tag:blogger.com,1999:blog-44808077603211257032012-01-30T03:10:49.130+11:00Join us in celebrating Harrison's life while he battles Bubble boy disease - aka : ADA-SCID (Adenosine Deaminase Deficiency causing Severe Combined Immune Deficiency) and RP - Retinitis Pigmentosa - degeneration of the eye leading to blindness. Harrison is one of maybe only 2 ADA deficient child registered for PID (Primary Immune Deficiency) in Australia.Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.comBlogger641100tag:blogger.com,1999:blog-4480807760321125703.post-23302144450652505422010-04-26T15:25:00.005+10:002010-04-26T16:09:09.100+10:00

Harrison is now 3 - March 6th marked this special day.Harrison and Marlie, sterling & Ella at Gold Coast on Holidays this year. They all loved this and spent an hour climbing on and around it :) Since the last blog Harrison has been immune wise stable but suffered from a number of bouts of pneumonia and ear infections. He is now back on his bactrim daily dose to help prevent further bouts, has

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com9tag:blogger.com,1999:blog-4480807760321125703.post-28938849121066979872009-12-20T12:29:00.004+11:002009-12-20T13:10:40.740+11:00

I know it has been a long time between posts and much has happened. The pictures above are of the little man -Harrison is off all his prophylactic meds ( ie those meds to stop hm gettign sick) and has had a course of immunisations which have worked well. He had pneumonia a few weeks ago again, and for the first time ever, he had a normal reaction to an infection. His white blood cell count

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com15tag:blogger.com,1999:blog-4480807760321125703.post-23094726404218470742009-07-08T10:30:00.002+10:002009-07-08T10:58:48.016+10:00

Well it is almost 2 years since Harrison had his first transplant done and things have developed Slowly but hey, they are still developing.The latest report from blood work done says this :" I am delighted to say that Harrison has normal IgG, M & A but the IgE is still elevated. His Ig subclasses are normal and he has normal blood counts. His lymphocyte count is 1.3 and has a low B cell count and

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com90tag:blogger.com,1999:blog-4480807760321125703.post-57743494296814592902009-05-24T01:12:00.002+10:002009-05-24T01:22:45.859+10:00

I know its May and still no recent photos. Computer issues hamper this badly but I have worked it out. So... While waiting for those to all upload, I thought I would write a quick update. Since the Central line came out in February - Harrison has had his second birthday. He has had a visited by Vision Australia to assess and start working with him for his growing blindness. And he has had two of

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-726566887817158472009-02-21T22:21:00.002+11:002009-02-21T22:31:12.877+11:00

Harrison came home Monday just gone - he still has his wobbly boots on and his eyes are very shaky at the moment, but he is eating walking around and talking up a storm as per usual.I enrolled Sterling in soccer today and am looking forward to going to days watching him play. Harrison's discharge summary said his lymphocyte count was 2.2. Now I hope this is truly the case as I can take Harrison (

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-92224786867819483812009-02-14T23:46:00.002+11:002009-02-15T00:10:05.498+11:00

Harrison has been moved to a standard Iso room, and has dropped off one antibiotic, so this is good, but the bad news is that he started vomiting tonight, as we have been force feeding him liquids in an effort to get his gut going again.If this force feedng doesn't work, we will have to put in - and for the very first time- a nasal gastric tube to get some fluids and nutrition into him. I

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com1tag:blogger.com,1999:blog-4480807760321125703.post-42796826864970153272009-02-12T11:44:00.006+11:002009-02-12T13:37:50.897+11:00

Its now 12 Feb 09 and Harrison has been here for 4 days with a central line infection and a really hasty gastro bug. He had his line removed on 11th feb- never to be replaced!!!What a milestone - here is a picture commemorating the day of removal.. He looks very puffy in his face and he is very very sick - in fact he has been under high observation due to spiking temperatures and having had a

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-45281330025607550392009-01-29T15:19:00.010+11:002009-02-12T11:36:21.851+11:00

Harrison above in the swing seat on Christmas morning. He just loves sitting and swinging.Harrison in hospital at Jan with Line infection around the central line site.The photo of Harrison with "santa" A blow up santa at the front of our house over Christmas - he kept asking to "See Santa" in his little baby speak - as very cute !I have attached some pictures and video of the boy at Christmas

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-45173447431973346902009-01-09T13:25:00.005+11:002009-01-09T13:33:45.994+11:00

Well we had a lovey Christmas and New Year, and a quick trip to hospital for a line infection on the 6th to 8th Jan. So far all is good after a few IV doses of antibiotics, and some to give him for the next 7 days orally.He is almost back to his old self - albeit a bit sleepy still.He had some bloods done in hospital which showed his neutrophils had dropped slightly below normal ranges, and that

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-8130663275348744052008-12-02T09:05:00.003+11:002008-12-02T15:27:47.521+11:00

Well I know it has been a while since my last post. Harrison (I feel) is doing well, and things are swiftly moving in life generally.On the 3rd September Harrison underwent a second bone marrow transplant - basically just the second lot of cells frozen away were used as a top up - to try to boost along his first BMT progress. This was cool as I got to see the whole thing - as I missed most of

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-15036907029575771222008-08-29T00:02:00.003+10:002008-08-29T00:19:33.538+10:00

Well things are not as rosy as I was hoping! Harrison will need his second bone marrow transplant after all, but he does not have to have the conditioning before it - instead they will give him the cells we still have frozen as a kind of top up. This is great news as we are only adding to his progress this far, not restarting - good for him, good for us and good that he has no chemotherapy to add

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com1tag:blogger.com,1999:blog-4480807760321125703.post-12796224205010538942008-08-08T23:00:00.002+10:002008-08-08T23:29:50.255+10:00

What a doosy this blog is - all very medical but I will try to keep it as simple as possible.OK on the 31st July Harrison had bloods taken to assess the progress of his transplant, and to quote our BMT Doctor - slow and steady.. More like just plain old slow - but that is enough of my griping.Harrison has a lymphocyte count of 0.8 (800 cells) so still a tad off the 4.0 we are aiming for - which

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com5tag:blogger.com,1999:blog-4480807760321125703.post-67554064122807943532008-08-08T19:13:00.002+10:002008-08-08T19:17:27.201+10:00

Harrison seems to think he is the next Bill Gates - microsoft would nmot know what hit them if this happened - something like a cyclone methinks.... fbSo Harrison is going to type and when he goes to bed vi will update ... see how helpful hhe is !!!!sv bfdsscxxcszcdnvfv g v fc ff fcv m ty n yuy uyxnn h fde54vbb ffd v czvvcfvvb frfvxscA aw2dsrAQVSFDX I will leave it to

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com1tag:blogger.com,1999:blog-4480807760321125703.post-31736511680703422982008-07-24T19:35:00.006+10:002008-07-25T11:47:15.389+10:00

We were lucky enough today to be a part of a nationwide drive to encourage people to become bone marrow donors. This is inspired by a 13 year old boy from USA - Patrick who has leukemia and is running himself silly getting people to become donors of bone marrow - too many of his friends have died while waiting and this story is a part of his crusade. Thank you Patrick for your unwavering devotion

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-1570939931365055622008-07-16T23:18:00.003+10:002008-07-16T23:31:35.773+10:00

There are an amazingly huge number of people out there who have supported, helped, worked and given up time to give us a hand, raise funds and visit in hospital .I cannot begin to thank my mum, sister, brother and Scott's sister Michele, her partenr Glen and all of their family for the unwavering support and help and calls to keep our chin up - and to Michael and Rhonda for their wonderful

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-9077263129798030242008-07-16T22:20:00.004+10:002008-07-16T22:53:43.497+10:00

Well I cannot firstly believe it has been two months between posts. I am so busy running kids around, doing physio and speech therapy with Harrison, taking the kids to school and gymnastics that i hardly have time to sleep!Things are ok at the moment. Harrison is still having Intragam every month and his cell counts are still - well frankly - crap. His lymphocytes are steadily dropping point by

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com1tag:blogger.com,1999:blog-4480807760321125703.post-32429967740605976612008-05-15T13:42:00.002+10:002008-05-15T13:57:40.879+10:00

Well things have settled here somewhat, with Harrison becoming a very normal little boy in many respects. He has discovered a few loves, most of which either gross me out totally, or make me laugh - usually at the same time !He is I think, in love with our vacuum cleaner. We have a bright green vax, and he spends a good part of the day playing with "Vaxie" - generally pushing it around. He has

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com1tag:blogger.com,1999:blog-4480807760321125703.post-27918510176211265652008-04-30T08:54:00.004+10:002008-04-30T11:21:54.180+10:00

Firstly I would like to take the opportunity to thank every one out there who asks after, emails, calls, sms's, or even just thinks positive thoughts for Harrison. I think the last week has been one of the most stressful and unhappy weeks of my life.Almost daily I found myself crying for no reason, other than just lacking in sleep and being stressed about these test results, and suffering right

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com2tag:blogger.com,1999:blog-4480807760321125703.post-42672992992942245242008-04-19T18:23:00.002+10:002008-04-19T19:01:14.501+10:00

Harrison had blood testing done at Children's hospital on Wednesday - we now have to wait a week for these results, with the hope that all is fine and the reason his blood counts have dropped is because of an infection of some kind in his system. I worry that he had the central line infection and his counts didn't drop so why now? I don't know - something in my gut just tells me things are not as

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com1tag:blogger.com,1999:blog-4480807760321125703.post-29761064033881040422008-04-15T17:27:00.002+10:002008-04-15T17:45:15.830+10:00

Last blog post I mentioned Harrison's blood counts have dropped. In lamens terms you and I have a count of about 4.0 lymphocytes or better ( or 4000 cells) Harrison has now 0.4 ( 400 cells) which is a crap amount and half of which he had a month ago.I have since this result been not sleeping well, stressed about these counts, worried about the chest x-ray he had done at the immunology review, and

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-51652467670286113722008-04-10T22:21:00.002+10:002008-04-10T22:39:29.414+10:00

I find myself asking this question a lot lately.. When ? When will the transplant be classified successful enough that I can go back to work? When will Harrison stop having monthly bloods, intragam, and reviews with doctors? When will life be normal again? In fact will life EVER be normal again?This last week has been so up and then down. Immunology review was good. No bloods or toxicology done

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com1tag:blogger.com,1999:blog-4480807760321125703.post-58882953651711323162008-03-31T12:45:00.005+11:002008-03-31T13:01:20.434+11:00

Well he's not Harry Potter - but he has just had a birthday - His giant big first birthday. 6th March 2008. What a massive year it has been and it took a lot of strength I really don't have at the moment to go back over the following pictures.I still cry - probably more now than when the bad stuff was actually happening , and these just make it even harder.. I don't actually know how we survived

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com3tag:blogger.com,1999:blog-4480807760321125703.post-15076470747292560922008-03-31T12:43:00.005+11:002008-03-31T12:45:15.554+11:00

We were lucky enough during the start of the new year to meet - over the phone at least another little ADA-SCID boy's mum. They live in South Australia and this little boy has not had a bone marrow transplant but is on the enzyme injections and is doing fantastically well on these - And so there were two!! ( In Australia at least ) :)

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-39267282063990956142007-12-28T22:51:00.006+11:002008-03-31T12:43:01.517+11:00

Over Christmas Harrison had an infection in his central line, and they Used Vancomycin antibiotics to treat this. Now for those of us out there who have immune deficient children, you will know ( and most likely love) this stuff.. However in Harrison's case this is not working. The doctor's are ordered daily cultures to be grown from the central line lumens ( his dangly lines hanging from his

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-49973396633738060282007-12-19T16:21:00.001+11:002007-12-23T11:35:26.554+11:00

Harrison as you now know has epilepsy, but in the investigations to find out if there is changes to Harrison's brain causing this epilepsy, the doctors did an MRI, which showed a lump at the base of Harrison's head, so then a CT scan was done to determine if the lump was on the brain or on the skull.As it turns out, it is on the skull. So Dr Webster felt it would be wise to follow on with a bone

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com3tag:blogger.com,1999:blog-4480807760321125703.post-66246324472463162432007-12-19T16:14:00.000+11:002007-12-23T11:42:04.871+11:00

Well the car is sold. It went on Saturday 22nd december.. So we are now officially carless. OMG - have no real idea what we will do without a car ( not that we go very many places) but the freedom of having a car has now gone! It was very sad watching my baby drive away, ut the family it has gone to are lovely so I wish my little AlQ all the best for his future!!The time has come to sell our car,

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-80583654307556409542007-12-08T01:05:00.000+11:002007-12-08T01:23:51.375+11:00

Harrison has had quite a lot of testing lately. Due to his being ADA deficient he had a 50 % chance of developing neurological problems - ie brain damage as the enzyme is not there to make the brain function properly. I thought we were looking like things were clear, however Harrison has developed epilepsy. Now I am not upset by the epilepsy part of things but that this means there is damage.I

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-89606421205292279262007-11-19T11:10:00.000+11:002007-12-08T01:05:02.989+11:00

Well we have finished this years fundraising and I have pictures galore to attach -Firstly the raffles & grandfinal day - we have many friends & family who have blessed us with their help and support. Donna arranged t-shirts for these fundraisers, and they are cute - we have below Lynne & Gabrielle modelling them at a raffle day .... The t-shirt has a picture of a teddy bear with writing that

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-60267642566100500682007-11-14T08:29:00.001+11:002007-11-14T08:48:09.332+11:00

Its been a while between posts. I've been living life on the freeway in autopilot mode. I think the car drives itself to the hospital now - and I can do it sleeping - or in a major traffic jam when trucks collide with cars and you have to leave 2 hours earlier than expected, just to get there in time!!Harrison has had quite a few visits etc to the hospital. So in order to bring things up to date

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com1tag:blogger.com,1999:blog-4480807760321125703.post-62509756342318843782007-10-29T11:13:00.000+11:002007-10-29T11:33:42.028+11:00

My recent posts have talked about Harrison's blood test resultsI asked the Dr's to clarify what these are, and what this means in terms of a normal person.So... Lymphocytes - a healthy 7 month old baby would have a cell count of 2.0 lymphocytes (or 2000 per ml3 (milli litre cubed) of blood. This would be the lower end of normal blood count.Harrison's recent lymphocyte counts were 0.5 - or 500

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com1tag:blogger.com,1999:blog-4480807760321125703.post-54218846210538122552007-10-24T16:55:00.000+10:002007-10-24T17:07:39.298+10:00

Another week has come with two hospital visits this week.The first was tues23rd Oct - to see the surgeon about the abscess on Harrison's bottom. Harrison has had this abscess since 5 weeks of age. He is now 7 and a half months old. It keeps closing over, refilling, bursting and then closing over again. It is often painful to him for me to touch it - as he mostly screams if I do.After the bout of

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-81884786701255907672007-10-18T20:43:00.000+10:002007-10-18T20:56:06.154+10:00

I have actually lost count already as to how many visits to hospital Harrison has had. Wednesday was a check with the immunology team who a happy with the weight and height he is. Even though to me he seems small in comparison to Marlie, Sterling & Ella, Harrison is holding his own.The formula concentration has been dropped back to normal, he is now eating solids really well - But I tell you it

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-24649781503405075072007-10-18T16:45:00.001+10:002007-10-18T20:43:24.726+10:00

I thought I should add this flyer for better benefit night info - Click on the picture to open up a larger version for printing and distribution. Plus it's a record then of the flyer and the work we put into Harrison's fundraising efforts.

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-14215112913103442292007-10-18T16:42:00.001+10:002008-12-02T09:05:12.623+11:00

We had a really good golf day for Harrison on 8th October. I wanted to post pics from this.

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-11171900345692292582007-10-02T21:35:00.000+10:002007-10-10T21:39:06.737+10:00

Harrison has again been to hospital. We went on Thursday a week ago, then came home the following Tuesday - but went back daily to hospital for IV antibiotics. He got a serious infection in both the lumens (the lines that you use to get bloods etc from) in his central line. So he's had 5 days of antibiotics in hospital and we got to come home - only to have to go back for two more days of IV but

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-54053905143724456892007-09-20T09:09:00.000+10:002007-09-26T13:50:57.484+10:00

Genetic testing came back from America yesterday too. This is different to the enzyme test previously done.This test was to see if they could find the specific ADA genetic mutation. Sometimes they cannot find it or it has not been reported before . In our case a few other cases have been reported with our same mutation.Now for those who wish they were doctors and or who understand genetics, I

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com2tag:blogger.com,1999:blog-4480807760321125703.post-7845082771284573182007-09-20T08:50:00.000+10:002007-09-20T11:01:54.824+10:00

I thought I would re-introduce you to my 5 year old, Marlie. She came up with a whole new baby theory yesterday - and it is well worth sharing :)Marlie told me and I quote: "You know when you go out for dinner, and that's when you get big and fat and pregnant."All I could think was GAWD HELP ME!! If that is how easy it is I am in trouble !! ha ha - Scott & I went to dinner when Harrison got home

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-68784468982081454302007-09-17T14:04:00.000+10:002007-09-17T14:23:12.182+10:00

Well last week Harrison's eyes started to act up again. And I saw a friends baby who is younger and doing probably the same things as Harrison. So I was a little depressed - cause its that next step - seeing the reality of how Harrison is not as far developed as he should be for his age. I am none the less very proud of my little man. He is very cheeky, Many Many smiles and coos and gas - however

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-61480308573626269712007-09-15T16:41:00.000+10:002007-12-10T16:06:02.423+11:00

We had a segment on Nine's Footy Show about Harrison - I am trying to get a copy to load onto this site - however, I can tell you they did a lovely job - It may even still be on their website.Now I know the quality isn't the best - and we are getting better copies done - but for those who missed it go to the following link if you 'd like to see it...That's Gold Grand final segment What a

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-23707070676891646712007-09-10T16:52:00.000+10:002007-09-11T21:13:41.236+10:00

Harrison's eyes have gone funny again. This is what they (the Doctors) call nystagmus and it is getting worse again. If you try to do what he does, you will find it most disorienting, and he really does struggle with it from time to time. But he is still soooo cute - so I thought I would start to share some video of him. I hope you can all see it ok. (And yes I am VERY biased as to just how cute

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com2tag:blogger.com,1999:blog-4480807760321125703.post-48777438000302871162007-08-27T21:55:00.000+10:002007-08-27T21:57:19.198+10:00

I finally got the Eels Pictures downloaded - There they all are ..

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com1tag:blogger.com,1999:blog-4480807760321125703.post-18954199681214341232007-08-27T21:49:00.000+10:002007-08-27T21:49:43.920+10:00

This is the photo we are using for the fundraising. It reminds me every time I see it just how sick he was then and how careful we have to be not to get back to that. I also see how far he has come. He was sitting on my chest today while I laid on my back, and he was looking at me while I blew raspberries on his feet and then he'd crack up laughing. Such a gorgeous kid. How lucky I am to have

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-1427857071460577222007-08-17T12:08:00.000+10:002007-08-17T12:26:16.224+10:00

I thought I'd add a cute pic of the kids - they have been so good this week, even with me being a cranky pants!!Well this has been an interesting week. We saw the pediatrician on Monday, then the community nurse on Wednesday, by Thursday Harrison had developed a cold.So he is ok, but has a runny nose and a cough. I called Westmead Childrens and spoke to Sam, (Dr Sam Mehr ) and they are happy to

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com1tag:blogger.com,1999:blog-4480807760321125703.post-34825428167159143952007-08-14T14:37:00.000+10:002007-08-14T15:00:31.331+10:00

Forgive the dark nature of this post. I am struggling with life this week. The pressures of being at home full time are starting to mount. The only bright point in all of this is that Harrison's cell count at 30 days post transplant showed signs of female cells - about 10 % of his blood count in fact. This is pretty damn good, and means that the bone marrow is grafting- now we wait to see

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com2tag:blogger.com,1999:blog-4480807760321125703.post-74276918470629250402007-08-09T10:05:00.000+10:002007-08-09T10:25:21.915+10:00

We have been put in contact with another family in Queensland (QLD). The IDF of Australia are a foundation for parents and families to have contact with like families suffering the same disorders. Our Harrison as you know has ADA-SCID, while Harrison from QLD has 'IL7 Alpha Receptor Deficiency'. Another form of SCID and also a genetic inheritance.We were lucky enough to meet and I have had the

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-90461379707763690352007-08-06T20:27:00.000+10:002007-08-06T21:53:12.178+10:00

Home.. what a lovely place to be. The kids have been so well behaved and were so excited to see Harrison and myself as they walked through the door.Harrison is very much not used to the chaos that goes with 3 children running around and making noise, but he is settling well. So far so good, no sniffles or disasters occurred in our first weekend. Harrison has taken to our old net bouncer, and I

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-40239711684236244522007-08-06T20:23:00.000+10:002007-08-06T21:47:50.421+10:00

Well.. we didn't click our ruby slippers together, but we are home.The amazing nursing staff... What does one say ? We were gifted with a bunch of amazing and talented people. Our small gifts and words of thanks will never be enough to really say thank you for all that was done for Harrison and our family.It has been a very trying journey and this photo is representative of how far Harrison has

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-57509257323863212202007-08-01T19:40:00.000+10:002007-08-09T10:24:18.783+10:00

We are finally going home. I thought I'd do a little review...Harrison before getting sick. 5 weeks oldThen Harrison gets sick and swells and needs oxygen.Then he is off oxygen, still swollen and losing weight.11-12 weeks oldIVIG and albumin help restore his system a little, skinny but looking a little better.He learns to smile, he has the transplant and starts to gain weight.16 - 17 weeksPlaying

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-881123982205830952007-08-01T19:11:00.000+10:002007-08-01T19:11:57.842+10:00

I look at this photo and wonder to myself, what if I had taken Harrison to hospital a week earlier or even a day earlier. You see I was researching today meningitis and its complications. As we are reasonably sure Harrison suffered both Meningitis and PCP pneumonia, I thought, I wonder if he could have the hearing and vision problems because of that and not due to SCID. Either way the

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-72931056457852906622007-07-29T18:21:00.000+10:002007-08-01T21:55:31.708+10:00

We had a visit this weekend from Mum and the kids, and also from our lovely friends, Di & Wattie and their daughter Rebecca, her husband Sebastian and their beautiful baby Annabelle.It was such a lovely thing to catch up with friends, and just watch the kids run around outside in the sun and play in the wonderful playground the hospital has set up. Life almost seems normal - if only for a few

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com1tag:blogger.com,1999:blog-4480807760321125703.post-31849305537883248392007-07-29T17:28:00.000+10:002007-07-31T13:21:14.470+10:00

I thought it would be good to include a bit on bone marrow and the blood products Harrison has received. We all see the adverts that ask us to Donate, but here are some interesting facts about why this is really such an important thing. Without these donations of blood products (Intragam and Albumin), Harrison quite simply would not be here.BONE MARROW - The Australian Bone Marrow Donor Registry

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com1tag:blogger.com,1999:blog-4480807760321125703.post-78483202489980785592007-07-28T21:52:00.000+10:002007-08-27T21:53:03.929+10:00

We had some good fun stuff happen while in hospital.We met the clown doctors, Dr's O-Oh yesterday. Ella was a bit freaked out by them - but they were generally very funny. Plus there is Captain Starlight - who runs the Starlight room and TV channel. Captain Starlight is a wonderful source of entertainment and movies to the kids, and is an excellent way of encouraging children to get better with a

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-76714166187191394622007-07-28T21:39:00.001+10:002007-07-31T13:25:30.920+10:00

Well transplant is all done, and Harrison has jumped ahead in leaps and bounds. This post will bring you up to date with the last two weeks post transplant.Harrison has started smiling more every day, he is happier than I have ever seen him and is "talking", squealing (on occasion) and laughing.He has twice weekly blood tests. Already we have seen an improvement in his liver enzymes. Everything

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-4084793127884536432007-07-28T21:16:00.001+10:002007-07-28T21:37:51.030+10:00

I thought now would be a good time to tell you all about the various types of blood cells we have in our blood.Bone Marrow - this is the source of our immune cells. Ella's bone marrow will gradually overtake Harrison's, and the ideal result will be he produces white cells that have ADA enzyme. Ella only has a 0.5 count which is slightly below normal range of (0.6 - 1.6) - but even a small amount

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-80296157978671150602007-07-28T20:59:00.000+10:002007-08-01T19:18:59.644+10:00

The day arrives in the normal way - Harrison crying hungrily for a feed.I message Scott on the phone to get Ella ready and we go up together with her to register for her day surgery. She was placed on the emergency list so we got there early so we didn't miss a window.Lyn, the ward granny came today and sat with Harrison while Scott and I sat with Ella.At 10 am I went up to feed Harrison on the

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-66366294346844777802007-07-28T20:28:00.000+10:002007-07-31T13:26:25.676+10:00

Starting from 6th July.Last week was all about the eye problems and the hearing, this week is all about bone marrow. Transplant talk, blood tests and assessments.On Friday 6th July 2007, Harrison had the third lot of IVIG. I noticed as did all the doctors that his nystagmus settled after this lot, so maybe that is the key - get his immunoglobulins up and the nystagmus may improve? We can only

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com1tag:blogger.com,1999:blog-4480807760321125703.post-22120771214650044832007-07-28T20:15:00.000+10:002007-07-31T13:13:20.424+10:00

THANK YOU!!!Thank you to all of our friends and family. Your kind words of love and support have meant the world to us.It wasn't until Harrison got sick that we came to realise just how lucky we are for the family we have and for the amazingly strong and large support network of our friends.Friends came back into our lives that, due to the passage of time and distance, had not been contacted.

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com1tag:blogger.com,1999:blog-4480807760321125703.post-57006653495921587462007-07-28T18:01:00.000+10:002007-07-31T13:03:17.301+10:00

Its funny what happiness means, for me when I had Harrison I had a sense of completeness. His being born was a miracle in itself, having been lucky enough to maintain a pregnancy even after the insertion of an IUD.It frustrates me to this day that no amount of cuddles, kisses, wishes and feeding will change what Harrison has, but I hope it helps. I feel helpless on an almost daily basis to be

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-70203912165022840362007-07-28T13:54:00.000+10:002007-08-01T19:40:38.854+10:00

For those of you who know us well, you know we have four children, with Harrison being our youngest. I decided to focus on these guys for this post, as I feel that they are a credit unto themselves.Mum took them in under her wing, and for the first two weeks they lived over at mum's house. When we realised how long we'd be in hospital with Harrison, Mum moved into our house.Marlie is now 5 - her

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com1tag:blogger.com,1999:blog-4480807760321125703.post-63431768379779411632007-07-28T00:04:00.000+10:002007-07-28T15:49:29.659+10:00

As I have said Harrison has also been diagnosed with Retinitis Pigmentosa (RP) and failed his hearing test.The hearing test was repeated with a bone conduction, to bypass any congestion Harrison had in the ear canal. He has what they are currently terming mixed moderate hearing loss. More tests are still needed to determine the extent of this though, and will be done under a light sedation after

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com3tag:blogger.com,1999:blog-4480807760321125703.post-59102156456452936902007-07-27T23:56:00.000+10:002007-07-28T15:42:12.239+10:00

Its the end of June and despite all the little problems and impending BMT, Harrison has learned to smile. It is lovely to see him just look and act like a normal baby. He is now generally well, and is feeding well.His complimentary feeds have reduced to only about 20- 40 ml per feed as my milk supply came back very well. I am encouraged by this as I know that he is getting, even in very small

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com2tag:blogger.com,1999:blog-4480807760321125703.post-91712163908753530962007-07-27T23:45:00.000+10:002007-07-31T13:21:57.388+10:00

Ella is diagnosed as a suitable donor for Harrison for Bone Marrow Transplant (BMT).Ella is scheduled to undergo tests and reviews by medical staff for her suitability as a donor. I feel so guilty that Ella is coming down to the hospital for a visit and winds up being tested for something else. She;ll eventually not want to come.My guilt is two fold, as I fell so happy that we are lucky enough to

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-16982071005607878372007-07-27T23:28:00.000+10:002007-07-28T13:44:43.256+10:00

As the last post told, we found out on the 18th June that Harrison has SCID, caused due to the deficiency of ADA enzyme in his blood.ADA deficiency is one form of SCID (severe combined immunodeficiency), a type of disorder that affects the immune system. ADA deficiency is very rare, but very dangerous, because a malfunctioning immune system leaves the body open to infection from bacteria and

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0tag:blogger.com,1999:blog-4480807760321125703.post-83643709948523575412007-07-27T22:36:00.000+10:002007-07-27T22:36:57.683+10:00

This is the first of no doubt, many posts re Harrison.Let's go back through his history.Harrison was born on Tuesday 6th March 2007 at 10.10 am - (Ella his 2 year old sister was also born at 10.10am.. Possibly a coincidence? You will later come to find that she also perfectly matched Harrison as a Bone Marrow donor!)Harrison seemed fine, at birth. He grew, fed and gained weight well until he was

Harrisonhttp://www.blogger.com/profile/14602768023699251120noreply@blogger.com0