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Monday, September 29, 2008

Weekend and Still Waiting....



Although this picture might not tell the whole story it was a fun day.......

Saturday morning we headed to the Zoo. It was a blast! Zach was into the animals, Zoe was into the animals, even Mommy and Daddy were into the animals! It was a long day, but such a wonderful family day - no crying (well, once on the carousel - but it wasn't his fault his SPD kicked in), or tantrums. Just a day full of giggles and smiles!

We are still waiting on hearing from the Dr. She did call this morning to have me call a new ENT so that we can get an appointment with him so that Zach can eventually get the appointment for his ABR to be done.( http://www.hearingcenter.com/services/abr.html ) They got us in rather fast and Zach will be seen Oct. 28th - then we get the ABR scheduled from there.

I hate all the red tape - Zach has an ENT, one we happen to adore but because he isn't at the children's clinic what he says needs to be double checked by an ENT there so that the ABR can be done.

She had not heard back from our GI and told me that if she does not hear from him by Wednesday she will call and see what is going on.

I hate waiting but that is the point we are still at. Waiting, it is such a cruel game!

Friday, September 26, 2008

DP

It finally came - the day we had been waiting for - the day we had our follow up with the DP.

We walked in - Doug, Zach, and I. I'd like to say we were all a bundle of nerves but I think Zach was just Zach (so easy going, didn't know what was happening) The first thing that was said to us is "You will not hear anything bad today, you will not hear anything you already didn't know"

As we sat we were handed a report. An 8 page report that we went over in great detail. Most was information we had given to the Dr 2 weeks ago. The rest was his findings.......

Neurodevelopmental diagnoses:
A. Developmental Language Disorder Expressive -- there is a clear dissociation between the Expressive Language and the Receptive Language, All developmental domains with the exception of EL are in a typical range for age. (His Expressive Language Assessment put him at 14 months)
B. Dyspraxia (http://www.dyspraxiafoundation.org.uk/services/dys_dyspraxia.php) Within the DLD-EL there is a clear dyspraxic picture present, independent of other diagnoses
C. Autistic Spectrum Disorder, ruled out. Zach is not manifesting signs/symptoms of Autism.
D. Hypotonia (a long paragraph with info I'm not even sure I understand)
E. Fragile Child Syndrome - basically we baby him too much and that a child who has issues still needs to be treated like an average child that is the same age. (but who wouldn't he looks and acts like a 1 year old)

While we were there, Zach's size also came into play - the DP is very worried about his size. We know Zach is small, we see it at every Dr we go to when they plot it on his chart, we see it everyday at home or around other children - BUT the way the DP put in on paper tells the whole story..........
Weight <2%; 50% for 12 months
Height 2%; 50% for 15 months

While we were there - he had a geneticist come in and look at Zach - he said "I think it could be Russell Silver Syndrome" http://www.magicfoundation.org/www/docs/112.111/russell_silver_syndrome
This is the same thing I asked our ped about months ago, the same thing she said was the only thing that really fit Zach. Right now we are waiting on hearing back from our geneticist so that he can be tested.

Overall I am happy with how the appointment went - we have 8 pages of good, solid information, diagnoses, and referrals. I received so much more wealth of information then I could have hoped for.

The DP normally sees kids back in 1 year but wants to see Zachary in 6 months. I hope when we see him then I can write about more good things.

Wednesday, September 24, 2008

Update...Good News, Iffy News, Bad News

I'll start with the good...

The main test for MD came back negative!

The iffy news...some of the other tests came back questionable. Zach's Dr called me in to the office to let me know, yet I'm still unsure as to what it all really means. For now she was calling his neurologist and giving him the results - we are to see him in November and she wasn't concerned with Zach getting in sooner. She told me that the Dr will re-order the same test and this one would be used as a baseline, and that he will also run an EMG. As far as it sounds MD for the time is ruled out but still not 100% out of the possibility.

The bad...at OT today Ms. Jerry started his re-evaluation - it didn't go so well. As Zach is beginning to regulate himself with his SPD we are noticing more and more where he is lacking in other areas. She will give me a full report when we finish the testing. For right now some of it is showing Zach at more of a 15 month old level - far behind where we want him to be.

Tomorrow is the day I've been waiting for yet at the same time dreading going to. Tomorrow is the day we follow up with the DP. It is amazing at how fast the time has passed...2 weeks came and went in the blink of an eye.

Let's all hope for some good news tomorrow!

Tuesday, September 23, 2008

Nothing New...Nothing We Already Didn't Know

Today has been a good day for Zachary.

Tuesday's are always our long therapy day.

Zach started his day with OT - he did his listening therapy without a fight. Ms Jerry wanted to do finger painting with him, so we thought we would give it a try. My little boy surprised Ms. Jerry and I as he reached for the paint with not just one finger unsteadily reaching for the bowl BUT his whole hand. Zach dipped his whole, opened hand right in! I know the look on my face was priceless as it is a normally a fight to get his whole hand dirty. This wasn't without consequences - he had to stop frequently and look at his hand, squishing up his nose in disgust - but he got threw it all on his own - no tears!

Onto PT - more surprises there........Zach didn't give Ms. Patty any static! He went in and got right to work. Jumping on the trampoline like an old pro, trying to walk the steps without fighting, kicking and throwing the balls.

Then of course there was ST.... Zachary did a good job. He showed Ms. Kristin how he isn't swallowing, so they had a tea party - I think Zach thought it was funny. He is attempting to say two word phrases - not that the words are coming out right but he is trying, today he was trying so very hard to say "bye cow" which sounded more like "bi do" - this is such a long shot from where he was!

Ms. Kristin also went over the preliminary score of the Praxis test that she gave Zach last week. Nothing new........just a solid confirmation of what we already knew to be true - Zach is apraxic and according to the test it is sever. This is information we knew and we will deal with - a little hard seeing it on paper that way but nothing we can't handle!

Sunday, September 21, 2008

Sunday.....Already?!?!

It never ceases to amaze me at how fast the weekends fly by! This one was no exception....

It wasn't the best of our weekends, but it was a nice weekend.

Since it is the end that means the beginning of a new week is coming, that means......

I will be waiting on pins and needles to hear from the Dr. I'm hoping for good news --- a test that says "NO MD"

Not only are we waiting for that test to come back but we will also be hearing from Zach's SLP how his test went that he took last week.

It also means our 2 week wait is coming to an end, we will be headed to the DP on Thursday for his answers on what is wrong with Zachary.

It also means another crazy week filled with therapy.

Added to the excitement of the week is Zoe's 2 days of dance. We are still not in a grove from having a nice break over the summer.

Also curriculum chat for Zoe's kindergarten class.

So our week looks a little like this...
Monday - waiting for news, curriculum chat
Tuesday - OT, PT, ST, dance, more waiting
Wednesday - OT, ST, more waiting
Thursday - ST, DP appointment, dance, more waiting
Friday - nothing (for now) YIPPEE, hopefully the waiting will be done by this time ;-)

It will be great if this week is filled with GOOD news!

Saturday, September 20, 2008

What A Day!

Today ended up being a washout!

A day that was going to be all outdoors fun ended up being an indoors fun day.

We woke up to rain - what a way to put a damper on what was going to be a celebration.

We've decided to wait until another day to go to the zoo, instead we will play inside, watch movies, and chill out at home.

Washouts aren't all that bad - they make for a nice cozy family day!

Friday, September 19, 2008

Tomorrow

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!

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!!!!

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!

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 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!

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!