Following on from our appt wi Dr Salma in July, when I asked about Reagans milk.....it says for babies up to 18mths/18kg, and she's neither of those! Dr Salma has made and appt for Reagan to see the dietician again which is 3/10/11.
Reagan had her 12th transfusion on 30/7/11 , her HB was 8.3 and she received 130ml.
At the beginning of Aug Reagan saw Anouska, the physiotherapist, again and she has now fully caught up with her age and was discharged, yay!
Aug 24th saw Reagan receive her 13th transfusion, HB was 7.8 this time she received 150ml, her weight gain has been amazing she is on the 25% line now! 22lb
14th Sept was her 14th transfusion, she now weighed 22.5lb and received another 150ml.her HB was 8.5.
And so that brings us to the appt with Dr De la fuente on 15th sept. He didn't tell us a great deal that we didn't already know but it was reassuring to be seeing him.
Her bloods were repeated and it showed her HB to be 11.5. So having 150ml blood had only brought her up 3! In my opinion, it wasnt enough. Having an HB of only 11.5 is still considered to be low.
We decided that she would have her immune system checked, they didn't, however, do that test on the day we were there and so they had to sort it for us to have Reagans blood taken at Frimley and then couriered up to Great Ormand street. Basically they want to see of her immune system is suppressed. Because she has had so many chest infections it's an indication that it might be, Josu (dr de la fuente) also said that DBA patients with the gene mutation that Reagan has do quite often have problems with their immunity!
If her immune system is suppressed then she wont be able to go on the steroid trial at all because steroids lower the immunity anyway. So we'll find out about that at the next appt.
We also checked her ferritin, it was checked at transfusion #10 and was 367, it should be between 15-250. Chelation therapy usually starts when the levels get somewhere between 1-2000.
I had them check her ferritin before her 14th transfusion so I could take it along with me the following day to Josu. It was 1043, so quite a significant jump. Josu checked it again the following day and it measured 1257!!!!! After just one more transfusion?!?! Blimey.
Apparently you can get a false high if you have an infection or something but Reagan appeared well! Although she did get a chest infection less than a wk later.
Also he HB was 11.5, so that was what she had been taken up to with the previous days transfusion which isn't really high enough.
So when we see Josu on 3/11/11 he will have the results and we will finally know if Reagan can go into a steroid trial.
Her next transfusion was just 3 wks later on 7th oct, HB was 8.2. Because last time she only went to 11.5 and because she was only lasting 3 wks at a time I managed to convince them that she should have more blood. Usually they give 15ml/kg but it is possible to give up to 20ml/kg. Which is what she had in the end, so she had 215ml. So hopefully it should be 4 wks before she has to have another.
Her ferritin was checked again but this time it showed as being 714!! I just hope that the previous 2 were false highs and this one is correct. We were also told to have a test done to see if she has any infections or viruses, think it was called a CRP test but not certain. Any way that came back as normal range, less than 4!
On sat 8th oct Reagan came down with a really nasty bug and was violently sick for 17 hrs with terrible diarrhoea, which she then shared with Alex and Kaylum!! Lol and now 11 days on she's still got bad diarrhoea! It really hangs around for her!
But she's growing at an amazing rate and the dietician decided that Reagan didn't need so much milk! She would have a bottle mid morning to go to sleep, another mid afternoon, one to go to bed with then another 2 through the night, that's a total of 1litre over any 24hrs!! Basically she was completely relying on the milk to give her everything she needed and at some point she has to rely on sold food to do that eh!
So now she has cows milk through the day but still infitrini through the night but she seems to have dropped the night ones a little.
She still has one to go to bed with but most nights she still has a lot left in the bottle when I go up so it doesn't need re filling.
Most nights she only has 2 bottles now and sometimes only one.....don't be fooled into thinking that means she's sleeping better tho! It's the opposite, she crys more but doesn't want her milk and eventually she goes back off but she makes a big fuss about doing it....have no idea what it's all about but it's really bloody annoying, not to mention knackering!
Tuesday 18 October 2011
Monday 18 July 2011
Long time no post :-|
Sorry all....it's been such a long time since I've posted and now I have to try and remember all that's gone on!!!
So Reagan went in on 26th April for transfusion #9 but her HB was 10.4 so they wouldn't do it and we had to go back the following week.
So we went back on 3rd may, we had an appt with Dr Pelidis any way. Tis week her HB was 7.4, there's no way it woud have. Dropped so much in a week so the previous weeks must have been a false result!!
As far as her appt goes, it was all good her weight gain was doing really great, I do t remember what it was tho!
It was decided that we would go back in just over 3 weeks so she could be pinked up for our holiday, also that dr Pelidis woukd write up the prescription for the steroids and leave them on the ward ready for us to collect at the next transfusion and then to start her on them upon our return from holiday.
Reagan also had pnueomonia again in mid April, she had a short stay in hospital again.
20-22nd April saw us at the annual conference for DBA......we met lots of other families with children who had DBA and adults too! It was so fab to meet them all and they we're all so welcoming. We learnt so so much it was amazing.
Most interesting was to learn that a little boy with a disorder very similar to DBA had been cured by seeing a nutritionist.....needless to say we are gnu explore this avenue!
And also we met with the UKs leading DR who specialises in red blood cell production. He gave a few talks and something that struck me was that they have fairly recently discovered that many DBA patients have a weakened immune system.....I immediately thought of Reagan and her repeating chest infections. I asked him about it and he said that if it is the case that reagan should go on steroids as they will only weaken her immunity further and could be dangerous. He agreed that Reagan would be a candidate for the test to see if her immune system is weak.
So, we asked him he would be willing to take Reagan on as a patient. It was obvious to us that he had more up to date information on DBA and would benefit reagan alot. He agreed and said. Needed to get a referral from our GP.
So we decided that she wouldn't be going on the steroids yet!!
We went back to st Georges on 27th May for Reagans 10th transfusion and dr Pelidis hadn't left a prescription for Reagan so that suited us!
Reagan had had another chest infection earlier in may, this time they didn't even both with the usual Amoxicillin (which they have always prescribed before and it's never worked and then she's needed another antibiotic) I think because she developed pneumonia last time.
Anyway she had 130 mls on 27th may, i think her HB was about 9.5, so the highest its ever been when shes getting pinked! she weighed 18lb on the nose, so now she was half way between the 2nd and 9th percentile.......remember when she way down below the chart all together? She's done so well lately.
I managed to get some antibiotic to take on holiday with us because she had a bit of a cough and I was worried it might develop into an infection again. When we arrived on holiday (1/6/11) she still had a cough and her voice was husky and a bit snotty, but, she shook it off all on her own. She's never done that before I don't think, and then she was so healthy for the entire holiday!!
Her next transfusion was due 24th June. We decided to go to Frimley park because we were obviously waiting for her referral to go to the new DR, Dr Josu De la fuente, at st Marys. Plus it had been a while and she was bigger now so they might not have such a hard time getting the cannula in.
Her HB was 9.9 so they wouldn't transfuse, we were to go back again the following wk. It took 3 attempts tho and the still didn't manage to get a cannula in.
So we sent back the next wk (30/6/11) her hb was 8.4 but they said (at bloody 5.30 at nit) that they wernt going to do anything until they'd spoken to Pelidis in the morning! Gggrrr
Long story short.......if you're on steroids you shouldn't have transfusions- dr pelidis thought she was on steroids (despite not ever writing the prrescription) and said not to transfuse her!!!
Finally got it sorted and she had her 11th transfusion (130mls)
She had a clinic appt with DR Salma at frimley chic RENs centre on 12th July, her weight was 19lb13oz, which takes her to smack bang in the middle of the 9th and 25th percentile, so she's jumped up another percentile, so impressive. Her height was 74cm, which is half way between the 0.4th and 2nd percentile. So she's a bit shorter but still doing so great!
Dr Salma was very surprised with her, I told her that she was signed off from portage some time ago and signed off from physio just the wk before because she is physically doing everything an 18 mth old should be doing!!yay!
We've had an appt through for dr De la fuente, 15th sept, I'm currently trying to bring it forward.
Reagan is due another transfusion next wk.
Over and out!!
So Reagan went in on 26th April for transfusion #9 but her HB was 10.4 so they wouldn't do it and we had to go back the following week.
So we went back on 3rd may, we had an appt with Dr Pelidis any way. Tis week her HB was 7.4, there's no way it woud have. Dropped so much in a week so the previous weeks must have been a false result!!
As far as her appt goes, it was all good her weight gain was doing really great, I do t remember what it was tho!
It was decided that we would go back in just over 3 weeks so she could be pinked up for our holiday, also that dr Pelidis woukd write up the prescription for the steroids and leave them on the ward ready for us to collect at the next transfusion and then to start her on them upon our return from holiday.
Reagan also had pnueomonia again in mid April, she had a short stay in hospital again.
20-22nd April saw us at the annual conference for DBA......we met lots of other families with children who had DBA and adults too! It was so fab to meet them all and they we're all so welcoming. We learnt so so much it was amazing.
Most interesting was to learn that a little boy with a disorder very similar to DBA had been cured by seeing a nutritionist.....needless to say we are gnu explore this avenue!
And also we met with the UKs leading DR who specialises in red blood cell production. He gave a few talks and something that struck me was that they have fairly recently discovered that many DBA patients have a weakened immune system.....I immediately thought of Reagan and her repeating chest infections. I asked him about it and he said that if it is the case that reagan should go on steroids as they will only weaken her immunity further and could be dangerous. He agreed that Reagan would be a candidate for the test to see if her immune system is weak.
So, we asked him he would be willing to take Reagan on as a patient. It was obvious to us that he had more up to date information on DBA and would benefit reagan alot. He agreed and said. Needed to get a referral from our GP.
So we decided that she wouldn't be going on the steroids yet!!
We went back to st Georges on 27th May for Reagans 10th transfusion and dr Pelidis hadn't left a prescription for Reagan so that suited us!
Reagan had had another chest infection earlier in may, this time they didn't even both with the usual Amoxicillin (which they have always prescribed before and it's never worked and then she's needed another antibiotic) I think because she developed pneumonia last time.
Anyway she had 130 mls on 27th may, i think her HB was about 9.5, so the highest its ever been when shes getting pinked! she weighed 18lb on the nose, so now she was half way between the 2nd and 9th percentile.......remember when she way down below the chart all together? She's done so well lately.
I managed to get some antibiotic to take on holiday with us because she had a bit of a cough and I was worried it might develop into an infection again. When we arrived on holiday (1/6/11) she still had a cough and her voice was husky and a bit snotty, but, she shook it off all on her own. She's never done that before I don't think, and then she was so healthy for the entire holiday!!
Her next transfusion was due 24th June. We decided to go to Frimley park because we were obviously waiting for her referral to go to the new DR, Dr Josu De la fuente, at st Marys. Plus it had been a while and she was bigger now so they might not have such a hard time getting the cannula in.
Her HB was 9.9 so they wouldn't transfuse, we were to go back again the following wk. It took 3 attempts tho and the still didn't manage to get a cannula in.
So we sent back the next wk (30/6/11) her hb was 8.4 but they said (at bloody 5.30 at nit) that they wernt going to do anything until they'd spoken to Pelidis in the morning! Gggrrr
Long story short.......if you're on steroids you shouldn't have transfusions- dr pelidis thought she was on steroids (despite not ever writing the prrescription) and said not to transfuse her!!!
Finally got it sorted and she had her 11th transfusion (130mls)
She had a clinic appt with DR Salma at frimley chic RENs centre on 12th July, her weight was 19lb13oz, which takes her to smack bang in the middle of the 9th and 25th percentile, so she's jumped up another percentile, so impressive. Her height was 74cm, which is half way between the 0.4th and 2nd percentile. So she's a bit shorter but still doing so great!
Dr Salma was very surprised with her, I told her that she was signed off from portage some time ago and signed off from physio just the wk before because she is physically doing everything an 18 mth old should be doing!!yay!
We've had an appt through for dr De la fuente, 15th sept, I'm currently trying to bring it forward.
Reagan is due another transfusion next wk.
Over and out!!
Saturday 2 April 2011
transfusion #8
Tuesday 29th March
we were back to St Georges today for a blood transfusion, Dr Pelidis had called me the day before to check we were still coming and said she would order the blood so it would be ready for us and would just need to be cross matched and there fore should be quicker!
So the traffic was absolutly horrendous, as soon as we got onto the Hogs back we came to a stand still! So we didnt arrive at the hospital until 11am. Alex dropped me off outside and went to park the car.
I got to the ward and it was heaving, someone had been given Reagans bed so we were sent to the play room to wait. there wasnt any where to sit in the play room it was so busy! (although one family had 5 adults with just one child!!)
Then Alex calls to say that the car park is so full hes had to park out on the road and i had his wallet!
So I had to try and write down all the info (with a crayon!!) to call the parking company to pay for the parking. All the while Reagan is desperatly trying to get down and crawl and empty the contents of my purse while im trying to read my card number. Plus i got cut off twice because of back signal and im not even ment to be on the phone!!!!
About 12.30 they called us in to get her cannulated, they had called in a speciallist this time to use the ultra sound scanner to see the veins. So I had to hold her to me while they did it. they dint use the magic cream because it only makes it harder but the freeze spray they use is just that.....freezing and she screams and screams.
Then they inject a local anesthetic which is a stingy intections and so makes her cry even more.
The first attempt failed and so she had to do the whole thing all over again.
Poor Reagan was so upset, aswell as all that shes being held tightly to keep her still, surrounded by strange people!
By this time it was 1o'clock. They were just making her bed up for her and eve worse than last time it didnt even have sides on it!
All she wanted to do was get down and crawl about but she had to be content with being walked about and cruising around our chairs and the bed.
Then.......someone brings their child in with full blown chicken pox! an you believe it, they didnt even realise, so we were quarantined to our bed and couldnt go any where until it had all been cleaned.
They were so busy we just couldnt gt angry with them and they are all so lovely but again the blood didnt et started until 4.30pm, it takes 4 hrs and after that she had to have her Chicken pox vaccine! oh yes forgot to say that St Georges ordered it in the end for her!
Fortunatly the transfusion went through smoothly and we were moved up to a paed ward at about 7.45pm because the Jungle ward closes at 8pm. Then the transfusion began to play up but it wasnt too much of a set back. Once it had finished at about 8.30pm we just had to wait for them to come and give her her vaccine.
We eventually got home at 10.30pm! Another stupidly long day that was spent trying to keep her occupied, which is getting harder and harder each time.
We're really working hard at getting her walking so at least she can be a bit mobile!
Oh and Dr Pelidis came to see us and we asked her abuout the Phenergan, she said she hadnt really heard of it being given as a sedative (really!!!!) and it can have a bad side effect that is treated with Piriton and so to try piriton first.
She said give her 2.5mls, which is just a normal dose so I couldnt see that doing anything. any way we were to try it for 3 nights and if not then we could go back to Dr Salma and get the Phenergan. I had already bought Phenergan and given it to her an dit had worked but we gave the Piriton ago and it did absolutly nothing at all to help!
So i've been onto Dr Salma to get a prescription, we're still waiting for it but in the mean time im giving her Phenergan any way and she sleeping so much better and has even gone all through the night once!!!
Think i'll go a week and as long as its still working i'll start reducing the dose.
Shes going to have another transfusion on 26th Apr and the 2nd part of the vaccine. Shes then due to see Dr Pelidis the following wk and she'll write her prescription for the steroids then, however, that will only be a couple of wks before we go away, so unless shes prepared to transfuse her before we go any way (which sort of seem silly to start the steroids if she going to be transfused) then we wont start them until we get back!
Weight wise, she was 16lb 5oz and it was 3 wks since her last weigh and she was pretty much the same, so probably lost alittle from the bug she had which had lasted a full wk and she hadnt eaten really either, but she is still on the 2nd centile though!
her length is 69cms, so still right at the bottom centile for height!!!!
we were back to St Georges today for a blood transfusion, Dr Pelidis had called me the day before to check we were still coming and said she would order the blood so it would be ready for us and would just need to be cross matched and there fore should be quicker!
So the traffic was absolutly horrendous, as soon as we got onto the Hogs back we came to a stand still! So we didnt arrive at the hospital until 11am. Alex dropped me off outside and went to park the car.
I got to the ward and it was heaving, someone had been given Reagans bed so we were sent to the play room to wait. there wasnt any where to sit in the play room it was so busy! (although one family had 5 adults with just one child!!)
Then Alex calls to say that the car park is so full hes had to park out on the road and i had his wallet!
So I had to try and write down all the info (with a crayon!!) to call the parking company to pay for the parking. All the while Reagan is desperatly trying to get down and crawl and empty the contents of my purse while im trying to read my card number. Plus i got cut off twice because of back signal and im not even ment to be on the phone!!!!
About 12.30 they called us in to get her cannulated, they had called in a speciallist this time to use the ultra sound scanner to see the veins. So I had to hold her to me while they did it. they dint use the magic cream because it only makes it harder but the freeze spray they use is just that.....freezing and she screams and screams.
Then they inject a local anesthetic which is a stingy intections and so makes her cry even more.
The first attempt failed and so she had to do the whole thing all over again.
Poor Reagan was so upset, aswell as all that shes being held tightly to keep her still, surrounded by strange people!
By this time it was 1o'clock. They were just making her bed up for her and eve worse than last time it didnt even have sides on it!
All she wanted to do was get down and crawl about but she had to be content with being walked about and cruising around our chairs and the bed.
Then.......someone brings their child in with full blown chicken pox! an you believe it, they didnt even realise, so we were quarantined to our bed and couldnt go any where until it had all been cleaned.
They were so busy we just couldnt gt angry with them and they are all so lovely but again the blood didnt et started until 4.30pm, it takes 4 hrs and after that she had to have her Chicken pox vaccine! oh yes forgot to say that St Georges ordered it in the end for her!
Fortunatly the transfusion went through smoothly and we were moved up to a paed ward at about 7.45pm because the Jungle ward closes at 8pm. Then the transfusion began to play up but it wasnt too much of a set back. Once it had finished at about 8.30pm we just had to wait for them to come and give her her vaccine.
We eventually got home at 10.30pm! Another stupidly long day that was spent trying to keep her occupied, which is getting harder and harder each time.
We're really working hard at getting her walking so at least she can be a bit mobile!
Oh and Dr Pelidis came to see us and we asked her abuout the Phenergan, she said she hadnt really heard of it being given as a sedative (really!!!!) and it can have a bad side effect that is treated with Piriton and so to try piriton first.
She said give her 2.5mls, which is just a normal dose so I couldnt see that doing anything. any way we were to try it for 3 nights and if not then we could go back to Dr Salma and get the Phenergan. I had already bought Phenergan and given it to her an dit had worked but we gave the Piriton ago and it did absolutly nothing at all to help!
So i've been onto Dr Salma to get a prescription, we're still waiting for it but in the mean time im giving her Phenergan any way and she sleeping so much better and has even gone all through the night once!!!
Think i'll go a week and as long as its still working i'll start reducing the dose.
Shes going to have another transfusion on 26th Apr and the 2nd part of the vaccine. Shes then due to see Dr Pelidis the following wk and she'll write her prescription for the steroids then, however, that will only be a couple of wks before we go away, so unless shes prepared to transfuse her before we go any way (which sort of seem silly to start the steroids if she going to be transfused) then we wont start them until we get back!
Weight wise, she was 16lb 5oz and it was 3 wks since her last weigh and she was pretty much the same, so probably lost alittle from the bug she had which had lasted a full wk and she hadnt eaten really either, but she is still on the 2nd centile though!
her length is 69cms, so still right at the bottom centile for height!!!!
Dr Salma, paediatrician
Thurs 24th March
We made an appt with Dr Salma today to see if she could offer any help with Reagans sleep.
She checked her over as usual and asked about her development and who she was still seeing - dietician, SALT, portage, physio etc. she questioned about what had happened the night previous and was very happy with her.
she said she could prescribe her some Phenergan but wanted to check with Dr Pelidis first just make sure there was no blood related reason for her not to have it.
Obviously this was going to take weeks to get sorted..........great!
We made an appt with Dr Salma today to see if she could offer any help with Reagans sleep.
She checked her over as usual and asked about her development and who she was still seeing - dietician, SALT, portage, physio etc. she questioned about what had happened the night previous and was very happy with her.
she said she could prescribe her some Phenergan but wanted to check with Dr Pelidis first just make sure there was no blood related reason for her not to have it.
Obviously this was going to take weeks to get sorted..........great!
Poorly again! :0(
Wed 23rd March
Reagan woke up with Diarrhoea today, she wouldnt eat a thing and at lunch time she woke up with a temp.
I didnt have access to a themometor so i dont know what it was. i rang the childrens ward and they wanted to see her because it had mucus in it.
we arrived about 1/2 hr afte she had some calpol and her temp was 38.
they decided to do a blood test to be on the safe side.
she had been very sleepy all day and was still at this point, then about 20 mins later she really perked up!! Typical!
Any way her bloods were fine, they showed no infection so just a virus and her HB was 9. this was 3 wks post tranfusion (remember they had given her an extra 20% blood to last her 4 wks) and her retic count was 63!!!! I cant remember it ever being that high!
so anyway, we went home after a couple of hrs because we had an appt with Dr Salma the following morning.
Reagan woke up with Diarrhoea today, she wouldnt eat a thing and at lunch time she woke up with a temp.
I didnt have access to a themometor so i dont know what it was. i rang the childrens ward and they wanted to see her because it had mucus in it.
we arrived about 1/2 hr afte she had some calpol and her temp was 38.
they decided to do a blood test to be on the safe side.
she had been very sleepy all day and was still at this point, then about 20 mins later she really perked up!! Typical!
Any way her bloods were fine, they showed no infection so just a virus and her HB was 9. this was 3 wks post tranfusion (remember they had given her an extra 20% blood to last her 4 wks) and her retic count was 63!!!! I cant remember it ever being that high!
so anyway, we went home after a couple of hrs because we had an appt with Dr Salma the following morning.
Speach and language therapy
Thursday 17th March
Reagan had her first SALT session today. She was reffered back in November because she still wasnt eating and was still so under weight, at the time she had just had a bug and lost over lb in weight too.
As you know though Reagan is now eating well and gaining weight good too. So I thought that nothing much would come from it becasue although she is slightly delayed in speech i dont think its any more than other kids how are just a bit slower.
Any way that was basically what she said, yes shes slightly delayed but not enough for her to warrent therapy. she gave me some tips to try and encourage Reagan and said she didnt need to see her again unless i was concerned. she wont discharge her for 6 mths though just incase!
So all good!!
Reagan had her first SALT session today. She was reffered back in November because she still wasnt eating and was still so under weight, at the time she had just had a bug and lost over lb in weight too.
As you know though Reagan is now eating well and gaining weight good too. So I thought that nothing much would come from it becasue although she is slightly delayed in speech i dont think its any more than other kids how are just a bit slower.
Any way that was basically what she said, yes shes slightly delayed but not enough for her to warrent therapy. she gave me some tips to try and encourage Reagan and said she didnt need to see her again unless i was concerned. she wont discharge her for 6 mths though just incase!
So all good!!
Tuesday 8 March 2011
Progress 'n stuff!
Not sure if you noticed the ungodly hr of the last post??
Hhhmmmmm not impressed!
It's prompted me to give you a little update on Reagan herself!
She now has 3 teeth! 2 at the bottom and one at the top. She is shuffling everywhere now and gaining speed! She has now started to some times crawl properly, it's not very often at all but it is proof that her upper body is strengthening. She'll also sometimes go up onto her hands and feet, very amusing!
I had to lower the cot because she fell out!!! Poor poor baby, she ended up with a nasty bruise on her forehead. She stands up the very second she is awake, so no chance of falling back to sleep in that position eh!?!?
Which brings me to the sleeping again! Last night she was up 3 times, I'm not sure what the first time was but it was then about 3.30 and again at 5.50 when She decided it was time to get up for the day (hence ms being on her at stupid o'clock)
That is a very good night for her! Especially as I went to sleep before she'd woken up at all, meaning the first time she woke up was after midnight.
However, she is usually very bad, the night before i lost count it was easily over 5 times. If I fight and try to settle her with out feeding her she will sleep for maybe 3-5 mins (just enough for you to maybe falling back to sleep yourself) and this will continue for somewhere between an hr and an hr and half! Before she might finally give in and sleep for about 40 mins.........now is it worth all the effort??? And then at this time it is quite some time since she was last fed and I will think at it's feasible for her to actually need to be fed now!!!
So........we've decided to take her to her paediatrician, Dr Salma, and see if there is anything she can do to help. She must be an extreme case surely???
She's almost 14mths now and has never slept a night through. Her longest is 6 hrs...... God I'd give a limb for a 6 hr stretch!!!!!
Her eating is still regally fab! She loves being on her feet (all size 2 of them!) and being walked around! I'd quite like her to walk because when we go into hospital with her she's confined to her bed or us walking her around. She obviously cant crawl on the floor.
She can drink from a beaker herself, very cute! Cruises around the furniture, she's saying a couple of words- kind of!! And shakes her head!! She hates her walker......biggest waste of £50 that was. Think it's because she still cant do anything in it, despite it being on the lowest setting she cant really reach the floor.
Well thats all I can think of for now!!
Hhhmmmmm not impressed!
It's prompted me to give you a little update on Reagan herself!
She now has 3 teeth! 2 at the bottom and one at the top. She is shuffling everywhere now and gaining speed! She has now started to some times crawl properly, it's not very often at all but it is proof that her upper body is strengthening. She'll also sometimes go up onto her hands and feet, very amusing!
I had to lower the cot because she fell out!!! Poor poor baby, she ended up with a nasty bruise on her forehead. She stands up the very second she is awake, so no chance of falling back to sleep in that position eh!?!?
Which brings me to the sleeping again! Last night she was up 3 times, I'm not sure what the first time was but it was then about 3.30 and again at 5.50 when She decided it was time to get up for the day (hence ms being on her at stupid o'clock)
That is a very good night for her! Especially as I went to sleep before she'd woken up at all, meaning the first time she woke up was after midnight.
However, she is usually very bad, the night before i lost count it was easily over 5 times. If I fight and try to settle her with out feeding her she will sleep for maybe 3-5 mins (just enough for you to maybe falling back to sleep yourself) and this will continue for somewhere between an hr and an hr and half! Before she might finally give in and sleep for about 40 mins.........now is it worth all the effort??? And then at this time it is quite some time since she was last fed and I will think at it's feasible for her to actually need to be fed now!!!
So........we've decided to take her to her paediatrician, Dr Salma, and see if there is anything she can do to help. She must be an extreme case surely???
She's almost 14mths now and has never slept a night through. Her longest is 6 hrs...... God I'd give a limb for a 6 hr stretch!!!!!
Her eating is still regally fab! She loves being on her feet (all size 2 of them!) and being walked around! I'd quite like her to walk because when we go into hospital with her she's confined to her bed or us walking her around. She obviously cant crawl on the floor.
She can drink from a beaker herself, very cute! Cruises around the furniture, she's saying a couple of words- kind of!! And shakes her head!! She hates her walker......biggest waste of £50 that was. Think it's because she still cant do anything in it, despite it being on the lowest setting she cant really reach the floor.
Well thats all I can think of for now!!
Clinic appt with DR Pelidis
We went to see Dr Pelidid yesterday (Tue 8th March) just for a clinic appt.
Reagan weighs 16lb 5oz, so has gained half lb in 4 wks which is fab at this age and means she has crept just a little bit further up from the 4th centile on the the growth chart and a little closer to the the 9th!! Not far off being half way between both i reackon!! In fact Dr Pelidis made not comment on her weight at all whic I take to mean there is no issue!! Hurrah....at bloody last eh?
Ive had quite a few people comment over th last wk on how she's grown.
Reagan gets her viracella (chicken pox) vaccine next Monday, Pelidis thought it best that it was in her system for a few wks before starting steroids so it was decided that we would do one more transfusion then start them a wk or so after that.
Because she had more blood this time we're leaving it 4 wks before giving her another transfusion, so that will be on 29th March. We're going to st Georges again because it was kinder on Reagan and Pelidis said that because she has already had one there that her info is recorded now and and the blood would be ordered the day before she goes in, so it SHOULD be quicker (providing the cross match is OK -this is where the test her blood with that of the donors blood to check for a reaction before giving it to her)
So the steroids should be starting in the first wk of Apr (just as Alex gets home from a wk in Orlando with work!)
We don't go back to see her for another 8 wks now. It's always such a nightmare getting the appt made. They're always full so they say that they have to book then next available appt and write us in on the over booking form and pass it to his manager who will over book the clinic and contact us with a time etc. Well last time it didn't work at all, we heard nothing and got nowhere when trying to book it.
So this time I suggested he book in an appt for 16 wks time (so the appt after next) so that we've already got that one sorted and still write us in on the over booking form.........god it was hard work trying to explain this to him!!! I think we got there but I'll be surprised if I get a call/letter with an appt for 8 wks!!!
When we were in last wk for her transfusion the nurse looking after her said we might be able to claim back our petrol and get the carpark paid for each time we come.
When we went to ask it turns out we can! I just had to take in reagans DLA form (I don't think I've posted that she gets disability allowance have I? I'll check )
Anyway i took it yesterday and after her nearly having heart attack due to stressing herself out so much we got re-embedded £90!! For the last 3 mths and the the carpark for yesterday. I was really pleased with that!! Each time we go we will get about £18 i think!
Reagan weighs 16lb 5oz, so has gained half lb in 4 wks which is fab at this age and means she has crept just a little bit further up from the 4th centile on the the growth chart and a little closer to the the 9th!! Not far off being half way between both i reackon!! In fact Dr Pelidis made not comment on her weight at all whic I take to mean there is no issue!! Hurrah....at bloody last eh?
Ive had quite a few people comment over th last wk on how she's grown.
Reagan gets her viracella (chicken pox) vaccine next Monday, Pelidis thought it best that it was in her system for a few wks before starting steroids so it was decided that we would do one more transfusion then start them a wk or so after that.
Because she had more blood this time we're leaving it 4 wks before giving her another transfusion, so that will be on 29th March. We're going to st Georges again because it was kinder on Reagan and Pelidis said that because she has already had one there that her info is recorded now and and the blood would be ordered the day before she goes in, so it SHOULD be quicker (providing the cross match is OK -this is where the test her blood with that of the donors blood to check for a reaction before giving it to her)
So the steroids should be starting in the first wk of Apr (just as Alex gets home from a wk in Orlando with work!)
We don't go back to see her for another 8 wks now. It's always such a nightmare getting the appt made. They're always full so they say that they have to book then next available appt and write us in on the over booking form and pass it to his manager who will over book the clinic and contact us with a time etc. Well last time it didn't work at all, we heard nothing and got nowhere when trying to book it.
So this time I suggested he book in an appt for 16 wks time (so the appt after next) so that we've already got that one sorted and still write us in on the over booking form.........god it was hard work trying to explain this to him!!! I think we got there but I'll be surprised if I get a call/letter with an appt for 8 wks!!!
When we were in last wk for her transfusion the nurse looking after her said we might be able to claim back our petrol and get the carpark paid for each time we come.
When we went to ask it turns out we can! I just had to take in reagans DLA form (I don't think I've posted that she gets disability allowance have I? I'll check )
Anyway i took it yesterday and after her nearly having heart attack due to stressing herself out so much we got re-embedded £90!! For the last 3 mths and the the carpark for yesterday. I was really pleased with that!! Each time we go we will get about £18 i think!
Another nightmare transfusion (#7)
Tuesday 1st March saw us back to St Georges for blood transfusion #7.
we chose to go to st georges because it had taken so many attempts to get the cannula in last time and the ward at st georges is a surgical ward, it's purely to prepare for surgery or for I.vs or transfusions. So they're putting cannulas in all day long. Plus they have a ultra sound scanner they can use to see the veins if necessary.
We arrived at 10AM, they were really busy and it took ages to get round to putting her cannula in. We decided not to use the numbing cream because it makes the skin puffy and red which can make it even harder to see the veins, plus it normally takes so many attempts that they end up having to try places that haven't got any cream on by which time she is really upset and in pain any way!
It took just 2 attempts this time, one in the crook of each arm. She couldn't see any decent veins at all and just went by feel! They didn't need to use the ultra sound machine.
It was now midday so we went off to get some lunch while they tested her blood and got the new blood.
So it was a 3 wks exactly since her last transfusion, I can't remember exactly but I think last time it was 3.5 wks and her HB was 7.6?? Anyway this time it was 8.7 her retic count was 6 (last time it was 20 something) so she had lasted pretty well this time and was just perfect for a transfusion.... We want to keep her above 9. Also this time they did a ferratin level(this measures the level of iron in her blood) Dr Pelidis said that iron chelation would probably have to be started after about 10 transfusions.
So we re given a copy of the the pathology report this time, which was great because it also had this ferratin level thingy, however, I bloody well managed to loose it!! Ggggrrr (not once but twice! I'll get to how a bit later)
Her ferratin level should be between 6-140 and hers is now 367, I don't know how that measures in terms of how many transfusions shes had.
It took FOREVER for them to get the blood and the transfusion didn't even start until 5pm!! Bloody nightmare. And to make it worse Reagan had a bed, not a cot, so she could fall out! And the wast is made up of 12 beds with very basic chairs! At least at Frimley park we get a side room and more comfy chairs!!! plus the ward at frimley is so much bigger so ww can walk her up and down and change the scenery a bit.
This time she was having 120mls of blood, she should only have 100mls but because she hasn't been lasting very long and Dr Pelidis would rather she had a bit more time between transfusions it was decided to give a bit more. The risk of this is a strain on her heart but she was fine, of course she is monitored throughout and if anything was to seem wrong they would stop.
About 30 mins before the blood was finished (which takes 3 hrs to go through) i noticed a red pin prick type rash coming up on here face, then her arm (not the one with the cannula in) on the back of her neck. Eventually a few on her leg and nappy area. Also on the same arm she had some purple spots and some really tiny, what looked like, blood spots.
Just as the nurse was doing the final OBs on her i said about it and she decided to contact a doctor to check her over, just incase.
It was now 8.15pm and the ward is meant to close at 8pm. The Dr said she would about 45 mins. 1.5 hrs later she came and said that she wasn't at all worried about the red rash but was slightly concerned about the purple one. It didn't blanch (disappear when pressed) which is always a worry. She was completely fine in hself, no temp or anything, smiling the lot (despite being so absolutely exhausted due to it being 9.30pm now, and i had kept her awake, thinking the dr would be there by 8.45)
So it was decided that we would stay in over night for them to observe her to be sure.
Needless to say, she ws comp,eatery fine. It was caused,we think, by the tournequay being a little too tight when trying to insert the cannula, causing lots of small bruises and just as they looked, blood spots.
This was pretty much confirmed a few days later when the purple spots went brown!!!!
When We were taken from the day ward up to the paediatric ward they used my copy of the pathology report to hand over, that was how i lost it the first time! But I managed to get them to print me another one off.
We eventually got home at 1pm, we hadn't brushed our teeth or washed or anything since the morning before!! Nice!!
So......... We went to st georges thinking it would be better than frimley!!.........hhhhmmmm! Well it was easier on reagan though! However that might be h last transfusion..........
we chose to go to st georges because it had taken so many attempts to get the cannula in last time and the ward at st georges is a surgical ward, it's purely to prepare for surgery or for I.vs or transfusions. So they're putting cannulas in all day long. Plus they have a ultra sound scanner they can use to see the veins if necessary.
We arrived at 10AM, they were really busy and it took ages to get round to putting her cannula in. We decided not to use the numbing cream because it makes the skin puffy and red which can make it even harder to see the veins, plus it normally takes so many attempts that they end up having to try places that haven't got any cream on by which time she is really upset and in pain any way!
It took just 2 attempts this time, one in the crook of each arm. She couldn't see any decent veins at all and just went by feel! They didn't need to use the ultra sound machine.
It was now midday so we went off to get some lunch while they tested her blood and got the new blood.
So it was a 3 wks exactly since her last transfusion, I can't remember exactly but I think last time it was 3.5 wks and her HB was 7.6?? Anyway this time it was 8.7 her retic count was 6 (last time it was 20 something) so she had lasted pretty well this time and was just perfect for a transfusion.... We want to keep her above 9. Also this time they did a ferratin level(this measures the level of iron in her blood) Dr Pelidis said that iron chelation would probably have to be started after about 10 transfusions.
So we re given a copy of the the pathology report this time, which was great because it also had this ferratin level thingy, however, I bloody well managed to loose it!! Ggggrrr (not once but twice! I'll get to how a bit later)
Her ferratin level should be between 6-140 and hers is now 367, I don't know how that measures in terms of how many transfusions shes had.
It took FOREVER for them to get the blood and the transfusion didn't even start until 5pm!! Bloody nightmare. And to make it worse Reagan had a bed, not a cot, so she could fall out! And the wast is made up of 12 beds with very basic chairs! At least at Frimley park we get a side room and more comfy chairs!!! plus the ward at frimley is so much bigger so ww can walk her up and down and change the scenery a bit.
This time she was having 120mls of blood, she should only have 100mls but because she hasn't been lasting very long and Dr Pelidis would rather she had a bit more time between transfusions it was decided to give a bit more. The risk of this is a strain on her heart but she was fine, of course she is monitored throughout and if anything was to seem wrong they would stop.
About 30 mins before the blood was finished (which takes 3 hrs to go through) i noticed a red pin prick type rash coming up on here face, then her arm (not the one with the cannula in) on the back of her neck. Eventually a few on her leg and nappy area. Also on the same arm she had some purple spots and some really tiny, what looked like, blood spots.
Just as the nurse was doing the final OBs on her i said about it and she decided to contact a doctor to check her over, just incase.
It was now 8.15pm and the ward is meant to close at 8pm. The Dr said she would about 45 mins. 1.5 hrs later she came and said that she wasn't at all worried about the red rash but was slightly concerned about the purple one. It didn't blanch (disappear when pressed) which is always a worry. She was completely fine in hself, no temp or anything, smiling the lot (despite being so absolutely exhausted due to it being 9.30pm now, and i had kept her awake, thinking the dr would be there by 8.45)
So it was decided that we would stay in over night for them to observe her to be sure.
Needless to say, she ws comp,eatery fine. It was caused,we think, by the tournequay being a little too tight when trying to insert the cannula, causing lots of small bruises and just as they looked, blood spots.
This was pretty much confirmed a few days later when the purple spots went brown!!!!
When We were taken from the day ward up to the paediatric ward they used my copy of the pathology report to hand over, that was how i lost it the first time! But I managed to get them to print me another one off.
We eventually got home at 1pm, we hadn't brushed our teeth or washed or anything since the morning before!! Nice!!
So......... We went to st georges thinking it would be better than frimley!!.........hhhhmmmm! Well it was easier on reagan though! However that might be h last transfusion..........
Tuesday 15 February 2011
Portage, physio and general update
Today was her latest appt with portage and physio, I haven't yet blogged how amazing Reagan has done with her development lately!
She's done so well since Nov time really but her biggest news is that she is CRAWLING!! well she kinda bum shuffles with her legs to one side and also uses her hands! Its very similar to how Peyton got about!
She started on 28th Jan, she varied at first between all fours and how she goes now! She woud only do two in succession at first but soon she gave up on the all fours and favoured the unusual way!!
Sleep wise, I can't remember if I've blogged this or not, she now goes to bed at a. Ormolu. Ed time...........I know! It's amazing! So she goes up between about 7.30 and 8 she gets put down awake and thats it! She doesn't yet do this during the day tho, don't know why!
It still varies how much she gets up but usually between 3-5 times..........I know it's still quite shit but such a huge improvement on 7-10!!! Plus she is on her own bed and not ours! On the down side she does think that 6-6.30 is an acceptable time to wake for the day! *sigh* also when she wakes up, and i mean before her eyes have even rurally opened she sits up! Then of course that just wakes her up fully and she can't get back to sleep!if only it was acceptable to strap them into their cots like we do pushchairs and highchairs!!!!!!
She also pulls her self to her knees and has even once pulled herself to standing! She says 'hello' she learnt this in the hospital last wk whilst having her transfusion, she was playing with a toy phone and i puked it up and said hello into it and she copied! Clever girl....very cute of course.
She was saying 'bye' but doesn't seem to do that any more. When she drops something she says 'uh-oh'.
And over the last day or two she is really enjoying being on her feet, yesterday she even cruised a little along the sofa! When i try to put her down on the floor she keeps her legs straight to stand on! Yet she still doesn't like her walker...but then she still cant go anywhere in it!
Anyway when the ladies from portage and physio came today they were incredibly impressed with her. Portage said they were happy not to see her again but were leaving the lines of communication open just incase i needed them again and physio said that they would like to see her at least one more time but not for another 2 mths and that would probably be the last time. They were only he for half hr, last time it was an hr.
Also today she mastered a little step both down and up! She was very pleased with herself, and quite rightly so I thought!
She's done so well since Nov time really but her biggest news is that she is CRAWLING!! well she kinda bum shuffles with her legs to one side and also uses her hands! Its very similar to how Peyton got about!
She started on 28th Jan, she varied at first between all fours and how she goes now! She woud only do two in succession at first but soon she gave up on the all fours and favoured the unusual way!!
Sleep wise, I can't remember if I've blogged this or not, she now goes to bed at a. Ormolu. Ed time...........I know! It's amazing! So she goes up between about 7.30 and 8 she gets put down awake and thats it! She doesn't yet do this during the day tho, don't know why!
It still varies how much she gets up but usually between 3-5 times..........I know it's still quite shit but such a huge improvement on 7-10!!! Plus she is on her own bed and not ours! On the down side she does think that 6-6.30 is an acceptable time to wake for the day! *sigh* also when she wakes up, and i mean before her eyes have even rurally opened she sits up! Then of course that just wakes her up fully and she can't get back to sleep!if only it was acceptable to strap them into their cots like we do pushchairs and highchairs!!!!!!
She also pulls her self to her knees and has even once pulled herself to standing! She says 'hello' she learnt this in the hospital last wk whilst having her transfusion, she was playing with a toy phone and i puked it up and said hello into it and she copied! Clever girl....very cute of course.
She was saying 'bye' but doesn't seem to do that any more. When she drops something she says 'uh-oh'.
And over the last day or two she is really enjoying being on her feet, yesterday she even cruised a little along the sofa! When i try to put her down on the floor she keeps her legs straight to stand on! Yet she still doesn't like her walker...but then she still cant go anywhere in it!
Anyway when the ladies from portage and physio came today they were incredibly impressed with her. Portage said they were happy not to see her again but were leaving the lines of communication open just incase i needed them again and physio said that they would like to see her at least one more time but not for another 2 mths and that would probably be the last time. They were only he for half hr, last time it was an hr.
Also today she mastered a little step both down and up! She was very pleased with herself, and quite rightly so I thought!
Clinic with Dr Pelidis
Tues 8th Feb
Appt with Dr Pelidis today, we went over the events of the day before and she said she'd talk to the surgeon about a port-a-cath, this is a semi permanent line that's put in under her arm I think. They can take blood from it and give transfusions into it. Normally you have to be over 10kg to have one but shes going to see what she can do because Reagan seems to have such a hard time. Other wise the other option is a hick man witch is an external line,which would mean she could swim (not sure about bathing but don't think so) and its open to infection. S its not really something we would probably consider.
We decided that she should have an HB over 9 and so she is to be transfused again in 3 wks time. She will also have her last lot of immunisations that wk and will then be ready to start on the steroids.
We're going back to see Dr Pelidis in 4 wks time.
We asked if we could get her transfused at St Georges this time to se if she has an easier time of it. She said that it was a long way for us to come but we're still sure that it will take less than the 10.5hrs it took at Frimley Park yesterday!
Tomorrow she will have her MMR and boosters!
Oh and she weighed 15lb 12oz! Still gaining weight fabulously!! Her length was 67cm.
Appt with Dr Pelidis today, we went over the events of the day before and she said she'd talk to the surgeon about a port-a-cath, this is a semi permanent line that's put in under her arm I think. They can take blood from it and give transfusions into it. Normally you have to be over 10kg to have one but shes going to see what she can do because Reagan seems to have such a hard time. Other wise the other option is a hick man witch is an external line,which would mean she could swim (not sure about bathing but don't think so) and its open to infection. S its not really something we would probably consider.
We decided that she should have an HB over 9 and so she is to be transfused again in 3 wks time. She will also have her last lot of immunisations that wk and will then be ready to start on the steroids.
We're going back to see Dr Pelidis in 4 wks time.
We asked if we could get her transfused at St Georges this time to se if she has an easier time of it. She said that it was a long way for us to come but we're still sure that it will take less than the 10.5hrs it took at Frimley Park yesterday!
Tomorrow she will have her MMR and boosters!
Oh and she weighed 15lb 12oz! Still gaining weight fabulously!! Her length was 67cm.
Monday 7 February 2011
Transfusion #6
At least I think it is....... I'm loosing count now!!
What a bloody nightmare it has been again. After the last one being so straight forward.
We decided on Friday that she was looking like she needed a transfusion, it had previously been decided that she would have her blood tested tomorrow at St Georges, however, if we did that it means adding on a few hrs to the appt which is at 1.30 and so we would be fighting the traffic home then. Also it would be Wed before she got transfused.
So i rang the ward yesterday (Sunday) and they said to come in about 3pm because at 5pm there would be less drs about.
So i did, she had one go and failed but she said she could only see 2 good veins and wanted a senior dr to do it incase she stuffed it up i guess!!
So i waited for about 1.5hrs and he walked in as his pager went off. He went to answer it and about another 1/2nd later they said that he had been called to a poorly baby in SCBU and would be at least another 2hrs.
So I decided to just come back this morning and get it all done in one shot! (famous last words)
We arrived at 9am about 10am a lovely dr came to put the line in......no joy but she did get some blood out.
So off we went to wait for the results to come back, sure enough she needed a transfusion, her HB was 7.6 and her retic count was 28 (which is good)
By the time we got back onto the ward the dr was going into a meeting but the blood wasn't going to be arriving till about 2pm.
At 2pm she tried again to get a line in. We told her that we were going to be discussing putting a port in tomorrow. She told us to exaggerate how bad it was, she said "tell them it took like 8 times today before we could get a line in"
She tried a couple more times then said she was going to ask someone else to have a go. Someone else came and tried a couple of times then the original dr tried again..........on the 8th attempt they finally got a line in!! In her foot.
I guess we don't need to exaggerate tomorrow then!!!!!
She has wiggly veins that spasm really well, so they get the vein no problem but can't thread it, the cannula only gets in so far then it spasms and it can't go in anymore. Plus now that she has some lovely chubbiness, it means the veins are even harder to see! (she weighed 15lb 12oz today :0))))
She was so upset, she cried and cried so much she was practically asleep before they'd even finished.
But of course she got over it no time!!
The blood went up at about 3.30pm in the end. And here we are now.........she has another 2hrs to go but she's peacefully asleep now, getting some well earned rest.
What a bloody nightmare it has been again. After the last one being so straight forward.
We decided on Friday that she was looking like she needed a transfusion, it had previously been decided that she would have her blood tested tomorrow at St Georges, however, if we did that it means adding on a few hrs to the appt which is at 1.30 and so we would be fighting the traffic home then. Also it would be Wed before she got transfused.
So i rang the ward yesterday (Sunday) and they said to come in about 3pm because at 5pm there would be less drs about.
So i did, she had one go and failed but she said she could only see 2 good veins and wanted a senior dr to do it incase she stuffed it up i guess!!
So i waited for about 1.5hrs and he walked in as his pager went off. He went to answer it and about another 1/2nd later they said that he had been called to a poorly baby in SCBU and would be at least another 2hrs.
So I decided to just come back this morning and get it all done in one shot! (famous last words)
We arrived at 9am about 10am a lovely dr came to put the line in......no joy but she did get some blood out.
So off we went to wait for the results to come back, sure enough she needed a transfusion, her HB was 7.6 and her retic count was 28 (which is good)
By the time we got back onto the ward the dr was going into a meeting but the blood wasn't going to be arriving till about 2pm.
At 2pm she tried again to get a line in. We told her that we were going to be discussing putting a port in tomorrow. She told us to exaggerate how bad it was, she said "tell them it took like 8 times today before we could get a line in"
She tried a couple more times then said she was going to ask someone else to have a go. Someone else came and tried a couple of times then the original dr tried again..........on the 8th attempt they finally got a line in!! In her foot.
I guess we don't need to exaggerate tomorrow then!!!!!
She has wiggly veins that spasm really well, so they get the vein no problem but can't thread it, the cannula only gets in so far then it spasms and it can't go in anymore. Plus now that she has some lovely chubbiness, it means the veins are even harder to see! (she weighed 15lb 12oz today :0))))
She was so upset, she cried and cried so much she was practically asleep before they'd even finished.
But of course she got over it no time!!
The blood went up at about 3.30pm in the end. And here we are now.........she has another 2hrs to go but she's peacefully asleep now, getting some well earned rest.
Friday 28 January 2011
Dr Pelidis clinic appt
On Wed 19 th Jan we took Reagan to st Georges to see Dr Pelidis.
We talked about putting Reagan onto steroids in the next mth or so, we will go back in 3 wks, check her blood, probably transfuse her then start the steroids a coup,e of wks after that. This allows the HB to drop a little and allow the steroids some room to boost it back up but not too low that if the steroids don't work she'll be in need of a transfusion again.
So she will initially start on a high dose which is likely to give her mood swings (although it might not....we can hope) it will increase her appetite and she will likely gain a fair bit of weight in a short time period. The trial will be unto 8 wks long, after some time the dose will be reduced gradually until either she is on allow safe dose and her HB is at a good level or the steroids are deemed a failure in which case it's back to transfusions with a view to doing a transplant in the next yr or two.
Before starting the steroids she has to have all her immunisations and a flu jab. We've also decided to immunise against chicken pox because it can be rather serious for her to get them while on steroids.
We also spoke about putting a port of cath in, so she doesn't have to have a canula put in every time and while on the steroids she will need weekly blood tests. This will be discussed on more detail at the next appt.
We talked about putting Reagan onto steroids in the next mth or so, we will go back in 3 wks, check her blood, probably transfuse her then start the steroids a coup,e of wks after that. This allows the HB to drop a little and allow the steroids some room to boost it back up but not too low that if the steroids don't work she'll be in need of a transfusion again.
So she will initially start on a high dose which is likely to give her mood swings (although it might not....we can hope) it will increase her appetite and she will likely gain a fair bit of weight in a short time period. The trial will be unto 8 wks long, after some time the dose will be reduced gradually until either she is on allow safe dose and her HB is at a good level or the steroids are deemed a failure in which case it's back to transfusions with a view to doing a transplant in the next yr or two.
Before starting the steroids she has to have all her immunisations and a flu jab. We've also decided to immunise against chicken pox because it can be rather serious for her to get them while on steroids.
We also spoke about putting a port of cath in, so she doesn't have to have a canula put in every time and while on the steroids she will need weekly blood tests. This will be discussed on more detail at the next appt.
Monday 17 January 2011
Southampton hospital
So today we took Reagan to southamton hospital to see a cardiac specialist, to check her heart.
To recap, she has a leaky valve.....the rest of it i really don't understand but i do know that at Frimley park hospital they really didn't think it was anything to worry about at all and were only referring her to southampton because of all her other problems! Just to be on the safe side.
Anyway, she get weighed and her height is done. She has gained another 2oz since Thurs (4days) and her. Height was 66.5cm which is now off the chart! Typical...just as she gets back on the chart for her weight she drops off for her height!!
Anyway, she had the echocardiogram, which once again she was so good for! The lady commented several times about how good she was and how very laid back she was.....such a good girl (if only she' sleep!!)
We went in to see the consultant and he said that everything is fine. Yes she still has all the things that we thought but they're all innocent and he was happy to discharge her...hooray good news! One less thing to worry about eh?
The only time he may see her again is if she doesn't respond to steroids and is transfuse dependant, after about 18-24 mths, I think, she would start chelation therapy, which will remove the iron form her body because she would have too much.......your body burns up your iron stores when it makes blood, of course hers doesn't so she doesn't use up any iron ad then she gets more iron each time she has a transfusion. So eventually she will have too much.
Too much iron will effect her organs, namely her heart and liver. So she would have iron chelation to remove it but her hear and lungs would still need to be monitored.
BUT.....good news today!
She's having her final lot of immunisations tomorrow because shes going back to see Dr Pelidis on Wed and we will be discussing steroids. She needs to be fully up to date with her immunisations before Ginger on steroids because it will effect her immune system.
She'll be due her MMR soon too and i also will be asking about immunising against chicken pox. They do this as standard in the US so hopefully i can get it sorted for her to have it because it could be quite serious for her to get them while she's on steroids. Peyton hasn't had them yet either and now that shes at pre-school she's more likely to pick them up!
To recap, she has a leaky valve.....the rest of it i really don't understand but i do know that at Frimley park hospital they really didn't think it was anything to worry about at all and were only referring her to southampton because of all her other problems! Just to be on the safe side.
Anyway, she get weighed and her height is done. She has gained another 2oz since Thurs (4days) and her. Height was 66.5cm which is now off the chart! Typical...just as she gets back on the chart for her weight she drops off for her height!!
Anyway, she had the echocardiogram, which once again she was so good for! The lady commented several times about how good she was and how very laid back she was.....such a good girl (if only she' sleep!!)
We went in to see the consultant and he said that everything is fine. Yes she still has all the things that we thought but they're all innocent and he was happy to discharge her...hooray good news! One less thing to worry about eh?
The only time he may see her again is if she doesn't respond to steroids and is transfuse dependant, after about 18-24 mths, I think, she would start chelation therapy, which will remove the iron form her body because she would have too much.......your body burns up your iron stores when it makes blood, of course hers doesn't so she doesn't use up any iron ad then she gets more iron each time she has a transfusion. So eventually she will have too much.
Too much iron will effect her organs, namely her heart and liver. So she would have iron chelation to remove it but her hear and lungs would still need to be monitored.
BUT.....good news today!
She's having her final lot of immunisations tomorrow because shes going back to see Dr Pelidis on Wed and we will be discussing steroids. She needs to be fully up to date with her immunisations before Ginger on steroids because it will effect her immune system.
She'll be due her MMR soon too and i also will be asking about immunising against chicken pox. They do this as standard in the US so hopefully i can get it sorted for her to have it because it could be quite serious for her to get them while she's on steroids. Peyton hasn't had them yet either and now that shes at pre-school she's more likely to pick them up!
Gone AWOL!!
God, its been sooooooo long since I've updated, sorry!
Now i have to work backwards again!
So the last time I updated I was taking Reagan to see Dr Salma the next day.
23/11/10 went to see Dr Salma, her first words were "she looks pale, when was she last tested?"
So i told her she had been done the day before etc, we came to the conclusion that it was just because she has been so poorly. TBH I'm not convinced that the test wasn't incorrect!
Reagan was weighed again, I just couldn't believe she had lost so much and wanted to be sure. She weighed 12lb13oz, so had lost more than I thought! A loss of 1lb 1oz.
In light of this and the fact that Reagan still doesn't eat solids Dr Salma suggested that she might be a candidate for a gastric tube going in through her stomach to feed her directly, just as a temporary measure until she picks up and is eating.
I was sure she would pick up, other than this set back she has followed her line quite nicely for a while now.
So shes referred her to Southampton hospital for s gastrostomy insertion (as yet we haven't heard anything.)
I asked about direct access to F1 (the children's ward at Frimley park) and she agreed to sort it out for us.
She said she'd write to the blood donation service to enquire about having our own group of donors for Reagan.
She referred her to speech and language therapy because shes not eating and so her muscles wont be developing properly which may result in a delay with her speech. Both the dietician and the physiotherapist also asked about this!
I asked when i should next get Reagans blood tested.....she said to leave it until after Christmas!!! Lol i just nodded and thought "yea right!"
25th Nov the lady from portage came over to asses Reagan. She went through a check list of things Reagan can and cant do. She said Reagan qualifies for the service and that she works very closely with physio and sometimes they would come together. Julie would visit and play with Reagan to see what she can/can't do and give us goals to work towards.
8th Dec I took Reagan for a blood test. We didn't want her getting too low, she had her christening in a few days time and in a couple of wks it was Christmas. Her HB was 7.5 and so she was transfused on 9th dec, 7 wks since her last one.
It was a bloody nightmare (literally!!) when we finally got the canula in and got going Reagan pulled the canula out after just 7mls of blood. The nurse tried as hard as she coiled to save it but in the end they had to put another canula in. Then when they started the machine kept saying there was air in the tube even though there wasn't. No matt what the nurse did it still Said it. She changed the machine and everything.
Eventually the next shift came on and another took over and managed to get it sorted but by now the blood had been out of the fridge for some time and she wasn't going to be able to get the full amount. So they hd to speed it up a little and she had to go with out the last 16mls.
Reagan slept from when they managed to get it up and running again, through all the observations the canula coming out, getting dressed to go out in the cold, into the car and home into bed!! She slept for a total of 7hrs straight.....amazing. It was midnight by the time we left the hospital.
At this Reagan was on her 2nd lot of antibiotics for a chest infection, she was I'll for 6 wks solid poor thing.Reagan weighed in at 13lb 11oz, so had very nearly put back on what she had lost! Yay.
Wed 15th dec Reagan had her 2nd lot of physio. Last time she slumped into her self when you picked her up, and she couldn't sit. This time she was much sturdier when lifted and could now sit for some time alone (she was 11mths to the day) she had begun to twist and lean to get a toy while sitting.
Her homeworkd was to work on the twisting and leaning. When she was lying on her back, to turn her onto her side and lift by her shoulder to encourage her to use her other arm to push her self up and strengthen her u pper body. Also to get her onto all fours and tummy tome!
We went away for new yr and while we were there ereagan really ate well and on the last day she even ate some rice crispies!! The very first cereal shes ever eaten!!
Since then Reagan has been eating really well and is now on 3 meals a day. She will still only eat rice crispies for cereal though!
A few days after returning i decided yo try Reagan sleeping hoer tummy, it made a huge improvement. She had progressively got worse again and spent everynight in out bed feeding about 7-9 times anight. Every time i tried to put her in her crib she woke up and just cried! But just a few dyad after putting her on her tummy her pattern was something like this, bed up in her bed at
About 8pm sleep till about 11-12 then every 3 -4 hrsish. She has spent every night since in her own bed!! It wasn't long till she was lifting herself up on to her hands though (which was very clever) and even got on to all fours her self, so i was worried she would soon pull herself up on the side of the crib. So on 11th jan, just 4 days short of her first birthday, she went into a cot!!
We decided to get her blood tested again the same wk, she had become pale and was sweating a lot. I decided that it was silly to take her for a test and then go back and have a canula put in. And so i used the direct access card for the ward and asked them to put a canula in at the same time as doing the blood test. This was done on wed 13th Jan.
Her HB was 7.2 and she went in the next morning for her transfusion. Tis time it was all very straight forward and we were in and out in just four and half hrs. 3 of which it takes for the transfusion to through! 5wks to the day since her last one.
They also weighed her, she was 15lbs on The dot!! So a great gain, about 4oz per wk since her last weigh in!
Fri 14th jan we had Anuska - physiotherapist and Julie - portage over. By now Reagan is nearly getting on to all fours herself from sitting. She can almost weight bare on her feet and can play with a toy while on her tummy!
Her homework is to work on getting from tummy to sitting and visa versa, getting her spend time on all fours.
And portage homework is to practice getting her to give you things willingly and to put things into a pot.
An hr after they left i was putting her to bed and she only went and sat up!!! I couldn't believe it. She has now done it a few times, I even caught it on camera.
Her sleep pattern is getting worse again though! We're lucky if she goes 3 hrs now! She'll still go down at a decent time though. I can spend over an hr trying to get her back to sleep sometimes, she'll go off for a few mins and thats it unless i feed her! What the hell do you do???
So i think that brings us up to date.
TTFN!!
Now i have to work backwards again!
So the last time I updated I was taking Reagan to see Dr Salma the next day.
23/11/10 went to see Dr Salma, her first words were "she looks pale, when was she last tested?"
So i told her she had been done the day before etc, we came to the conclusion that it was just because she has been so poorly. TBH I'm not convinced that the test wasn't incorrect!
Reagan was weighed again, I just couldn't believe she had lost so much and wanted to be sure. She weighed 12lb13oz, so had lost more than I thought! A loss of 1lb 1oz.
In light of this and the fact that Reagan still doesn't eat solids Dr Salma suggested that she might be a candidate for a gastric tube going in through her stomach to feed her directly, just as a temporary measure until she picks up and is eating.
I was sure she would pick up, other than this set back she has followed her line quite nicely for a while now.
So shes referred her to Southampton hospital for s gastrostomy insertion (as yet we haven't heard anything.)
I asked about direct access to F1 (the children's ward at Frimley park) and she agreed to sort it out for us.
She said she'd write to the blood donation service to enquire about having our own group of donors for Reagan.
She referred her to speech and language therapy because shes not eating and so her muscles wont be developing properly which may result in a delay with her speech. Both the dietician and the physiotherapist also asked about this!
I asked when i should next get Reagans blood tested.....she said to leave it until after Christmas!!! Lol i just nodded and thought "yea right!"
25th Nov the lady from portage came over to asses Reagan. She went through a check list of things Reagan can and cant do. She said Reagan qualifies for the service and that she works very closely with physio and sometimes they would come together. Julie would visit and play with Reagan to see what she can/can't do and give us goals to work towards.
8th Dec I took Reagan for a blood test. We didn't want her getting too low, she had her christening in a few days time and in a couple of wks it was Christmas. Her HB was 7.5 and so she was transfused on 9th dec, 7 wks since her last one.
It was a bloody nightmare (literally!!) when we finally got the canula in and got going Reagan pulled the canula out after just 7mls of blood. The nurse tried as hard as she coiled to save it but in the end they had to put another canula in. Then when they started the machine kept saying there was air in the tube even though there wasn't. No matt what the nurse did it still Said it. She changed the machine and everything.
Eventually the next shift came on and another took over and managed to get it sorted but by now the blood had been out of the fridge for some time and she wasn't going to be able to get the full amount. So they hd to speed it up a little and she had to go with out the last 16mls.
Reagan slept from when they managed to get it up and running again, through all the observations the canula coming out, getting dressed to go out in the cold, into the car and home into bed!! She slept for a total of 7hrs straight.....amazing. It was midnight by the time we left the hospital.
At this Reagan was on her 2nd lot of antibiotics for a chest infection, she was I'll for 6 wks solid poor thing.Reagan weighed in at 13lb 11oz, so had very nearly put back on what she had lost! Yay.
Wed 15th dec Reagan had her 2nd lot of physio. Last time she slumped into her self when you picked her up, and she couldn't sit. This time she was much sturdier when lifted and could now sit for some time alone (she was 11mths to the day) she had begun to twist and lean to get a toy while sitting.
Her homeworkd was to work on the twisting and leaning. When she was lying on her back, to turn her onto her side and lift by her shoulder to encourage her to use her other arm to push her self up and strengthen her u pper body. Also to get her onto all fours and tummy tome!
We went away for new yr and while we were there ereagan really ate well and on the last day she even ate some rice crispies!! The very first cereal shes ever eaten!!
Since then Reagan has been eating really well and is now on 3 meals a day. She will still only eat rice crispies for cereal though!
A few days after returning i decided yo try Reagan sleeping hoer tummy, it made a huge improvement. She had progressively got worse again and spent everynight in out bed feeding about 7-9 times anight. Every time i tried to put her in her crib she woke up and just cried! But just a few dyad after putting her on her tummy her pattern was something like this, bed up in her bed at
About 8pm sleep till about 11-12 then every 3 -4 hrsish. She has spent every night since in her own bed!! It wasn't long till she was lifting herself up on to her hands though (which was very clever) and even got on to all fours her self, so i was worried she would soon pull herself up on the side of the crib. So on 11th jan, just 4 days short of her first birthday, she went into a cot!!
We decided to get her blood tested again the same wk, she had become pale and was sweating a lot. I decided that it was silly to take her for a test and then go back and have a canula put in. And so i used the direct access card for the ward and asked them to put a canula in at the same time as doing the blood test. This was done on wed 13th Jan.
Her HB was 7.2 and she went in the next morning for her transfusion. Tis time it was all very straight forward and we were in and out in just four and half hrs. 3 of which it takes for the transfusion to through! 5wks to the day since her last one.
They also weighed her, she was 15lbs on The dot!! So a great gain, about 4oz per wk since her last weigh in!
Fri 14th jan we had Anuska - physiotherapist and Julie - portage over. By now Reagan is nearly getting on to all fours herself from sitting. She can almost weight bare on her feet and can play with a toy while on her tummy!
Her homework is to work on getting from tummy to sitting and visa versa, getting her spend time on all fours.
And portage homework is to practice getting her to give you things willingly and to put things into a pot.
An hr after they left i was putting her to bed and she only went and sat up!!! I couldn't believe it. She has now done it a few times, I even caught it on camera.
Her sleep pattern is getting worse again though! We're lucky if she goes 3 hrs now! She'll still go down at a decent time though. I can spend over an hr trying to get her back to sleep sometimes, she'll go off for a few mins and thats it unless i feed her! What the hell do you do???
So i think that brings us up to date.
TTFN!!
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