Wednesday, February 03, 2010

Of seizures...MIC-KEY tube...tactile, proprioception and vestibular...montessori (PART 2)

Okay...okay..so am veeery slow in updating my blog...hehee..sori about that...but these days, its hard for me to commit to my blog...oops, sori blog...anyway, as promised I will be updating about Ridhwan's MIC-KEY tube...and others....

Now, what is this MIC-KEY thingy is...well its just like the BARD PEG button Ridhwan had all this while except its a bit thicker and looks a bit scarry for me to change it...that I will tell later...but the surgeon mentions that its better as it can be changed frequently meaning hygiene wise would be better for the user...but money wise also a lot lah ;) ...hmmm..but for Ridhwan, I'd pay anything right!

A MIC-KEY* Low Profile feeding tube (MIC-KEY*) has been inserted into your stomach through the abdominal wall. There is an inflatable balloon at one end and an external base at the other. This tube allows the intake of food and water that your body requires. Your specialist has measured you to ensure that you have the right size MIC-KEY* feeding tube.

So, basically this is how the button looks like in Ridhwan's stomach. If u notice that sphere like plastic is actually called a balloon where the mother or preferably the surgeon right now may syringe out the water in it and take out the tube to put in a new one...now this part is the one that has been bothering my mind so much but since no need to change yet not too worried but eventually, I might have to do THAT all by myself...sigh....anyway, will take a picture of the MIC-KEY tube deflated ya. But all in all, I think taking care of this button or the feeding tubes is somewhat easier than the BARD button, so okaylah ya! Now all I need to do is teach Ridhwan to eat better and especially drink better too, so one day begone the tube or any tube for that matter in his stomach...amin...amin...

Okay, next to update is tactile, proprioception and vestibular...yup, recently or end of january we finally met our rehab doctor again after...ummm...4 months avoiding to see her..hehee...anyway, it was a nice visit to see her as usual, Dr. Tunku Taayah the rehab dr has always been one of my favourite doctors as she gave me hope...yes she did...when all other doctors gave me such negative hope about Ridhwan's progress, she was the one who smiled and told me..."I know what I say seems overwhelming for you..but do enjoy your child kay, no matter what happens, he is a lovely boy and enjoy him and love him with all that you have..." ...yup, she gave me hope that day when she said that when he was...umm..a few months old I think..as Ridhwan was initially introduced to Early Intervention Program in SJMC...you see at that time, the other doctors were..umm...concerned? concerned in a way telling you aaalllll the worse case scenario that Ridhwan may go through which did de-motivate me in one way or the other...just imagine your child was just 3 months old and they say his brain wasn't growing..then they say god knows if he will even sit and what not...if i had my way that time, I'd give a big whallop to all those awful doctors i met!! but, alhamdulillah Allah gave me patience and preseverance I couldn't care less with what those doctors predicted and gave my all to Ridhwan..eh Mariah Carey's song title!! Heehee...sidetracking....well, Dr.Taayah as happy as she always is with Ridhwan she did mention 3 areas that I have to put extra..extra...extra...aaaaand extra effort on Ridhwan...firstly is tactile...or touch..why can't this doctors use layman language aje kan, it means the same thing anyway, just use words we non-medical people understand lah kan, taak ni nak jugak guna ayat canggih, nasib baik rajin baca...hahahhaa...well, tactile here is needed a lot to Ridhwan's hands and feet as it is Ridhwan has yet to master the grasping of a pencil which funnily is, not that he is not able to hold his blocks...but repetition..yes the magic word, he needs or I need to repeatedly show him how to hold a pencil and how to use it...so eventually he can write!! amin...insya-Allah...so tactile exercise consists of tepung with water(OT Aziah taught me this), next tepung kanji with water, then finger playing with play doh, finger playing with finger painting with non-toxic paints, playing with grains and what not...and these needs to be done a lot..a lot...a lot...hmmm...

Next on the list, proprioception....as much as Ridhwan has already learn how to cruise and stand and the way to use the legs to step or walk...he has yet to learn to do it in a 'normal way' as his leg joints have yet to register itself on how to walk properly and of course there is the issue of gait in his left foot...I mean, ballerina gait or senang tip toe lah...interesting is kan, it seems many children these days, and I mean normal children seems to be walking tip-toeing...scarry kan, well I mean they can place their foot down nicely and yet when they walk they tend to tip-toe..hmm...brain issues? well Ridhwan only has left foot to worry about but still it affects his balance because of that...sooo...lots of massages for the left foot to ensure no tightness will occur..never! never! and for that lots of joints massages too...work baby work! heheee

And lastly, vestibular on my mind...vestibular I say? Vestibular = balancing...see, apa susah sangat cakap balance aje kan...hehee..never mind lah, that is what they learned in medicine studies anyway, so might as well use it when they are working now right ;) ...as it is Ridhwan's left foot is not placing very well, so he needs to learn balance to ensure that he can walk better when eventually his left foot can be placed well...so balance exercises here we go! Bought a balancing board recently and hoping it will help him with his balance and also, we thought we might was as well start again some techniques of glen doman that we learned last time for his balancing, such as pitching and what not..gosh I can't remember the names...

Well, three main issues to overcome...as a mother, this sometimes overwhelms me...one would thought after all these years, its easier to absorb or deal with...but surprisingly it gets harder for me..maybe as I see he is already reaching 5 years old and I really need to be concern with his development even more...but all I can say and do is try my best...give him the best and most of all...pray for the best...amin..Insya-Allah...

So do pray for me everyone that I will be sane most of the time...hahahaa....and most of all have the preservarance to give the best to Ridhwan and be patient in all our endavour...Insya-Allah...amin...

Jiey, about montessori next post yea, sorry lambat sangat yea dear..want to take the pictures for you the items I bought ;) but this is the website anyway...

http://www.bambini-montessori.com


1 comments:

akubukanartis said...

Salam Kak Reeny,
Saya Napisah, pelajar jurusan TESL tahun 4 di UiTM Sh Alam. Saya adalah antara silent readers blog Kak Reeny :) dan mengikuti perkembangan adik Ridhwan. Saya minor dalam bidang kaunseling. Subject Kaunseling Keluarga memerlukan saya dan beberapa orang kawan untuk menemubual keluarga kanak-kanak istimewa. Kami amatlah berbesar hati jika keluarga Kak Reeny sudi untuk berkongsi pengalaman bersama kami. Jika diizinkan, kami ingin menemubual Kak Reeny dan keluarga secepat mungkin. Kerjasama dari pihak Kak Reeny, kami dahului dengan terima kasih.


Wassalam,
Napisah
raihanapisah@yahoo.com