Happy does it

Since the last post, Thomas was unsettled for about a week or so. It turns out he has another tooth coming through as well as a growth spurt where he ate like mad all day! He was very fussy, not sleeping well, and didn’t want to play! Oh man it was hard work. Of course, he was settled for his carer Sam. For anyone, who isn’t aware, we get a variety of different hours for different forms of respite. The respite has been an amazing help, enabling us to have extra help or time out. Some days, or weeks can be particularly tough. We get through it, but it really does test your limits and I’m not just talking about the sleep deprivation. Sleep deprivation is the rotten cherry atop my melted, curdled sundae. It is just another thing that comes along for the ride, the nail in my tyre, wearing everything down.

Recently, we were visited by the hospital social worker. We were discharged from them, but Thomas’ therapist was worried that things were a bit much and wants me to have a decent break. Somehow she was not aware I am getting time out but the days she visits, Thomas is usually really unsettled. Perhaps, maybe me being in my nana pants didn’t help but I’m sure Thomas doesn’t mind what clothes I wear! Anyway, the social worker came along and she is going to discharge us again. The good news is she’s going to organise the paperwork for us to apply for a mobility parking permit that requires the Peadiatrician to sign off. It will make life easier for us to be able to get Thomas in and out of the car with the parking spots usually being wider as well as closer to whatever it is we visit. Thomas is now 18 months old, and still needs to be carried like a newborn. He does not walk, crawl, sit or have full head control. He needs lots of support while being handled too. I don’t know if he’ll ever be able to do the above milestones but for now, he cannot. So I’ll leave it at that. We often get asked if we think Thomas might walk one day, but I can’t answer that. I don’t know the answer. Ask me what Thomas likes or dislikes. I can answer that or about his conditions. I’m comfortable explaining what they mean. 

Honestly, I only want Thomas to be happy. That’s the number one thing that matters to me. I want him to feel safe, comfortable and happy. When he is happy, I am full of happy too. When he is not happy, well, you know how it goes! 

  

Moving to a better home

Been a quiet time on the blogosphere for me however I am keeping up with the quick Facebook updates. 

Joe and I had decided that we needed to move into a bigger house with a more accessible bath for Thomas. Bathing Thomas is not easy and I know how much Thomas loves the experience, that I don’t want an awkward bath to discourage from regular bathing. It was awkward because the access to get into the bath had a set in glass panel covering half the bath. It meant that I had to do a majority of the bathing because I am smaller and can manoeuvre myself around the glass panel while supporting Thomas in his specialised seat. I was managing the bathing quite well for awhile there until Thomas started to get longer and heavier. My poor back was not coping and due to Thomas’s growing length, his foot or hand would sometimes get caught on the way in or out. Sometimes he would be fast enough to grab onto the glass panel. Cheeky monkey!

It took a good few months of looking around to finally settle on a place that would suit us. Trying to find a place to rent in Auckland is not easy within itself but to also have specific requirements like ours was even more difficult. Most houses we looked at didn’t have baths or had lots of stairs. Some were on busy roads or clustered with lots of other houses. We were hoping to find somewhere calmer. 

Success at long last in Te Atatu Peninsula! A lovely warm home in a much quieter spot. Not crammed in and yes, an accessible bath. Thomas has the biggest room too for all of his equipment. We were running out of room at the other house so what a luxury to have more space to sit and play with Thomas. We have all settled in very quickly and I am feeling less confined, and more at ease to live in house that feels more like a home.    

You can see the glass paneling above. The kind of chair we use is called the Riften Blue Wave Bath Chair. http://www.rifton.com/products/bathing-and-toileting-systems/blue-wave-bath-chairs

  

Thomas above in the new bath. Below are the last pics of Thomas in his old bedroom. We had him sleep on a mattress for a night or two as the crib was packed up ready for the move. He enjoyed being closer to the wall and spent about an hour or more exploring it with his fingernails. All we could hear on the monitor during the earlier part of the night was ‘scratch, scratch, scratch.’ Cheeky monkey!