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!
Tuesday 15 February 2011
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.
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