Tuesday, August 26, 2008

A change in plans

Hello Everyone

After a lot of phone calls and discussions between various different and important parties we have had a change in plan with regards to Deqlans port removal , vaccinations and therapy sessions!

You know what they say, a change is as good as a holiday!

Because the live vaccinations , in the form of the mmr and chicken pox vaccines, can cause complications if administered to close to an anesthetic, and because Dr De Jager feels it is more important to get the port out then give vaccinations at this stage -we have decided to first have the port removed, wait a few days until Deqlan has recovered and then administer the first of the vaccines. This way, we minimise compromising his system by having him healthy and strong into the anesthetic to remove the port.

Our amazing surgeon Prof Beale is away in Australia at the moment, so we can only chat to hom on Friday when he returns, and will only then know when the removal will happen. As you know , there is no discussion that no other surgeon will ever touch Deqlan again.

So, this means that Deqlan will probably only have the vaccines after his 2nd Birthday

This means that the format of you of the vaccines changes from a 6 in 1 , to a 3 in 1 - this means Deqlan will need an additional 3 injections to catch up on everything we need to give him , so 10 in all!!! Shame, poor guy, but we will work out the schedule as best as we can as to minimise side effects and not jab Deqlan with to many shots in one day. So, things are going to take a little longer then we planned, but this is Gods plan and thats the plan we are going to follow - we believe that Deqlans port didnt work 2 weeks ago to perhaps lead us to removing it first, so we trust that this is the right way to go .It just means that Deqlans Birthday party will still be a little smaller this year to continue limiting germs, but next year, boy oh boy is going to be a huge celebration with you all!
The other suggested change comes from our therapists. We are going to try and do a few different things to see what kind of reactions and progress we can get out of Deqlan. As mentioned before deep pressure excercises seem to be a firm favorite with Deqlan and we definitely see results. These include brushing Deqlan down every 3 hours, swinging in a hamock, lying on the floor, sliding on his tummy and his big favorite at the moment, the jets of the jaccuzi- we definitely see a calmer, less frustrated Deqlan after this activities, especially after the jaccuzzi. We are also going to start swimming lessons which we know Deqlan will love.
So we are going to continue these specific activities at home, and try and teach Deqlan things straight after, when he is calm and ready to take it all in . We are also going to try and set up play dates with a few buddies who dont go to school , at least twice a week to increase Deqlans interaction with kids his own age and bring the activities we wouldve done at therapy, into the play session with his friends. Another suggestion by the girls is horse riding therapy for movement integration .

Instead of having therapy at the centre, our therapists will work through us, in Deqlans home environment. We will monitor his progress over the next 6 weeks and then sit down again to decide what works best for our soldier. By this time, Dr Smuts will re evaluate Deqlan again and give us her opinions and suggestions.

I am very excited to try something new and definitely to be around other kids , Mark and I know that this is going to make a huge difference for Deqlan.

Enjoy the new pics they are from the past few days- we had our first braai at our new place and were thrilled to have Grandpa and Nanna, Great Grandpa, Conrad , Meggie and Keaton as our guests for the afternoon .We had a great time watching the boys get up to mischief, especially our monkey we discovered a 'sand pit' in the garden beds of our garden. Deqlan took great delight in tasting the sand, rubbing it in his hair and throwing it all around him - how it didnt land in his eyes i dont know! Deqlan showed everyone how much he loves the sprinkler and then we decided to go for a walk to the park after dinner. The boys enjoyed a bath together , but little Keaton was ready for sleep time by then and nodded happily off into the land of nod, while Deqlan continued to play and entertain us for a little while longer! The other pics are of Monday, even Keaton was sporting his green outfit in support of our soldier remaining NED !!!

Well , its a big week for a lot of our family and friends please help me pray as follows:
1) For Will's scans on Wednesday and Thursday to show great improvement
2) For little Declans tumor to respond to chemo and be destroyed completely
3) For Arden to heal and for her respiratory problems to be resolved
4) For Ruans stem cell transplant to be a huge success and for courage and patience for his Mom Yolandie
5) For Dee's psa cancer levels to be down and for him to remain healthy and well
6) Miracles for Max

Please remember all our friends around the world, their families and friends, our angels in heaven and their loved ones to.

Have a great week, and please please continue the prayers for Deqlan , always to remain NED

God Bless and lots of love
Mark, Samm & Deqlan


Lisa Reid said...

Congrats on the wonderful news and your new place it looks stunning : )

Debbie said...

Sounds like a wonderful plan of action to get Deqlan progressing more and more. Continued prayers as always! Love all the pics so much-Deqlan is getting so close to 2 isn't he? How exciting!
Debbie & Connor khoury