It’s been about 2 months since I last posted a blog so I thought it was time I got writing again. At the end of November I took our eldest son, Lincoln, over to Western Australia to visit family. It was a nice break but when I got back… LIFE WAS BUSY and honestly I struggled for a few weeks. There were days where I just wanted to hide in a corner away from everyone so I had some time and space to clear my head and just find order and a moment to breathe. So I pushed through it, made it out the other side and got a much needed break over the Christmas and New Year period.
But that’s enough about me…. let’s talk about Hope. Let’s look back and that last 12 months and see how far she’s come.
Health
In Hope’s first year of life, she had multiple specialists, and each of them saw Hope a few times within the year. As well as the paediatrician, we were seeing a cardiologist, endocrinologist, respiratory doctor, ENT, and ophthalmologist.I think that’s all of them. Over the past 12 – 18 months, this list has decreased. We have been given the all clear from both the endocrinologist and the respiratory doctor and we no longer need to see them, unless something changes. In getting the all clear from the respiratory doctor, we also said goodbye to the CPAP machine. Not only that but we are not needing to see the others as often and Hope’s cardiologist has said if all is good again this year when we see her, we’ll only need to see her once every 2 years. When we look at Hope now and see how she is thriving, it’s hard to imagine that she was once a tiny 1.2kg. So small that we were afraid to hold her in fear that she would break. We always said she was a fighter and we were not wrong!
Hope only had 2 hospital stays in 2022. That’s 2 hospital stays more than we would like but it’s better than 3, and one of those stays was only for 1 night. The good news is that most of the time she gets sick, she pulls through without help from doctors. It doesn’t stop us from worrying though. Every time Hope starts to get a cough or a sniffle, Ben and I both are on high alert, ready to pack a bag and go to the hospital as soon we need to. Down syndrome can make her more susceptible to chest infections so while we need to get her to the hospital before things get too bad, we can’t be going every time Hope gets a slight cough. Our hope is for 0 hospital stays in 2023.
Physical / Therapies
Now let’s talk physical achievements. We have always considered swimming lessons to be very important in our kids lives. Lincoln began swimming lessons at around 6-9 months old. Due to just the logistics of it all, Hope and Alexander started a little later when they were around 12 months old (if I remember correctly). It took a while for Hope to feel comfortable in the water and she has come a long way over the last couple of years. This year, we stopped lessons for a couple of months in the middle of the year. It was just getting difficult to make it work as both Ben and I had to be there to get in the water with the twins. With Ben working and one of the kids often being sick, it just made sense to stop until the kids were 3 and then they could go in by themselves. Of course, with Down syndrome, Hope was not at a level where she could just go in by herself but thankfully we were able to get her into some Swim Ability classes. This is a one on one class designed to help her learn at her own pace. When she reaches a level where she can join in the swimming group classes again, we would definitely love to see her back in those group classes. Sending Hope in without one of us was quite scary at first, not because we didn’t trust the teachesrs, we know she is going to be looked after, it was just the fact that she was going in the water without us and we didn’t know how she would respond, especially after taking a break. There was probably more fear from us though than Hope as each week it only took about 30 sseconds before she’s warmed up and is swimming like a little pro. She is kicking her legs, splashing her arms and over the past few weeks, she’s been happily going under the water, holding her breath and kicking and paddling while under. It’s all a step in the right direction and we are just so proud of her improvements and thankful to her teacher who has been there with us every step of the way.
I think one of the biggest improvements we’ve seen this year is in Hope’s walking. At the beginning of the year we would take Hope walking with her walker, and she would take a few steps then give up. Around the house, she would barely ever even try to stand on her feet. With a lot of hard work, Hope is now walking around the house (and anywhere she visits) like she owns the place. She very rarely crawls and is getting faster on her feet every day. She is yet to go for a longer distance walk around the park, but I’m sure that will start happening soon. She loves to dance and it’s such a joy to see her waving her arms and stomping her feet along to the wiggles or whatever music happens to be playing. The boys will even get up and encourage her by holding her hands and skipping in circles. Next… we work on jumping!
Speech has been a little difficult this year. If we look at where she was 12 months ago, and look at where she is now, it almost feels like there’s been little improvement. Hope still isn’t saying many words and repeats the same sounds all the time. But when we think about speech, we’ve got to realise that there’s more to it than just talking. Hope’s understanding of language has improved significantly, you can give her instructions and she knows exactly what she has been told to do. This doesn’t mean that she is going to do it right away though. Hope has learnt so many new signs this year as well. She knows more than me. Sometime in the middle of the year it felt like Hope was improving with her speaking as well. She was starting to say a few words but she had an accident at home, where she tripped over her feet and bit her tongue, getting quite a severe laceration. After this, her talking went backwards. The last few months have been difficult trying to get her to talk more again and trying to get her to find the sounds she appears to have lost. Things like ‘dad’ that was getting clearer were gone. Good news though… just over the past week, it feels like Hope has turned a corner and she’s finding these sounds again. She’s joining more sounds together and it feels like speaking more is once again within reach.
What else can I say about 2022…
Eating has improved, but it still gets messy. Not only does Hope seem to get only half her food in her mouth, she also likes to throw food on the floor when she doesn’t want it. It’s a behaviour we are working on as obviously, we can’t let her continue doing that.
Hope’s character is really showing, she is getting extremely cheeky and thinks she can get away with anything. She doesn’t like bed time and has to be told to go back to bed about 20 times a night before she gives in and actually goes to sleep. She loooooooves tickle me Elmo and carries it everywhere. We have to take it off her when she goes to bed or we hear Elmo giggling all night.
The love between Hope and her brothers has continued to grow and it’s been such a lovely thing to watch. With Hope being able to do more, they all spend more time together, and they love to have sleep overs. Lincoln can often be seen helping Hope with things she’s struggling with, reading her stories and he loves to get her breakfast in the morning. She loves giving the boys cuddles and kisses and they love it. I know there’s going to be plenty of sibling arguments in the future (we already see them between Alexander and Lincoln) but hopefully we have a little longer before those begin.
Finally… Christmas. There was a huge difference compared to the previous year. Christmas 2021, Hope opened one present and then wasn’t interested in many more. She wanted to play with the paper and then just wanted food. Christmas 2022, you could see more excitement on her face. You could see there was a little more understanding She was much faster at opening presents, and couldn’t wait to continue opening them. The love of wrapping paper hadn’t changed though, it was still more interesting than some of the presents. Unfortunately, Hope was unwell on Christmas Day and actually ended up spending most of the day asleep after we had opened gifts.
And that’s everything. An update on everything Hope. We’re looking forward to a fantastic 2023 with more goals to reach and stories to come.
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