Tomorrow is another day - the weekend is almost here!
Tomorrow will be a fun day for all of us (knock on wood).
Tomorrow is the day we will celebrate Zach's birthday with some friends at the zoo.
I've been showing Zach pictures of animals on the computer. So far I think he will like the Apes the best as he just about jumped out of my lap with a HUGE grin, loud giggle, and a monkey sound. I think the snakes will be what he likes the least, when I showed him on the computer he screamed "EWE!!" as he looked away.
AHHHH tomorrow is almost here!
Friday, September 19, 2008
Thursday, September 18, 2008
Happy 2nd Birthday Zachary.... Sorry I'm A Day Late
I'm a day late as yesterday was a very busy day for us.
Yesterday was Zachary's 2nd birthday and what a day it was.....
We woke up and went to get his birthday pictures done at 9am, shopping at Target, back to pick up the portraits, to the Dr for his 2 year check up, to McDonald's for a quick birthday lunch, then to therapy (OT and ST), as soon as therapy was done we rushed to pick up Zoe. AHHH I'm tired thinking of how the day went! Zach was not in a mood for a nap as he knew it was his day. Normally where he would sleep at least 4 hours I only got him to sleep for 45 minutes. Doug brought him a yummy Chinese dinner home, and I made a marble bunt cake for desert. Presents were opened - I have no clue who was more excited Zach or Zoe. We all played until it was time for bed.
Zachary had a great day!!!!
Mommy, however, not so much....
More or less the day was GREAT until we went to the Dr and it was just downhill from there. Zach took yet another dip on the charts - by now he should be following a curve he has created for himself but instead of a straight line or going up he went even further below where he was. He gained a pound and a half in 6 months. BUT really that isn't accurate he was up to 22lbs 7.8oz last he saw the GI and has lost over a pound since then. He has grown an inch and a half and now stands 31 1/2 inches tall. Zachary is still categorized as FTT http://www.magicfoundation.org/www/docs/176
To top all off the Dr noticed his hypotonia is getting much worse. Zach is still unable to go from laying on his back to sitting up. He used to be able to hold his head level with his body as you helped him get into the sitting position - yesterday while the Dr was pulling him up he could not do this. I have been noticing this at home as I help him up from the changing table but I haven't known what to think about it - maybe it was a bit of denial knowing it wasn't right. To see it when she was helping him brought a whole new light to the situation - my little boy looked like a rag doll being lifted from that exam table - it was completely heartbreaking!
Here is a link as to what I'm trying to describe:
She also took note of his decrease in mouth movements, decrease in his ability to swallow, and his walking getting worse, his foot is now turning almost all of the way in as he tries to walk (this doesn't happen all of the time and some days are better then others), and the increase in clumsiness, among many other things. Because of all of this she has decided that it would be best to test him for MD (muscular dystrophy) she is not the first Dr to bring MD into the possibilities of what may be wrong with Zachary and I think that is what makes it even more worrisome. http://en.wikipedia.org/wiki/Muscular_dystrophy
Just another one of Life Struggles for Zachary --- another Life Struggle that he will overcome!!!!
Thursday, September 11, 2008
The Ugly Face Of
GASTROPARESIS -----
Last night 4:30am to be exact - Zach woke up screaming. He started to pacify himself so I let him be. This morning when I went in to get him there was vomit all over his bed. Guess he had woken up, vomited and went back to bed.
It has been months since we've dealt with this. This morning it was undigested potatoes from dinner. Normally it was meats, solid veggies, or beans that would come up - never potatoes. I'm so upset! I'm not so sure what this means, but I'm thinking his meds aren't working.
Gastroparesis is the pits!!!!
Last night 4:30am to be exact - Zach woke up screaming. He started to pacify himself so I let him be. This morning when I went in to get him there was vomit all over his bed. Guess he had woken up, vomited and went back to bed.
It has been months since we've dealt with this. This morning it was undigested potatoes from dinner. Normally it was meats, solid veggies, or beans that would come up - never potatoes. I'm so upset! I'm not so sure what this means, but I'm thinking his meds aren't working.
Gastroparesis is the pits!!!!
Wednesday, September 10, 2008
AND We've Added...
PT to our busy schedule.
Last week Zachary had his evaluation, this week was his first session. Ms. Patty is his PT. She was still taking some time watching to see where he is at.
PT will be a good thing for Zach - that is once he learns to like Ms. Patty. Right now he isn't very fond of her. I'm not too sure it is her per se, or the work she is making him do. The work is VERY hard for him. With Zach, he will always try to do something his therapists want him to try - BUT if he can't do it or it is too hard he will give up. He also likes to redirect the therapists- Ms Kristin ans Ms Jerry know him too well to let him get away with it - I hope Ms. Patty learns quickly with him!
Last week Zachary had his evaluation, this week was his first session. Ms. Patty is his PT. She was still taking some time watching to see where he is at.
PT will be a good thing for Zach - that is once he learns to like Ms. Patty. Right now he isn't very fond of her. I'm not too sure it is her per se, or the work she is making him do. The work is VERY hard for him. With Zach, he will always try to do something his therapists want him to try - BUT if he can't do it or it is too hard he will give up. He also likes to redirect the therapists- Ms Kristin ans Ms Jerry know him too well to let him get away with it - I hope Ms. Patty learns quickly with him!
Thursday, September 4, 2008
Today Is The Day: Part 2
Today is the day we can have a little victory for Zachary!
Today was the day we found out that Zachary does not have autism!
I told the DP that Zach has SPD and he said to me "I'm going to say one word to you........Autism" I looked at him and nodded my head. He replied with "I can tell you right now that Zach does not have autism!" Immediately I cried - happy tears - all this time, wondering if that was what was wrong with Zach and it isn't.
Today is the day that I still can't type what is wrong with Zach. However, we still know something is wrong. We take Zach back to the DP on the 26th - that is the day we will have answers.
Today is the day we heard:
"yes, he has developmental delays"
"yes, he has hyportonia" http://en.wikipedia.org/wiki/Hypotonia
"yes, he can not speak"
"yes, something is wrong"
Today is the day that we heard everything we already knew.
Today is the first time in a long time I've had weight lifted off of my shoulders!
Today is the beginning of yet another wait - a 20 day wait, I can handle the wait!
Today is a rather good day!
Today was the day we found out that Zachary does not have autism!
I told the DP that Zach has SPD and he said to me "I'm going to say one word to you........Autism" I looked at him and nodded my head. He replied with "I can tell you right now that Zach does not have autism!" Immediately I cried - happy tears - all this time, wondering if that was what was wrong with Zach and it isn't.
Today is the day that I still can't type what is wrong with Zach. However, we still know something is wrong. We take Zach back to the DP on the 26th - that is the day we will have answers.
Today is the day we heard:
"yes, he has developmental delays"
"yes, he has hyportonia" http://en.wikipedia.org/wiki/Hypotonia
"yes, he can not speak"
"yes, something is wrong"
Today is the day that we heard everything we already knew.
Today is the first time in a long time I've had weight lifted off of my shoulders!
Today is the beginning of yet another wait - a 20 day wait, I can handle the wait!
Today is a rather good day!
Today Is The Day
We have been waiting for, for 3 months!
Today is the day that we thought we may be waiting 12 months for. Yes, this DP has a 12 month waiting period. He see cases of high need first (Zach was on of those cases). I feel so bad for all those parents with the much longer wait then we have had.
Today is the day I've been patiently waiting for to happen. - We are so very fortunate to have gotten in fast.
Today is the day we take Zach to see the Developmental Pediatrician.
Today is the day my nerves are shot. I've heard such mixed review on this Dr - most of which have been rather negative. Yet, at the same time even the parents I've heard from with bad news still say he is an AMAZING Dr.
Today is the day we may get an answer. To have words to tell people what is really wrong with Zach, has been something Doug and I have been searching for this whole time - Today might be that day.
Today is the day we still might hear nothing. This, is my worst case scenario which has me going crazy - I don't think I can handle one more "We don't know what is going on with Zachary" quote from a Dr.
Today is finally here!
Today is the day that we thought we may be waiting 12 months for. Yes, this DP has a 12 month waiting period. He see cases of high need first (Zach was on of those cases). I feel so bad for all those parents with the much longer wait then we have had.
Today is the day I've been patiently waiting for to happen. - We are so very fortunate to have gotten in fast.
Today is the day we take Zach to see the Developmental Pediatrician.
Today is the day my nerves are shot. I've heard such mixed review on this Dr - most of which have been rather negative. Yet, at the same time even the parents I've heard from with bad news still say he is an AMAZING Dr.
Today is the day we may get an answer. To have words to tell people what is really wrong with Zach, has been something Doug and I have been searching for this whole time - Today might be that day.
Today is the day we still might hear nothing. This, is my worst case scenario which has me going crazy - I don't think I can handle one more "We don't know what is going on with Zachary" quote from a Dr.
Today is finally here!
Wednesday, September 3, 2008
Therapy
Zach had OT, ST, and his PT evaluation yesterday.
OT went well, well - kind-of, Zach was a tad out of sorts. He was having a very bad day with his vestibular system yesterday. Before we even got out the door for therapy he had fallen 4 times in a 5 minute period. He didn't enjoy doing any of his work, I could tell it was so very hard yesterday for him. Poor little man was just so different yesterday.
Then came his PT evaluation - He was able to do what his PT (Ms. Patty) wanted him to do for the most part. BUT Zach didn't take too well to her. Hopefully next week will be better. I'm not sure at this point how much he will be seeing Ms. Patty.
Of course after that comes ST. He did okay. Ms. Kristin and I went back over the scores of the test -- had she had given him the test 20 days later when he turns 2 the scores would have been completely different - not for the better and that was VERY hard to see!
OT went well, well - kind-of, Zach was a tad out of sorts. He was having a very bad day with his vestibular system yesterday. Before we even got out the door for therapy he had fallen 4 times in a 5 minute period. He didn't enjoy doing any of his work, I could tell it was so very hard yesterday for him. Poor little man was just so different yesterday.
Then came his PT evaluation - He was able to do what his PT (Ms. Patty) wanted him to do for the most part. BUT Zach didn't take too well to her. Hopefully next week will be better. I'm not sure at this point how much he will be seeing Ms. Patty.
Of course after that comes ST. He did okay. Ms. Kristin and I went back over the scores of the test -- had she had given him the test 20 days later when he turns 2 the scores would have been completely different - not for the better and that was VERY hard to see!
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