Progress - slow but steady wins the race.

My recent posts have talked about Harrison's blood test results

I 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 cells per ml3 blood.

Also the chimerism (ky-mer-ism) test done to determine Harrison's bone marrow transplant function showed that t-cells were 45% female( Ella's cells) and the B-cells were at 22%.

So the bone marrow is starting to take over from Harrison's cells - but has a ways to go yet and unfortunately no great improvement in the lymphocyte counts etc.

Having said that, Harrison's count did climb a little from 0.2 to 0.5 (or 200 cells to 500 cells) so that's something.

Also the Intragam ( plasma product that has some antibody properites) has really helped too. His levels are staying up pretty well at normal levels with each months transfusion, which is such a great thing. Although it doesn't stop him getting sick, it does mean that he can have the best fighting chance at keeping well. To anyone again who reads this and donates blood , THANK YOU. It is a great thing we live in the age we do - and that the wonderful donations made can keep our baby so well.

I am so proud of Harrison and Ella - and the achievement being made with Ella's bone marrow. Of course, we are not out of the woods yet (so to speak) Harrison still has a long way to go before he is normal and can join the outside world. It is reall y hard at the moment cause he seems so well. And he is leanring to do things really well, but I worry daily that he is going to be receovered, and I worry that whole"what if the bone marrow doesn't make things right? What then?" Its a very uncertain time for us, and as summer encroaches I would love to take all of the kids to the beach and swimming - but it is still not safe for Harrison to go out yet - and so we stay home.

Also very proud of him that he makes progress every single day . As I previously noted in my last blog that he babbles now - a great achievement in itself - and today he did a new thing again (Previously he learned how to roll one way) but ... as the newspaper people arrived here doing a story about Harrison for the benefit night, he suddenly rolled the other way for the first time! What a star is my little man? I am trying to capture footage of it - so taht you can all see it - but of course most of the time I get the after shot!! Lol

Also a great deal of thanks have to go out to our friends - for all the calling and emailing to make sure we are ok, and keeping us sane when the isolation would have otherwise driven us nuts! You know who you are - and you are worth your weight in gold.

Another day another doctor

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 hospitalisation with his central line infection adn the 4 medicines he got for that the abscess seemed to be healing. However I noticed Monday that the little heads are forming again and his bottom is quite red again. Dr Harvey took a look and has decided to lay it open. I am worried what they will find when it is done, particularly if it is something more than just the surface abscess they seem to think it is.

Further, Harrison's lack of immune system can lead to serious infection - as the operation will leave a large open raw wound area right next to his anus. Not a great spot at the best of times, let alone for a kid with Harrison's immunity issues. He healed ok when they did the surgery to place his central line. But that was a 1 cm cut and not a great deal of open wound. I am frightened this will not be so successful, but the surgeon (who has delayed this surgery now 4 times) feels it is a calculated risk but worth doing now.

So this Friday we go to Gosford hospital for IVIG (Intragam - antibodies transfusion) again & then next Wednesday 31st October we go into hospital again for the surgery.

Tehn as I think I've said on the 6th we have the eye test review - which I am also worried about and then 9th hearing tests.

On a plus Harrison is rolling from side to tummy with assistance and he is babbling dada - why is it that dad always gets the first "word" - Ho Hum!

I will add a picture of him in the next post. Kids are all screaming at each other and I am close to having a melt down. Its been a very stressful week - one that I don't see getting any less stressful. ( That and we haven't yet had as many ticket sales to hte benefit night, and that is starting to worry me too. )

Thank you to all of you for reading this site. I love to see that we get lots of returning and new visitors alike.

Hospital visit number...

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 was hard yards getting him to eat them at all.

Dairy is a no go zone for little H, and his eyes and ears, well I'll get to that in a minute.

Once we saw the immunology team, Where Harrison was given the royal treatment - Sam ( Dr Sam Mehr for the uninitiated) is my main Dr contact and he is always up for a cuddle. But then he called Dr Alyson Kakakios ( Alyson) a cuddle nazi - which I thought very funny cause he likes cuddles just as much as Alyson.. But hey she has a nickname now that she'll never live down!

It makes for a fun visit when we see the Immunology team.

Then a nearly 4 hour wait to do the eye check. They gave him some eye drops and we sat and waited in a dark room for 20 minutes once he had them in to get him "dark sensitised". Marlie was with me for the day and she was a little unnerved by being awake and in the dark for so long. The staff gave her this little pen torch with a red cap on it and she was happily shining red light everywhere.

Harrison's eyes did what the team expected with Retinitis - didn't respond all that well to the light impluses. Then they left him for 5 minutes with lights on and repeated all the tests. To me it didn't seem like there was a very big difference in the dark vs light testing.. In fact the lines that they look at seemed pretty flat ( not much up and down range from the horizontal line)

So I guess he has retinitis confirmed from this but we'll know more on the 6th November. ( Another hpspital visit)

So I now have 23rd Oct - Dr Harvey for the check on his abscess. Since he was hospitalised for the central line infection, Harrison's bum seems to have cleared up? Will know that for sure next week too. Then 26th October for Intragam AGAIN!! then 6th November eye Dr appointment to discuss the results and further testing then 9th November for the hearing test under sedation . 4 appointments, in three weeks is pretty good going and all bar one at Westmead. Lucky the car drives down there on autopilot now.

Hopefully we'll still have a car then? Trying to sell it so that we don't have to pay for a lease with the money we currently bleed from a stone! I am now, you see, on unpaid leave so MONEY is tight. Very tight, but then you don't need to be a rocket scientist to work out that we were gonna get tight on one income when we were used to living on two.

Anyway will keep you posted (LOL) as to how things r going with Harrison. The physio was happy with him the other day - so that is a plus.

benefit night flyer

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.

Golf Day

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

To hospital again & support

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 hey that is so much better than living at the hospital again :) They did his next lot of intragam, so he's all IG'd up for another month - but even so I see delays in development now. He seems to have stagnated in his progress.

As always the support of our family and friends has been sensational - we are truly blessed. I am also very lucky to have found a wonderful forum for PID on the web in Essential Baby. There are a few mums who chat about their lives with Primary Immune Deficiency. I am very lucky to have this sort of support to. Cause not only can we discuss our sick children, but about life in general - and this keeps me sane.

We are both (Scott & I) stressed as I am now on unpaid leave - and the future is so uncertain. I just have to hope for the best. But I am making the calls this week to the banks and mortgage and hopefully we'll get some sort of relief. I am also looking for some night work to help make ends meet. What a world.

Harrison is doing ok though otherwise and he's booked in now for a physio assessment next week to see his progress and what it is I have to do with him to help him along. He has such poor arm and tummy muscle strength. But he tries to sit up and even though he's wobbly he tries which is good enough for me.

I popped a pic of him recently wedged into the corner of the lounge. As you can see his head drops to one side and he doesn't sit "up" but he tries.

We are also meant to be writing up all the thank you's from the grandfinal day and Golf day, but I find this task increasingly overwhelming. So many to do but just not enough time in the day. I hope that those that have helped and supported us know that it's late only because I have 4 children to look after, a million calls and emails to follow up on each day and try to sort out a way to keep our house and car. But if you happen to read this site and are one of those people that have donated gifts, cash, time or support then please hear me when I say thank you. It is only with such generous support that we can help Harrison get the best possible care and treatment he deserves.