Oh my goodness, I had not realised I was so behind with Tom's updates. I am so sorry because just last week, Kesia and Tom were saying how much they love receiving post from Postpals.
It's been a busy few months, for all the children really. Some of you may know that Zack, Tom's older brother has Asperger syndrome and is at residential school. He is doing well there, but hometime is always difficult. I forward any of his Postpals mail and he absolutely loves it. Kesia is still struggling with extreme anxiety and difficulties around food and school. We need to pursue a statement of special educational needs for her to ensure that she can go to a secondary school that will allow her to thrive. That has taken a lot of our energy and we continue to do all we can to support her and give her opportunities to smile and feel happy.
So, our pal Tom!!! Tom's had quite a hard term so far. He suffered a very bad few weeks of croup and an ear infection that stopped him going to his beloved hydrotherapy... a very unhappy little boy! For a good six weeks he and I spent much of the nights awake with the nebulizer to try and avoid hospital. On the whole he did well, though we did have a couple of midnight trips to our local when his breathing got really bad.
His ear infection proved very resilient so we were seen by ENT a couple of weeks ago. That ear is slowly improving now, but we found out that he has glue ear in the other ear and medium hearning loss. Another thing to monitor...
Some really good news in the midst of all this fairly normal illness was his cardiology review. His heart continues to be stable and the doctor is very happy with him. We are therefore back on to growth hormone injections daily that Tom is managing amazingly well. His beads of courage help him enormously, and he has made a deal with me to earn a special bead once a week as well as his daily black bead (the black beads symbolise a needle). We see the endocrinologist at Christmas, and I am hoping that he will have sorted out the funding for the treatment which has as we speak been rescinded by the Trust... sigh
Our biggest concern continues to be food and growth. Tom became very poorly while he was suffering with croup, and vomiting was a bad problem again. Luckily, we are being seen by the feeding clinic at GOSH this coming Friday. As nervous as I am to have our dysfunctional eating under scrutiny, I am hoping that some answers will eventually come out of it. I have to say I'm also hoping that they may be able to help Kesia who has very different problems with eating.
PostPals keeps making us smile.. The letters from around the world are a source of sheer joy, our regular posters warm my heart especially and the surprises from PostPals (the balloons are still floating around) are wonderful. Thank you so so much.
It's been a busy few months, for all the children really. Some of you may know that Zack, Tom's older brother has Asperger syndrome and is at residential school. He is doing well there, but hometime is always difficult. I forward any of his Postpals mail and he absolutely loves it. Kesia is still struggling with extreme anxiety and difficulties around food and school. We need to pursue a statement of special educational needs for her to ensure that she can go to a secondary school that will allow her to thrive. That has taken a lot of our energy and we continue to do all we can to support her and give her opportunities to smile and feel happy.
So, our pal Tom!!! Tom's had quite a hard term so far. He suffered a very bad few weeks of croup and an ear infection that stopped him going to his beloved hydrotherapy... a very unhappy little boy! For a good six weeks he and I spent much of the nights awake with the nebulizer to try and avoid hospital. On the whole he did well, though we did have a couple of midnight trips to our local when his breathing got really bad.
His ear infection proved very resilient so we were seen by ENT a couple of weeks ago. That ear is slowly improving now, but we found out that he has glue ear in the other ear and medium hearning loss. Another thing to monitor...
Some really good news in the midst of all this fairly normal illness was his cardiology review. His heart continues to be stable and the doctor is very happy with him. We are therefore back on to growth hormone injections daily that Tom is managing amazingly well. His beads of courage help him enormously, and he has made a deal with me to earn a special bead once a week as well as his daily black bead (the black beads symbolise a needle). We see the endocrinologist at Christmas, and I am hoping that he will have sorted out the funding for the treatment which has as we speak been rescinded by the Trust... sigh
Our biggest concern continues to be food and growth. Tom became very poorly while he was suffering with croup, and vomiting was a bad problem again. Luckily, we are being seen by the feeding clinic at GOSH this coming Friday. As nervous as I am to have our dysfunctional eating under scrutiny, I am hoping that some answers will eventually come out of it. I have to say I'm also hoping that they may be able to help Kesia who has very different problems with eating.
PostPals keeps making us smile.. The letters from around the world are a source of sheer joy, our regular posters warm my heart especially and the surprises from PostPals (the balloons are still floating around) are wonderful. Thank you so so much.
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