Into Day 4
August 6th, 2008
Its very strange, so much seems to happen in one day and yet the days still seem so long. Corey has PT (physio) every morning for approx. 1 hour, then in the afternoons he has Electric wave therapy for 20mins and between all this he gets visited by 2-3 doctors per day. Unfortunately Corey wasn’t all that co-operative for PT, but this is improving everyday. Its when they do stretching with his legs that he cries, as this hurts him, buts its also where he needs it the most.
Monday afternoon was Corey’s first IV injection. They put a IV into his hand, put a IV bag on (fluid) and then we went upstairs for the stem cells. They gave him a anti rejection injection and then the stem cells and he was ok for a little while but then he started to cry, and then really cry. It was upsetting. I was worried that he might be in pain for the stem cells, but he eventually settled down. The whole thing was only for about 20 mins in total but it seemed like hours.
Friday afternoon is his first Spinal Injection. He can’t eat or drink for 6 hrs before, and he will be sedated for the procedure. Following the procedure he has to lie still (like very still, no moving at all) for 6 hrs to prevent him from getting a severe headache. Also I have to keep his activity to a minimum for 48 hrs following. That’s a lot of Elmo movies. I have learned a lot from sitting in the common lounge area and talking to the other parents/caregivers about their experience to date. Everybody is very friendly and willing to help where they can. Some of their experiences have been eye opening. Some parents have had to basically lie on their child to keep them still for six hours. As you could imagine it was very traumatic for the child and the parent. I have gotten tips like, get him up early to have something to eat and don’t let him sleep all day so that by that time he will be tired anyway. Also request that he be sedated so that between the sedation and him being tired, he will most probably sleep for the six hrs following. No question about that, Corey will be sedated. I also need to make sure that the nurses give him liquids via IV before and after the procedure.
So have I noticed anything? Well its to early to say. He does seem to be speaking more in sentences. I think this is due to so much interaction and activity, which is good. Also I noticed that I don’t have to correct his index fingers when he holds his water bottle like I always had too. I noticed this that Monday evening because it was such a common occurrence. But this could also be from all the constant correcting finally paying off. I hope to give you a further update early next week.
Thanks for the comments they are really appreciated by us both. Also those parents from home, read up on hyperbaric therapy (HBO), apparently it can be very valuable following treatment at between 90-120 days. Also parents with children with CP who have used HBO have had improvements.
Entry Filed under: cp,Uncategorized
10 Comments Add your own
1. Judy and Harold and Dani | August 10th, 2008 at 1:48 pm
Dear Corey – Wishing you a very happy birthday. We are following your progress over there,now that we are on line. Saw all the family last night and had a wonderful dinner cooked by Nonna Rose – Lots of love and hugs to you and Dad xxxx
2. admin | August 10th, 2008 at 2:37 pm
Corey. happy birthday! You are the sweetest boy I met…
Jessie
3. Cameron Ryan | August 10th, 2008 at 3:50 pm
Dear Corey, wishing you a very happy 3rd birthday, hope you are having a great time celebrating at your party today. We are following your progress and wish you all the best in the weeks to come. With lots of love from Nanna Rosa, Nonna Tony, Cameron, Melinda, Olivia and Mason Ryan
4. Louisa Alas | August 10th, 2008 at 6:00 pm
Hi Corey
All of us in Brisbane would like to let you know we are all thinking about you & whish you all the best. A little bird told me last night that it is your “BIRTHDAY” so we would like to wish you a “Very Happy Birhtday” & may it bring you love & happiness.
You are always in our thoughts.
Love Zio Alfio & Zia Joyce & families (Brisbane)
5. Holly | August 11th, 2008 at 8:20 am
Hello Corey,
Therese and I wanted to wish you a very happy (belated) birthday and tell you we are thinking of you often!
Looking forward tos eeing you on your return to Aus
Holly and Therese
6. morag Parks | August 13th, 2008 at 11:48 am
Great to read the blog entries – so many people at playgroup are asking how Corey is doing. We are all thinking about you and missing you Corey. Sounded like you had a good birthday party.
All the best – Morag and Parramatta Playgroup
7. Maria galeano | August 17th, 2008 at 1:10 pm
Dear Mark and Coreye
, Have just been able to read all about your progress and we are hoping that all continues to go well for you and that there will be some wonderful results. We miss you at daycare and are looking foward to having you back so till we see you again we shall keep you in our prayers and hope that all continues to go well and you continue to cope well and keep up the good work . Take care and best wishes Mariax
8. Maria galeano | August 17th, 2008 at 1:14 pm
Dear Corey
Have just read all the progress so far and we hope that all continues to go well for the rest of the time you are away.
We miss you at ddaycare and hope that you continue to do well and acheive your dreams. Mark, keep up the good work and stay strong as we keep you both in our prayers, take care and a big hug to Corey. best wishes your daycare carer Maria
9. Alf | August 20th, 2008 at 6:50 pm
Hi Corey, Good to hear you are well. We are thinking of you and really hope all goes well. Love from Alfie (early intervention) xxx
10. Maria GALEANO | August 23rd, 2008 at 7:12 pm
Dear Corey
I have been reading all about your progress and just hope that all is prgressing well. we all miss you at daycare and wish you all the best for the rest of your treatment and will be looking forward to having you back. Mark, you are doing a fabulous job. take care and all the best from your daycare carer Maria
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