Abe's Adventure @abes-adventure - Tumblr Blog

Tendon Lengthening

Dr Park emailed on Wednesday. He has reviewed Abe’s walking and standing, and the measurements we sent, and he recommends tendon lengthening, possibly heel cords and hamstrings. He suggests the surgery will enable Abe to walk with flat feet and independently. We now need to contact Dr Dobbs, an orthopaedic surgeon in St Louis to discuss the surgery further. I need to do some research, but unfortunately I think it will be unlikely that we will have this done in the UK, as the technique used by Dr Dobbs is quite unique.

Abe's emotions have been all over the place today (as have mine!). It all started this morning when we had to put his de-rotational straps on before school. It's a bit of a palaver and he also didn't want to wear them as his friends would see them... Thus ensued questions about why does he have to be different, why does he have cerebral palsy, then lots of tears. I managed to get them on with the promise of some marbles for his jar and a Lego Mixel if he wore them. He agreed, but insisted on wearing trousers instead of his usual shorts (to hide the straps). I'm posting a photo of Abe in said straps, to let you see why his not very keen! They really help rotate his legs outwards to help him walk with his feet straighter, so despite the upset it is worth it. I hope! Abe managed to keep the straps on at school until lunchtime, which is longer than we agreed. Abe's teacher is fantastic, after a heads up this morning on how he was feeling she praised and encouraged him all day. He got upset again when we got home from school. He asked me why he can't be like Thea, like his friends, why he can't just do all the things he wants. It's heartbreaking, I would take his place in a flash. We knew this day would come and we always hoped that it might fuel his desire to work harder to get stronger, to try harder to do things for himself, it's very hard though not to get upset too. He has so much to deal with and is so aware of it now.

Hopefully we will now start to receive better orthotics for Abe from the NHS as a result of this campaign. Previously we have given up on the NHS as their offerings were basic, uncomfortable and unwearable compared to those we could purchase privately.

Spiderman wears leggings!

Abe received his Dynamic Movement Orthosis leggings (aka his superhero trousers!) about 2 weeks ago now. We didn't get off to a good start, and to be honest I felt very sympathetic to his reluctance. They are similar material to a wetsuit, they are extremely tight and wearing them under his trousers cannot be very comfortable. Abe's first day at school wearing them started off very badly, he refused to enter the classroom for about 20 minutes and was sobbing his little heart out, as was I! However, I had to administer some tough love, or we would have this battle every day. Eventually he went in and kept them on until first break. Its been a rollercoaster since, with days when he is very awkward when I'm trying to put them on (adding 15 minutes to the morning routine) and days when he doesn't seem to mind. He's now wearing them all day and it was totally worth the grief! They are making a massive difference to his gait, providing stability for his pelvis, hips and muscle function and most importantly assisting external hip rotation. Despite the battles, he really is a complete trouper, he puts up with so much! https://www.dmorthotics.com/medical/products/dmo-leggings

Here is Abe promoting children's physio at Hobbs in Winchester. He has been having private physio with them since October 2012. Look how much he's changed!

Once a week Abe has a 121 swimming lesson with the amazing Sarah. She's been working with Abe on and off for quite a while now, so he really trusts her, yet he has been too scared to let go of her in the pool as he really lacks confidence. Tonight however, he made me so incredibly proud... He swam a whole width of the small pool, completely on his own! And then he did it again and again!!! He would have kept going if it wasn't the end of his lesson. It's so exciting!

Please sign this petition. The surgery Abe had in the US is still not routinely funded in the UK and it has changed his future without doubt. Other children deserve this chance too..

Happy 5th Birthday Abe

Abe celebrated his 5th birthday on Saturday. He had a wonderful day, surrounded by friends and family. He was completely spoiled with many wonderful gifts. For me Abe's birthday is always a time of great emotion and reflection. It brings back memories of the days leading up to his birth and his time in NICU. To look at the photographs of the tiny little baby he was, to the grown up boy he is now fills me with pride. He's such a determined character, overcoming obstacles every day.

3rd week of school!

Abe starts his 3rd week of school today and he's exhausted but enjoying it. We are giving him some time to settle in and for the school to get know him before we attend a meeting on the 22nd to review his needs, equipment and to agree a Physio plan. An Occupational Therapist is visiting us at home this week to see how we assist him in every day activities, ensuring he maintains his independence and then she'll go to school to make sure everything he needs is covered there. So, unlike most little ones starting school, our focus is a little different!

First day of school!

These photo's were taken of Abe taking part in the Siblings Race at Thea's Sports Day back in July. He refused to use his sticks, despite the fact that he would have been quicker AND he did the whole race without falling over!!!! He is determined!

Time machines

Only a few more days to go until Abe starts school. I can't quite believe it, he is looking very cute in his uniform. Watch out for photographs on Tuesday. He's had a nice relaxing summer, with lots of lazy days, lots of trips to the park, playing in the garden and copious amounts of ice-cream! We had a 4 week break from physiotherapy, not a planned break but it worked out that way due everyone's holidays. To give him an extra push before school, we did 3 one hour sessions last week. He is continuing to make progress, but we are in 'steady state' at the moment, no major milestones reached but plodding along and doing well in terms of confidence and pushing himself to walk independently. Abe is still very much turning in his feet when he walks, sometimes just left and sometimes both. We worry constantly about his progress, his gait, his sitting position, his strength and how this will affect his muscles and joints, and what we can do to fix it. Hip issues are a huge concern, and although they were within normal range at his last x-Ray, all the w-sitting, and walking with inward rotation causes us to worry that there will be damage done. I don't think there are many moments in a day when I am not thinking about what we need to do and stressing about everything. Abe has a thing about Time Machines at the moment, and I have to say my biggest wish would be to take us all back to his early arrival and keep that from happening - perhaps then we would be living a very different life, with just an ounce of normality!

School!

Abe had a lovely play date with his soon to be school friends today. He informed me that he's most looking forward to the cake at lunchtime and learning how to be a fireman! Hmmm

Teenager Matthew Walzer has Cerebral Palsy, and just like any of us, he wanted the freedom to take care of himself. He decided to send a letter to Nike asking them for help. Because of his condition, he has trouble with shoelaces. In his letter, Matt explained that he is soon going to college and […]

I love this! Maybe one day they'll make a version that works with splints. Hopefully soon!

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