Big post sorry! My aim is to make more regular posts so to avoid long posts such as this however I have divided it into different sections.
I’ll start with the not so great news and then aim to finish with something positive. I feel it is important to try my best to look for the positive or really celebrate it when something good happens because oftens times the stress or trauma never really goes away in our lives. Thomas is a blessing and we are so lucky he is alive but the journey has been tough. I often have heard or read that other parents comment that when their child with special needs makes one step forward, often there is something that sets them back two steps. It most especially feels that way when your child has received a new diagnosis or trailing equipment, or new medications etc.
The x ray
Thomas had his x ray of his right hip well over a week ago and we hadn’t heard anything so I assumed it was okay because last time he had his x ray we didn’t hear anything either because it was fine. Not the case this time! We received a letter in the mail on Friday and I’ve needed the week to digest it plus I was particularly busy away at conference and other things came up. The letter we received was for a referral, yes another referral, for orthopedics. Thomas’ right hip is mildy laterally subluxed. This basically means it is mildly, partially moving out of place like a partial dislocation but not completely dislocated. This is quite common for children with cerebral palsy. I just didn’t think it would happen this soon at 10 months of age. The pediatrician also noted that Thomas has profound central hypotonia. Yes, all these medical terms are quite the mouthful for anyone so feel free to open another tab so you can google it just like I had to! There are just so many medical terms us special needs parents wished we never knew of but in fact is very much a part of our everyday language. We are now in limbo in that yucky ‘waiting for the referral appointment’ phase and I don’t like it because each day you grow more weary worrying about what will happen at this appointment? What is the process? Will they poke and prod my poor wee man? I’m also thinking that it is good that we can intervene, hopefully, in time to better support the development of his hips. I say it’s good that we can intervene but it’s not good that any of this is happening in the first place but what else can I make out of it right?! So, for now I am unsure what next for Thomas regarding his hips so it is a ‘wait and see’ thing until we see orthopedics.
Melt downs
Besides his hips, Thomas has been back into his BLENNZ playgroup and CE. Thomas seems to be especially unsettled around other children or adults who make unpredictable loud, or moaning noises. This is unfortunate because it is out of anyone’s control regarding other children and I think that the other children have every right to make whatever noises they can to communicate but for some reason Thomas gets quite upset and has a mini or mega meltdown with tears and everything. Thomas has always been a particularly anxious boy anyway but it’s making me think about how I can support him here. Any ideas are welcome from parents experiencing the same issue! I’m thinking maybe ear muffs because of his sensitivity to sounds. Sounds that Thomas enjoys are gentle and soft. He likes gentle singing, music, voices, his shaker, anything in his sensory room, the crinkling of tinsel or the kissing noises because he loves kisses so much!
Erupting teeth
For a while now we have suspected teething with the drooling and rosy cheeks. Well, Thomas didn’t go to his playgroup because he was sneezing with a bit of a runny nose. I felt his gums (not even sure why at the time?) and felt something sharp. My first thought was, what the hell was that? There’s something in his mouth! Nope, it’s his two bottom teeth erupting. The poor wee man is not coping too well. He’s been waking in the night quite upset and generally upset during the day. Today he seems less grizzly. Here’s hoping his teeth come through quickly. I have heard stories about teeth coming out and then going back in again. No thank you!
Feeding
Thomas had his appointment with the dietitian and SLT and they both decided that Thomas needs more time before moving onto a special cup. They would also like him to work with a thick puree with a consistent consistency i.e. smooth all the way through, no surprise lumps. The idea here being that he can adapt to the smooth texture over time before moving onto the lumpier textures. I am thankful that Thomas can feed orally but it has been really hard that the feeding has not been straightforward and Thomas’ slow weight gain thrown in there too. I am constantly worrying about how much he eats, poos, drinks, and if he’ll get sick and lose weight again and how this affects his growth as well. It is a bit of relief that he is now being tracked by the dietitian. He has moved from 6.6kg to 6.76 kg in a week. The dietitian said this is good but we still need to keep an eye on it. This takes me back to the NICU days when we would scrutinise every gram Thomas put on or lost. I remember getting upset that he only put on 7 grams over two days and downloading an app designed for converting the grams into pounds or kilos! I’m happy to say I deleted it sometime after he came home.
Good news!
Some good news! Thomas continues to remain content in his seating system for feeds which, again, is so amazing to be able to have my hands free to feed him. His head is still dropping forward but not as much as it used to. The PVI conference went fantastically! Thomas was cared for by his respite carer one day and Joe did the other day. It went really well. It was an amazing feeling to be able to be myself for the day. I was able to meet so many lovely, inspiring people. I really enjoyed the key note speakers and learned so much. Lots to think about!
The many funny faces that Thomas makes!
Minding Thomas 