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WELCOME, GUEST |
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pretty_boi_c…6 |
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WHERE THERES LIFE THERES HOPE
Always Hope |
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| Category: Home | Sun | Mon | Tue | Wed | Thu | Fri | Sat | | | | | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 | 12 | 13 | 14 | 15 | 16 | | 18 | 19 | 20 | 21 | 22 | 23 | 24 | 25 | 26 | 27 | 28 | 29 | 30 | 31 |
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STILL IN AND OUT
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Apr 23, 2008 01:37pm (EST)
Hope, 24 weeker born 3rd oct 2006 still thinks hospital is better than home!!!!!!
Hope just loves hospital, and the nurses love her so it make lifew easier.
Since November we have been in and out on numerous occasions, chest infections, kidney infections even an ear infection which because of her brain damage really knocked her temperature gauge out of whack we were sitting over 40 deg then dropping down to 35.5!!
Over easter we thought Hope had gastroenteritis, bloods all came back clear but she couldn't keep a thing down and lost over 2lb in weight, a lot for a little scrap! Eventually we got a barium swallow which concluded she had malrotation of the bowel and a volvulus (twisted bowel) usually symptoms include lots of pain, no not hope as per usual she just carried on smiling! So she was opened up untwisted and had appendix removed whilst there, the surgeons also found a 2nd appendix, apparently only 2% of the population have it so of course hope would, they took that out too!!!
We are home again now and back up to 18lb, its taken a while as she refuses to eat most days as she now has food adversion, she associates feeding with being sick. She is on overnight NG feeds, we offer oral during the day but it is entirely her choice wether she wants it or not we do not force the feeding issue so she can start to enjoy foor again not be scared of it. We are waiting to here wether she will bve getting a peg tube inserted although this could make her reflux worse it would be easier to manage. she can now sit up unaided. Speech is stuck at the 4 month age, she says lala still but thats it, sometimes it sounds like hiya which is cute. She has a rigid standing frame which she loves and a sporty pink wheelchair/buggy which is pink!!!
We also found out that she is on the waiting list for a special nursery seagul house and should be able to go from next march which will be great for her and hopefully bring her on a bit.
Its very hard being stuck and not really progressing any, I know she'll get there in the end and I'll never loose faith but she seems to have been a baby for so long I'd like her to start doing something!!!!
Here's some photo's of the smilie beast just after her latest surgery and one in her standing frame!
TTFN Sarah x
hope hospital march 08 019
sarah pohone 128
hope hospital march 08 022
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Posted by Always Hope | Comments: (2) | Permalink
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IN AND OUT :-(
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Nov 27, 2007 08:45am (EST)
Been a long time since I last wrote. I always seem to start with that sentence!
Hope was back into hospital again. Her swallow has regressed, she can no longer take any liquids at all, everything has be be thickened to a jelly to stop her asparating. On the upside she is eating lumps! No ones sure why this has happened, another mystery for Hope, we're just keeping everything crossed that it stops how it is and doesn't get any worse.
Hope now has ventalin and pulmacort nebulisers twice daily followed by chest physio and suction - yuck still getting used to that one! the morning is so long now before I can even get her fed. She has to sleep in a new tilted cot which is BLUE!!! in her lovely pink room, its terrible. Nevermind if she needs it she needs it. She's meant to be at a 45 deg tilt but we can't do that until her sleep system gets delived next monday.
We're still waiting on her chair to be delivered, it seems to be taking forever. Our OT has left which doesn't help as she was fantastic and very pro active in her approach, the new one doesn't return calls or visit or anything! She needs new splints but as vicky has left no one knows how to make them so I am on a 6 month waiting list for orthopedics, great.
We have got a standing frame through physio for her but she needs to grow an inch before we can bring it home, she looked very cute in it, and its pink!!!
As for development, no changes. She's still happy, singing away to herself in her own little world. Its lovely to listen to all day.
I've started with the christmas decorations, mainly cos I have so many it takes a week to get them all out. Hope loves the lights.
We should get word of her visual evoked tests soon, the only thing I've heard is that they are abnormal, but I knew that anyway.
Oh we also failed our hearing test, with 20% hearing in each ear. Not sure I believe this as she'll trurn around to see you walk into a room and jumps at noises, who knows. It's glue ear hopefully nothing else so once the vents are in it will hopefully come back fully.
Physio's pleased enough with her. Her legas and arms are great just low tone in one side of her back and high in the other. Very wobbly floppy neck! Her hips would be quite high too and her thumbs appart from the we are very lucky.
Not much else to tell. I will take some more photo's soon
Love Sarah xxx
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Posted by Always Hope | Comments: (0) | Permalink
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WE'VE MADE IT TO A YEAR!!!!!!!!!!!!!!!!!!!!!
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Oct 11, 2007 08:03am (EST)
Hope was 1 on the 3rd of October hurray!!!
What are we doing thats new???
Well she's found both feet now which is good, so both sockas get taken off instead of just the one!
Been ref to ENT to check her hearing, I think its fine but suppose best to get everything checked we go to every other clinic after all! She wouldn't turn her head to face the bells the Dr was shaking. YES thats because her head control is crap, HELLO? She did stop what she was doing and listen but she failed as she didn't (or couldn't) turn her head.
Synergis about to start again. Hope we steer clear of any major chest infections this year, oxygens on standby just incase 
We had a big meeting about Hope's future, we're no further on from where we were, I think everythings i place, OT's Physios etc. Still waiting on her new chair, the tumble form is no good for her now she has learnt how to arch her back and fall to the side in it.
The back arching is a complete nightmare, trying to stop her form doing it is an impossibility. The physio's tell me to keep her on her tummy, she back arches and flips herself onto her front! What can I do, any suggestions? I don't really understand why she back arches and what does it mean? All I know is its something to do with her cerebral palsy. Physio keeps telling me its the begining of the end, once they start they will never stop and therefore wont sit crawl etc, is this true? Anyone with any experience please let me know!!
Here's some photo's of Hope at her birthday party!
As always thanks for all the lovely messages and support through the year. Glad I found you guys!!
Sarah x x x 
hope's birthday 003
hope's birthday 004
hope's birthday 009
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Posted by Always Hope | Comments: (3) | Permalink
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BRIANS NOT GROWING :-(
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Sep 21, 2007 01:16am (EST)
Another busy week with appointments here there and everywhere!
Hope likes her new splints on her hands, she now has thumbs so is finding it a lot easier to pick things up and put in her mouth. The dribble is unreal I wish some teeth would come soon! Her night time splint is another story, she either tries to knock herself out with it or wriggles and wriggles until it comes off, we shall persevere with that one!
We had more scans this week. Hope's head has now been static for 3 months, the neuro's were hoping this was becasue her brain was growing inwards and the ventricle size was decreasing. Unfortunately this has not been the case. Hopes left hand side of the brain has not grown much since birth but the right side seems to have stopped now too. What does this mean? They say they do not really know as they brain still surprises them but their best educated guess is that developmentally Hope wil get stuck where she is. Not an easy one to get your head round but all I think is she's happy, so at least we have a quality of life all those dr's told us she wouldn't have. I will not give up on her yet I religiously do her physio and I am sure it is helping.
Hope is off for a swallow study next week as she is stuck on just eating really runny solids, they want to check nothing else is wrong there.
Luke's off school with a really high temp past few days and sore throat, he is barred from going near Hope, although he is fine with that, Luke's not moved from his bed for 2 days!!
Going to see neuro surgeon and neuro developmental dr on tuesday to discuss where we go from here with her care.... I will keep you posted.
We had a lady visit from childrens hospice yesterday Hope has been accepted to go for 14 days a year restbite. Although I feel I can cope at the moment it is nice to have evrything in place incase I do need it in the future. We are going to visit it the week after next to hae a look round. Apparently its amazing with multi sensory rooms, hydro pools the works. We can stay as a family too which would be a welcome break!
We also now have a carer who comes in to look after hope for 4 hours on a wednesday afternoon. This is so I can take Luke swimming and spend some time just with him as he has been feeling very left out. Luke has just been diagnosed with Aspergers, he has started special school and is getting on really well. There are only 12 in his class and 3 teachers! Fantastic, he has settled in and now enjoys school. Something I never thought would happen.
Well hopefully we'll have an uneventful weekend and I shall let you know the results of tuesday.
Thinking of you all
Sarah xxx 
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Posted by Always Hope | Comments: (3) | Permalink
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SO MUCH TO TELL...
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Sep 16, 2007 11:38am (EST)
Well its been a while and SO much has happened! I couldn't access the site cos my computer was being funny. I can't explain all the ins and outs it would take months but here is a brief last few months!!!
Hopes shunt became blocked AGAIN so off we went for more surgery. We only discovered this as she was rushed into hospital with suspected meningitis big purple rash we never did get to the bottom of that but they scanned her to look for brain swelling and discovered hopes ventricles were huge and her brain very small. New shunt in place all seemed great.
Tone very high in legs but we persevered with the physio and plodded along.
We went for a routine scan at the beginning of July it was a Thursday. 9am Friday morning I receive a phone call from Hope's Neuro surgeon asking me to call down to Paul ward so he can have a chat with me, nothing to worry about! Off I go Hope in tow only to be admitted. Very confused by this point her neuro comes in for a chat. I was asked if Hope had been sleepy -NO, Irritable -No, anything strange at all-No he was most confused then explained that hopes shunt had over drained so badly all the fluid was on the outside of her brain, so her brain had completely collapsed and he thought she may have had a bleed. She was rushed off the theatre for another shunt revision. 8 Hours later I was convinced something had happened why were they in so long....?
When they came out Mr Mcauly explained she had had a massive subdural heamatoma (big bleed on the outside of the brain) He said he had never seen a child with that much blood be conscious let alone smiling on the way to theatre!! We were told she would probably loose they use of her left hand side. It was really scary.
The next few days were hard but when Hope started to come round all limbs were working. On day 5 she smiled again, my little girl was still there!! Hope seemed to loose her swallow slightly and greatly regressed on her feeding but its coming back slowly.
The shunt is now a mechanical one which can be turned up and down via computer. Most baby shunts pressures are set at 50 Hopes was set at 100, she couldn't tolerate this for more than 4 weeks so they have turned her down to 80. This is to try and re inflate her brain.
As Hope is never symptomatic with shunt blockages/over drainage she now has a cat scan every 2 weeks to keep a close eye.
Where are we development wise? Hope can smile and laugh. Talking is around 3 months. She can roll over onto her left side then onto her tummy, but hasn't figured how to get back yet. Head control is great. Trunk control is coming along but she is high tone down one side and low down the other which pulls her into a curve. We are getting a specialist seat in about 8 weeks to help this as the tumble forms not great. (new chair's amazing clips into buggy too fab!!!) She is now fixing and following and will hold toys although this is more because she hasn't lost her grasp reflex!
We have a lot of problems but she's so happy and content i wouldn't swap her. She sings all day laughs at everyone so although she can spend a lot of time in her own little world its a very happy one, wish I could visit it!
We are 1 on the 3rd October!!!!! Hope has reached 15lb8oz I will carry on tomo with all the other news I have. Glad I can get onto the site again HURRAY missed you all
TTFN Sarah xx 
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Posted by Always Hope | Comments: (3) | Permalink
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