so gorgeous, so much hair... Did you have much heartburn!?
I did & Maddison was very hairy!!!

You are all very, very blessed to have each other, both yourself & Dh to have such a special & adorable daughter to fill your life with so much joy & also her to have loving Parents...

Best of luck, with all the trying times you will have ahead, but the reward will be so much sweeter.

Tracey I did have Heartburn, and really bad! I ended up on prescripton medicine to ease the pain. I could only sleep upright on the couch, couldn't eat certain foods and could only drink water.

My Mum kept saying, it's gonna be a hiary one, as I have never had heartburn ever in my life at any other stage... Only about last 4 months of preg...
Maddy had dark tufty hair on her ears & shoulders as well as heaps on her head!!!!

Maybe it is a TRUE wives tale???

Best wishes & luck!!!

I had shocking heartburn as well and was on prescription medication (you probably remember Lara!). I expected Jacob to born with a full head of hair as a result LOL but he wasn't particularly hairy! He most definitely had hair, but not as much as I expected!!

Lara,

I have just found this thread and I just wanted to say what a beautiful little girl you have! (I checked out her site too). I followed your pregnancy in the PAML forum so it is nice to see Alana's little face. O:)

Like Ambah said, I hope things are going well for you atm. I would imagine that dealing with the CF is not always easy for you, but I can definitely see why having Alana is the best thing you ever did and how she would make it all worthwhile.

What a sweetie!

Lara
I have just discovered this & after looking at photos of Alana she is just adorable. You & your DB are so lucky to have such a beautiful daughter. Life will not always run smoothly for you guys, but the rewards she will give you along the way will make things so worth doing. Keep up the wonderful work & enjoy being very proud parents to a very beautiful little girl. Children seem to make it all worthwhile in my eyes, they are the best thing that any of us can do.

Lara - Can I start off by saying that Alana is a cutie!!

I grew up with a brother with multiple challenges CF being one of them and can I just say that he was the most wonderful kid ever. He ended up dieing at age 3, not for CF related reasons but our family doctor still says that if he had of been born even 5 years later he would still be here with us due to medical advances, who knows though.

I have to say that having him in my life has made me who I am, my favorite and best memories of my childhood are of me helping mum and dad with Liams daily physio, he just loved it and I thought it was great to.
My mother has since Liams death (17 years ago) been fostering children on both long and short term basis, each of the kids are just so individual both in their needs and definately personalities.

You are very blessed to have been given the oportunity to have someone like Alana in your life! It won't always be easy, or stress free but all you have to do is what you are already doing, Love her! I have always belived that we are only thrown what we can handle. Enjoy her to the max and know that you and your partner have done nothing for this to happen to little Alana, there is no time for guilt in these situations, all it seems to do is take away from experiencing NOW. (That is something that my mum told me a few years ago that she wished that she had worked out while Liam was a bub so that she could have just gotten on with enjoying him and not stressing the unknown.)

I'm sorry for rambling on, I will leave it here. If you do want to talk feel free to email me at itscindyb@hotmail.com
I hope I have said nothing to offend here.

Hi Lara

Alana is such a gorgeous girl! I had a bit of heartburn and Felix had a bit of hair..maybe there is something in it?
I can only imagine you have been through an emotional rollercoaster over the past months. I have had only a glimpse of what you may have been through with Felix's respiratory issues, I think the unknown is really scary, and sometimes I think I wish I just knew what is going on? Then I think the opposite, every day is a risk, there are many, many healthy children that have accidents. No matter what your child is diagnosed with or what the future could hold..none of us really know that for certain! We just have to love them every day and pray they will grow up heathy and strong.

I think your attitude is wonderful, but even the strongest person has their moments, never be afraid to ask for help when you need it. I know that you have a big group of support here on Belly Belly :grouphug: , just wanted to add my name with the others and say I think about you guys alot.
I know that Alana sure picked the right parents when she joined this world!

Hi lara, I just wanted to let you know that I totally understand what you are going thru. I have a very special child my self. Samual, he is now 4 years and 11 mths old turning 5 on the 6th of Feb this year. At 21 days old we were also admitted to Monash Clayton under Prof Freezer. Samual was admitted due to failure to thrive, at that stage neither michael (DH) or I had any idea what CF was about. Or that either of us were carriers. we also had to have the sweat test repeated due to the the collection not being enought the day before. Samual at 28days old was diagnosed with CF. It was a real struggle at the beginning with learning everything when to give meds, when to do the physio and all, but it is just a part of life know and Samual is doing really well. We have found some really loverly friends in at Monash and a every one is just fab and really loving. You are more than welcome to communicate with me at anytime. Know that you are not alone and I am here if you need me.

I will endeavour to send you Samual's story in the next few days. I am however in the middle of moving house so If you dont here from me for a few days please dont stress.

Take care and give your darling baby a huge hug from us.

Nola, Michael and Samual xxxxx

I agree, Alana is gorgeous. My step sister is 8 and has CF. I havent actually met her. Mum only been married a year and I havent been up tp sydney to see them yet.
About the heart burnthing, I had shocking heart burn and reflux, and Ashlea was bald! She only had really short hair up until about 18 months, and its blonde as blonde so you could hardly see it! I nearly cried when she turned one and couldnt wear her hair in pigtails!

Thankyou everyone for your lovely words. Its nice to know that people are thinking of us and that we have friends here on BB.

Nola thankyou for posting. It is nice (if that is the word to use) to hear from someone else that understands. I look forward to hearing Samual's story. Have you moved to Pakenham or moving from? We live in Narre Warren. Hope your move went well. Is Samual starting school this year? I agree with you on Monash. The CF team there have been faultless. We see Dr. Armstong and he has just been great. I hope that this not to personal, but how have you dealt with wanting to have another child? DB and I really want another baby, but of course there is that fear of that child having CF. When we got pregnant with Alana all we were concerned about M/C, having had one before. Now its the fear of CF.

Cindy please know that you have said nothing that would offend me. In fact it was lovely of you to post and I agree what you say. We decided that guilt was not going to help and nor was wondering why this had to happen to us. We didn't want to waste time on that. I agree that we are only given what we can handle.

Katanya its funny but I think about you and gorgeous Felix alot too. I hope that you get some answers soon and that you can get some relief. And I agree that you never know what could happen, but you can certainly make sure that yours kids know that you love them everyday. And by the way it sounds as though Felix is also very lucky in the parent department. Though maybe we are the lucky ones!

Iris - just checking to see how you were going with Alana? I've read your updates in the 1-6month trimester on weight gain etc... how are you going with her development & physio? Is she trying to roll over yet during the physio? I can imagine that would be frustrating. Does Alana need a nebuliser at all?? I just remember my cousin using one for 20 minutes twice a day and how hard that would be with a baby. I just thought I'd let you know I was thinking of you & Alana & your DH.

Christy thanks for thinking of us.

Alana is doing really well. So far the physio has been a breeze. We find we do a feed, bath and physio routine at her last feed for the day. Its worked really well. She's satisfied from eating, then nice and relaxed from her bath, so by the time we get to her physio she either falls asleep or close to it.

Alana doesn't use a nebuliser yet. Not sure when they start needing a nebuliser.

But her Paed is thrilled with how she is going. I guess his main concern was getting her meds right and her putting on weight. And we have got both those going well, so we are looking good!

Just tried to post and something happened :(

Glad to hear that things are going well for you guys, the physio sounds like a great settling technique! Glad to hear her weight has been good also!

That's great Lara, she sounds like such a good girl!

Hi Lara,

That is wonderful to hear that Alana is doing so well!!
What an amazing little girl... no wonder the paed is impressed!
and the physio sounds like a great settling technique indeed! :)

Lara
it is wonderful to hear Alana Daisy is doing so well. What a gorgeous girl and I love her beautiful name.
I don't have a special child or with a child disability but I worked in Paed. ward as registered nurse for over 10 years. Special Children have the ability to exceed our expectations over and over (like Samual) and bless us amazingly.
We have an adopted son who is one of our greatest blessing and also an angel daughter ~Charlotte Rose~ who was born still 1st Sept. 2004. @26wks.
They coudn't tell us why she died - she looked so perfect. We will just never know.

Wishing you the very best in life for your precious daughter Alana Daisy
may she continue to bring you love,laughter and much ,much happiness
Enjoy every minute of her. She is adorable. I will keep you in my thoughts and prayers.

Just thought I would give an update.

Alana's last weigh in was a week ago and she put on 720g in 4 weeks.
Which is fantastic. Her paed said that she is in the 25th percentile for her height and weight and he was thrilled.

We also think we have won the war with the 4-5 poos per day and her terrible nappy rash. We had tried everything. We were just going to put it down to her CF and not worry about it to much. But we changed her formula from NAN HA to Heinz and what do you know, we are down to 2 poos a days for the last two days. Her nappy rash is almost cleared up by keeping her out of nappies as much as possible and slapping every cream and powder that we have on her.

Her next weigh in is the 18/3 and I can't wait to see how much she has put on. When we got her weighed last week the Health nurse said that she looked nice and chubby (she had never seen Alana before). I beamed from ear to ear. It was the first time a stranger had ever said it. Most of the time we get that she looks so small.

Thanks everyone!

Hey Iris that's fantastic news! Well done Alana, keep up the good work! We love 'em "nice and chubby".

Hey Iris,
Things are sounding good, hope you are enjoying all the precious thngs that you do together. Just thought that
i would pop in and say hi even though I have not a child with special needs/illness, I do have a younger sister who has an intellectual disability and is mildly autistic. And the other reason was, have you tried canestan cream (thrush cream) on Alana's bum? I was recommended to do this with Jack, then put some curash powder over the top. It works wonders!

Take care.

I forgot to mention... the thing that worked really fast for my kids' nappy rash was BOZ ointment. The midwives put me on to it in the hospital, and it clears it up really fast because of the Zinc content.

JOJA canestan is one of the creams that we having been slapping on. Actually this is about the 6th time we have tried it. I guess with the less poos, it has had the chance to work. I am also putting a cortisone cream for the redness, then a zinc based nappy rash cream and then powder. And pop in and say hi anytime.

MistyFying where do you get this BOZ ointment and is it very expensive?

You can get BOZ ointment from good pharmacies up here in Queensland. It's not real expensive ... the last lot I bought was under $10 for a pot that lasted a whole year of botty business

yay for Alana,

I was wondering how she was going. She is a very special girl with very special parents.

How are you both going? I often think of you 3.

:

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Just thought I would give an update.
Alana's last weigh in was a week ago and she put on 720g in 4 weeks.
Which is fantastic. Her paed said that she is in the 25th percentile for her height and weight and he was thrilled.

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Lara that is SO fantastic, trying not to compare but that is what Felix has put on in 6 MONTHS! So you can feel EXTRA proud, you are doing such a great job.

Good luck with the nappy rash, sounds frustrating! My favourite rash cream is Bepathen, it is amazing!

I am so happy for all of you Lara, and how wonderful for a stranger to notice how nice and healthy Alana looked. Great to hear the nappy rash is clearing too.

Love

Thanks everyone!

Katanya we feel really lucky with how Alana is going. Especially as we know that some CF bubs have alot of trouble with weight gain and have to have time in hospital. I'm sure Felix will put on the weight, especially now with the help of the dietician.

Rose we are doing great. Alana is getting so big and she is learning to do new things all the time. It won't be long before she will be able to sit. I had her sitting without help before. She only lasted about 10 seconds before falling to the side, but it was so cute.

Thanks MistyFying. I will have a look for it. $10 for a whole year, you can't go wrong with that.

Yay for Alana!!! =D> That is so great to hear how well she is stacking on the weight!!!

I'm so happy to hear that you guys are all doing so great! :D

Well Alana has had another weigh in and put on 450g in two weeks. So she now weighs 6815g. I was so happy!!! I will have to see on Monday when she sees her Paed, but I'm sure she has gone up another percentile.
The fatter she is the better it will be for her to fight infections. And with the flu weather coming up, DB and I are getting a little nervous about colds etc.

She is eating like a machine. She is having around a litre of formula a day, as well as two lots of solids. I was to scared to feed her to much solids, but her dietician said let her have as much as she wants. Her mouth just keeps opening.

Anyway will update on Monday after we see the Paed.

Thats fantastic news!! YAY for weight gain!!

That's awesome, Lara! WTG Alana!

All the best for Monday.

That is wonderful Lara!!! Alana sounds like she is doing SO well!!

I met a few other kids in hospital with CF, in one girl's case she was about 14 and had a lung infection, and she was the smartest cookie you've ever met, she was talking to the nurses about career choices, they were suggesting a entertainment job because she had the gift of the gab (an understatement!!), I can understand why winter is worrying you but Alana sounds like she gaining plenty of fat stores up just in case! Can I ask your secret? ;)

YAY Lara, that is wonderful to hear! WTG Alana! \:D/

I hope everything goes really well for you both at the Paed today!

Well Alana's Paed was thrilled with her. She now is sitting between the 25th and 50th percentile. So considering when we first saw him she was barely at the 10th, she is doing fantastic.

She has also been taken of one of her meds, Zantac. Due to thinking that the change of formula helped with her many poos, he said we can take her of zantac and sees how she goes. Hopefully it works because it taste awful and poor Alana gags everytime we give it to her (twice a day).

She has a little cold, but it has not affected her lungs. I feel a little bit stupid as I she has been breathing slightly heavier since Saturday, but didn't think it was a cold as she has been so happy and didn't seem bothered by it. When she had a cold a 6 weeks, she was coughing and was pretty miserable. So now I'm nervous about it. I've taken her temperature and its fine. I said to Frank that we won't give her a bath as I don't won't her to get cold and have wet hair. I hope I'm not overreacting.

So we don't have to go back for 2 months!WOOHOO! I hate going to the hospital. I said to Frank that when we walk into Monash Hospital and smell that hospital smell, I automatically get this nervous fluttery feeling in my stomach. My anxiety level sky rockets and it takes me hours after to calm down. But 2 months!!!!!!

Lara that's fantastic news. Well done Alana!

I know exactly what you mean about that "fluttery feeling", and all I can say is that it does get better with the passing of time.

Hope she continues to do well, and this little cold is over before she knows it.

Hi there Iris,

I was just wondering How Alana was going? She is coming up to 6mths now if I am correct.

Hope you and your family are well.

Samual is doing really well and has not been in hospital for a while now. Will prob be in around july for a tune up all going well.

Give Alana a huge hug from us all

What meds is Alana on? (Just out of curiosity).

Hi Lara

it's so wonderful that she is going off one of her meds, and that everything is going well! lucky you not having to back for 2 mths!!

I was wondering if Alana is going to get the flu vacination? felix's specialist said we should get it? apparently children at high risk have it in 2 doses..i just wanted to see if she'd had it and whether you had any effects?