Saturday, February 28, 2009
Tuesday, February 24, 2009
PT eval is done...
It was an appt I was REALLY looking forward too, the PT was the same PT we used for Alexander. YAY I love Melody, and would reccomend her to ANYONE.
She has special needs kids herself, so she knows what this is like as a mom, as well as a professional. VERY important in my opinion.
Okay, so the appointment was one of those appointments that after a while things kinda black out.. So much all at once, and its scary.
First off, we DEFINANTLY need to see the genetics dr, because of the long family history of this craino crap, my sister, my dad, and my uncle, we DEFINANTLY have something more going on than anyone knows about yet.
Second, she wants me to bring up the fact that Makayla may need a CT of her spine, the spine is supposed to be very flexable in babies, floppy almost, you should be able to take a baby and bend them almost any way (within reason) that you want, Makayla doesnt have that, in fact, she, when draped over a leg, doesnt bend sideways at all shes very ridgid, I never noticed that.
She cant straiten her leg out all the way, it stays bent, you cant force it strait.
She is pretty "tight" or Spastic, meaning that there is a good possibility that the brain being "squished" has already caused problems, one of the first signs of brain damage is spasticity. Thats the basic definition of Cerebral Palsy (or brain damage).
We have to do stretches with her constantly, more often when she is sleeping, the PT has also notices shes developing scoliosis (or curved spine) because of her spastisity and her preferance to one side.
There is more going on here besides just the craniostenosis, she says thats obvious, the baby has little range of motion with her extremities. We just need to figure out if its just caused by the damage done to her brain or what.
I am in a real whirlwind today, we see the Plastic Surgeon on Monday, I will update more about her then.
It was an appt I was REALLY looking forward too, the PT was the same PT we used for Alexander. YAY I love Melody, and would reccomend her to ANYONE.
She has special needs kids herself, so she knows what this is like as a mom, as well as a professional. VERY important in my opinion.
Okay, so the appointment was one of those appointments that after a while things kinda black out.. So much all at once, and its scary.
First off, we DEFINANTLY need to see the genetics dr, because of the long family history of this craino crap, my sister, my dad, and my uncle, we DEFINANTLY have something more going on than anyone knows about yet.
Second, she wants me to bring up the fact that Makayla may need a CT of her spine, the spine is supposed to be very flexable in babies, floppy almost, you should be able to take a baby and bend them almost any way (within reason) that you want, Makayla doesnt have that, in fact, she, when draped over a leg, doesnt bend sideways at all shes very ridgid, I never noticed that.
She cant straiten her leg out all the way, it stays bent, you cant force it strait.
She is pretty "tight" or Spastic, meaning that there is a good possibility that the brain being "squished" has already caused problems, one of the first signs of brain damage is spasticity. Thats the basic definition of Cerebral Palsy (or brain damage).
We have to do stretches with her constantly, more often when she is sleeping, the PT has also notices shes developing scoliosis (or curved spine) because of her spastisity and her preferance to one side.
There is more going on here besides just the craniostenosis, she says thats obvious, the baby has little range of motion with her extremities. We just need to figure out if its just caused by the damage done to her brain or what.
I am in a real whirlwind today, we see the Plastic Surgeon on Monday, I will update more about her then.
Sunday, February 22, 2009
Alex at about 3 months, other than being amazingly cute.... His forhead if very pronounced.. you can see his metopic ridge (where his bones meet from his forhead down), things I knew little about then...
Him a few weeks later, the same thing, you can really see his metopic ridge... and a couple more of him as a baby...
Things on my mind...
Its been a trying few days, its all kinda catching up to me.
Gillian asked me a million questions last night, she started crying and said she was scared. I, doing my best to maintain composer, told her it would be fine, and she told me she was afraid they would cut her head to deep, or off, or she would die... OMG tear at a mommies heart please?!
We had a long talk about how there are always risks with surgeries and that this was alot like her tonsil surgery (only alot more... but thats okay) and these doctors did this alot so they know what they are doing. She then asked me if she would die if she didnt have the surgery, and fact is yes... she would not be okay without a surgery. She has multiple closers which makes everything going on with her dangerous. They walk a fine line of waiting of surgery but not waiting to long.
So that makes me think about Alex... Okay, he has ridges.. every suture I can feel is ridged.... he looks ALOT like Makayla..... not just looks but head shape, prodominant forehead....
Are his delays caused more by craniostenosis thats been untreated and less by autism? So much going on in my head, I will be bringing him to see the Plastics guy, and will talk to the plastics guy about it while we are there. OMFG If I could just give alex a surgery and bring him back to us.... bring him out of his wonderland... I am crying now at the thought...Fact is, he does have autism, but is it made worse by something undiagnosed???
Gillian asked me a million questions last night, she started crying and said she was scared. I, doing my best to maintain composer, told her it would be fine, and she told me she was afraid they would cut her head to deep, or off, or she would die... OMG tear at a mommies heart please?!
We had a long talk about how there are always risks with surgeries and that this was alot like her tonsil surgery (only alot more... but thats okay) and these doctors did this alot so they know what they are doing. She then asked me if she would die if she didnt have the surgery, and fact is yes... she would not be okay without a surgery. She has multiple closers which makes everything going on with her dangerous. They walk a fine line of waiting of surgery but not waiting to long.
So that makes me think about Alex... Okay, he has ridges.. every suture I can feel is ridged.... he looks ALOT like Makayla..... not just looks but head shape, prodominant forehead....
Are his delays caused more by craniostenosis thats been untreated and less by autism? So much going on in my head, I will be bringing him to see the Plastics guy, and will talk to the plastics guy about it while we are there. OMFG If I could just give alex a surgery and bring him back to us.... bring him out of his wonderland... I am crying now at the thought...Fact is, he does have autism, but is it made worse by something undiagnosed???
Saturday, February 21, 2009
Friday, February 20, 2009
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Wednesday, February 18, 2009
Tuesday, February 17, 2009
Monday, February 16, 2009
Sunday, February 15, 2009
Friday, February 13, 2009
Unilateral Lamboid Stenosis
Yup... The CT results are back, Makayla has Craniostenosis.
I dont know what to think yet, everyone around me says to calm down.. to just do what the doctors say.. blah blah blah...I am pretty bitchy and not fun to be around.. I promis you that...
I meet with a Neurosurgeon next week to discuss treatment options.
I dont know what to think yet, everyone around me says to calm down.. to just do what the doctors say.. blah blah blah...I am pretty bitchy and not fun to be around.. I promis you that...
I meet with a Neurosurgeon next week to discuss treatment options.
Multimedia message
Hehehe she is so cute in time out... Of course i was nearing explosion today... But shes still cute.
This is all while Alexander managed to get ahold of Daddies box of chocolates, eat half of it. *Happy Valentines day dear, here is a half eaten box of chocolates.... arn't you glad we have a dysfunctional family?* Makayla is screaming hungry, I am trying to get everyone changed and to the van.
Why must we get in the van? Oh yeah thats right.. off to the OB/GYN.. ARGH!!! Yeah, dont ask.. but no I'm not pregnant... but yeah, I get to cart them all to the OB with me today... and better yet, I will probably have a transvaginal US. :) JOY!
Wednesday, February 11, 2009
Phew... Okay so today i learned it takes me 38 minutes to get 5 kids (4 in diapers... 3 are 1 and under) into the car...
I then learned that it takes about 7 minutes to figure out what that smell is...
... about 17 mintues to figure out WHO pooped in the CLEAN diaper I just put them in...
... another 8 minutes to get everyone in the house again...
another 12 minutes after I change the prime suspect... and get them all back into the car again....
FINALLY over an HOUR after I started trying to get said 5 children into the car we are on the road...
I then learned that it takes about 7 minutes to figure out what that smell is...
... about 17 mintues to figure out WHO pooped in the CLEAN diaper I just put them in...
... another 8 minutes to get everyone in the house again...
another 12 minutes after I change the prime suspect... and get them all back into the car again....
FINALLY over an HOUR after I started trying to get said 5 children into the car we are on the road...
Monday, February 9, 2009
CRASH
So... Caitilyn was fighting a nap HARD today... I knew she needed one, I am glad she finally listened...LOL
Thursday, February 5, 2009
THREE MONTHS!!!
ONE MONTH OLD
(preemie outfit)
TWO MONTHS
THREE MONTHS(0-3 months outfit)
WOWIE!! Makayla is three months old today! Shes doing well, gaining weight finally, she is starting to hold her head up a little, I wish she was doing it more, but its okay. She is smileing alot!!
Tuesday, February 3, 2009
Portrait Innovations.. AGAIN
I have to give BIG kudos to Jennifer at Portrait Innovations in Nampa (if your around here, try them out!!) Alexander is REALLY hard to get good pictures of. He gets very scared and it often shows in pictures.
I took him in today for his 4 year shots, she did a great job with him!! Helping him feel comfortable, without over doing it for smiles. She was great with him!!
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