Our Pal - Karah D

Story written 2005

Karah was diagnosed with Asthma at 6 months of age. She was given inhalers to take all the time, also steroids on occasions.

Then one year when Karah was about 7 she came down with pneumonia. Karah is 12 now and has pneumonia almost annually. Her Asthma quite often develops into chest infections, which develops into pneumonia. She has a constant infection called Haemophilus, which is proving very hard to cure.

She is under the care of numerous specialists and is due to go into a hospital in Southampton to be monitored and treated 24/7.

She is in hospital frequently and most recently she had an escorted emergency into hospital while we were on holiday. That was very frightening one minute you think her condition is improving and the next she has a very severe attack. We have a nebuliser at home and a physiotherapy breathing machine. She has to have a wheelchair on shopping trips now. We have to be in and out of a shop because Karah also has epilepsy therefore cannot stand the lights in shops. The epilepsy was only diagnosed in September 04. She takes medication for this as well.

Karah has home tuition 3 times a week as she cannot manage full time school. Unfortunately she has lost touch with a lot of her friends because they can’t handle her illnesses or in case she has an attack. She gets very bored. We go out as much as possible with her younger brother but are limited to where we go. She likes to participate in outdoor activities but struggles and quite often sits on the sidelines. This upsets Karah.

Whilst on holiday in Devon, Karah went horse riding. She absolutely loved it. So we are looking for a horse riding school near home. When I read about your Post Pals site I thought what a good idea, Karah can actually talk to people in the same sort of situation that understand what it is like to live with an illness. As we speak we are awaiting a date for when Karah next is being admitted into hospital.

Update 20th November 2007

Karah had an appointment yesterday at the hospital. She is going to be admitted next week sometime for a couple of days initially. If her SATS are bad and carbon is high in her body, she will be transferred to Southampton respiratory unit. Last night she had a really bad attack and i had to take her to casualty where she had a nebuliser and oxygen. She has had a really bad pain under her ribs on the left and a burning stabbing pain in her left shoulder and the doctor said she has pleurisy. She is home for now and we are just waiting for the specialist to ring with a bed for her. In the meantime, if she has another attack and is ill at all today, i have to take her back. It’s now lunchtime and she is still in bed and i’m letting her sleep as much as possible.

I hope all of you are well and looking forward to the holidays.

Update 2nd November 2007

Karah won’t be going until Bureseldon House until after Christmas now.

Update 30th September 2007

We are still awaiting a date for Karah’s admission to Burseldon House which has been talked about on and off the past few years. We are hoping it is soon.

Karah, her brother and sister are all in the St Johns Ambulance Brigade and we all love it.

Update 10th September 2007

Karah will hopefully be starting a part time college course in photography in January. She loves anything to do with photography!

Update 30th July 2007

Thank you to everyone who have sent Karah gifts and letters, she loves getting them.

Update 2nd July 2007

Karah is continuing to have chest infections. She was absent from her lessons, which she has in the library, for about a month. She had only been back a week when she picked up another infection. The specialist has increased her epilepsy meds because she is having absences still and she has to have another EEG. Karah had a hospital appointment on the 18^th of June and was kept in all day for x-rays, ECG and blood tests. She was very brave as she hates needles, but in the end she wouldn’t let me go in the room with her to have it done, so she was really brave. The amount of times we have had to leave hospitals until she has calmed down.

I would like to take this opportunity to thank everyone, especially Kate, for all the post. I know Kate is ill too, so thank you very much for making the effort. Good luck.

Update 4th June 2007

I have lost count of the amount of posty Karah has received this month so i would like to say thank you to everyone that has sent something. Thanks for the postcards too.

Update 10th May 2007

We came out of Southampton hospital with Karah today. Well, you know when they say trust your mothering instincts? Mum knows best! I have been telling the doctors for years that Karah stops breathing in the night. Now it has been proved. The machines were bleeping every few minutes. Every time she dozed off they would bleep. Sats should normally be above 96 and Karah’s were between 89 and 93 all night. Her pulse should be 80-90 and it was going from 65 to 115 and that was on a good night. So, we have to wait until the doctor writes to us to see what to do about it. We came back home worn out.

Update 2nd May 2007

Karah is still having the chest infections and ear infections. She is going into Southampton hospital on 9th may, initially overnight. The doctor thinks she is stopping breathing. She can’t walk far without discomfort and is out of breath a lot. She sleeps quite a lot and doesn’t have much of an appetite. When she does have an appetite, it’s usually for junk food. She has different cravings on a weekly basis.

We are still battling with the different NHS counties on who is going to pay for her to go to Burseldon house. Both Poole and Southampton are appealing against last year’s decision which was Poole not funding it. So, we are still waiting to hear. It is vitally important that she goes to Burseldon house, because as there doesn’t seem to be a cure for Karah, she needs to learn to cope with it and try and live a normal a life as possible.

Karina is under the same specialist as Karah now for her asthma and migraines; she is also a very anxious little girl and is seeing a counselor. It would be nice to take them all away for a while but we need to stay near a hospital.

Thank you to everyone for sending posty to all of my children. They loved the valentines’ cards they got.

Karah is really into photography and is going to be doing a couple of hours work experience at a photographers. She is getting into Tarot card reading and is quite good at it.

Update 12th April 2007

Karah had appointment at Southampton hospital today. The doctor wants her to be admitted to Southampton as soon as possible, hopefully within the next 2 weeks. Karah’s breathing is stopping during the night which in turn zaps her whole energy throughout the day. She is having difficulty catching her breath all the time.  She has had 4 lots of steroids this year already and numerous antibiotics. Although the steroids help her to breathe, they do make her put a lot of weight on unfortunately. She has had her epilepsy medication increased and uses a wheelchair quite a bit. We are currently trying to get a bigger house or bungalow so life is easier for Karah. She gets so out of breath going up the stairs.

I would like to thank everyone for the post they have been sending to my children, they love getting their very own post.

I am sorry to hear about the children that have lost their battles with life. I feel so sorry for their families. I’m sure their little angels were sent here to touch the lives of their families and bring joy to them for the little time they were here. They will be looking down on their loved ones and are still very much around them. God bless them all.

Update 15th January 2007

Karah has a chest infection that she has had since before Christmas, as has Karina. Karina hasn’t been to school since November, and Karah hasn’t had her home tutor since then either. We actually had to take Karah and Karina to A&E last night because of their breathing and they have been put on more antibiotics and steroids. Kieran has been on steroids too but is much better.

Thank you to everyone for all of your kind letters, cards and gifts and for not leaving Karina and Kieran out. I really thank you for that.

Happy new year to you all and i hope it’s a healthier one for everyone.

Update 22nd September 2006

We are still waiting to hear when Karah is going into Burseldon House in Southampton hospital. She has been put on montelucast for the asthma so we will see if this helps. Karah isn’t very well again; she still has an infection that she has had since February. She is 14 now and is a typical stroppy teenager!

Thank you so much to you all for sending Karah, Karina and Kieran post, it really cheers them up.

Update 6th June 2006

Thanks again to everyone for Karah’s posty this month. We have just been on holiday for a week to Weymouth, it was great, although the kids wanted to spend money all the time! Karah has a continuous chest infection I feel so sorry for her.

Take care all of you, from Karen (Karah’s mum)

Update 5th May 2006

Karah is struggling a bit at the moment she has ear infection and her chest is brewing for another infection. So she hasn’t been to school lately. There is a lot of pressure at the moment because it’s her options year at school, but because she only goes to school for 2 hours a day when she can I have to try and organize things to teach her at home.

Apart from that the doctor at Southampton is trying to get Karah into a hospital where she can be monitored 24/7 for a while. So we are waiting to hear about that.

Thank you everyone for sending Karah letters and cards and gifts almost daily. She is so chuffed when she gets things just for her in the post.

Thank you, love to you all, Karen.

Update 31st March 2006

I just want to say thank you to everyone that has sent Karah cards and gifts and especially post cards. She is getting something almost on a daily basis. Also thank you to those who are sending things to my other two children. They are so good and understanding when it comes to Karah’s illnesses, they just sort of get on with it. We go to hospital equipped with food and toys to keep them occupied. They know we can’t really do the things that most children do and with Karah being in and out of hospital lately it’s just as well they are laid back. Don’t get me wrong they all fight like cats and dogs though! They both have asthma too and are migraine sufferers. Karina has to have an MRI next week because the medication for the migraines isn’t working too well. However I expect she will take it in her stride as usual.

Karah is on more medication including horrible steroids for the chest infection, so isn’t feeling too good still. The damp weather doesn’t help. If she could fly I would take her to a warmer climate for a while. We have a hospital appointment everyday next week except Tuesday, so I need to keep everyone entertained. Especially as it’s the Easter holidays.

Karah is having fun making cards (truth be known so am i) and loves reading, she is into “Charmed” at the moment, the 3 witches. She also loves watching “The Bill” which she watches on tv gold. She also likes make up. I don’t often wear it so she can’t pinch mine; therefore I have to buy hers for her.

Thanks to you all.

Update 7th March 2006

The steroids she has been on don’t seem to have worked that well. She now has a severe chest infection and has to have regular nebulisers, so I’m afraid we have been backwards and forwards to hospital and the doctors for a while again.

My mum has got her into knitting so they are having a race now (shhh but I think my mum is winning) you can’t talk to Karah or watch her while she is knitting though, it’s so funny. She sort of growls if she catches you watching.

Anyway thank you to everyone that is thinking of her, it cheers her up no end when she gets posty.

Update 28th February 2006

Karah has been put back on steroids at the moment, and is very tired all the time, her epilepsy is more noticeable but I think that’s because she is tired. She was doing really well going to school for 2 hours a day, but has had enough for a little while until she picks up again. Thank you everyone for your posty, she waits for the postman to come every morning. It really perks her up when she gets really lovely cards that people have made themselves, Karah has made a couple herself and they’re good :o) She has got a letter or card almost daily this month, so thank you everyone.

Karah got a huge box of Christmas presents from her post pal Karen, thank you Karen so much for all the presents. Karah was so chuffed and exited she couldn’t wait to open the box!

Update 31st January 2006

Thank you to everyone that sent all of my children cards and presents. It made Christmas very special. Thank you. Karah received lots of presents and cards and is still getting lots of cards and letters, at least 3 days a week.

Karah has unfortunately had chest infection on top of chest infection and has only just managed 2 hours at school this year. She has also given me the flu so I am not happy at the moment! Never mind, at least I can empathise a little bit with Karah.

Update 28th November 2005

Karah has been to the Doctors 3 times in a week with one infection after another.

She is getting lots of posty again and emails. Thanks to everyone for taking time out of your busy lives to write to Karah. Also to the people who write to Karina and Kieran – they love getting post, Thank you.

Update 22nd November 2005

Karah isnt very well, she hasnt been well for a few weeks now. She has seen the doctor 3 times in the last week. She is feeling so sick with all the stuff on her chest and medication.

Update 9th November 2005

Karah doesn’t seem to have been getting many cards or letters at the moment.

She isn’t very well again she managed a few hours at school last week but she exhausted herself. She has a throat infection and is having more absences. Karah is also having quite severe headaches and is sometimes sick. She is a bit chirpier today however and hopefully she will get over this bout of infection quickly.

Update 18th October 2005

Karah had a check up today. Unfortunately it didn’t go to plan. I thought Karah was a bit better after the last chest infection. She had been quiet for a few days, which you think I should have realised by now that isn’t a good sign for Karah. The Dr did a lung function test and it wasn’t very good, Dr needs to increase all of her inhalers and antibiotics and she needs more regular checkups. She is also still having fits (absences) despite being on a high dose of epilim. She has really bad headaches and the specialist thinks it might be the epilepsy causing this. So we have to count the fits for the next 3 month and then she will have another EEG then a blood test (which Karah is absolutely terrified about) and then probably increase epilim. She has been put on more medication for the headaches now which actually gave her a good nights sleep last night (infact she is still in bed as I am writing this, lazy bones). She isn’t well enough for school at this present time, but she does try to go in for a couple of hours a week. She is ok everyone, she is quite a happy little girl, a long as she is spending my money that is! Anyway keep those letters and cards coming and emails they really cheer her up. God bless you all, signing out, Karen.

Update 26th September 2005

Thank you to everyone who sent Karah birthday cards and presents, it was like Christmas for her, thank you!

You have brought sunshine into my daughter’s life, thank you. She is so happy that she gets lots of post, it really cheers her up. You’ve been sending mail to my other two children who have asthma as well. Karina and Kieran are so pleased to receive posty. I even got some posty myself from someone from post pals, it really cheered me up too. THANK YOU so much everyone.

Karah is still suffering with chronic chest infections and ear infection and upper respiratory infections. She has quite a lot of hospital visits, which she hates. She has suffered all summer and will now it’s getting on for winter, which is Karah’s worst time of year. She is quite a happy child or sorry teenager (you know attitude, teenage tantrums).

She has home tuition everyday, but does try to get into school as much as she can. Unfortunately she picks up bugs as soon as she goes.

She is a lovely girl though, but a lot people look at Karah and see she looks ok. They forget that she has needed so much medication before she even set out of the door.

Anyway, she is looking forward to Christmas and wants everything, and I mean everything. Oh no I’m going to need a bank loan!!

Take care everyone,

Karen (Karah’s mum)

Update 25th September 2005

Karah is home now, she was only kept in for about 6 hours. I have equipment at home to help Karah when she has an attack but this one just crept up on us.  We had to call the dr out the next day (monday) she wasn’t very well still but she is feeling a bit better today.

Update 19th September 2005

Just thought i would let you know that Karah was taken into hospital last night.
She had an asthma attack followed by a panic attack. She has an upper respiratory tract infection and is feeling really sorry for herself today.

Update 16th September 2005

Karah is receiving a lot of emails from very kind people and I would just like to say thank you very very much. I have read them to Karah but she cannot reply to them at the moment she is quite poorly. She has needed a nebuliser a couple of times today and is in a bit of pain with her chest but she has some friends round at the moment and they are all singing in the kareoke.  So we are not ignoring any of you and I hope you keep sending kind messages. Karina has been off school with an ear infection the past week so I have definately had my hands full.

Update September 2005

Karina and Kieran have received some posty in the past few weeks and they are so pleased and surprised that they are thought of. Karahs illnesses do take over all of our lives so its really nice, thank you every one.

Karah has another infection at the moment so she is poorly again. I knew as soon as she went back to school she would come down with something, but she was so determined she was going. She has lost so much weight recently, it’s just falling off her. So if anyone has any tips to persuade her to eat i would appreciate it. We are ok, though getting excited about Christmas.

Update 20th June 2005

Karah is having lots of hospital appointments lately and physio etc and is so happy that she gets lots of post, it really cheers her up and I get to open my own post now. Unfortunately they are mostly bills! Never mind. Take care everyone Karen xx (Karah’s mum)

Update 9th June 2005

I’m not too good, i’ve got ear and chest infections at the moment, but it should be gone soon as i’m on medication. Thank you for the card and prezzie – i’ve had fun stamping pictures in the pad.

Update 28th May 2005

Karah managed a few hours at school this week but as usual she picked up an infection that was floating around. So when she got some post from post pals she was happy.

I would like to thank everyone for their cards and gifts and kind letters. They all really cheered Karah up, I actually got to open my own mail. Thanks again to all of you. From Karah and Karen (Karah’s mum)