Friday, August 26, 2005
Tuesday, July 05, 2005
Two clinic visits and Hannah's first holiday
The last few weeks have been busy for Hannah. She had blood test done on 3rd June (not a whimper, brave girl) and we obtained the results on 10th June at an appointment with Dr Coad. Her LFTs remain stable, in normal range apart from a mildly elevated ALT. Here are the results.
Total bilirubin 5 (UK measure)
ALP 344
ALT 60
I also raised the paediatric assessment unit �issues� at this visit and have since received a copy of a letter Dr Coad has sent to them so hopefully next time there will not be any more problems�.hmm, won�t hold my breath�..
On 18th June Hannah embarked on her first ever holiday, to Dawlish Warren, Devon, SW England. This was much needed and anticipated by all the family. A fantastic time was had by all and we returned on Saturday feeling relaxed and refreshed. Hannah�s favourite aspect was the sand on the beach which she would have eaten by the spoonful if permitted to do so!
Yesterday was our first visit to Liver Clinic since January. Unfortunately we did not get to see Dr McKiernan but did see an excellent registrar who was most informative and receptive. There was plenty of good news. If things continue as they are, and subject to confirmation from Dr McKiernan, then she can stop her vitamins in October (1 year post Kasai), return to Birmingham in a year, and move to 6 monthly blood tests and local hospital visits. Woohoo!!!
She will continue indefinitely on her rotation of antibiotics. In a way this is a relief as I would feel extremely nervous about her stopping them. Her Urso has been increased from 60 mg twice a day to 100 mg twice a day. This is partly as her weight has increased and also to try to relieve the itching she gets in her ears (she scratches them until they bleed). If this fails then we have been advised to try Piriton (an antihistamine) before moving on to any of the more heavy duty itching meds.
More good news � her liver is now a normal size and long may that continue! The veins on her tummy which had been dismissed locally as �insignificant� were discussed as a possible symptom of portal hypertension. The doctor said it was encouraging that her liver and spleen are not really enlarged but reassured us that this would be monitored and we may have an ultrasound at our next visit to see �what�s going on in there�.
So all in all a good visit and our little miracle girl continues to astound us.
Total bilirubin 5 (UK measure)
ALP 344
ALT 60
I also raised the paediatric assessment unit �issues� at this visit and have since received a copy of a letter Dr Coad has sent to them so hopefully next time there will not be any more problems�.hmm, won�t hold my breath�..
On 18th June Hannah embarked on her first ever holiday, to Dawlish Warren, Devon, SW England. This was much needed and anticipated by all the family. A fantastic time was had by all and we returned on Saturday feeling relaxed and refreshed. Hannah�s favourite aspect was the sand on the beach which she would have eaten by the spoonful if permitted to do so!
Yesterday was our first visit to Liver Clinic since January. Unfortunately we did not get to see Dr McKiernan but did see an excellent registrar who was most informative and receptive. There was plenty of good news. If things continue as they are, and subject to confirmation from Dr McKiernan, then she can stop her vitamins in October (1 year post Kasai), return to Birmingham in a year, and move to 6 monthly blood tests and local hospital visits. Woohoo!!!
She will continue indefinitely on her rotation of antibiotics. In a way this is a relief as I would feel extremely nervous about her stopping them. Her Urso has been increased from 60 mg twice a day to 100 mg twice a day. This is partly as her weight has increased and also to try to relieve the itching she gets in her ears (she scratches them until they bleed). If this fails then we have been advised to try Piriton (an antihistamine) before moving on to any of the more heavy duty itching meds.
More good news � her liver is now a normal size and long may that continue! The veins on her tummy which had been dismissed locally as �insignificant� were discussed as a possible symptom of portal hypertension. The doctor said it was encouraging that her liver and spleen are not really enlarged but reassured us that this would be monitored and we may have an ultrasound at our next visit to see �what�s going on in there�.
So all in all a good visit and our little miracle girl continues to astound us.
Friday, May 06, 2005
All's well!
Hannah had her 8 month development check up on Wednesday. She now weighs 18lb 13oz and is still above the 50th centile line! She is very tall (perhaps I should say long!) at 73 cm (nearly 29 in).
Her development is completely normal for a baby of her age, which I really knew already but it's nice to have a health professional say it.
The doctor who examined her was asking about biliary atresia as she examined Hannah's tummy. I saw a look of concern come over her face, and she asked if Hannah had any symptoms now. I replied that her liver is enlarged, but stable, and the look of relief on her face was evident! She said she could just feel the edge of it. I can imagine that she just thought for a moment she would have to give me some bad news....
Hannah continues to be a complete livewire - I cannot imagine what a little terror she will be when she gets to Caitlin's age. At the moment she is into absolutely everything including picking up and eating microscopic particles from the floor. She is very difficult to keep amused and gets bored quickly, but overall is a very happy baby.
Coming up next - blood tests early June followed by a clinic appointment with Dr Coad on the 10th, then a much needed family holiday!!
Her development is completely normal for a baby of her age, which I really knew already but it's nice to have a health professional say it.
The doctor who examined her was asking about biliary atresia as she examined Hannah's tummy. I saw a look of concern come over her face, and she asked if Hannah had any symptoms now. I replied that her liver is enlarged, but stable, and the look of relief on her face was evident! She said she could just feel the edge of it. I can imagine that she just thought for a moment she would have to give me some bad news....
Hannah continues to be a complete livewire - I cannot imagine what a little terror she will be when she gets to Caitlin's age. At the moment she is into absolutely everything including picking up and eating microscopic particles from the floor. She is very difficult to keep amused and gets bored quickly, but overall is a very happy baby.
Coming up next - blood tests early June followed by a clinic appointment with Dr Coad on the 10th, then a much needed family holiday!!
Wednesday, April 13, 2005
Chubby Baby
WOW!!!!!
Hannah's weight has moved above the 50th centile for the first time since before her Kasai!!!!!As of today she weighs 8.21 kg or 18 lb 1.5 oz.
Fantastic!!! She has gained 3 lb in 7 weeks!!!!!
And it's all making little chubby arms and legs.
Hannah's weight has moved above the 50th centile for the first time since before her Kasai!!!!!As of today she weighs 8.21 kg or 18 lb 1.5 oz.
Fantastic!!! She has gained 3 lb in 7 weeks!!!!!
And it's all making little chubby arms and legs.
Saturday, April 02, 2005
Busy baby
With all the temperature drama I forgot to mention in the last entry that Hannah is on the move!!!!!And sitting up!!!!!! Shows how this thing means you can focus on the negative too much. She is getting around by rolling over and over, and can move round in a circle on the spot to change direction. She is sitting really well but needs plenty of padding around as she has a tendency to fling herself backwards. We have got a Galt playnest which we had for Caitlin and this is invaluable as she can topple in any direction without hurting herself.Another new development - we have seen the first evidence of her understanding words!! If you say 'Caitlin' she very deliberately turns around and looks at her sister.
Just for reference I was confused in my last entry by the holiday weekend. The temperature developed on Monday evening and the trip to the hospital was on Tuesday.
Just for reference I was confused in my last entry by the holiday weekend. The temperature developed on Monday evening and the trip to the hospital was on Tuesday.
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