Weight: 15.1kg
Height: 99.5cm
Favourite Foods: cooked vegetables such as carrots, peas, pumpkin and butternet. Rice with gravy, mashed potato. Oatees!
Favourite Drinks: Still trying to find something he
likes! (ave: 200-300ml per day)
The first 4 months of this year have just flown by and it is with great amusement (and annoyance!) that I see that my weebly account seems to have
“lost” my 2013 updates to date! (Note here: perhaps it is my lack of technological skills to blame here!) So apologies to all!
It has been an extremely busy time in the Hershensohnn household, as we try to settle Tayden back into the school environment, get back into
therapies and try out best to keep him healthy. We have been fairly successful in all areas, with Jan & Feb seeing him settling into his little playschool
well, therapies going well and each day we see how he develops. He is even sliding down a slide on his stomach now, head first! For us, a major
accomplishment. Granted, each time l am still nervous he hooks his mickey and I am going to end up at casualty ready to replace it, but it is a small price to pay for progress!
We went to the paediatrician for his quarterly update and though we were SO HOPING he would be 1m by then, he is still juuuuust under, at 99.5cm!
The weight was sitting at 15.4kg (so we are down a little) but we just keep swimming and believe that all will come right. One day at a time! He is now the
size of an average 3 year old at 4yr 6m but I can live with that…we just keep praying for progress.
Tayden has been rather ill with croup twice already, last Friday 11:30pm seeing us speeding down to the ER with a child who couldn’t breathe. It was very
scary, it has been a while since we have had to deal with that and I definitely would not like to relive it! He has been off school the last week as the doctor
didn’t feel he was well enough or strong enough to attend but I am pleased to report he is looking much better. I am hoping that illness so early on in the year isn’t a forewarning of what is to come in winter! As you know, Tayden has always had issues with his chest and has been hospitalized on many occasions for pneumonia, bronchitis and croup.
Our major news is that we have managed to get him into a“normal” preschool. I was told by people that I should not even consider it and that I should enroll him into the special needs school here in PE, that he will never fit in, that he is not good enough, not ready, blah blah but one thing that lots of people don’t know, is that you never tell a mother “never!” and you never tell her to limit her child’s choices when she KNOWS he is capable of it! Yes, some preschools turned us down or were simply horrified by the feeding peg but I am realising that this is now THEIR loss that Tayden won’t be there! This mom just ignored all the negative people and pushed and prayed and met with the principal at a very special school and told her that he needs just SOMEONE to give him a break! I laid out all the issues, explained how we are dealing with them on a daily basis but neurologically there is nothing wrong with him and he needs someone other than his family to BELIEVE IN HIM and allow in into a normal school. And she told me that she would, that she would give him that break! I was so relieved and
grateful I nearly burst into tears in her office! We are also putting measures into place (eg. having him visit the school, play with on the toys, see his
classroom) beforehand in order to get him relaxed within St Marks’ environment and we will also meet with the teacher beforehand and go through everything she needs to know. It should not take long, it is very simply – if the feeding tube
comes out, call me, put a piece of gauze over and keep him calm until we get there. Nothing else they CAN do! We are so chuffed with this, as this school
only has 18 kids in a class (which will suit Tayden’s sensory issues very well!) and it is close to my mom for her to collect him in the afternoons. Once again,
God provides!
Our other major news is rather negative I am afraid and not something that l like to think about, as it has negative implications forTayden. We have had to stop all therapies with immediate effect, due to no funds being available. We have worked as well as we could with the little money that was in the trust when we got home from Austrian and then used our savings to pay for the last couple of months worth of therapies but that is now also depleted. Our medical aid is depleted and after his recent illnesses we also have outstanding amounts for doctors’ consultations and looking at him today and hearing another cough develop, I am pretty sure there will be more to come. I have thought long and hard and have decided that this is a case of God helps those who help themselves and I have taken the initiative, along with some friends, in looking at some fund raising options for Tayden. He desperately needs his therapies to be able to keep progressing as he has been, and therefore be up to par with the other kids when he hits preschool next year. He is coming along in leaps and bounds and although he IS doing well, there is still major work to be done, especially with regards to OT and his sensory issues which are extremely severe. His speech is doing well too but there is also plenty of work to be done there. He is not onto 5-6 word sentences and it is such a joy to hear him chattering away to me!
So, look out for the official invite, but for those of you who would like to support us, the first event is on the afternoon of 1st June, and is a Tea for Tayden. This is for the ladies to enjoy and costs R50 a ticket. If you are interested in attending or would like to contribute a prize or something towards his therapies, please drop me a line on [email protected], I would be most
appreciative of your support.
Lastly, have a look at some of the numbers that make up Tayden’s life. I am hoping that these will bring home what a little fighter I have here!
4 Tayden’s age;
51 The number of times he has been hospitalized;
3 The number of times he has been admitted to ICU;
37 The number of months he has had a feeding tube;
9 Tayden was 9 months when he underwent his surgery to put in his feeding tube;
6 Adding all his hospital stays together, the amount of time in months he has spent there;
8 The number of months he was without a mickey before we had to reinsert it after teaching him to eat and drink;
15 The number of operations he has undergone in his young life;
R2500 The price of a replacement mickey (feeding
tube) which can rupture at anytime;
7 The number of mickeys he has gone through;
3 The number of birthdays that have gone by that we have had to miss giving him a party because he would not be able to handle it due to sensory
overload;
180 000 The amount raised to get him to Austria and allow him to eat and drink again. This was also used to fund his therapies and medical expenses until now, when it is depleted;
0 The number of times his mom and dad have given up on him living a normal peg-free life
Thanks for reading xxxxx
Height: 99.5cm
Favourite Foods: cooked vegetables such as carrots, peas, pumpkin and butternet. Rice with gravy, mashed potato. Oatees!
Favourite Drinks: Still trying to find something he
likes! (ave: 200-300ml per day)
The first 4 months of this year have just flown by and it is with great amusement (and annoyance!) that I see that my weebly account seems to have
“lost” my 2013 updates to date! (Note here: perhaps it is my lack of technological skills to blame here!) So apologies to all!
It has been an extremely busy time in the Hershensohnn household, as we try to settle Tayden back into the school environment, get back into
therapies and try out best to keep him healthy. We have been fairly successful in all areas, with Jan & Feb seeing him settling into his little playschool
well, therapies going well and each day we see how he develops. He is even sliding down a slide on his stomach now, head first! For us, a major
accomplishment. Granted, each time l am still nervous he hooks his mickey and I am going to end up at casualty ready to replace it, but it is a small price to pay for progress!
We went to the paediatrician for his quarterly update and though we were SO HOPING he would be 1m by then, he is still juuuuust under, at 99.5cm!
The weight was sitting at 15.4kg (so we are down a little) but we just keep swimming and believe that all will come right. One day at a time! He is now the
size of an average 3 year old at 4yr 6m but I can live with that…we just keep praying for progress.
Tayden has been rather ill with croup twice already, last Friday 11:30pm seeing us speeding down to the ER with a child who couldn’t breathe. It was very
scary, it has been a while since we have had to deal with that and I definitely would not like to relive it! He has been off school the last week as the doctor
didn’t feel he was well enough or strong enough to attend but I am pleased to report he is looking much better. I am hoping that illness so early on in the year isn’t a forewarning of what is to come in winter! As you know, Tayden has always had issues with his chest and has been hospitalized on many occasions for pneumonia, bronchitis and croup.
Our major news is that we have managed to get him into a“normal” preschool. I was told by people that I should not even consider it and that I should enroll him into the special needs school here in PE, that he will never fit in, that he is not good enough, not ready, blah blah but one thing that lots of people don’t know, is that you never tell a mother “never!” and you never tell her to limit her child’s choices when she KNOWS he is capable of it! Yes, some preschools turned us down or were simply horrified by the feeding peg but I am realising that this is now THEIR loss that Tayden won’t be there! This mom just ignored all the negative people and pushed and prayed and met with the principal at a very special school and told her that he needs just SOMEONE to give him a break! I laid out all the issues, explained how we are dealing with them on a daily basis but neurologically there is nothing wrong with him and he needs someone other than his family to BELIEVE IN HIM and allow in into a normal school. And she told me that she would, that she would give him that break! I was so relieved and
grateful I nearly burst into tears in her office! We are also putting measures into place (eg. having him visit the school, play with on the toys, see his
classroom) beforehand in order to get him relaxed within St Marks’ environment and we will also meet with the teacher beforehand and go through everything she needs to know. It should not take long, it is very simply – if the feeding tube
comes out, call me, put a piece of gauze over and keep him calm until we get there. Nothing else they CAN do! We are so chuffed with this, as this school
only has 18 kids in a class (which will suit Tayden’s sensory issues very well!) and it is close to my mom for her to collect him in the afternoons. Once again,
God provides!
Our other major news is rather negative I am afraid and not something that l like to think about, as it has negative implications forTayden. We have had to stop all therapies with immediate effect, due to no funds being available. We have worked as well as we could with the little money that was in the trust when we got home from Austrian and then used our savings to pay for the last couple of months worth of therapies but that is now also depleted. Our medical aid is depleted and after his recent illnesses we also have outstanding amounts for doctors’ consultations and looking at him today and hearing another cough develop, I am pretty sure there will be more to come. I have thought long and hard and have decided that this is a case of God helps those who help themselves and I have taken the initiative, along with some friends, in looking at some fund raising options for Tayden. He desperately needs his therapies to be able to keep progressing as he has been, and therefore be up to par with the other kids when he hits preschool next year. He is coming along in leaps and bounds and although he IS doing well, there is still major work to be done, especially with regards to OT and his sensory issues which are extremely severe. His speech is doing well too but there is also plenty of work to be done there. He is not onto 5-6 word sentences and it is such a joy to hear him chattering away to me!
So, look out for the official invite, but for those of you who would like to support us, the first event is on the afternoon of 1st June, and is a Tea for Tayden. This is for the ladies to enjoy and costs R50 a ticket. If you are interested in attending or would like to contribute a prize or something towards his therapies, please drop me a line on [email protected], I would be most
appreciative of your support.
Lastly, have a look at some of the numbers that make up Tayden’s life. I am hoping that these will bring home what a little fighter I have here!
4 Tayden’s age;
51 The number of times he has been hospitalized;
3 The number of times he has been admitted to ICU;
37 The number of months he has had a feeding tube;
9 Tayden was 9 months when he underwent his surgery to put in his feeding tube;
6 Adding all his hospital stays together, the amount of time in months he has spent there;
8 The number of months he was without a mickey before we had to reinsert it after teaching him to eat and drink;
15 The number of operations he has undergone in his young life;
R2500 The price of a replacement mickey (feeding
tube) which can rupture at anytime;
7 The number of mickeys he has gone through;
3 The number of birthdays that have gone by that we have had to miss giving him a party because he would not be able to handle it due to sensory
overload;
180 000 The amount raised to get him to Austria and allow him to eat and drink again. This was also used to fund his therapies and medical expenses until now, when it is depleted;
0 The number of times his mom and dad have given up on him living a normal peg-free life
Thanks for reading xxxxx