The assessment was good! GREAT! WONDERFUL! In every aspect that we prayed.
I am sure the neurologist was God guided for one. Then the progress report was good!
Okie lemme just recount what happened.
We entered the doctor's room. Dr J was sitting there as usual but this time with 2 young medical students? sitting behind her.
Dr J: Hello Jere!
Me (carrying Jere): Jere, say hello.
Well, usually he does so spontaneously, but this time he was a little wary. He scanned the room and I bet if he was on his feet, he would really take to his heels! After so many medical appointments, Jere seemed to have developed a radar to detect doctors far or near, western or chinese.
Nat who came along, settled himself comfortably opposite the doctor at the table and went "I know you! You are the doctor on the ship!" Nat recognised Dr J for being on the cruise with us when we went on a trip with Club Rainbow last December.
Dr J: Sure I am!
Jere kinda senses it's not that "dangerous" after all since korkor is so comfy.
Me (quickly taking the opportunity): Come on, be nice Jere. Say HELLO.
Jere waved a little wave and manage a little "HAR-LO"
Quickly, I tried to switch his attention.
Pointing to the seat near the doctor, I asked, "Jere, would you like to take a seat?"
Jere nodded and went "SIT"
Me: Jere, can you ask nicely? say MUMMY.... PLEASE..... MAY.... I...... SIT?
Jere followed after me, nodding: MUMMY.... PLEASE..... MAY..... I...... SIT?
Boy! Was the doctor impressed!
Dr J: Wow! Jere, it's only 3 months ago that I last saw you and you are speaking so much now!
By now Kor kor Nat was playing with his box of dinosaurs and car that he brought along. Quickly I asked Korkor to distract Jere before he gets uncomfortable. Nat passed over a dinosaur and Jere went "SAUR.... SAUR".
Dr J: Oh! He can say quite a number of words already huh?
Me (proudly): Yeah!
Dr J (looking at Jere's eczema):His skin looks like it's getting worst yeah...
Me: It's actually getting better! It used to be weepy. At least, now it's dry. I've been using homeopathic medicine on him.
Dr J: You know that you have to look out for latex allergy right?
Me: Yeah
Actually, I think Jere is more allergy to the dirt and dust in the environment coz I noticed his skin got worst when he started crawling and sitting on the floor and eating whatever we were eating. We try to keep our home as clean as possible but how far can we get when we've got a dog at home and we can't possibly just dump her somewhere coz after all, the doggie, Bonnie is our ROM child. Well,we got her when we ROM coz we were not supposed to have kids yet then... haha Registering Of Marriage here in Singapore is not considered officially married till you marry customarily. But I must say the children love her! yes Bonnie. I think the doggie is also a kinda therapy for the kids. I have always believed that kids raised with animals tend to be more compassionate and we could also teach them responsible stewardship. Jere loved Bonnie since he first saw her. He was always trying to reach out for her.
this picture was taken 23rd Dec 2006. Okie let's not drift off the topic.
Now back to the neurology news....
Dr J (whipping out her measuring tape): Jere, can I measure your head?
Jere (sharply): NO! (quickly turning to me) GO! GO! GO! (pointing out of the room)
He always seemed a little sensitive when it came to looking at his lesion or measuring his head.
Dr J, learning from her last appointment with us when I took the measuring tape from her and measured my own head and Nat's before attempting to measure Jere's then tried to measure her own head and then Nat's and tried Jere really quickly and succeeded.
Dr J: Good! It's the same as 3 months ago!
Me: Praise the Lord!
This means the hydrocephalus has been arrested! AMEN!
Me: Jere, Praise the Lord!
Jere lifted his hands in praise.
Dr J: Wow! Jere, say AMEN!
WOW! AIN"T DR J GOD GUIDED???? OF COZ SHE IS! AMEN! PRAISE THE LORD! ALLELUIA!
Dr J finally acknowledges she is dealing with some strong believers here that she had no qualms about saying AMEN in the consulting room.
Jere: AMEN!
Dr J (examining his legs): Can he stand?
I stood Jere up against the chair and told Jere: STAND JERE! STAND!
Then I went on to explain how Jere is standing with his feet turned in and what we've been doing by turning it proper whenever we see him doing that.
Dr J: That's great! The last time I saw him, he was just crawling and now he's standing.
Actually, Jere was standing this way since last August 2007. He first attempted to stand on the 23rd August, 2007 to be exact. But I decided to leave it and not bother to clarify with the doctor as she's got too many patients... how was she to keep track. Thank goodness I did so myself. But I'm glad she had good things to say.
Then I took out Jere's sandals and told the doctor about how the right foot is turned in and how the leg itself seems to look like it was cramping up at the calf to make the foot turn in. She then explained it's due to the nerves. Then, I told her about how the left foot would tense up all the time and thus worsen the feet's eczema. She then explained it was some hyperdorsiflexion. Okie...another medical term for me to read up!
Dr J then looked at Jere and said: Hhmmmm.... looks like the brace and splints are not gonna help this guy if he is not gonna move and walk when he has them on.
I had told Dr J that whenever we put Dennis Brown boots for the little fella, he does not move as much.
Wow! for once the doctor are not gonna force that brace and splints down my throat!
I've been subscribing to Glenn Doman's school of thought of "Function determines structure" but the doctors all have been telling me "BRACE! SPLINTS! AFO! (whatever that means)" In other words, they were strong believers of the contrary of Glenn's belief "Structure determines function".
Think about it... if you brace, splint and what not, not giving the muscle to develop at all, and when you ever remove that brace or splint, the person is just gonna fall flat on his face! No? They would depend on the splint and brace to stand and thus never ever develop any muscle tone. So what's the point of all these brace and splints? To be dependent on them all their life?
Then Dr J said: Maybe you could consider Wellington boots
I was wondering in my mind what is that? Sounds like a high class term of the market boots that the fishmongers wear :P
Anyway, all along I've had this idea of getting Jere a good pair of boots and now's the time to ask!
Me: It seems to me that Jere's foot is turned in due to some muscle tension from the ankle up and not the foot itself? Would it be better if I get him a good comfy pair of boots like from Timberland and so he could walk in them?
Dr J: Well, you could try... yes! maybe not those rubber ones as you need to tighten up from the ankle.
Yeah heh! Goodbye to Dennis Brown boots! Finally kinda have a licence from the doctor to throw out the idea of splints and what nots.
Dr J: Looks like we can try to make him walk
Me: Yeah! of coz we can. He can also dance you know.
Picking Jere up, supporting him and standing him on the floor, Jere started to dance almost like a limp puppet but I thought that was a wonderful effort on his part.
Dr J to her medical students: Jere is born with a lesion at an upper level, about L1 L2. He had his surgery early so hopefully the nerves were preserved and he would slowly regain ...
Dr J continued to talk to her students. She talked about how important it was to have devoted and motivated parents.
Indeed! I feel very much that "The fate of a child is very much in the hands of his parents!" and so if I as a parent on earth will never give up on him, what more our heavenly father GOD!
HE WILL NEVER ABANDON US! HE WILL DELIVER US!HE HAS PLANS FOR US.... PLANS TO PROSPER, NOT TO DESTROY! AMEN!!!!
Okie back to the topic...
Me: So Dr, do I need to look out for anything with regard to his development? What do I need to do?
Dr J: Carry on whatever you are doing.
ALRIGHT!!!! OUR LORD REIGNS VICTORIOUS!
Jere then gave Hi 5 to Dr J and her two medical students, gave them a cheeky smile, said byebye and blew them kisses. Ha! I bet Jere made their day!
We walked out HAPPY! Praise the Lord! Thank You Lord!
3 comments:
Hi Mich!! Congrats on Jere's progress and of course to dear Nat whose ever so the big bro praying and looking out for his little one.
I was just reading through your entry at the docs and about the AFO, splints etc. Its been a long time since I did paeds and look after the spina bifidas but from memory, it may be that Jere has some increased muscle tone (aka spasticity) in his calf muscles, leading to an muscle imbalance pulling his foot downwards (plantar-flexion) and inwards (inverted). What happens in the long term if his ankle gets held fixed in this position is that the calf muscles start to shorten and prevent him being able to dorsiflex his foot (opposite to plantar-flexed, so pulling his foot up toward his face). Being able to dorsiflex to at least plantigrade (foot flat heel on ground) position is important for weight bearing and therefore standing and walking, as if you cant get your ankle to at least plantigrade, everytime you try and stand on your foot, the tight calf muscles will tend to pull the foot downwards (plantar-flexion) which will lead you to lose balance. The compensatory mechanism is to become a toe walker on the foot so that one doesnt have to put their heel down. If you think he is getting problems with calf muscle tightness, you can think abt getting assessed through a physio - if my train of thought is correct, then an AFO (ankle -foot orthoses) is used as a rigid splint to stretch out the calf muscle. Of course if Jere refuses to weightbear in a splint, then the structure in place is inhibiting function, but you may consider using it as a sleeping splint at least to maintain calf length so that he can achieve the function of WBing without tipping over, and in the long term form his calf muscle structure. Anyway, its hard to tell what the underlying root of his foot posturing without being able to assess him in person, so I may be totally off the mark!!! Elin
Hey Elin!
Your post is so enlightening! Thanks heaps! Made me see some light in terms of physio, splints and the like.
Okie... here is what I see.
Jere's right foot I think is as you said has some increased muscle tone in his calf muscles, leading to a muscle imbalance, pulling his foot downwards and inwards.
On the other foot, the left one seems to have a hyperdorsiflexion, pulling up almost every few seconds.
whatever you were saying about using the AFO as a sleeping splint sure make sense.
Maybe I should make an appointment for a physio to assess him again and maybe get a private second opinion as well.
Thanks Elin. You're a star! God bless!
i am so happy for you and Jerry. I am still waiting for Jerry's video!
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