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Thursday, December 17, 2009

Seems Like Forever


WOW has it really been since the 2nd that I've blogged?!?! I real do need to catch up....

As usual things around here have been insanely busy. The appointments don't stop, the therapy doesn't stop either, the kids are still kids - school is going well for them both, the puppy is growing, our life is out of control at times BUT for the time being I think I'm at peace with the world around me, or maybe trying to be a tad oblivious to it all during the holiday season. A little peace of mind is a great thing now and again!

I'm sitting here thinking about what has been new.......A bunch has happened and somethings for the time being I'd rather not talk about....I will at some point but for now not talking and trying to forget is a good thing for me.
Let's see...our SLP has gone to Zach's school to observe him in that environment. Her report is interesting to say the least. His OT has run some more tests...again more interesting information has come out of that. His pediatrician is working on getting him in for a psychological evaluation. We are talking about buying an AAC devise http://www.orin.com/access/Proloquo2Go/ because he will no longer talk when he is uncomfortable - he totally shuts down and is not in his own body. We were just at the allergist, who for right now is just going to let Zach be Zach but in April we will be running more tests :( We have many more appointments lined up (as normal for us).
I've been quiet.....I've been quiet, because some of the things going on simply aren't easy for me to deal with.

Wednesday, December 2, 2009

A Boy, A Girl and Their Puppy

Meet Otis - He is our new family member.....

A Boy and his Puppy...best of friends already...

Otis and the kids checking each other out...

A Girl and her Puppy....trying hard to get Otis to walk on his lead...

Bath time for the kids, but guess who wanted in.....
So far Otis has been the best thing to happen to our family in a long time. He is proving he is an amazing companion for all of us, most of all Zachary. When Zach wakes up in the morning, Otis comes right up to him and rolls onto his back for a morning pat :) Doug and I can tell there is a different vibe in the house...much less stress, which is surprising for having an eight week old puppy.





Thursday, November 12, 2009

Slight Update On My Last Post

I had a nice long conversation with a good friend of mine today who is a counselor. I was asking for her opinion on Zach and if I should have him evaluated by a psychiatrist. She thinks no to a psychiatrist but YES to a psychologist after I give him some more time to adjust since he's had so many changes lately. Her idea is to wait until after the New Year if he is still showing no signs if improvement with taking in social situations or more regression.

She knows and works with many child psychologists and is going to ask for ones opinion this week. Zach is so young and most won't work with kids under 5.

She also thinks that his OT had her disorders messed up and that she may have meant he may have a dissociative disorder (http://en.wikipedia.org/wiki/Dissociative_disorder) which makes more sense with all his other issues and things he has been threw in his life. She was also saying it seems as if he has sever anxiety -- which also makes plenty of sense and falls in line with the selective mutism. She also reminded me Zach is a very smart little boy and may be more aware then what I think of the way he speaks (which is not clear) and that could yet be another thing that triggers the social issues.

AHHHHH there is just so very much to my little man -- he by far is a very complicated little person. I'll go back to what I said earlier today ----- I will not lose hope, one day we will find an answer!

Wishing I Had More

ANSWERS!!!!

I wish I knew what was really wrong with Zachary. He has so much going on but lately more seems to be coming to light and it is so very frustrating.

This past weekend we took Zoe to a birthday party, normally we would know more people there then the birthday family but this time our other friends were not there. There were over 11 children plus the parents and out of that we knew 7 people (3 adults and 4 children). While we were there Zach would not speak a word, would not make eye contact (I got him to make some with me and he would whisper to Doug and I but that was the extent of it). We stayed on one side of the room to make Zach feel more comfortable and in his own space.

A little boy (about 3-4 years old) came up to Zach and was asking Zach his name. Zach kept backing up away from this child as the child would move closer to Zach. I let him be to see what would happen BUT Zach got cornered and his face turned pale as his lip started quivering so I grabbed him and placed him on my lap. Zach immediately turned around grabbed my neck tight, laid his head down and cried (a silent cry). I told the little boy his name was Zach and he was a bit shy. The boy looked at another kid and shouted "This kid is weird!" Those words keep echoing in my brain -- what I wanted to do/say to this child I had never met...well, I'm sure you can imagine. AND what did the parents do about it? ABSOLUTELY NOTHING! Now, granted I don't know them and they don't know me or Zach's situation but still you would think a gentle "that wasn't nice...say you're sorry" would have been interjected in this scene. Then again what could you expect from a couple who were standing across the room from us -- after the incident --- and I hear this coming from the mom.........."What is the deal with the people who's son won't talk?" HELLO Lady I'm right here ask me or for god sake don't talk in the loudest voice possible!!!

The nerve of some people will never cease to amaze me. Maybe I'm a bit too sensitive to this scenario as it plays out around me time and time again....I simply can't get used to it.

Then Tuesday at OT I brought what happened up to Ms. Jerry (who, rightly so, has become more concerned about Zach's social issues - since they are happening more) We decided it would be best to make Zach some social books that we right and put pictures in so that he will understand. The first book is called "Making New Friends: A Social Story" it is cute and simple but Zach hates reading it. To me it seems even taking about this puts him over the top.

Wednesday came along and at OT Ms. Jerry says to me that she is "Very concerned about Zach's social abilities" and that when we came to her when he was 18 months old she noticed then how disconnected he was. That by now he should be getting better - but he is not he is getting worse (only when not in a familiar situation or comfortable setting) she brought up "attachment disorders" and us taking him to have him evaluated by a psychiatrist - to see if this OR something else is an issue.

Ms. Jerry said "one good thing is he won't talk to strangers" - she was trying to make me feel better. I reminded her that there is a HUGE negative to this all too.........that if someone were to take him he also wouldn't scream or cry or yell or fight back. This is when we started talking about getting him an ID bracelet - the conversation quickly turned into placing a chip in my child as some people do with extreme situations. She said our case is an extreme situation :( I just want to sit and cry.

It is already hard knowing there are issues but with Zach having progress in some areas and not in others (in fact getting worse in other areas) it is really hard not knowing EXACTLY what is wrong with my son. As sad and frustrated as I am right now....I will not stop holding out hope that one day we will know more about Zachary.

Wednesday, November 11, 2009

Meet Otis


Meet Otis, he is our new family member (he comes home the day before Thanksgiving)

We have been contemplating a puppy for a long time now.

What was stopping us from getting one you may ask.....well first and foremost both Zoe and my husband are allergic to dogs. Secondly we've always wanted a big dog and there are not many hypoallergenic big dogs out there.
That leads to what made you decide on getting one then.....well, we decided it would be best to get one because of Zachary. Our breeder will take the puppy back and refund 100% of our money if Zoe can't handle it (but to be safe we have gone and played with the big dogs and puppies multiple times and no reactions from her) Plus he will be a large dog - about 70lbs - he is a Labradoodle, so he is hypoallergenic (we also made sure he would have a curly coat which is better for allergy sufferers). The other positive to getting this type of dog is they make excellent therapy dogs - which is another reason for getting him. Not only can he help Zachary but he may help others.
While we were at puppy pick day Zach had fallen and was crying. Otis came right up near him, sat down, and started whimpering as if to say "are you okay?" This sealed it and we new he was 100% the one for our family at that point.
The kids and I are trying to get another puppy too (the husband really wants her too - but can't make up his mind) --- his sister. I'd hate to separate them. If we get her, I'll put pictures of her on the blog too.

Monday, November 2, 2009

Update on SLP Testing

It had been a long while since Zach's old SLP ran the Kaufman Speech Praxis Test For Children (KSPT) on Zachary. She kept saying that she felt his Verbal Dyspraxia was getting better.

Well....the new SLP, Ms. Andrea did not feel the same way. She kept saying that it seems like it is still there with other components as well -- the dyspraxia, the VPD, the major articulation issues, the selective mutisim. So last week she decided it was time to run the KSPT again. Zach did great, he sat threw the whole test like a champion! -- That was Tuesday.

On Wednesday the test was scored and we were able to go over it. HUMPH!!! Ms. Andrea was right his verbal dyspraxia is still there (not like I didn't know it -- but honestly you get your hopes up when someone says it is going away) Not only is it not going away and just becoming an articulation issue BUT it is still very prevalent and as she said "in some areas - yes it is getting better, almost what I would call a mild case but in other areas I can't call it mild - it truly is still a moderate to sever case of verbal apraxia" :( His scores were not good and placed him at about the 14% for children with apraxia and 2% for children without it - giving him and age range of slightly over 2 years old --- this means he is still a year behind on his speech (as far as the apraxia is concerned)

This whole apraxia issue has always been rough to deal with but as he is getting older I'm learning there is so much more to it then the times he cannot speak....the articulation issues are awful and we are starting to believe that is why the selective mutisim is coming out. I've been told this is common - the child is aware of what they can and cannot say and so they just stop talking. We also know the VPD doesn't help with the articulation - in fact it makes it worse and harder to overcome because he can't use the muscle properly. The positive is if/when he feels safe and comfortable, he can and will talk, just not clearly.

Please help support The Childhood Apraxia of Speech Association Of North America (CASANA)
I started this page a while ago in Zach's honor.....there is not enough known about Apraxia and so many children looking for help to find their voice while others around them simple have no idea this exists. http://www.apraxia-kids.org/faf/donorReg/donorPledge.asp?ievent=112756&supid=238562629 Zach is just one of the many faces of dyspraxia.

Thursday, October 29, 2009

It's Buzz


This picture was taken in Zach's classroom today. Just wanted to share. I know I will have many more Halloween pictures of both the kids come Saturday.

Wednesday, October 28, 2009

Zach in Action

This was Zach in action today during Fall Centers. He seemed to have a lot of fun with the pumpkin painting -- Thanks Ms. Tara!

Yesterday 10/27/09 Another Day Another Appointment

AND of course new news......

Yesterday was Zach's follow up with his ENT. It had been close to 6 months since we had seen the ENT and at that point Zach's tubes were on the way out of his ears so with this appointment Zach had to have his hearing tested. In the past he had major issues with his hearing where he was losing it....this was before his tubes. With all his speech issues our ENT will continue to check his hearing on a regular basis.

First stop audiologist, I am very happy to report his hearing checked out just fine!

Then it was onto the ENT. The appointment proved too much for Zach with too many people in the room (our ENT had an intern shadowing him + his nurse who always comes in). Zach would not talk. The ENT checked his ears and the tubes were still just hanging out in his ear canal. They at this point were serving no purpose so out they came.....no complaints from Zach and a "WOW you are a good kid!" from the doctor.

I was able to bring up something our SLP has been wanting me to ask about - Zach's speech has become very nasally sounding, too much air is getting in as he makes most letter sounds. This was a challenge for the ENT because Zach wouldn't talk and he needed to hear his voice to tell me if this is what he does or does not have. Thank goodness for the amazing nurse who was really good at bribing Zachary into talking - just a couple words for her. The doctor was typing away on the computer and ignoring Zach so he would continue to talk. After some words came out the doctor spun around and said Zach has Velopharyngeal Dysfunction: http://www.cincinnatichildrens.org/svc/alpha/v/vpi/about/vpi.htm
For now we must watch it, as he is too young for the surgery to repair it - but chances are he will get the surgery at some point. The ENT said "Speech therapy, speech therapy, speech therapy! The more the better at this point - it can't hurt and now we know he has VP, we can hope the ST will help to repair it"

So there it is, another appointment and of course, as always.....something new in our lives to contend with. I just wish all these diagnosis we have would add up to one thing so we know what is going on. I was told to make sure we let our geneticist know about this one.

Four months and we will be back in the ENT's office following up on Zach's new found diagnosis. AHHHH more appointments JOY! (yes this is sarcasm ;-)

Monday, October 26, 2009

The Side By Side

Morning of Surgery 10/23/08Six Months Later 4/23/09
One Year Later 10/23/09
I know the last picture isn't the best....Zach did not want his picture taken (at all) BUT it still shows how much he has grown ;-)
Have I said it lately --- I LOVE his TUBE!!!! - Zach too of course.

Friday, October 23, 2009

WOW Time Flies!

I totally forgot that it has been one year today since Zach's g-tube was placed.
Here are some pictures from a year ago....when he gets home from school I must get updates so I can place them side by side. WOW a YEAR -- really, a year, SO soon!

The Morning of the surgery 10/23/08 - this is where it will go Waiting with Daddy @ the children's hospital
The worry right after surgery...Mommy & Daddy will never forget about this moment (picture or not) - they were not so sure how I was going to make it because I could not keep my O2 at a stable level.....Mommy & Daddy waited for over an hour after my surgery was over and then were called back because the nurses in recovery wanted to see if having Mommy & Daddy with me would help me (everyone was worried and on needles waiting to see what would happen)........THANKFULLY it did, but I still need help for the next day and a half with the help of oxygen directly into my nose.
Resting with some heavy duty pain meds
Resting with the help of oxygen - I could not keep my O2 up for the first day and a half
My first feed

Life's Challenges

Sometimes life throws challenges our way and we don't know why....sometimes inside those challenges may lie great rewards - if only we are patient and wait while the world spins around us.
Right now a new (not really so new, just becoming more so) challenge for Zachary is the inability to talk when his anxiety gets too much.
His day was very stressful yesterday but little man survived - he is strong!
Here is his day in pictures...

I was so close to talking but my mouth wouldn't move. Mommy was happy because at least I got close to the fireman.I got to sit in the firetruck - but I had no words. Mommy knew I was happy inside.
The fireman helped me out of the window when the smoke filled the house. Mommy said I was brave even without my words.
This is Mrs. Debbie - she had to hold me because I didn't want to be there. I couldn't talk and had to leave my Mommy so she could take pictures of all my friends and I.
We do lots of work at school - this is my H bookFor Zach, yesterday was a challenge one he overcame throughout his day. Yesterday was fire safety day at school. Zach did not want to take part in it but he did and later that day came back to himself. Until a surprise fire drill alarm rang at the very end of the school day. He was quiet when he got home, but quickly came back.

Wednesday, October 21, 2009

So Much Going On Around Us

AHHHH it has been a whirlwind lately.

We changed Zach's IEP - this is good and I'm happy with the added goals. We've changed Zach's feeds at school and the past 2 days he has decided he'd rather be quiet. What we are left to figure out was the feeding schedule enough to throw off his SPD and put him into his minor shut down mode OR is this something more. We've had some issues with his gastroparesis flaring this past weekend - YUCK the mess in the middle of the night is never fun! I was thankful it had been so long we'd forgot - guess someone thought we needed a reminder of how sick Zach is.

I had a nice long talk yesterday with his new SLP (Ms. Andrea), his OT, and another SLP who works at our therapy place and also our school district. They've come up with a couple different things.....one, let's see how he does the rest of the week.....two, lets get him on a visual schedule while at school....three, is this a possibility he is having issues with selective mutism (http://en.wikipedia.org/wiki/Selective_mutism).... and fourth, if Zach is refusing to talk he must at least acknowledge the person with an eye glance, wave, smile --- something more socially acceptable. We don't know what is going on and I guess this is another moment in life we take a semi lets wait and see stance.

Yesterday Ms. Andrea and I also had a talk about what is going on with Zach from her stand point. He has been showing many more signs of his dyspraxia during his sessions with her, so next week she is going to do another test for apraxia --- it has been a while since one was given. She wants to do it to see just how bad it is right now. He is also having a VERY VERY rough time with his articulation....when we notice and try to fix what was said wrong at home and at therapy - he stops talking for us. This is something we must worry about and something we don't want to happen --- this is where Zach may really be showing signs of selective mutism. Ms. Andrea said that if you take a child like Zach who has the dyspraxia, has the major articulation issues that these kids are the ones more likely to just stop talking altogether simply because they are frustrated and they feel no one understands them anyway. She is also worried about him because of how nasally he sounds and wants that looked at by his ENT.

Next Tuesday we do have a scheduled appointment with his ENT, so that couldn't come at a better time. I know the ENT had said at this appointment Zach must have his hearing checked again. I told Ms. Andrea and she was happy about that because some of his articulation issues can come from not hearing right.

I don't know anymore, I swear if it isn't one thing it is another these days. Heck, if we didn't have the Life's Struggles that we do -- life may be just too boring for us.

Wednesday, October 14, 2009

So Much Going On

Yesterday was Zach's second session with Ms. Andrea. I'm impressed he is doing well with her, he definitely exceeded my expectations with her. She has suggested we go back to adding more ST. If you remember we had to cut time because of school and his old SLP only working 2 days a week - she only had one slot for him. She is going to up his time slowly since he has so much going on with therapy and school. Starting next week we are going up to an hour, then as he proves he can handle it we will keep adding. She is hopeful to get at least 2 hours a week, but really looking at 3-4 hours.
He will still have ST in school as well. I always say the more the better - heck if Zach never had all that he has I know he would not be where he is now!

I really want to thank someone - someone I've never met --- for giving me some information, and leading us to looking more into Zachary's situation. Her name is Elise, I don't know her in person only from the computer BUT I know enough to tell you what an AMAZING person she is! She shared with me her daughter's story and I shared with her Zach's story. Elise has been reading my blog and as she does similarities pop into her head. She brought up Autonomic Dysfunction (or dysautonomia: http://en.wikipedia.org/wiki/Dysautonomia) I had never heard of this before Elise came into my world - she shared this website with me: http://pediatrics.med.nyu.edu/dysautonomia/autonomic-disorders As I read it there were very many similarities almost uncanny to Zach's issues. I went to the pediatrician and had a little chat with her today about this. She agrees that Zachary has many Autonomic symptoms and has decided because of his regression and some other issues really coming into focus that we are going to look more into this as maybe being an official diagnosis. She is contacting our neurologist and the geneticist and we will see them as soon as we can get in.
THANK YOU Elise --- I think you helped to find something we've been searching for -- a possible diagnosis, this is huge! THANK YOU I can not say it enough!!!!!

Not 15 minutes after having this conversation with the pediatrician today....I step in my door and the phone rings....it was Zachary's school nurse who says "Zach fell really hard out of a chair onto the back of his head - he stood up and sat down like nothing happened. He didn't cry until his SLP asked if his head hurt." "Sophie, I don't think he feels any of the pain - and it was clear that it was a very painful fall" ----- She doesn't even know what I'm talking over with the docs. She asked where he hit his head and he points to the front (when nothing hit the front of his head) She said he seems okay - no blood, no bump. She is keeping an eye on him as he won't let her leave him because he has a death grip on her neck. Zach is not crying and he is not talking - he is in a nonverbal state right now. I'm so thankful for his school and the nurse - they are all amazing. OH and so you all know not feeling pain is just one of the symptoms of an Autonomic Disorder - This has been something we've noticed for a very loooong time with Zach but chalked it off to "oh it is just his SPD kicking in again"

I'd just be really happy if life could STOP -- just for a day -- I want a normal kid, just for a little while.
I'm going to stop to breathe for a little while.....I need to stay positive and the positive for this situation is having a new friend come into my life, to give me that push, to bring another idea to the doctors that can't figure out my son. The positive is we may be onto something!

Tuesday, October 13, 2009

IEP Re-Do Take 2

This will be the week (okay maybe I should knock on wood here) that Zach's IEP is rewritten.

Since we couldn't go last week his teacher sent home what she had already written up for him. I went over it and it looked really good. I needed to add and change a couple things but over all it was MUCH, MUCH better then what it started as.

Doug and I will go in on Thursday at 3pm for the meeting. Hopefully this time everyone will stay healthy and the meeting will go smoothly ;-)

Saturday, October 10, 2009

Big News! Exciting News!

My MIL and I started a little company called My Button Buddies (www.mybuttonbuddies.com)

Earlier this week I was contacted by about.com for an interview to be featured in there parenting SN section -- in the enterprising parents, it is a section for moms like me who have a SN child and start businesses to help other families with SN children.

I have to pat MIL and I on the back I'm very proud of us and so far the response about our pads has been wonderful!

Here's the link http://specialchildren.about.com/od/medicalissues/p/ButtonBuddies.htm

Our New Minor Struggle

I'm still really goofy!

Yet Mommy says I look like a smarty pants

The Minor struggle is keeping the glasses on Zach face.....if anyone has any tips I'd love to hear them ;-)


Monday, October 5, 2009

The Stitches Are OUT :)

This morning we took Zach to get his stitches out.

Again I was amazed at what a trooper he is! Daddy sat on the bed with him holding him at his legs and mommy was at the top of the bed holding his head still for the doctor. I'm really not so sure I needed to be doing it. He didn't move not one inch, he didn't cry, he didn't scream, he didn't react to anything.

It reminded Doug and I of the time Zach was in the hospital getting his g-tube placed and the surgeon came in to remove the bumpers from around the button. He just didn't feel anything - or at least that is the was it appears. When the doctor was done he was in udder shock and told Zach "You are one truly amazing unique little boy!"

The pediatrician said she's never had a little one act that way and that this is what happens when SPD is so sever.

As much as I hate the fact Zach's SPD is so sever I guess I have to admit it does has one up - or at least it would seem that way - heck I know I would have been scared but I would have reacted to it, Zach...nope not Zach he goes inside himself. To us that seems so much better but is it really better?!?!

The only thing that was said afterwards was "I no dalk in dool doday" (I no talk in school today) and when we dropped him off sure enough he didn't talk - it was really hard to watch especially as he cried while we left the room. I'm sure he is fine or the phone would have rung already.

Friday, October 2, 2009

IEP Meeting On Hold

I've had to put the re-do if the IEP on hold for the time being....
Zoe got sent home from school early for "flu like" symptoms. I took her to the doctor and she believes it is just her allergies and asthma flaring.
In the mean time her fever has gone up but not by much and I feel more comfortable with her staying home to rest.

Thursday, October 1, 2009

IEP Re-Do

Tomorrow is yet another big day in the life we live.

Zach will go to school, Zoe will go to school. Mommy and Daddy will go on with our day like normal until 2pm when we will pick up Zoe and head over to Zach's school.

Tomorrow is the rewriting of Zach's IEP. I'm feeling pretty good about it. Because it is at 3pm I'm hopeful it won't last 6 hours like the last one did. I'm hopeful all will go well. I'm prepared and like knowing this one is not as formal and more comfortable then the last one.

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"

Thursday, August 27, 2009

No Tears

Even after the morning woes Zach had a great day at school.......

I am happy to say he had NO crying AT ALL today while at school YIPPEE!!!! That makes me feel so good! Especially after the morning we had with him.

Now if only we could have his afternoons at home go more smoothly, but I guess that is going to take some adjusting.

Morning Woes

Yesterday was the start of the Morning Woes......as Zach did not want to go to school. He did end up going and his day went okay. He however didn't participate in circle time, instead he cried. That is okay this was day 3 of school and the first time he did not participate. I believe there will be more days like that in the ,after all can you tell me anyone who hasn't had an off day in their life.

This mornings woe was major crying and not being able to communicate verbally - this always happens lately when his SPD is kicking in. He was able to get out basically that he had no intention of going to school and wanted to stay home. That was followed by "Mommy doh ool?" I reminded him that this was his time to have fun with his teachers and new friends.........this was when the crying really became worse.

Daddy came to the rescue and took Zach to change his diaper and put on his shoes. As they were in Zach's room the bus passed the house, when Zach saw the bus he exclaimed "da bus! da bus! dime do doh"

He walked onto the bus all by himself with a big smile! It was nice to see and even better to hear the aid and driver say how nice it is that he is always so happy ---- HAHAHA if they had only been in our house 5 minutes earlier to witness the Zach we see so often.

Morning Woes.......I'm sure there will be plenty -- nothing that a good, hot cup of coffee won't fix!

Wednesday, August 26, 2009

Happy To Report

Zach Napping @ School

Things are going smoothly around here!


Zach is adjusting well to school - he is good for them and a crab apple when he gets home. I guess that is a plus for his teachers. He has gotten on the bus the past 3 mornings with little to no fussing. I think his favorite part of the morning is waving to the bus as it drives down our court to turn around and pick him up. We had a couple glitches with the bus being late 3 times - but I'm happy to report it was on time this morning.


I am happy to report --- as far as while he is at school his teachers and nurses report he is doing great! He has had a couple of moments, but what kid doesn't. I'm so happy he is transitioning better then I thought he would, just goes to show I should give him a little more credit.


Zach even had his first homework assignment. He has helped to answer the questions, now I'm just trying to get him to decorate the pages for me.....he wants nothing to do with coloring on them. We have until Monday to hand it in.


I was able to go to school yesterday to pick him up....that will be our normal Tuesday afternoon since he still must go to therapy for ST and OT. I volunteered to be photo mom for his class, I took my camera and got some cute pics of the kids sleeping. I'm so happy to report Zach naps without being confined in a playpen!!!! I thought for sure this would be a challenge. He has had a hard time around nap time but Mrs. M has been wonderful and rocks him then lays him on his mat --- he falls asleep there YIPPEE!!!!!!


I'm also happy to report........Zoe is having the time of her life so far! She LOVES 1st grade, even the homework ;-)


All in all I'm Happy To Report --- Life is good and the struggles are well worth it!!!!!!!

Monday, August 24, 2009

First Day of 1st Grade

see my big bag...it is for all my homework
Happy to be going back to school

Mom I'm ready!

My baby girl no longer wants to be my baby as she reminded me today getting ready for school "Mom I am not a baby anymore, I am in 1st grade now!"

First Day of School: Zach

the bus the driver and aid seem so sweet and caring

Zach on the bus: his seat is the first seat right behind the bus driver

waiting

I'm ready now

More waiting: my bag is as big as me!
Today is Zach's very first day of school. Many of you who keep up with me know that Zach is starting ESE Pre-K through our public school system. He will be 3 in September but because of his social delays they decided to start him on the first day of school in hopes he will do better this way.
Zach's day started very early --- 6:15am. He asked me to open his blinds so he could see outside and told me "Mommy not morning yet?!?! It dark outdare" I told him he will be able to see the sun rise while he was getting his feed. As the sun was coming out he said to me "dee Mommy dare da dun, it is morning now" He did good waking so early.

We waited and waited for the bus......it was running late, but finally did show up. Zach was such
a brave big boy. I carried him onto the bus (the steps are as tall as his legs) and the aid put him in his seat. What a brave big boy he was - no tears were shed and he didn't seem to be shutting down as I was stepping off the bus.

I can't wait to hear how the rest of his first day at school went - I was so proud of him this morning!!!!!
My baby is growing up!!!!!!!!

Thursday, August 20, 2009

Quick Zachary Update

We have some positive news and some very unsure of what is happening news.........

Drum Roll Please...................................................



Zachary has graduated out of PT just in time to start school! When he started his journey with Ms. Patty he was 2 weeks shy of turning 2 years old. His Gross Motor skills were at a one year old level. He graduated at 2 years 11 months old (one month before his 3rd birthday) -- JUST 1 year in PT........................ and his gross motor skills were at a 3 year 5 month level! This is HUGE news!!!!

He still has hypotonia, some issues with walking, and some new regressing issues with catching a ball. I was told to keep an eye on him and if anything becomes more of a concern he needs to come back. His PT also really would like him checked by his orthopedic doc and his neurologist just to be sure there is nothing more going on with him. She thought for now it was okay to discharge him into the care of the schools.

His OT has been working on visual tracking because of his poor eye contact. As she has been doing that we are noticing more visual issues occurring. He becomes very agitated and shuts down, blinks, or rubs his eyes. If he has been doing a lot of work with tracking he will come home and nap ----- LOOOOOOOOOOOONG naps upwards of 5+ hours, with me needing to wake him.

Ms Jerry is unsure if this is happening because of poor eyesight or because of his SPD.
I have set him up with his ophthalmologist for September 25th but I am hoping for a cancellation to get him in sooner..........the longer this is going on the worse he is becoming. Today, for example he seemed like he was on total overload after doing some visual work with a computer, he started shutting down, drooling, licking his hand, not being able to verbalize what was happening, crying to the point of not breathing. It took his SLP to pick him up, remove him from the situation by putting him in a little tent area and turning off the lights in the room. It was awful to see..........not only was I concerned, Ms Kristin was worried, and I could see a frightened look on Zoe's face as she watched what was happening around her.

I have to say it has been a while since I have cried at therapy......today wore me out, I cried I couldn't hold back --- watching Zach struggle is so hard to do at times......no parent should have to watch their child go threw the struggles we have seen. Please don't get me wrong....Zachary has come a very long way and I am so very thankful for the progress he has made but all that progress doesn't stop the worry of regression, the worry of further progress. I think today was worse for me because of getting him ready for school -- so much going on right now, so many emotions and worries.

Zach starts school on Monday --- I'm sure I'll be blogging then with pics too ;-)