Given when I left you I feel like you are in need of a progress update. We were able to avoid heading into the children’s ward at the local hospital by a few hours, luckily Ariella’s physiotherapist had time to catch up with the messages I had left just before Ariella’s Hydrotherapy session on Wednesday. I got a call in the morning by luck her therapist was going to be in the Hydrotherapy session and would be able to check out her left leg by pool side. Excellent, I knew our doctor would be calling me back in the afternoon and if she hadn’t been seen then it would of meant clogging up the hospital system.
Ariella has been very temperamental lately, she switches from happy to fearful in most circumstances which can be quite difficult to manage. Usually this makes her arch her back and as of late she has taken to biting. We took her swimming on the weekend and immediately entering the changing room she became distressed and unconsolable, it’s quite difficult now she is bigger to get her dressed when she is in this mindset as she cannot stand unsupported and the pull down changing mats are too small for her or don’t support her weight.
So I was quite prepared for the same kind of result on Wednesday and as expected she screamed the place down. Luckily the Hydrotherapy pool is situated in a special unit and they have a very big changing bed, this makes things a lot easier for us. I was hoping that her physiotherapist would be able to check her out on the changing bed too but Ariella wouldn’t let anyone touch her without kicking and screaming so instead she opted to check her hips in the pool.
This worked nicely, in the pool most of the time Ariella was happy enough unless I tried to lie her flat on the water – she used to be quite happy to do this but for some reason she wasn’t this week. The session has a high ratio of therapists to children, we are normally just a class of three but today only the two of us had turned up so we had 1.5 therapists each. The swim exercises are much like Waterbabies if you’ve ever watched those, but slower and with some additional aids put in place in case the children are unable to support themselves in the water as expected.
After the Hydrotherapy session ended I walked Ariella up and down the side of the pool so that her leg turn could be inspected. She is still holding on leg out towards the side rather than straight, but her muscles seem to be okay. The therapist said that from a physiological point of view she is happy and she couldn’t explain why the sudden change had occurred, but agreed to see us next week in clinic for a physiotherapy session. Good news! Ariella screamed getting dressed and while I was getting dressed and then we dashed back home in time for our Portage assessment.
Portage (Early education support service):
This service is available to you if you have children aged up to three and a half years with significant developmental or other needs. The portage teacher or support worker will work through activities with you, supporting you to help your child’s learning and development.
The assessment establishes whether your child qualifies by asking lots of questions about them and how they would typically react to certain situations. One of the nice things about this service is it’s home based, which is one less appointment to plan travelling to. The bad thing about it is that if you are accepted then the waiting list is long, but that seems to be the case for quite a few services at the moment. The assessment went well and although we don’t have a formal letter yet the lovely lady indicated that from my answers Ariella should qualify. One thing this did establish is where the line between Portage and Occupational Therapy (OT) sits, they are two different services and I’m told that OT in our area has such a long wait list that we would be best to look privately, I think we will consider this.
Once the Portage assessment was over (it took a few hours) then I called the doctor back, I had missed their first call as I wasn’t expecting them to call me back until 4pm. The doctor was happy that Ariella had been seen and is hopeful that physio next week can work to progress with Ariella’s leg. If progress isn’t made then it can be considered further, I asked whether it would be prudent to contact her Neurosurgeon team to update them too and she agreed (which reminds me I need to do that!)
After getting off the phone I found I had two emails in my inbox, one from the Ophthalmologist at Great Ormond Street (GOSH) and one from the records department at GOSH. The Ophthalmologist was just letting me know that they were able to bring Ariella’s appointment forward to early February instead of on the same day as her Neurosurgery appointment. This is good because initially she was assigned an appointment hours before Neurosurgery which while would be great from a travel perspective wasn’t that logical as we were to discuss the results of the Ophthalmologist during NS. As these things tend to be I emailed to ask whether the report would be available in such a short time, I thought the answer would be no and as suspected it was.
The other email from the records department was confirming that they had received my form requesting the MRI results and Radiographer report but would now need payment. Lucky for me I had already sent it separately along with a bunch of copies of our identity documents and I knew the letter would hit their desk on Wednesday or at the latest today. I replied immediately to let them know this and I got a pretty swift reply saying they would apply for the results immediately. Great news again!
I had a few lovely clothes orders arrive on Wednesday too, finishing off Ariella’s holiday wardrobe which I’ll post about imminently. I’ve been quite sad that I haven’t been able to exercise as I’ve been so unwell, but my Lunchbots order also arrived so I think that has inspired me to get back into the healthy kick mentality and I’m more enthusiastic than ever about how these little boxes will change our lunch eating habits. I ordered one for all of us along with their sauce pots so we can eat bento style, once we’ve started doing it for a little while I’ll update you with a post.
That was Wednesday, I was feeling pretty rough during the course of this but needs must. We did manage a park visit purely because I felt like Ariella needed to go outside and see some fresh air. That evening we unintentionally had to order takeaway due to some very poor quality sweet potatoes (thanks for that Tesco) but I feel perhaps it was for the best. The best thing was by the end of the evening we had resolved quite a few concerns, Ariella’s leg had been checked, the MRI results were being actioned on (they quote forty days for this so knowing it was being dealt with now was very good), the portage lady had been very supportive and I was finally starting to feel better.
Today Ariella woke with a fever, she hadn’t been eating much over the last few days so perhaps this is why. She started coughing in the night and vomited her food up yesterday evening. I knew when she let us lie in until 7am that today was going to be a slow day, perfect! We had nothing in the diary and I was very thankful for it. We watched Harry Potter films and Ariella spent the day playing on her iPad, watching TV and playing with a few toys. We’ve been on a rotation of Calpol and Nurofen to keep her fever low, whenever it spikes she vomits.
Two very good things happened today, I heard from the GOSH records department to say that everything had been received and that they were posting a CD and the report to us recorded delivery as well as a password due to the CD being encrypted. This was amazing news, soon, very soon after waiting so many months we will have a huge amount of clarity over what was seen on the original ultrasound of her brain. For me having seen the ultrasounds the very best outcome I allow myself to consider is that its just the Corpus Calloum and is just slightly thiner than expected. The worst outcome could be more abnormalities or something life limiting flagging up. But I feel that we need to know and that I would prefer to know in the comfort of my own home so I can be prepared when we speak to the Neurosurgeon in February.
The other amazing thing that marks the 12th of January 2017 as an eventful day is that it snowed today. This is the very first time Ariella has ever experienced snow, we took her outside and allowed her to see it and feel it. At first she was a little unsure but I think by the end she could see the beauty in it.