Lucia and Tobin
-
-
Update for 18/10/2014
18 October 2014Hello everyone. This page is extremely overdue for an update, but somehow the task always gets put off until tomorrow. Well today is the day. I have finally finished a little 'thank you' video from Tobin himself and have posted it on this page so you can all see and hear him. Tobin has done amazingly well. He is fully mobile now (as I type this he is upside down, standing on his hands and has his feet balancing against my shoulder!). He still has a little trouble going down stairs, on uneven ground, going fast or long distances. But in comparison with what he was like only 2 short months ago it is just amazing! His speech has returned well. He talks non-stop in fact. It is very slow and drawn out, but his comprehension and vocabulary has returned to previous levels. The main thing he struggles with is his emotions. He loses control very quickly and over nothing significant. He is not able to be reasoned with when he is like this, and he gets violent and inconsolable for about 5-10 minutes. Unfortunately this is happening about 5-10 times a day as well, so it is often quite chaos here. Lucia had the same issues as this, but much more severe. As yet we have not been able to prevent this happening to her despite showering her in love and care, trialing all sorts of behaviour modification strategies, medication, alternative treatments etc etc (any solutions are very welcome!). Hopefully with the knowledge we have gained from Lucia's journey will help us with Tobin's and we can save him from having such a harrowing journey as her. Jared and I have been overwhelmed with the outpouring of love and support that has been sent our way. It has been very humbling. From the smallest contributions, through to amazingly large ones, for meals cooked, kids lunches made, hands on, practical day to day help, to spontaneous hand made gifts for all the kids. You have all been amazing. And it is very much appreciated! The donations you have given here via 'givealittle' are amazing. Initially Jared and I were not happy about this page being set up for us, we were embarrassed about giving the impression of 'asking for financial help'. But your overwhelming response has shown us that you were all eager to give something to help. So thank you very much... Very very much. At this stage we haven't used the money for anything significant... But I have treated the other two children, Darci and Milah, to a trip to Disney on Ice, complete with popcorn and candy floss. We may need to invest some of the money in some modifications to our home to make it easier for the kids to get around. We plan to keep the majority of it in an 'emergency fund' for treatments. Both Tobin and Lucia have to have treatment every 8 weeks in at Starship Childrens hospital, so that means that I am in there every month! So the costs associated with that soon add up. And if any new treatments become available somewhere in the world, we want to be able to be able to access it for the kids. The diagnosis has been confirmed as a genetic form of Acute Necrotizing Encephalopathy. We are currently testing the other two unaffected children, and hoping like anything that they don't have the gene as well. But no one can predict future costs involved in keeping them healthy, so once again THANK YOU for all you have given. The financial security it provides us is amazing and has definitely reduced our 'worry list'. I better finish this update here as the kids are getting progressively irritable with me being occupied on the computer. Please accept our thanks. Love from Sarah, Jared, Lucia, Darci, Milah and Tobin XO
0 comments | Login to leave a comment -
Update for 05/08/2014
5 August 2014Thank you all so much for your kindness. Jared and Sarah are blown away by this. An update on Tobin. I meant to update you all yesterday but got a bit sidetracked with bringing Toby home! He is breathing on his own after having the ventilation tube out on Monday afternoon. His airway/oxygen levels and heart function are all great. There is still no response at all. Eyes have not been open and he is making no purposeful movement so we are just doing what it takes to keep him comfortable. He seemed to relaxed at home, and needed far less meds to keep him comfy which was great to see. We are overwhelmed with all the support we have received - from this page, from those who have been bringing baking and dinners, the kids schools and daycare/playgroup. It is amazing to see that when it really matters, we find we are surrounded by such caring and generous people, some of whom are complete strangers. It is touching and humbling for us. The doctors are not expecting much change in Tobin's condition, but say he may last anywhere from a couple of days, to months, to years, in this state. So our main focus now is keeping him comfortable, and helping the other children come to terms with this. You may be interested to know how Milah (his twin sister) is dealing with this change in her special mate. She has accepted that he is very sick, and often mentions it. She is very caring towards him - wanting to help with his feeds, straightening out a bunched up shirt, covering him with a blanket etc. And she loves to give him cuddles and kisses. We can only pray for the same acceptance of our situation. The generosity that you have all shown will enable Jared to be flexible with work hours until things are settled here at home. So thank you so much. Everyone. We can't believe that he isn't just going to wake up and be our lively little Toby again, but we are grateful that he is comfortable and looks so peaceful.
0 comments | Login to leave a comment