Daily Tilda Routine

15 Aug

I thought I would write today about our usual daily routine with Tilda as it might be something of interest.  Currently she is attending school Monday through Friday so the schoolday routine goes a bit like this:

7:00am: Hit the snooze button

7:15am: Matilda wakes up, morning cuddles then she points towards the door and states quite explicity: “I need to watch Dora”

7:30am – 8:30am: Matilda is ensconsed in her high chair watching Dora whilst we run around preparing for the day. Tilda has difficulty feeding herself so breakfast can take a long time (usually vitabrits plus cream plus milk – we try and sneak cream into as many of Matilda’s meals as possible to stave off the inevitable peg feed).  After breakfast, there is the usual struggle to take the morning medications. 7ml Epilim, 15mg Clobozam, 1mg Artane, 25mg Topomax, 50mg Lamictal. We are hoping to wean some of these over the next few months in particular the Topomax which we don’t feel is having too much of an effect. School lunch gets made, entry written in the communication diary, bag packed for the upcoming school day. Tilda is dressed and ready to go for the school bus which arrives at about 8:30. There is usually a mad flurry around this time as we see the bus come up the hill and haven’t quite got everything together yet! Thankfully, they always wait for us 🙂

8:30am – 3:30pm: Tilda is in her fabulous school. Different activities on different days but on a Wednesday, I get to go swimming with her and the rest of her class in the afternoon. She absolutely adores the water and Glenallen’s indoor heated pool is wonderful. Other activities include Art, Music, OT, Speech, Libary time, using the interactive whiteboard etc. The communications diary is such a wonderful tool. Each day her teacher writes in it, letting us know how the day has gone. They even include photos on some days and it is something we really look forward to reading.

3:30pm: The bus drops Tilda off. She is invariably cheery but weary after a big day at school. We chill out for a while. Depending on her energy levels, it might be roly poly’s on the floor, jumping on the trampoline or playing in her room. She loves the bath at the new house and can happily spend up to an hour in there playing.

5:00ish: We try and give her dinner pretty early and depending on work schedules will either all eat together at the table or if it is just one of us, let her eat whilst watching more of her beloved Dora/Maisy/Charlie and Lola/The Wiggles. Tilda can be a great eater or a not so great eater totally depending on the day. It can be very frustating when she doesn’t eat so we usually go for things that we know she likes – spaghetti bolognaise/mac n cheese/pizza/creamy pasta – high fat is good, good, good! After dinner, once again we have the usual struggle with medications. At night, she takes 7ml epilim, 15mg clobozam and 40mg topomax.

6:30: After a long day at school, she is knackered by this time so it is off to bed with a story. She usually goes to sleep very quickly until about

2:00am ish: Tilda will call out and I will go in to her and sleep the rest of the night in her bed. I started doing this a few months before her diagnosis and it had got to a point where I thought I should probably wean her and myself of this routine. Since the diagnosis, however, I have decided that I actually don’t want to give it up. I love waking up with her in the morning, she is a cuddler and a snuggler and it is a time to be enjoyed. In the past few weeks, it has also been prudent that I have been with her as she has awoken in the night with febrile convulsions. We worked out that she was overheating some nights leading to the fever and subsequent seizure activity. When this happens, we administer Midazolam and give her Nurofen to bring the temperature down. It turns out that Tilda is one of those where Midazolam doesn’t have a sedative effect! We know now that it will stop the seizing but will result in a sleepless night for all as Tilda lies in her bed, chatting away and pointing at the imaginary ducks on the ceiling. She bounces back from each episode seemingly unscathed.

7:00am:Hit the snooze button and it all starts all over again!

General Health Stuff

Seizure activity throughout the day: Matilda is almost constantly seizing. Absences, myoclonics and general ataxia cause her to be very unstable on her feet requiring assistance to walk any length. It is both a blessing and a curse that she remains as active as she does – her fearless and gutsy attitidue means that the only time she is still is when she is watching TV. Otherwise, she completely ignores the fact that she is wobbly and likes to be on the move. Stairs (at my parents and my sisters house in particular) are a huge favourite – meaning we cannot turn our back on her for a second. It is similar to having a very tall 18 month old roaming about!

Speech: Sadly, Matilda is losing her words. It takes her a while to get a sentence out but sometimes she will blow us away with the connections she can still make. Yesterday was Simon’s birthday and we were at my mum and dad’s for a celebratory meal – there was cake and Matilda helped Simon blow out the candles. When I was putting her to bed later that night, she managed to get out “I blow candles” which was very impressive. Some days again are better than others in regards to her speech.

Vision: We know that one of the key symptoms of Batten Disease is the loss of vision but have been given the very happy news at our opthamologist appoinment on the 8th August, that there is no sign of vision damage at the moment and Matilda’s sight appears to be in good health. This is excellent and very welcome good news.

Upcoming appointments are on the 22nd September with our pediatric neurologist and 5th October with the developmental pediatrican. We have been accepted into Very Special Kids and are looking forward to meeting with them to see how their services might help us. We are still thinking about a Wish for Matilda through Make A Wish but haven’t decided on anything as yet.

That’s about it for the moment. Updates as they happen!

Much love

xo

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10 Responses to “Daily Tilda Routine”

  1. Kylie August 15, 2011 at 6:03 am #

    hello what a great idea, makes it so clear for everyone to have everything here in one place – thank you! Team Tilda has many people on board! And lots of others who are gunning from the sidelines…..
    xxxx
    Kylie

  2. Fiona August 15, 2011 at 10:02 am #

    What a fabulous idea honey, and so well illustrated!! Thank you for sharing. I look forward to more updates. You guys are amazing. Much love xoxox

  3. Kylie August 16, 2011 at 1:20 pm #

    One more comment – Tilda is the sweetest thing, everyone I know appreciates her cuddles, her parents are indeed lucky to have her, but I think she’s also damn lucky to have Laura and Simon as her mum and dad.

  4. Jeff & Karen August 16, 2011 at 4:41 pm #

    Hi Laura & Simon,

    This BLOG is a fantastic idea and we look forward to reading it on a regular basis and seeing you all often.

    Much Love,

    Karen & Jeff

  5. Heather Jackson August 17, 2011 at 4:35 am #

    Thank you, thank thank you for the blog, we are contstantly thinking of you guys, and praying praying! Delicious Tilda is just that! And I want to eat her up! All our love and hugs from CO, USA!!! Zaki sends love, and wants her to know he is a big fan of Dora too! ❤ Heather

  6. Elizabeth Chapoton August 17, 2011 at 1:52 pm #

    Thank you, Laura. I will check on y’all every day. She has my heart, that one. Elizabeth.

  7. Karen Nichols August 19, 2011 at 3:48 am #

    Laura,
    Thank you for writing this; it is so good to have a “picture” of your lives right now. We send hugs and love and strength. My Aidan, now 7, also loves Dora and I know he’d love to hang out with Tilda and watch Dora 🙂
    Karen, Ben and Aidan in Montana

  8. Waidehi August 22, 2011 at 10:27 pm #

    Laurel, thank you for the blog – it really helps for those of us far flung Team Tilda folks to stay in the know and be present with you all as you make this journey. Delicious is the perfect word to describe her – she has the most incredible spirit. As Kylie said above, you and Simon are remarkable parents. Thinking of you always. Love, Team Tilda Toronto xoxo

  9. jackie goulden August 24, 2011 at 6:05 pm #

    Hello Simon & Laura – what a great idea to blog all your thoughts and feelings. We feel privileged that you are letting us into your lives on such a personal journey. Matilda is absolutely beautiful and it is heartbreaking to think of all you are going through. You and Simon are remarkable! It is something no parent should ever have to face and yes I think it’s well and truly FUCKED! Thinking of you all the time. Much love Jac & family xx

Trackbacks/Pingbacks

  1. Day by day living | teamtilda - July 30, 2013

    […] does our day by day living look like? Things have changed quite a bit since the last daily routine post I did. Tilda’s needs have changed and of course there is a whole new person to factor in! We […]

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