Ollie is having his MRI on the 26th August or 2nd Sept will know for sure on monday.
Got to be there at stupid o'clock in the morning and its going to be hell to keep him nil by mouth for so long.....
I predict a very stressful day!
Just a quickie.
Ollie is having his MRI on the 26th August or 2nd Sept will know for sure on monday. Got to be there at stupid o'clock in the morning and its going to be hell to keep him nil by mouth for so long..... I predict a very stressful day!
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The past month has seen us enjoy an eventful camp and has also delt us some new challanges. Every year we travel acrossed the contry to join in a week long camp with a charity we belong too. This for us and the many other families that join in is the highlight of our year. Comeing together as one big family, showing one another the support that many need. This charity is Special Kids in the UK ( www.specialkidsinthuk.org ). This is a national charity run by parent to support other parent who like us have disabled and special needs children. The week long event is filled with joy , laughter and a few water fights. The highlight of this is a ballon release on the Saturday afternoon after a fun packed family fun day. This event is an emotional one and is dedicated to the many children who have lost the fight over the years and become angels. The week just goes too quickly but yet we were all so glad to see our own beds....
Came home to find a letter sitting on the doorstep. It was for a visit from Portage. For the following day!!! Was actually quite lucky we came hope a day early! It was just a bog standard " how can we help" visit and hopfully in the next few week Ollie should have his worker assigned to him. This week we also had Ollie appointment to see his new development pead. The appointment seemed to go on forever, was very informative but delt us a new set of cards. In the back of my mine I already knew what she was saying but it doesnt make it any better just confirms the worries and is a great kick to the guts knowing you were right (A note to anyone if you have a niggleing feeling or thoughts about your childs development. Share it with your partner or husband. I failed to do this and i feel it made matters much worse when it comes to time like these. It causes unwanted friction and is no good for either of you) Anyway although not a firm diognosis of what we are dealing with until they have dotted the i's and crossed the t's, it gets the little man in the system to recived the support he needs to progress. This week has been quite a strange one for Ollie Monday we visited a playgroup for preschool children with additional needs. Its a very small group and there were only 2 other families that attended though I'm told there can be upto 5 that regually go. Sadly it is only run every 2 weeks but we had fun never the less. Tuesday was just a normal day in the life of Ollie. His boot turned up today....oh they are just sooo cute! Though Ollie wont stand up in them. The physio has said it will take him some time to get used to them but hoping that he will soon be crusing round soon enough. Wednesday Ollie hardly slept at all. He normally sleeps upto 19 hours in 24. He was so actctive! Interacted with his toys really well ,was very 'chatty' and happy. We go to another toddler group on this day and instead of being his normal ' i will sit in a corner and scream at anyone who looks at me' He played really nicly with some cars and even allowed another child to sit next to him! May seem like a very small thing to others but Ollie HATES anyone that get in his personal space so to speak! Ollie was also offered session at a hydrotherapy pool in sept, its held at a local primary school so its evening sessions but i think we can work around that. That evening it proved Ollie does infact need all the sleep he can get as he became so over tiered that he just screamed and screamed and finally got to sleep around 11pm. Today was ment to be another toddler group but i think this would have just been too much for Ollie as he has been so tiered that he slep the best part of the day! He is now ........back to his old self trashing the room and genrally making himself known! Although he is hardly eating again. Ollie had his second physio session today after a 5 min melt down he decided he would play...of course i had to bribe him with TV and food! Any way the physio is happy with how he is progressing and we are to carry on with what we are doing. I had a good talk to her about his posture and she is sure that there is slight improvment though I'm not actually seeing this myself. Time will tell i suppose. Ollie needs to wear supportive boots now, even though he isnt walking his ankles are very flexi bendy(physios words) but due to one reason or an other we have to buy these ourself as apparently the PCT no longer supplies piedro boots! The physio also asked if i wanted Ollie refering to Portage (play therapy) but i declined this at the moment though im thinking i may give her a call tomorrow and get her to arrange this as thinking about it, he could benifit from it. We have also been invited to a special playgroup on monday. This is a group purly for preschool children with special needs. Our youngest daughter used to attend many years ago when it was first set up but apparently there have been many changes to the way it is run now so I'm quite looking forward to that. And now for the best bit of news EVER! Ollie took a step!!!! Don't think i need to say any more than that but YAY!!! :D Other news. I contacted the hospital to chase up the MRI and we should be recieving and appointment ......wait for it! ....... Sometime in July! The main thing though is they have noted down our holiday date so fingers crossed they dont clash. Today helping daddy tidy his shed up.
We have been doing physio with Ollie now for nearly 3 weeks and things arent going to bad. He will tolirate a few mins sat on his stool and has taken to having a boogie while he is there! I'm far from exspecting mirical and know it will take alot of time but Ollie back looks like its getting worse. He seems so scrunched over now its a wonder the boy is able to breath! There must be somthing out there that is able to help him as we cant perminantly pin him to the stool to keep him straught In other news though Ollie has learnt a new trick He has started trying to stand/launch himself although today he was grumpy when he did it, yesterday he was so chuffed with himself and was laughing so much with delight.
The have always said Ollies legs are strong and with Ollies determination he will get there The physio is coming on tuesday so i think i may have a chat to her about how we can help him more. Still no news on the MRI Today i set too and made a little Ollie sized stool for Ollie to do his physio on, as sitting him on my knee was just making things worse he would just constantly search for support and cuddles. It fantastic if i do say so my self. Results are amazing! Ollie can sit for a few seconds with his back really lovely and straight. But tonight when i sat him on it i noticed him correcting himself. I'm not sure if it was because he was uncomftable though as he only last about 3 mins on it Yes i know Ollie is stuck in front of the telly but what ever it take for him to do his physio is fine by me.
I have notice he is struggleing to keep his feet flat on the floor when sat like this. One of Ollies other exsersices i am finding a struggle as it mean I'm having to almost pin him down flat on his belly and make him raise his head and sholders off the ground, but I'm sure we will get there. Lots to think about and lots to take in and lots to work on.
Ollie had his physio assesment today and i think it went well. Would have loved to hear the word "Nope, no problems there" but ahh well. Ollies upper body including his neck is quite weak but more so in his trunk and the curve in his back just seems to be adding to the problem but untill he has his MRI we wont know if there is cause or just and Ollie thing, so they can only treat the symtoms as they see them. His legs and feet are normal and with normal strength so this is a good thing i suppose!? Walking seems to be a milestone in the distant at the moment but im sure he will get there in time. The physio also said this could be the reason Ollie sleeps so much because he has to work so so hard to keep himself up right and would also confirm what the SaLT said the other week about his eating and drinking. We have some exsersices we have to do with Ollie but I can see the next 3 wks untill the physio come to see us at home a struggle for him and us and i exspect lot of tears. Yesterday Ollie picked up somthing he shouldn't have. After taking it off him i got a very stern look and a 'Taa!'
I had to laugh as he had his hand held out too and was most upset i wouldn't give it him back. Ollies speech is still non exsistant and mostly consists of baby babble and noise making so yeasterdays new word was a delight and one of which we can add to his list of words which now currently stands at 3! I also bit the bullet and let Ollie explore the garden....ok well it's a small bark chip filled yard, though thinking back it really wasnt wise to let him out in wearing white! He loved every minute of it. Ollie is very tactile sensitive but this seemed like a walk in the park for him, he loved getting his hands durty, playing with the lock on the gate and at one point taking a liking to all the tools in Daddys shed........Its moments like these i wish i had the camera to hand but wasnt risking leaveing him out of sight for a second....Well, you know what boys are like eh?! However todays new development is Ollie is now able to go down steps, although it mostly looks like he is trying to to a 'rolly polly' it gets him where he wants to be. So extra care taken to making sure the stairgate is closed properly.....Dont want any escapies on my hands. And its all good news! For those who dont know ,Ollie has always had issues with chewing and taking liquids and would very often choke . We still has to use newborn teats on his bottles because of this! Well today the therapist was really happy with Ollies progress and although he still a little funny and choky with liquids his chew, as she discribed is beautiful! She believe that all the issues are developmental but mainly cause by his posture and positioning and once we get this sorted things should really start falling in to place. Which brings me onto our second bit of good news. Yesterday i recived a phone call from the physio and we have been offered an appoinment for the 25th may. YAY! Happy mama and papa today! Ollie just before his SaLT visit ...he really really didnt want to wake for!
Monday i decided to take Ollie to the park. Tried many time in the past since it was sunny but he always managed to fall asleep before we got there! Tyipical male i say! Took him on the swing and at first it seemed he liked it but then as he couldnt keep himself upright started to fall about causing the swing to go by its self, so is now suffering swing phobia!....... poor boy bless him Still no news on the CDC and physio referals we are waiting for so phoned today. All has been recived and being prossesed but wait time is 18 weeks from recived date so its looking likely that Ollie wont be seen untill the 11th hour! Just hope the MRI isnt going to be the same but have no way in checking that one
Todays plan is to tackle toddler group. Ollie is some what anti-social. Monday for example i saw a ex-NICU mum at the park with her little one the same age. Ollie prosseded to poke her in the eye and laughed while she cried her little eyes out. I know at 17 months old they dont know right or wrong but it done 'alf make me feel bad that Ollie recived plesure from other peoples pain........ |