I'm posting this separately even though vie done it at the same time as the result post because that was so positive and this one isn't so much and i didn't want to darken the 'happy' post!!!
Any way reagan's had diarrhoea for the last wk, she slept delay well on sat nighth, which is not like her at all!
And yesterday ( Sunday) she was sick, so I took her the out of hours GP last night. He wasn't worried and said she was well hydrated and it was probably just a bug.
But then today she seemed to go down hill, even though the diarrhoea finally seems to be getting better. She has Been so sleepy, floppy, and she hasn't eaten anything since Friday.
I spoke to dr Pelidis and she said that we really should have direct access to the childrens ward for times like this. Its pointless a GP seeing her, she needs to see a paed.
Anyway. They did her bloods and amazingly her HB is 10.6!!!!!! I was well impressed with her. They said that if the diarrhoea isn't any better by wed then she needs to go back, but it seems to be better already. Also i should see a marked improvement in her with in 48 hrs other wise again take her back.
He said that they wouldn't like to transfuse anymore than is absolutely necessary because the least amount of donors she has the better!!!!! ggggrrrrr its one of the reasons i want her to have her own donors! I'm seeing dr Salma tomorrow so will ask again. If not we've thought maybe we will ask if St Georges will do it for her. Also Dr Salma should be able to sort out direct access to the ward for us.
Also she was weighed while we were there, she was fully clothed and weighed 5.9kg which is about 13.1oz, that's a loss of 13oz in just under 2 wks, plus she was naked at her last weigh.
I expected she may have lost a little of stayed the same but not that much!
Monday 22 November 2010
REEEEEEEZUUUULT!!!!!!!!
OMG OMG OMG..................
We have the results back from the tissue matching, I'm sure you've already guessed..... Yep we have the result we wanted.
Not one but TWO matches, both Kennedy and Cade are a bone marrow match for Reagan. And remember I was hoping Peyton wouldn't be the one!!!! Even got that wish eh!!!
God dear, what a relief that is!
We have the results back from the tissue matching, I'm sure you've already guessed..... Yep we have the result we wanted.
Not one but TWO matches, both Kennedy and Cade are a bone marrow match for Reagan. And remember I was hoping Peyton wouldn't be the one!!!! Even got that wish eh!!!
God dear, what a relief that is!
Sunday 21 November 2010
Dr Pelidis' letter
So like i said i got the letter from dr Pelidis on tue, it's always so much clearer when its written down. When we're in her office none of it makes sense etc.
Anyway, I can't remember if I is aid that they found a mutation or something in one of her ribosomal genes??? Well they have and Dr Pelidis said it was one that was yet unpublished, but I've found it documented loads of times.
Basically they now know of 9 ribosomal genes that are mutated in DBA patients. They only have 1 mutated gene and they a account for about 50% ish of DBA patients.
Reagan has a mutation of RPL35a, she has a heterozygous mutation which means that only half ot it works but with out that half working the other half cant work either.........at least I think that's what it means.
I've also found out that once they have knowledge of a mutated gene that is a 100% confirmation of DBA.
Reagan has still got some kind of tummy bug, that's been a wk now. Peyton is pretty much the same though so it's obviously hanging about. But it means that Reagan is going through 2 outfits a day and 2 babygros a night. Which means midnight changes......and bedding changes. The other day I had no change of clothes for her so she had to go round Costco naked with her fluffy snow suit on. She kept sneaking her arm out and exposing her self!!! Luckily it wasn't too cold!!!
She's off her food now, so the little progress we did make has now gone! She's not even eating biscuits!
I've. Early finished The Match, it has taught me so much. It's pretty gruelling and horrid to think of that poor little girl going through everything that she does. It's hard to imagine that Reagan could be in her shoes one day and Alex and in in her mum and dads. ATM things aren't too bad for Reagan but it seems that this may be a false pre tense.
We still don't have the results back to tell us if anyone is a match for Reagan. I spoke to Dr Pelidis on Friday and she chased them up for us, they said early this week hopefully. So if I haven't heard anything by mid afternoon Tuesday I'll call her again.
What she did have though was some more results back from all our blood tests.
All of us had a good HB levels, I may have already told you that. All of us had normal sized blood cells, DBA patients have enlarged ones. And our ADA levels were done, DBA patients have elevated ADA levels.
Reagans was done just before her last transfusion, ideally it should be dome be before ever having a transfusion but even so reagans were significantly elevated. It doesn't say what they were.
Alexs was 78, either Cade or kaylums was 97, mine was 100, Kennedy was 104 and Peyton was 127. I cant remember whist the other one was but it was normal.
It should be between 60-100 (I thunk that's right, definitely not above 100) so I'm borderline but Kennedy and Peyton are high. Dr Pelidis said this may mean nothing but it may also imply that we are carriers of DBA. I'm not sure yet if they'll look into tat further.
Hopefully next time I blog it will be to say one of the children is a match!!!!!!!!! Fingers crossed anyway.
Anyway, I can't remember if I is aid that they found a mutation or something in one of her ribosomal genes??? Well they have and Dr Pelidis said it was one that was yet unpublished, but I've found it documented loads of times.
Basically they now know of 9 ribosomal genes that are mutated in DBA patients. They only have 1 mutated gene and they a account for about 50% ish of DBA patients.
Reagan has a mutation of RPL35a, she has a heterozygous mutation which means that only half ot it works but with out that half working the other half cant work either.........at least I think that's what it means.
I've also found out that once they have knowledge of a mutated gene that is a 100% confirmation of DBA.
Reagan has still got some kind of tummy bug, that's been a wk now. Peyton is pretty much the same though so it's obviously hanging about. But it means that Reagan is going through 2 outfits a day and 2 babygros a night. Which means midnight changes......and bedding changes. The other day I had no change of clothes for her so she had to go round Costco naked with her fluffy snow suit on. She kept sneaking her arm out and exposing her self!!! Luckily it wasn't too cold!!!
She's off her food now, so the little progress we did make has now gone! She's not even eating biscuits!
I've. Early finished The Match, it has taught me so much. It's pretty gruelling and horrid to think of that poor little girl going through everything that she does. It's hard to imagine that Reagan could be in her shoes one day and Alex and in in her mum and dads. ATM things aren't too bad for Reagan but it seems that this may be a false pre tense.
We still don't have the results back to tell us if anyone is a match for Reagan. I spoke to Dr Pelidis on Friday and she chased them up for us, they said early this week hopefully. So if I haven't heard anything by mid afternoon Tuesday I'll call her again.
What she did have though was some more results back from all our blood tests.
All of us had a good HB levels, I may have already told you that. All of us had normal sized blood cells, DBA patients have enlarged ones. And our ADA levels were done, DBA patients have elevated ADA levels.
Reagans was done just before her last transfusion, ideally it should be dome be before ever having a transfusion but even so reagans were significantly elevated. It doesn't say what they were.
Alexs was 78, either Cade or kaylums was 97, mine was 100, Kennedy was 104 and Peyton was 127. I cant remember whist the other one was but it was normal.
It should be between 60-100 (I thunk that's right, definitely not above 100) so I'm borderline but Kennedy and Peyton are high. Dr Pelidis said this may mean nothing but it may also imply that we are carriers of DBA. I'm not sure yet if they'll look into tat further.
Hopefully next time I blog it will be to say one of the children is a match!!!!!!!!! Fingers crossed anyway.
Tuesday 16 November 2010
Dietician
I took Reagan back to the dietician, Sarah foster, yesterday.
Reagan has improved with her eating over the last wk or two and her weight is following it's own little curve.
So Sarah wasalittle less worried! She gave me some milk to give to Reagan instead of normal formula. Although she nexts to never has formula it's better than normal stuff, plus if I can ever get her to eat cereal I can use it.
She was going to suggest a speech and language therapist but decided that because she has improved that it's not necessary.
We go back to see her at the end of Jan, to be honest i don't feel there is any real gain from going to see her, other than the milk. She doesn't suggest anything that we're not already doing.
Reagan now has another tummy bug, lovingly given to her from peyton. She had diarreah all day yesterday and again through the night. Causing 3 outfits and a set of bedding to be added to the washing!
Then she woke this morning with a temp of 38.3. I'm taking her to the drs today, just incase! I need to get this milk on prescription anyway so......
I ails had the letter through from dr pelidis yesterday, I'll blog that separately though, I'm still researching what it says!!!
Reagan has improved with her eating over the last wk or two and her weight is following it's own little curve.
So Sarah wasalittle less worried! She gave me some milk to give to Reagan instead of normal formula. Although she nexts to never has formula it's better than normal stuff, plus if I can ever get her to eat cereal I can use it.
She was going to suggest a speech and language therapist but decided that because she has improved that it's not necessary.
We go back to see her at the end of Jan, to be honest i don't feel there is any real gain from going to see her, other than the milk. She doesn't suggest anything that we're not already doing.
Reagan now has another tummy bug, lovingly given to her from peyton. She had diarreah all day yesterday and again through the night. Causing 3 outfits and a set of bedding to be added to the washing!
Then she woke this morning with a temp of 38.3. I'm taking her to the drs today, just incase! I need to get this milk on prescription anyway so......
I ails had the letter through from dr pelidis yesterday, I'll blog that separately though, I'm still researching what it says!!!
Friday 12 November 2010
Physio
Reagan had her first physio today.
We spent a lot of time going over her problems and condition etc before we got on the floor and got her to show off her skills!!!
She's given me some ideas to help strengthen her and increase her abilities.
She plotted her on the percentile and she was way off!! She's about where a 3-4mth old should be except that she can sit.
We'll see her again in a month, she'll come to our house next time.
We spent a lot of time going over her problems and condition etc before we got on the floor and got her to show off her skills!!!
She's given me some ideas to help strengthen her and increase her abilities.
She plotted her on the percentile and she was way off!! She's about where a 3-4mth old should be except that she can sit.
We'll see her again in a month, she'll come to our house next time.
Kidney scan and clinic appt
We went for reagans kidney scan at st georges on tue 9th nov.
We waited flaming ages to be seen and they were very thorough!
He asked me to sit on the end of the bed to amuse her because babies/children tend to get upset.
Reagan didn't she just laid there as if this was something she has done several times a day! It was funny, he really didn't expect her to be so still and calm. Her hands were flopped above her head and everything.
Anyway he said her kidneys are lovely. The right shape, both the same size, in the right Place etc. A little small but thats to be expected because she's small!
So good news there!
We had a couple of hrs to spare so went into Wimbledon for lunch and returned to the hospital at 3pm for her clinic appt.
She weighed in at 13lb14oz, so a 3oz gain in 3 wks, not bad. Her length is 63.8cm, so she's stretched too!!!
No results as yet about the bone marrow match but all the blood was good, all our HB levels were good, especially Alex, how was up at over 15!!!
also our blood celll size was good. DBA gives you an enlarged blood cell.
The full results are back from Portugal, although she doesn't have any of the mutated genes they were looking for she does have something with another gene. I cant remember the word/s she used to describe it but when the letter comes through and it's down in black and white it always makes more sense so I'll update again when that arrives. She did say that they mitt be interested in studying he because of that and so long as it wasn't too obtrusive fore reragan she was happy for that to happen, as are we- anything to help the research.
Other than that all was well, we decided not to test her blood and to give her another couple of wks, its been 3 wks since her last transfusion.
We'll go back and see her in Jan!
Today shes. Having her first physio appt, I'm currently waiting to be called in! So again I'll fill you in as soon as i can.
I'm off to donate my first lot of blood today! I've printed off a picture of Reagan having a blood transfusion to take with me. I'm going to ask if i can leave ir with them for other donars to see how important it is to do what they are doing!
Other than that, she doing fine. Her eating is getting ever so slightly better but her sleeping isn't!! *big sigh* last night she was up loads and today I'm glad it's Friday......because I'm bloody knackered!!!
Ttfn
Xx
We waited flaming ages to be seen and they were very thorough!
He asked me to sit on the end of the bed to amuse her because babies/children tend to get upset.
Reagan didn't she just laid there as if this was something she has done several times a day! It was funny, he really didn't expect her to be so still and calm. Her hands were flopped above her head and everything.
Anyway he said her kidneys are lovely. The right shape, both the same size, in the right Place etc. A little small but thats to be expected because she's small!
So good news there!
We had a couple of hrs to spare so went into Wimbledon for lunch and returned to the hospital at 3pm for her clinic appt.
She weighed in at 13lb14oz, so a 3oz gain in 3 wks, not bad. Her length is 63.8cm, so she's stretched too!!!
No results as yet about the bone marrow match but all the blood was good, all our HB levels were good, especially Alex, how was up at over 15!!!
also our blood celll size was good. DBA gives you an enlarged blood cell.
The full results are back from Portugal, although she doesn't have any of the mutated genes they were looking for she does have something with another gene. I cant remember the word/s she used to describe it but when the letter comes through and it's down in black and white it always makes more sense so I'll update again when that arrives. She did say that they mitt be interested in studying he because of that and so long as it wasn't too obtrusive fore reragan she was happy for that to happen, as are we- anything to help the research.
Other than that all was well, we decided not to test her blood and to give her another couple of wks, its been 3 wks since her last transfusion.
We'll go back and see her in Jan!
Today shes. Having her first physio appt, I'm currently waiting to be called in! So again I'll fill you in as soon as i can.
I'm off to donate my first lot of blood today! I've printed off a picture of Reagan having a blood transfusion to take with me. I'm going to ask if i can leave ir with them for other donars to see how important it is to do what they are doing!
Other than that, she doing fine. Her eating is getting ever so slightly better but her sleeping isn't!! *big sigh* last night she was up loads and today I'm glad it's Friday......because I'm bloody knackered!!!
Ttfn
Xx
Thursday 4 November 2010
Sleep and stuff!
I think Reagan may had had stomach bug. We've had some 'experiences' in the nappy dept over the last wk and a half. Her sleeping deteriorated again.
She sleeps from around 8pm -11pm but after that.........
Last night was the all time worst I think. Even though she's always woken a lot she's always been easy to pacify. Over the last few nights she's gradually got worse. She'll only sleep if I feed her, a cuddle is not good enough. When I put her in her crib she wakes immediately!! Plus she now has a thing about touching/fiddling with my face so she does that in her sleep and fidgets and twitches. She just isn't settling properly!!
She still won't eat a great deal, I bought an avocado the other day, she had 3 mouth fulls, which are miniscule!3 seems to be her limit for everything except yogurt. She wont even eat banana any more. She did have an entire round rich tea on Monday though which amazed me!
I've bought a book called 'the match' all about a family who's little girl has dba. They have a pgd baby so their daughter can have a bone marrow transplant. It's very educational for me! I have to read each paragraph about 3-4 times to make sure I understand what it said. It's driven home just how shitty and huge all this dba stuff is though. Its very scary.......bloody frightening.
Send Reagan some sleepy dust for tonight please, hopefully Alex and I will get some sleep too!!!
She sleeps from around 8pm -11pm but after that.........
Last night was the all time worst I think. Even though she's always woken a lot she's always been easy to pacify. Over the last few nights she's gradually got worse. She'll only sleep if I feed her, a cuddle is not good enough. When I put her in her crib she wakes immediately!! Plus she now has a thing about touching/fiddling with my face so she does that in her sleep and fidgets and twitches. She just isn't settling properly!!
She still won't eat a great deal, I bought an avocado the other day, she had 3 mouth fulls, which are miniscule!3 seems to be her limit for everything except yogurt. She wont even eat banana any more. She did have an entire round rich tea on Monday though which amazed me!
I've bought a book called 'the match' all about a family who's little girl has dba. They have a pgd baby so their daughter can have a bone marrow transplant. It's very educational for me! I have to read each paragraph about 3-4 times to make sure I understand what it said. It's driven home just how shitty and huge all this dba stuff is though. Its very scary.......bloody frightening.
Send Reagan some sleepy dust for tonight please, hopefully Alex and I will get some sleep too!!!
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