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Wednesday, September 30, 2009

So Sad....Pretty Disappointed

Ms. Kristin and Zach in the beginning when all Zach could say was "da" and yes that was literally the only sound he had at 18 months old

Yesterday we had a bit of sad news Zach SLP will not be his SLP anymore, yesterday was her last day with Zachary....

This came out of the blue and left me so sad and disappointed. The reason is simple she will no longer be working because she does not have child care for her own children - I totally get it BUT I'm still sad and still disappointed. She will be missed more then she knows!

I admit it I cried like a baby as she was telling me, she cried to. We have been with her for close to 2 years now and what she has done for our family is priceless. She is family to us and I can't thank her enough for all she has done!!!! I truly feel without her in our lives Zach would be a much different child.

We started Zach's last session with her doing some testing for an evaluation. As we were working in OT Ms. Kristin came back and had already scored his tests. They were okay - not great but okay. We had an issue with his receptive/comprehension score (this has always been very high) it was where she expected it to be - but she is hoping it was because someone else was in the room he did not know. I will know more this week when I pick up her written report.

We were able to meet his new SLP that is replacing her - she seemed nice, but Zach would not talk to her (at all). It will be a struggle for him and a process getting him used to another new person in his life. Something I'm not really looking forward to.

Kristin if you ever read this you.......Please know you are a WONDERFUL person who does GREAT things for many families. I will never have the perfect words to tell you how much you are loved, how much you will be missed, and how thankful I am for all you have done!

Thank you for all your hard work with Zachary and knowing him inside and out (at times I believe you know him just as well as I do - sometimes better).

Without you he wouldn't have gotten as far as he has - you've never given up on him! From day one knowing what was wrong and that he needed more help. Because of you he received so much more ST, he got into OT, he got into PT -- because of you he has progressed so very much and we have learned so much about him. Because of you, I believe you help my son be able to find his voice - sometimes more then I'd like to hear now ;-) but none the less, he only said "da" in the beginning and now he talks -- truly amazing -- I am so very thankful to you!!!!

I am so thankful to have had you in our lives! You will be missed so very much!!

Thank You! Thank You! Thank You!

Tuesday, September 29, 2009

ER Visit

Zach with his Orange Bandage
Last night we had to take a car ride to the ER for Zachary. He was taking a bath and decided it was time to get out. Instead of wanting help he thought he could do it by himself, NOPE he fell and hit his chin on the side of the tub.

Cries, Screams, Blood, Pain

Poor Zach was not a happy camper and was giving Mommy the go around as I was trying to look to see how bad it was. He wouldn't let me get at it to clean it either. As soon as Daddy showed up he put on a brave face and allowed him to do what Mommy had been trying to do for over an hour. Zach even giggled while Daddy was checking it.

We made it to the ER about an hour and a half after Zach's fall - with him still bleeding BUT he was in good spirits playing while we waited.

After all was done he ended up with 4 stitches, a cool orange bandage, and a grape Popsicle (one for Zoe too).
I will take him on Monday morning to the doctor to have them removed.

Poor Zach...it sure has been a busy week for him. I'm so very proud of how well he handled it all though!

Monday, September 28, 2009

Quote

Around here, however, we don’t look backwards for very long. We keep moving forward, opening up new doors and doing new things… and curiosity keeps leading us down new paths. Keep moving forward!
~Walt Disney

Saturday, September 26, 2009

Well We Have....

Yet another issue on our plate, and as simple as it is....I'm just having a rough time.

Zach's appointment with the ophthalmologist was yesterday and it went okay. We went in he looked him over briefly and said "Everything looks good from here but it is best I get a better look" so the nurse came in and gave him the drops to dilate his eyes. Zach handled it like a champ.....no tears, no fussing....he was just Zach. I really need to start getting pictures, the surprised look in the nurses eyes are always priceless followed by "WOW I've never seen a kid react this way!"

We waited the 30 minutes+ to be seen again.

Zach went back and they stopped at a machine to look in his eyes.....he was good and did what he was told.

Then when they took us back into the exam room he sat in the big chair all by himself. They put silly looking glasses on his face. I've been to this same doctor 2x a year for the past 5 years with Zoe and have never seen these. That was when I knew something was going on.

The doctor came in and I felt bad for him......he seemed like he was having a hard time telling me something was a miss with Zach's eyes because of all the rest of what we deal with, he didn't want to add stress.

The good news....his eyes look fine.

The bad news......in the past year (Zach saw him Aug 2008) his right eye has developed a pretty bad astigmatism. Zach now must wear glasses so he doesn't get lazy eye.

Glasses are truly no big deal. We went and picked out his frames, they'll be ready in a week to two.

I know this is no biggie and so many people have this and wear glasses (heck I had glasses for years before I had Lasik) I just feel like so much is happening all these things just feel like they are piling on me.

Thursday, September 24, 2009

Forgot About Tomorrow....

I've been going threw so much with the kids I just about forgot what tomorrow is....

Tomorrow is the day I've been waiting over a month for....the day I take Zach to the ophthalmologist.

He has seen this doctor one time before, close to a year ago when he was going threw all his genetic testing they wanted him seen. His appointment was good then, all clear, his eyes were okay except for bear tracks which the doctor said wouldn't hurt him.

Tomorrow is a really big deal for me. I've been so worried about his eyes....he is having issues that seem painful but since he can't tell us that we don't know. He can not focus on things and when asked to do so he rubs his eyes, blinks a lot, or looks away. After a session of OT where he is working on visual tracking he will sleep for hours (upwards of 5 hours). It makes it really hard when you have a child who is unable to tell you how they are feeling or what they are seeing.

We need to make sure if this is his eye sight or visual issues with his SPD.
I'll blog tomorrow when we know more.

A Little Dose of Happy

I'm thinking I need a little pick me up today....a little reminder of all the good things.

I'll start with Zoe....

Zoe is doing GREAT in school - although she likes to tell me it is boring, she is excelling in all areas. She was put in the highest reading and math groups in her classroom.

She received her interim this past week and it was all positive -- this is what Zoe's teacher had to say.... "Zoe has had a great start to First Grade! She continues to progress in reading, math, writing, and social studies. Zoe puts in a lot of effort to her work and completes all of her assignments on time. She is a delight to have in class. Zoe always has a smile on her face. I can hardly wait to see how well she does during the remainder of the school year."

This week in her Tuesday folder were tests from the week before and no surprise there she had 2 math tests both with 100% and another spelling test with 100%. So far she has had 6 tests and all six have had the same grade 100%. I know it is first grade but I sure hope she keeps it up and enjoys learning. The smile on her face when she shows me the tests is priceless - she beams with pride.

Also this week Zoe was Soaring Student of the week. This was the first week of the school year for student of the week. Every week the school will recognize Soaring Students. Today she gets her certificate and is happy to be on the school news for all to see.

ONTO Zachary....

He LOVES school! I'm always hearing about his teachers these days :)

Health seems to finally be on track and I couldn't be happier. There is little worry these days, his g-tube is helping him far beyond where I thought it would!

ST, I'm not to sure how it is going in school BUT private therapy is going GREAT. He has so many more words and sounds. He struggles at times where his SPD kicks in and he is becoming much more of an articulation kid but to think of where he started this journey -- it is just amazing to me his progress!!!!

OT, of course this is going well. Zach still has a very long way to go but again to think of where he started to where he is now --- it is like I'm living in a dream!!!

There it is my little dose of happy for the day :)

Wednesday, September 23, 2009

New News....Again A Wait.....

Just a quick little bit to let some steam out.....I really should think first but I just need to write (just a little)

I received a call from Zoe's pediatrician today.....the blood tests are back. She said she thought they looked okay but really wants to hear from the endocrinologist because levels very so much and based on age and all. She told me to keep trying to get in sooner to the endo - I called and so far that isn't looking like it is going to happen.

The bad news is that Zoe's WBC is low.....again! It isn't fearful at this point BUT is is NOT where it should be. My very first question was "Could WBC being low have anything to do with all the other things going on....having signs of puberty?" She told me "no" BUT I can not shake this feeling the WBC count has something to do with something that isn't good that is going on.

For now I wait more and watch Zoe a bit more closely.

Tuesday, September 22, 2009

Here We Go Again.....

With the waiting......

Yesterday I got a call Zoe's pediatrician had spoken with the endocrinologist on what tests to run. I picked up the lab request as soon as I got the call. Of course I researched all the tests...mainly they are a bunch of crazy hormone tests, some thyroid stuff, CBC, and a metabolic panel.

This morning I took Zoe to the lab before school. She was not a happy camper and as soon as we pulled in realized Mommy hadn't put numbing cream on her arm --- she FLIPPED out! Zoe refused to get out of the car, I had to lift her out --- not easy to do with a 50+lb, 4 foot, 6 1/2 year old. As soon as she was out and in the door the tears were falling. The same tech was there that took care of Zoe for those 2 months back in June, she was truly amazing and knew who Zoe was and just what to say to her. This time Zoe cried the whole time we were in there, no matter what the tech said or did.

When all was done -- 7 tests were ran and 3 vials of blood were taken. I promised Zoe a treat so we stopped and McDonald's for a yummy breakfast. On our way out we picked up a new Scooby Doo movie and Zoe finally started to get a smile on her pretty little face. I dropped her off and school and now we wait to hear what the blood work says.

I sure hate these waiting games..........here we go, it has started all over again :(

Friday, September 18, 2009

New News...Not So Good

I hate writing this, it breaks my heart! BUT i need to get it out and this is where I do that.

It breaks my heart that this is not about Zach but about Zoe and her struggles we are facing. How much can we handle?!?!?

I noticed a while ago something was amiss with Zoe but I chalked up to some kids are just that way......

First thing we noticed was Zoe's smell -- just like an adult. My mom told me I was smelly as a kid too.......so I let it be.

Second thing we noticed was all the leg hair........I don't remember being that way when I was a kid.....so I let it be.

Third thing we noticed was just this past weekend.........she is starting to get hair under her arms........this I knew could not be right so I checked further......

Forth thing we noticed was the start of pubic hair........now I know this isn't right at 6 1/2 years old.

I took her to the doctor and had her look her over........we were not seeing things.

The doctor sent us right to the children's hospital for a quick x-ray of her hand and wrist to determine her bone age. Then we waited for the test to come back........not even 24 hours later the results were in - her bone age is older then it should be :( This is not okay!

I go the call and was told to get in with the endocrinologist ASAP. Too bad the first appointment isn't until November 16th.

We are headed to the pediatrician today for Zach's 3 year check up and also another appointment for Zoe. As far as I know the next step is plenty of blood tests to see what is happening with her hormones.

From what I've been told this seems to be precocious puberty http://www.mayoclinic.com/health/precocious-puberty/DS00883
Now we wait for all the next steps to be taken to stop whatever is happening to my little girl!

As I sit here I wonder if back at the end of the school year when Zoe was so sick, if her low WBC count had anything to do with this. I have so many questions that I have to wait to get the answers.

Please if you pray say a little prayer for her! If you think positive thoughts please send her good vibes! I know this won't kill her but I also remember just how hard puberty is to go threw and I know this is NOTHING a 6 1/2 year old should have to deal with -- she is just a kid, and deserves to be just that ---- a kid....for as long as she can!

Zach's 3rd Birthday

Yesterday was Zach's 3rd Birthday and What a Day it WAS!!!!!
Mommy got to go to Zach's school during centers and play with all of Zach's friends! I brought them a project to do - it was GREAT working with the kids individually to make something fun!
After that I surprised Zach and took him out of school and over to Toys R Us! Zach got a balloon and picked out a gift -- Mickey Mouse Magic Choo Choo.
Then it was home to play and wait for his big sister and Daddy to get home.
Since Zach's can't eat we made a cake with his presents and sang Happy Birthday that way - it was a big hit!!!!
Happy Birthday My Little Man! I'm so proud of you and how you've grown!

Wednesday, September 16, 2009

Yesterday

I had to take a day to think about yesterday, before I was able to write this blog enty -- I really needed time to think. I don't know why...I learned nothing I didn't already know....

Yesterday I was a mess when the lady left our home. I shouldn't have been. One would think I should be numb to things by now -- but truth be told I have plenty of emotions that run threw me!

As far as yesterday she came to the house and started right away. Yet another test, another evaluation for Zach and tons of questions. What upset me the most was this was the same test he was just given by the schools in his Summer Clinic/IEP meeting.

The scores were no different yesterday as they were a little over a month ago but still hurt just as much as they always have to hear. "Your sons cognitive ability is amazingly high!" I hear with surprise in their voices "but when you look here......his adaptive skills, self care, social/emotional, and peer social show where he is severely lacking" their tone changes dramatically to what I perceive as pity and feeling sorry for us. "Based on this test those reasons alone qualify him for school" "then you have his speech and language where he is behind - also a maker for being in the ESE program" I hear (yet again) even though he has started school over 3 weeks ago.

I know we are doing all the right things for Zach and one day his Life's Struggle will be just a distant memory!

Tuesday, September 15, 2009

Waiting

I'm just on here really quick as I'm full of nerves, on the end of my seat waiting.

Early Steps is coming out to the house today to discharge Zachary from their services.
I've never had them come to our home, I've only been to their office. I've never met the woman who is coming to our house before. I've only spoken with her on the phone twice to confirm the visit.

Today is going to be bitter sweet. My baby boy is growing up, so quickly. He will be 3 on Thursday and no more Early Steps ---- I'm so thankful for EI threw the school system. I'm so thankful we will still be able to keep Zach with all his other therapists on top of school in a private setting. I am trying not to worry knowing I am still keeping Zach in all the best hands possible!

Thursday, September 10, 2009

Just Tired

I think it is just one of those days...the type of day where you are just plain tired. It is one of those days where you feel totally drained!

Since my last blog things have been going good....Zach is growing, school is great, same with therapy, Zoe is healthy, her school is going great - we really do have a good life! I think sometimes that is hard to see.

It all started yesterday at OT. Ms. Jerry didn't mean anything by it, she is just trying to help Zachary BUT sometimes I get so tired of hearing what is wrong. It started with a flier for a chair she'd like me to think about getting for Zach to have at home and in school --- simple enough I looked at it, it does seem like it would help him BUT it reminded me he is different.

Then came the "let's get him doing an activity so we can talk" We talked and she handed me 6 papers to go over + we went over about 4 more that she had given to me the week before.

All information to help Zach, all information that reminded me what I didn't want to be reminded ---- we were on such a roll of NICE, GOOD, GREAT, POSITIVE things happening around us that his struggles seemed not to be so bothersome. As if I was at that spot of time I finally felt some acceptance.

They say you go threw the same stages as grieving when you have a special needs child - All the information and talking brought back those stages for me. I'm fluctuating between a couple of these at this point in time.
1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance

I have these papers sitting next to me...reading them over and over. She wants me to pass them along to the school so they can continue to help Zach BUT he is doing so well, I don't want to give them to his teacher - this makes me in denial and at the same time I'm so angry about these papers sitting here staring at me.

Like I said I'm just so very tired right now and one single word she said hit me like a ton of bricks.....I don't know if she is right, I just pray one day we find she is wrong. When I have more strength I'll say that one word.

For now I'm tired an I need my rest.....I have to be strong for Zach, for Zoe, for Doug, for my family and most of all for myself. I can't lose hope and I know I am doing all the right things for my little man!

Thursday, September 3, 2009

Wonderful News

Today Zach had his check up with GI and nutrition and we came home with wonderful news.
It has not even been a full year since his tube was placed BUT his has grown 10lbs and over 6inches in that time!

My little boy is finally, steady on the charts coming in at the 25% for both height and weight!!!! He is now officially on a steady curve.

He is HEALTHY and THRIVING!!!!
This is such WONDERFUL NEWS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Wednesday, September 2, 2009

How To Deal With SPD

In the sheets Ms. Jerry printed out there is also the intervention information that we use on a daily basis. I thought I'd share it so again you can get a feel of A Day In the Life of Zach.

SMD
Over-responsiveness
  • Provide organization/structure and prepare a child ahead of time for changes.
  • Encourage calming sensory events, and avoid "overwhelming" ones (certain fabrics, loud noises, foods)
  • Provide "heavy work" activities and rhythmic exercises during play (swinging) to help system organize and process
  • Use brushing technique followed by joint compressions and/or weighted vests during activities.

Sensory Seeking

  • Use strenuous activity such as pushing, pulling, climbing, roiling and deep pressure for calming and proprioceptive input.
  • Use treats that require a great deal of oral motor control (sucking pudding threw a straw, raw carrots, gummy candy)
  • Have activities available for down-time and use a therapy ball as a chair to increase attention focus.

SBMD
Dyspraxia
  • Provide organization and maintain a "simple" environment free of clutter and unnecessary items.
  • Create a schedule or a goal sheet for positive reinforcement; Use deep pressure to increase body awareness.
  • Maximize child's strengths and minimize activities that require a great deal of motor planning.

Postural Disorder

  • Engage in activities that strengthen the core of the body (lay on floor and dray pictures)
  • Often associated with other sensory areas - focus on activities that target extent of issues.

Tuesday, September 1, 2009

SPD AKA Sensory Processing Disorder

As much as I have days where I just want to forget about some of Zach's issues -- some days there is just no going around what he has.........Like today..........

After I picked him up from school, he made himself so upset because of the different transition he was crying so hard he could not get words (or even a head nod out), crying so hard he was turning blue, crying so hard my boy could hardly breath, crying so hard he puked on himself. Which turned into him crying so hard he was shaking all because of the puke touching his skin.

Let me back up a little to what also happened at school -- it was a little boys birthday and his family came in and threw a little party for him. Zach is not able to eat but they brought in treats (this is fine as Zach knows food is not safe) BUT it wasn't the food as much as the people he didn't know. He asked his teacher if he could go to a different area -- she of course said yes and he went to (what I'm thinking, he's thinking) his quiet spot and started looking at a book but it seems that wasn't going to cut it and he ended up laying down and covering his face with the book. When I told his OT about this she couldn't have been more pleased --- as this is the FIRST time we've seen Zach calm himself instead of shutting down. He was able to know what he needed and figured it out before he couldn't talk -------- Progress is a GREAT thing!!!!!!

Three different issues in one day (and this wasn't all that happened today) reasons to be upset and a child who can not tell you why because they were in a sensory overload is not easy to deal with. Thankfully one issue he was still at a verbal state!

For Zach, what is starting to change with him is that his SPD is not getting much better, in fact I'm seeing days where it seems much, much worse....Today was one of those days!

Ironically at therapy his OT had printed out (before we even got there) the updated information about SPD..... I thought I'd type it up here so you can have a sense of what life is like with SPD -- a day in the life of Zach.........

SPD is now broken into 3 categories (SMD, SBMD, & SDD) of which Zach has 2 (SMD, SBMD).

First is SMD: Sensory Modulation Disorder: Child may "over" or "under" respond to normal sensory events, and/or "seek" or "crave" sensory activities ----- this is then broken down even more into 3 parts of which Zach has 2 ---- he has Sensory Over-responsiveness and he is Sensory Seeking

SMD

Over-responsiveness
  • Also referred to as "hyperresponsiveness" or "sensory defensiveness"
  • Child may respond more then expected, have a quicker response, or a longer response to a normal sensory stimulus
  • May appear to "avoid" certain sensory activities more then a child with normal sensory responivity.

Sensory Seeking

  • Child may be constantly "seeking" or "craving" sensory activities or stimulation
  • May appear more active then other children or be referred to as "daredevils" or "troublemakers"
  • May have difficulty attending to tasks that are not "physically" active (i.e. schoolwork, movies, church)

The next type of SPD that Zachary has is called SBMD: Sensory Based Motor Disorder: Child has difficulties succeeding in daily activities due to underlying vestibular (http://en.wikipedia.org/wiki/Vestibular_system) and/or proprioceptive (http://en.wikipedia.org/wiki/Proprioception) issues. This is then broken into 2 more categories of which Zach exhibits both. Zach also has both vestibular and proprioception issues.

SBMD

Dyspraxia

  • Difficulty with motor planning that is not related or explained by any other medical diagnosis or developmentally disability.
  • May appear with gross-motor, fine-motor, oral-motor activities, or a combination of any three areas
  • Child may appear "awkward" or "clumsy"

Postural Disorder

  • Difficulty with activities that require a significant amount of postural stability and control
  • May have trouble writing, kicking a stationary ball, or feeding at the dinner table.
  • May appear "lazy" or "weak"